Undiagnosed Club Support Group

Dayz, that's awful about the hemmies! I haven't had internal hemmies but I've heard others say they can bleed like crazy. I've had external hemmies but those don't bleed, or at least not much. They hurt though, and mine were nothing compared to what yours sounds like! Poor thing. As for feeling feverish but having a temp of 96, that kind of thing happens to me a lot too. Whenever I flare I get very chilled, and I feel like I must have a fever. I could be wrapped up in 10 blankets and have the heat cranked up and I would still feel chilled to the bone - but when I take my temp, it's usually around 97. I don't know why that kind of thing happens, but I feel for you! It's not a nice feeling and it makes you feel like you must be crazy to be so chilled but to have a normal or slightly low body temp. (You're not crazy though because it happens to me too!)

Star, I hope you can get that PET scan! I haven't had one of those and it sounds interesting. Sounds like a test that a lot of us could potentially benefit from. Let us know if/when you have it, I'd be interested to hear more! And of course best of luck on your upper endoscopy tomorrow. I was nervous/not feeling great before mine, and the nurse picked up on it - she said to me something along the lines of, "If you're not having such a great day now, don't worry, you're about to get some great drugs and the rest of your day will be much better, I promise!" And she was right! So try not to worry too much. Yes, there have been some scary upper endoscopy stories on here, but there have also been a lot of good experiences, like mine. I hope yours is one of the good ones too! Lots of luck and keep us posted!

Allie, that's awful about no public bathrooms! I went on vacation to Germany a little over 10 years ago and I do vaguely reall having to pay to use certain public bathrooms (although usually I could just crawl under the door and avoid having to pay, or wait until someone comes out of a stall and then grab the door before it swings shut again). I hope the liquid diet goes well and that you're able to eat solid foods again soon. I haven't had any solid foods yet today either although I'm going to try eating in a little while and see how that goes. I went to that convention thing my husband is running last night because there was a banquet dinner and they had baked chicken. I don't know if it was stress or what (I have been highly stressed lately!), I went home right after the dinner and got hit with nausea & d. It was pretty bad, I only got about 3 hours of sleep last night and I'm struggling to get through the day today. The good news is that hubby said he's going to get a job after this convention is over, so hopefully I won't be so stressed in the near future. Here's hoping!

Hi everyone, had my upper endo and it really was awful. Went for the numbing spray as they said the sedation wouldn't make me sleep and i would be able to feel everything. They were running so late even that early in the morning, should have been seen at 10am and it was nearer 12pm by the time I had it done, which didn't help.

All looked normal as expected, I asked the nurse to show me on my body how far down it went, and as soon as she did that I knew things would come back normal since nowhere near my main pain! Only thing they found was a tiny hiatus hernia, which is quite common apparently. Made the procedure much harder though

They took 4 biopsies and looking at a 4-6 week wait for results. See Rheumy next week.

Now the throat spray has worn off I am so sore there. Going to have a nap.

Needless to say, I am never having another one unless I get a General Anesthetic, no way will I go through that again.

I'm sorry you had such a tough time star! That's really weird that you didn't even go to sleep for a little while. At least its over! Hernias can cause pain too..I wonder if that is part of your issue? They can catch portions of your intestines and cut them off. When I was desperate for answers a year ago I went to an ER that diagnosed me with a hernia (without any tests...I should have been suspicious), and when they did the surgery they found a teeny tiny one. The surgeon was so confused, since I shouldn't of have felt that one at all! They were right all along, and I had surgery for nothing really. Fun >.<. I hope you feel better soon!

Ha ha, Cat I never thought about crawling under or waiting for someone to finish. The last time I tried to use a public bathroom it was an actual person guarding the bathrooms, and my German isn't the best so I got nervous, said I'm sorry in German, and left. >.< It would be a terrible situation if I was desperate!

I still can't eat any solid foods. I had a milkshake earlier, and dairy is usually fine, but I guess the "cookies" part of the "cookies and cream" milkshake was enough for my intestines to go crazy. I went to the store and got more ensure as well as some pure liquid soups and some jello. I really hope this is over soon, because I'm not nauseous, so the hunger is driving me up the wall! >.< I guess its better than the pain of trying to eat solids though, lol.

Cat- check this out

Cat,
Check out this link:
http://en.wikipedia.org/wiki/Gastritis

This is what I have and it sounds very similar to you. :ybiggrin: When I wake up in the morning like you said, my tummy is flat. I eat breakfast if I don't have D and if my stomach is not hurting or I am not throwing up, then I get gassy and burpy. By the time I go to work around 4 pm, my pants feel tight. I have a very small meal about 8 pm, then by 8:30 or 9, I look pregnant. Right now, I have a very angry grimlin living in my stomach. He is grumbly in my tumbly, but it is not cute. :shifty-t: I have gas and I go to the bathroom, and my tummy grumlbes, but I cannot get it to come out. This just happens some days, but that is what is going on with me today- Deja vu.

You may want to mention these symptom to your GI (uummm) and ask him about Gastritis and just see what they say. I am still waiting on my H-pylori tests, and I will let you know what I found out. I think that is what is causing my Gastritis since I don't smoke, drink, use illegal drugs and really don't even take aspirin products. Check it out and let me know if this link matches you in any way. Google other links about Gastritis too and see what you think and let me know!! :thumleft:

UGH- sorry everybody is suffering so much!

Wow, I go out of town for one weekend and don't check the thread, and look what I miss!!! :blush:

Dayz- OUCH! OMG. I am so sorry for your hemmo-troubles! That sounds really terrible. I really hope you are feeling better now. :ytongue:

Allie- sucks that you are having trouble with solids foods right now. Do you have 7-Elevens in Germany? or any other place with slushie drinks? When I am having my vomiting and nausea fits, I find that the only thing I can hold down are slurpees and slushies. They are soothing and filling at the same time and are just ice and sugar. Taste great and will keep you from being so hungry. If not, can you find popsicles? Or frozen lemonade... stuff like that? :wink:

Star- my upper endoscopy was last Thursday and they put me to sleep for it. They sprayed my throat with the numbing spray for the tube, and then they shot my IV with the good stuff and it was nighty-night. Were you awake??? OMG- are you kidding? I would have died from being so scared!! I vomit so easy, I would have choked to death. Please let me know- I am so sorry for you that you had a bad experience and that you STILL don't have answers! :ywow:

Cat- how are you doing? I think about you all the time, hoping you can find out something. Look up the link I sent you on Gastritis, and let me know. My EX boyfriend was really into OPG (online player games) and I never understood them and they made me CRAZY. One reason he is my EX now. We just didn't get each other. I hope things get back to normal real soon for you and that you husband GETS A JOB. Hehe

Yes I was quite awake and it was not a nice experience. I got offered either sedation or the throat spray, both would have been nice! Sedative drugs seem to vary hugely between the UK&USA. I think you guys have the right idea! I mean the nurse was really nice and held my hand the whole way through, and I held hers lol, and when I could concentrate on my breathing that was not so bad, but the sensation of it being in my mouth wasn't nice and the hernia meant that the air they pump into the stomach reacted quite badly.

They told me the sedative wouldn't put me to sleep and i'd be able to feel everything, so I thought it wasn't worth bothering. I couldn't feel when I swallowed the instrument but I did really feel the tube sitting in my mouth Wanted to rip it out once or twice I tell you.

And to add insult to injury, I had to walk to the recovery area, so had to get off the bed, and sit in a hard chair to recover! You only got a bed it seems if you had the sedative.

Throat still sore today but not as bad as yesterday. It's messed my sinuses up too, got earache on and off plus nasal congestion.

As I said, *if* there is next time I will only consent to having it done if I am knocked out!

Also I said 4-6 weeks for biopsy results, but my colonoscopy results took 4 weeks and that was with at least a week's worth of holiday's over xmas/ new years. So hopefully back sooner.

Well, I'm slowly eating solid foods again. I'm being really careful of it, definitively low-residue type stuff, and I'm seeing how it goes. I had mac n cheese last night (pasta is one of my safe foods) and things went well. Thank goodness!

Shan, thanks for the tips. They sell slushies at this place on base but I haven't tried it yet. We have popsicles here, along with the usual jello, pudding, ensure, and yogurt. I figured out that I have to drink constantly to keep full. Not fun!

Star, I didn't realise you chose between them! I agree with you though, medicine can be much different from country to country. Both of my upper endoscopies and colonoscopy was done in Germany by Germans. One, the way they prep here is a nightmare. They just make you drink mineral oil..never again will I do that. ~.~ The meds they gave me at each procedure knocked me out fast, but I wasn't given the choice of that or a spray. I guess they didn't give you a bed because you were awake so you could walk, but I bet it hurt. In the german clinic last December I was just pushed up against a wall to recover to the point where I could walk, then I just left.

Star, that's awful, I didn't know you had to pick between the sedative and the throat spray! I'm so sorry to hear you had such a bad experience. If it was twilight sedation that they offered, they shouldn't have told you that you'd be awake and would feel everything - I had twilight sedation and it felt to me like I was completely knocked out and had a lovely nap. Unless there's different types of twilight sedation and the kind they usually use in the UK is different or not as good as the kind that's used here? I don't know, I'm not sure the name of the sedation I had, but I've had it twice, for scopes from both ends, and both times it just felt like a nice nap and I woke up feeling pretty good.

Shan, you mentioned popsicles - has anybody else tried pedialyte pops? They're very similar to those freezer pop things but they have electrolytes in them. I found them at Target in the baby section and now I always keep them on hand. They're great, they taste like regular freezer pops but they've got electrolytes so I feel better about eating those as opposed to the ones that are just sugar & water. They're lovely especially on a hot day when I'm sweaty and/or having d.

Oh, and Shan, with regards to the gastritis - yes, I've got that. I had a really bad episode of gastritis back in April which my doctor said was probably either triggered by my acid reflux or possibly by the steroids (Entocort) that I was on. Ever since that episode, the bloating has been worse. My usual pain is in the lower-right part of my abdomen, but sometimes I do get pain a few inches above my belly button so when that pain hits I know it's the gastritis acting up again. My best friend has crohn's and she's had issues with gastritis as well, and she told me that gastritis never really completely goes away. So if the bloating is tied to gastritis, which I suspect it is, it sounds like there really isn't an easy fix for it.

Allie, glad to hear you're starting to eat solid foods again. Mac & cheese is one of my safe foods as well! For some reason the microwavable instant "easy mac" kind is even easier on my stomach than regular mac & cheese. I think it's because my hubby uses a little real milk/cheese when he makes the stovetop version of mac & cheese, and I can't handle dairy - but there's nothing even close to real dairy in that easy mac stuff! Anyway, I hope you continue feeling better!

As for me, I'm actually doing pretty well finally. It took a full 2 weeks for me to completely get over the side effects of that awful Hyoscyamine stuff I was on - I was still pretty nauseous on Monday, but yesterday and today thankfully I haven't been nauseous and have had more of an appetite and am eating fairly normally again. I even went to the gym yesterday and worked out, that felt great! Hubby's convention is over so we're both less stressed now and life is getting back to normal, and Shan you'll be happy to hear that he is looking for a job. We have to do some massive cleaning and organizing first though. People came to this convention from all over the country, and they brought with them random stuff that they thought would come in handy for the con, and then a lot of them didn't take their stuff back home with them. So all that leftover stuff came home with us and we're sorting through it. We got huge boxes of paper, fabric, craft supplies, etc. And some random stuff that makes no sense to me, like 5 rolls of aluminum foil. Why would you need aluminum foil for a scifi/fantasy con? And why would you need that much of it?? I have no idea, but I definitely won't need to buy foil for a good long time! There was also random leftover food, like several pounds of butter and 3 big bottles of ketchup. So I've been sorting through stuff for the past couple of days which is why I haven't been on here much. I'm doing pretty well though, and will be even better once I get all the stuff organized and when hubby gets a job.

I can grudingly understand walking to the recovery area, since it is not far. But a soft, high backed chair like the ones in the waiting room would have been really nice, I could have relaxed into that and come round nicely. Oh well. Am going to write to the manager of the unit with my suggestions since it really didn't make my stay nice, even though the nursing staff there are super wonderful.

Shan: Iam so happy to hear from you it sounds like you are doing so much better! I hope you get everything sorted out. I wish we all lived close to each other and we could all throw a party- a pity party but a party none the less.

Starr: You really are one tough chick! I was crying like a baby and I was sedated but I still have the pain from the procedure. I hope that nap helped and that you can begin to feel better.

Cat: Thats great now you and your hubby can relax and enjoy a less stressful life.
My stomach is acting up and I never realized that I may have had stomach issues before all this started. I rememer having this kind of gas pains when I would hold in my gas for long periods of time but I remember just ignoring it. Now I wake up and my stomach starts to hurt like prickly pain all over and then I eat and it wears off and it comes back throughout the day. Sometimes I have to hold my stomach because it can hurt quite bad. It isnt in relation to my bowels because I dont have to go. I actually have only gone once in the last three days and I want to poop already so I can get that damn stool sample out of the way. I am going to drink some prune juice as well. My joints are also acting up and yesterday it was my hands but I said F*** U pain and went on with my day. I also have a lot of weird symptoms that come and go

-muscle twitching all throughout my body
-Feel like I have a fever and dont
-constipation
-pelvic pain
-Hair is falling out in handfulls
-Very dry skin
-muscle aches (very bad)
-burping alot
-the bottom of my left foot feels like it is burning even my shins hurt
-eye pain that turns into a headache
-No appetite (I eat because I have to gain weight)
-air bubbles that come out through my vagina (very annoying) I went to the colorectal surgeon for my hemmies and he took a look and said no fistulas and he told me that many women have air bubbles. I asked my sis and mom and they told me they feel the same thing. I never felt this before and it irritates me.
-swollen lymph nodes in my neck- confirmed by my doctor
-joint pain that comes and goes (hands and elbows are the worst) no swelling
-Hemmies that are driving me insane
-Fatigue I can sleep 12-16 hours and still feel tired (my doc said it was my sleep medicine restoril and he has advised me to stop taking it) We will see how that goes



I tell my doctor all of this and he is very understanding but he told me that whatever I have is not something major and that we can work on treating the symptoms. In my mind I kept telling myself that I am going to be taking massive amounts of medicine for all of my problems.
Now I am taking
-Prevacid
-Amytriptiline
-Lexapro
-Hycosamine
-Vitamin D3 4000 IU daily
-One a day womens
-Alfalfa water
-Metamucil 1x a day and will move up to 3x day with 1 tbs of milk of magnesia
-Xanax as needed

I will also be setting up another appt with the eye doctor because my eye pain and headaches are getting worse. He will probably set me up with an MRI which I dont mind because I am starting to think I have MS or ALS. I told my sister I am sicker than most people who have a diagnosis of something. I wish I could be making all of this up but unfortunately not. I am going to be doing the pill cam again very soon and if that comes out normal i will then ask for a lyme disease test. I am praying I get better and not worse.

Star, I'm glad that at least the nursing staff were nice. Sometimes that can make a big difference, just having caring people around you, even when everything else is crappy. Have you heard anything back from the complaint people yet?

Dayz, I have a lot of the same symptoms and take a lot of the same meds you do. I'm on Prilosec instead of Prevacid, and of course I had to stop the Hycoscyamine stuff because of my bad reaction to it. I'm on 25 mg of Amitriptyline. You mentioned headaches that start behind your eye, which sounds just like my headaches. I have a lot of sinus issues (broke my nose when I was a kid and my parents basically said that the hospital wouldn't be able to do anything, so I didn't get to go to the ER and it never set properly, and as a result I seem to have a deviated septum, problems breathing through my nose, easily get sinus headaches, etc). The only thing that helps when I get that type of headache is Tylenol Sinus. Have you noticed if your headaches always or usually happen in the same eye? For me it's always the right eye, and I've also noticed that when I get migraine auras, they also only happen on the right, never the left. I'm not sure if there's a reason for that or not. But anyway, Tylenol Sinus works great for me on regular behind the eye headaches that aren't migraines, give it a try if you haven't already. And can I ask what dosage of Amitriptyline you're on? 25 mg seems to work best for me at preventing headaches & migraines. I was on 40 mg for about a month and during that time I got a migraine. I haven't had any migraines while I've been on 25 mg. Amitriptyline can help prevent headaches but apparently only at low doses, 25 mg and below! So if you're on anything higher than that, you might want to ask your doc to lower the dosage and see if it helps at all.

Oh, and Dayz, you mentioned Lyme disease - my husband has a cousin who thinks she has Lyme disease. But, apparently the tests for it are VERY inaccurate. I read one statistic that said there's nearly a 50% margin of error - well, in that case you may as well flip a coin! I don't know a lot about it though so do some research before you ask for the tests. Maybe there's different tests or maybe they're more accurate by now, it was a couple of years ago that I read about that. (BTW, this cousin who thinks she has Lyme disease has decided to treat it naturally, with supplements and acupuncture and that kind of thing - she told me this as she was lighting up a cigarette! I was like, hm, yeah, good luck with that! .)

Well, I was wrong. >.< Right after I posted my last post I ate lunch and it pretty much came right back out. I have been in pain and nauseous since. I am currently drinking an ensure because I'm starting to feel really weak, almost drunk like, and I think its from three days of barely eating anything. This is getting very frustrating! I'm really glad I have a GI appointment in 6 days...

Cat, dairy is usually one of my safe foods, so I am usually safe with any pasta. Which is usually how I gain my weight back from flares since it is so fattening. We had the cheap mac n cheese last night, but my husband added milk and butter to it, and I did fine with it. But I had also taken a tramadol for the pain (I had fought it for two days and my husband was like "take this. Now."...his evil eye is kinda scary lol), so I think the side effects from the tramadol helped me keep the food in. Tramadol causes constipation for me, so I take it rarely. It frustrates me when I tell my GI I was constipated, and he thinks IBS when it was from the meds, not from IBS changing its mind. ~.~

Dayz, I'm sorry you are so frustrated with everything. I have a long list of symptoms as well, and it can be down right scary to write them all down. I'm also sorry your doctor thinks you are not in any danger..I just hope he isn't over-looking anything. Have you seen an obgyn? I had ovarian cysts a year and a half ago and they caused abdominal pain since the ovaries are higher up. When I started getting really bad a year ago GI wise I went to my obgyn first, who checked for endometirosis and poly cyst syndrome. I never went back to her though, because when the ultrasound showed perfect ovaries but a clogged colon she literally made fun of me, saying it was just constipation and to get out of her office. Worst doctors visit ever! I had been in the ER the night prior, who had given me demerol, which had caused the constipation. ~.~

Star, I agree with Cat, the staff can really make the difference! When I was hospitalized the main doctor was my savoir almost, because he was the only doctor who believed I was sick and needed to be helped. Without people like that this whole experience would be much worse, if that's possible, lol.

Allie- You should really try slushies if you can get some- they will help you to not be so hungry and they won't hurt your tummy- I agree with Cat too- try the Pedialyte pops too. I know you are probably dreaming of a big, thick steak. Hopefully you will be able to eat one soon!! :ylol2:

Star- again I am so sorry about your upper endoscopy. I hate that you had such a bad experience- it breaks my heart. Stupid doctors. :voodoo: I hope you feel better again real soon.

Cat- I didn't know you had trouble with Gastritis too. It sucks- It really hurts and burns in my stomach. I want to eat but I get so full so fast and then I cramp like crazy. I hope it will get better soon. I found out that I was negative for H-pylori so I am taking Zegerid OTC to help with the acid so that my stomach ulcers can heal on their own. Here's hoping. :ylol:

Dayz- when is the party? :ycool: Haha- we need to have some fun!! I am tired of all of us being so sick!! How are you today? I hope things are getting better for you. I can't believe your doctor is acting like all your symptoms are no big deal. How would he feel if it were him? :rof: I bet it would be a big deal then!!

Cat, your thread has become a monument to the elusiveness of IBD!!

Shan, I am dreaming of pretty much any food imaginable, ha ha. When I went and got my milkshake a couple days ago people were ordering chili hot dogs and it was driving me crazy, and I can't even eat that on a good day.

Num 1, I'm sorry you are struggling to figure this out! I understand how frustrating it can be. I have had symptoms for 6 years now but only this severe for a year. It sucks!

I completely agree! We are all mysteries to the world of GI's lol. The only reason I don't take my severe IBS dx and work on it through that is because my GI says Crohn's at every appointment, especially my last one. Here's hoping proof will be found soon..but not too much hope. >.<

num1habsfan said:

July 28th will be 5.5 years undiagnosed...

I've now gone through 4 specialists and 7 tests (2 colonoscopies, 3 endoscopies, ultrasound, CT Enterography, MRI) without getting closer to the answer!

Click to expand...

Have you had a Pill Cam? Can be hard to get but very worthwhile. No other test visualises the whole small bowel like it. C scope goes to the join with large intestine and e scope goes to the second part (i think). There are several people here who got a dx with it, when all the other tests had come back normal and missed the problem parts.

Have you had many blood tests?

I can finally swallow without pain today!! :rosette1:

Just out of curiosity have any of you ever had a laparotomy suggested as a way of trying to diagnose you?

Extreme I know but it was suggested to Sarah and in a round about way that is what she ended up having.

I was sitting here tonight thinking about you guys and how Sarah went undiagnosed for 18 months because tests just didn't pick up on anything. I remember ringing her GP on the day before she admitted to hospital the second time and saying out of frustration..."Where the hell is all this going"? He said he had no idea and maybe they would just have to open and have a look.

Dusty. xxx

Yeah Dusty, back in January my GP told me the only thing they would to at that point was cut me open to see whats going on. But the GI she referred me to just put me on antidepressants instead, and did a blood test that showed nothing. As time has gone by and my symptoms have gotten much worse, he has done a SBFT, and scheduled a pill cam, but it was withdrawn due to the normal SBFT. He said it would be a waste of money due to the fact that it had such a small chance of finding something.

If laparotomy showed whats going on I would do it. If you don't mind me asking, how did it diagnose her? I always wondered how that procedure would pinpoint IBD.

I hope your kids are doing well!

Well in Sarah's case her bowel had perforated. To say they were shocked when they got in there and found what they did would be an understatement. When the surgeon came out of theatre he told me there and then it was CD

My husband has a first cousin that has CD and she was "diagnosed" via laparotomy. She went undiagnosed for 4 years but for the last two years of that time she was being treated for RA. They went in to take her appendix out as a way of ruling it out as a cause of her RLQ pain. The surgeon took a look around and said she has CD and closed her back up. She has Ileal Crohns so I am assuming he said that based on the thickness and feeling of the bowel, I don't know if he visualised any inflammation or not. Biopsies taken at the time confirmed it.

Sarah and Matt are doing fine thanks.

Dusty. xxx

Wow, woke up from my afternoon sleep and feel awful, terrible abdo pains Can't put it down to a food this time since i've had little to eat and it wasn't anything I don't have almost daily with no problems. And too long i'd have thought after upper endo do be a problem with that. Passed what felt like a large stool only to see a very thin one.

Been waiting ages for the premiere of a tv show too, going to have to miss it

Allie, sorry to hear that solid food still isn't your friend. You mentioned a GI appointment in a few days, is this the new GI that you haven't met yet? If so, I hope he/she is good and doesn't assume this is IBS! Good luck, as always keep us posted! With regards to the Tramadol constipating you, I get the same effect when I take Zofran or Lomotil. I now automatically always take stool softeners when I take either of those two meds. I usually pop 2 stool softeners right when I take Zofran/Lomotil, and if I haven't gone in 12 hours then I take another 2 stool softeners, and repeat every 12 hours until I have had a bowel movement. I like Colace, it's much gentler than a laxative (apparently there is a BIG difference between stool softeners and laxatives!) and I was told I can take as much of it as I need to and it won't hurt anything. So if you can get Colace or something similar where you are, you might want to give that a try with your Tramadol. It doesn't give me d, in fact I usually end up having nice formed solid stools that aren't too hard but aren't d or loose or watery either.

Shan, you mentioned steak, and Allie mentioned chili dogs. Yum! Oh, I'm drooling! Torture! I often fantasize about Taco Bell myself. I haven't been able to eat any form of Mexican food since I've been ill - I tried a bean & rice burrito at one point, which went down okay but made my acid reflux go crazy. Apparently reflux and beans do not mix! And since I can't do dairy (no cheese or sour cream) nor spicy (no salsa or jalapenos) nor red meat, nor anything fried, Mexican food is a huge no-no for me. So even though I know Taco Bell is pretty crappy, I just drool when I drive past that place. Ohhhh, it would be so tasty but also sooo not worth it!

Num1Habsfan, how frustrating that you're still undiagnosed after so long and so many tests! I remember your thread from a few months ago saying that you had gotten a new GI who seemed promising and was able to get you an appointment for a test (CT Enterography, right?) that you had been waiting on for over a year. I'm assuming this means the CT came back normal? If so, I'm very sorry to hear that. I concur with what Star said, it sounds like you haven't had a pill cam and that is a really good test to have. I hope your GI is still as good as they seemed to be initially, and hopefully you can convince them to do a test that you haven't had yet. I'm guessing you've had a lot of blood and stool tests done as well? Have all those come back normal too?

Star, sorry to hear you're in a lot of pain again. You mentioned missing a TV show - does this mean you're going back to the emergency room? Or that you're just going to try to sleep it off or something? Either way, I hope you feel better really soon, this stupid illness really seems to be kicking you down a lot lately. If it gets worse or continues to be bad, please do go back to the emergency room. I'm not sure how ERs work over there, do they have CT scanners and stuff like that in the emergency room? Maybe they could scan you or run some similar tests to see what they can see when you're in pain like this? When my hubby had a bad attack that turned out to be kidney stones, they did a CT scan and several x-rays in the emergency room. As usual I don't know how it works over there though, but whatever the case is, I hope you get some relief soon!

Dusty, my GI has never mentioned laparotomy. I hope to get referred to a new GI soon so who knows what'll happen then - my current GI has been quite disappointing lately and I'd like a second opinion and a fresh set of eyes on my case, and worst case scenario I can always go back to my current GI if the new one is worse. There's a couple of other tests I haven't had yet besides laparotomy - I still haven't had small bowel follow thru, MRI enterography or CT enterography (I had an MRI of my liver and a general abdominal CT, but neither was looking specifically at the intestines). And it's been over a year since my first colonoscopy, so it's possible that a new GI would want to do another c-scope.

Mark, I never in my wildest dreams thought the Undiagnosed Club would be so popular this long after I had started the thread! I think that speaks loudly and clearly to the fact that all of us undiagnosed folks really need support and have definitely found it in each other. A couple months ago my brother (who has been kind of a jerk lately) was telling me I shouldn't be on this forum all the time, and my husband stood up for me and said no, you don't understand, she *needs* this - these people understand what she's going through better than anybody else! And hubby was absolutely right! You guys are the best and I do not know what I'd do without you! ((Hugs!))

I usually take 2 stool softeners when I take my tramadol, its automatic! But right now the tramadol isn't constipating me at all, and I am not even going to imagine what those would do to me right now. I haven't been able to eat mexican food since I got sick either! I love Taco Bell, and they have them on some bases over here, and I tried eating it, and I almost had an accident on the way home (it was an hour drive from the base we were at)! We had to stop at hubby's office and I ran in, down the hall, and into the bathroom as fast as I could. All these uniformed soldiers were so confused as to why this little blonde in civilian clothes was running in their hallway!

Yeah, my GI appointment is with the new GI. Honestly I wouldn't have changed if my old GI had not moved, but I do hope a fresh pair of eyes helps my case. My old GI assumed IBS, then slowly but surely went "this has got to be crohns", and I don't have the time right now to take that time with my new GI. This is suppose to be my last appointment until I go back to the states, to get medicine to get me through the four months. Right now with my symptoms being the worst they have ever been I'm afraid he might tell me I can't go home, that I need to get this figured out. That would really suck, since I have already got everything set up to graduate. My healthcare isn't good in the states unless I drive 2 hours to a base and get treatment there, and even then it will be emergency only. So I really have no clue what this appointment will bring me, if anything. I'm sure if I come back in January and they run tests they are going to find something....well, I hope anyway.

I hope if you get a new GI that is helps Cat! I am at the end of my rope with this "maybe crohns" stuff, and I know you must be too. There has got to be a way to get a definitive answer, we just need to find the right person!

Star, I'm really sorry you feel so bad! I agree with Cat, and I hope everything gets better soon.

Thanks guys. I tried to sleep it off, then decided to realx with a dvd instead, something I wouldn't have to concentrate on too much like a new tv show. Had another BM and felt a bit better after that. Has kind of died down to a dull ache now.

Yeah I am really not getting any better. I always did seem to get a bit worse every few weeks and now I am getting these flares of pain (sometimes D) frequently on top. I'm so tired of it. Watching tv is one of my few pleasures and I couldn't even do that tonight!

Cat, I have no idea about A&E facilities. I know they have an xray room but that is the extent of my knowledge lol. I have ended up in the same exam room twice which is opposite the xray.

I had confirmation that my complaint was being dealt with from the liaison service, but nothing from who ever is dealing with it. By law they have 25 working days (or else they must ask me permission for more time, to which I will say N-O), and 10 or so have gone already.

I see Rheumy Wednesday, think it'll just be a review of what he said in his latest letter, and of course hoping to hear about the PET scan soon and to get the biopsies back. Also still waiting on Pain Management Clinic appointment.

In the meantime I muddle on I guess.

Good luck allie with your appointment and Cat I hope you get to see a new GI soon.

Good Luck You Guys

Good luck to all who have appts with new GI's. I hope you guys get good ones who will listen to you and take you seriously!!

Star- sorry you missed your TV show. I love watching TV since some days I can't get off the couch and go anywhere. The TV and my cat are my only friends some days. :lol: Have you tried a heating pad on your tummy? It helps me a lot- at least it gives me some comfort.

Cat- yuck to Taco Bell- we call it Taco Hell. :ylol2: My thing is (was) Taco Bueno- they have the most yummy black beans. They do NOT like me tho.
:stinks: Talk about pain!!! No thanks- pass. Hehe. I agree about needing this thread! I do too. You guys have made all of this stuff so much easier for me. Now I don't feel so alone and I did before. My real friends never understood why I couldn't just go hang out at a moment's notice- another reason why I lost my boyfriend. Wish we all lived closer so we could get together. :ghug:

Allie- hope you are feeling better! Did you get a slushie? I am going to bug you until you try it!! Haha- I am a pest. :wink:

I hope everyone else is doing okay today. I woke up with a UTI! Yuck, not fun. I stupidly drank a bunch of juice last night just before bed. The Amitriptyline usually knocks me right out so when I woke up at about 5:30, my bladder was over-full which always seems to put me at risk of a UTI, and as soon as I urinated I felt that old familiar burning sensation. I hate UTIs! Fortunately my GP is awesome - I called his office right at 7 AM when they opened, and since I've had (many) UTIs in the past they were able to just ask me a few simple questions and then fax a prescription over to the pharmacy without me needing to go in and be seen. So I got my anti-biotics and am already starting to feel some relief. Phew! I've seen several threads on the forum lately about recurrent or chronic UTIs, and I'm unfortunately part of that club too.

Allie, that sucks that this is your one and only appointment with the new GI before you come back to the US, and that really sucks that you won't have good health coverage during your time here. In that case I hope your time back home is uneventful and that you feel well and don't need to go to the doctor! You said you'll be here for just a few months, right? Are you going back to Germany after you graduate?

Star, glad to hear you're feeling a bit better. Good luck with the rheumy appointment, and I really hope you're able to get that PET scan approved and scheduled! I also like watching TV when I'm too sick to do anything else. I have noticed myself gravitating towards real-life type shows like "Intervention" and "Hoarders". I think it's because those type of shows make me feel less sorry for myself! I like British comedy TV shows a lot too, I was just watching old episodes of "The IT Crowd" last night - love that show! What shows do you like to watch?

Shan, I'm sorry that your friends and boyfriend didn't understand when you weren't able to go hang out with them. My best friend is a crohnie and she completely understands when I'm too ill to hang out and vice versa. I hope you are also able to find a good friend or two who understands what you're going through and doesn't get mad when you aren't able to leave the house. My friend is totally cool with just watching TV or movies with me when one of us isn't doing so well. We both joke that we're the oldest young people we know (she's 29 and I'm 31). We feel like old ladies on the inside and we like to do old lady activities like play bingo! Ha ha.

Ugh, Cat, sorry about the UTI. That is no fun. It's nice to be able to call your doctor and get an rx called in without coming in to get tested and all that. It's amazing how fast the antibiotics work, too - almost within hours. Hope you get all the way better soon.

Thanks May. Yeah, I'm glad the medical system runs smoothly at least with regards to UTIs! I went from onset of symptoms to diagosis to treatment in the span of a few hours, that's pretty darn good! I've had dozens of UTIs over the past decade or so and I've been through the drill quite a lot and I've gotten quite efficient at it! It seems my doctor only wants to see me for a UTI if I'm having back/kidney pain or if I've got a fever or vomiting (apparently those symptoms can mean the infection is really bad or has moved into the kidneys or something like that).

I'm sorry you have a UTI Cat! That really stinks, but thats awesome that they treated you for it so fast. I hope it goes away soon!

Yeah I am coming back here to Germany when I graduate. I will be in the states for four months, and yeah I am a little worried about the healthcare situation. But with only three classes to go this seems to be the best way to get it over with!

Shan I have always wondered if heat would help the ab pain, I will have to try that!

Hello, I'm new to this forum. I'm sorry about everyone's pain. I'm on the same boat as you all. We just got to stick together and stay strong!

I'm 20 years old, and my stomach pains are controlling my life. I've been having pain and diarrhea since I was 13. I had to withdrawal from my college classes this semester because I can't sit and concentrate when I'm thinking of I need to use the restroom. And you never know if it's going to be a good tummy day or bad tummy day. It's so frustrating.

I have been through many tests, and my GI doctor thinks it was Celiac because my microvilli in my small intestine are shorter than normal but the blood tests say it's not celiac, but then he realized that my last doctor who did my colonoscopy never looked in my terminal Ileum, so now he's concerned that it could be Crohn's. I had inflammation in my colon when they did a sigmoidoscopy but the biopsies came back normal. But, I think I will be doing another colonoscopy in a few weeks to check my terminal ileum. Also my IgA level is lower than normal, so he's concerned with that.

Does anyone have any advice? It's so good to know that I'm not the only one who's going through all these tests and not feeling well, and being undiagnosed for so long.

Hope everyone has a good tummy day today. *crosses fingers!

Hi Sunshine, welcome to the forum and the club. I'm sorry you had to join our club, and I hope you're able to get some answers and relief soon!

It sounds like you've got a good doctor who is checking into all the possibilities, which is great! Have you had an upper endoscopy (tube down the throat, looking at your esophagus, stomach, and the start of your small intestine)? My understanding is that the blood test for celiac is not terribly accurate, and an upper endoscopy with biopsies is much more accurate and is considered the "gold standard" when it comes to diagnosing celiac (so says several members of my extended family who do have celiac - I've had both the blood test and the endoscopy with biopsies, and both came back negative for celiac, so it's definitely been ruled out for me). It's very good that they're going to check your terminal ileum as well, as you probably know that is the most common place for Crohn's to manifest. Where is your pain usually located? If it's in the lower-right part of your abdomen, it's my understanding that that usually means terminal ileum involvement.

I don't mean to scare you with this, but just wanted to make you aware that this could be a possibility - it is possible to have both Crohn's and Celiac at the same time. If you're concerned it could be celiac, have you tried a gluten-free diet for a few weeks to see if you notice any improvement in symptoms? (If you haven't yet had an upper endoscopy and are planning to have one soon, you should actually keep eating gluten for now, because if you have celiac but no gluten in your system, your body will actually start to heal itself and the test results will come back negative for celiac, even if you do have celiac.)

Thank you so much for the quick response! I've tried other forums, and no one usually responds to me, so thank you.

I have had an upper endoscopy and they found I had Chronic Gastritis. But my doctor said he thinks I have two problems... Gastritis, and something causing the abdominal pain and diarrhea. To be honest, the gastritis isn't really what's controlling my life at all. It's definitely the abdominal pain and diahhrea, so i'm hoping to find out what's going on soon! I have classes beginning in August and I'm not sure If I should drop out of them and just focus on getting my stomach figured out for now. Because there is no way I can sit through a 4 hour lab without using the bathroom every 10 minutes or so. But I'm not sure.

I'm on a gluten free diet right now, because my doctor wanted to try to see if I feel better. I've been doing it for 4 days now, and it's not making a difference yet, but it's probably way too soon to tell a difference.

Whenever I have my flare ups that are really bad, I get a sharp pain that feels like something's going wrong in my abdomen in my lower right quadrant. But we will see. I'm going to try to schedule a colonoscopy for in 2 weeks. I hope he figures out what's going on, I trust him, he's a great doctor to me so far. I've been to many, but he's definitely one to believe in.

Have they figured out what's going on with you? Are you feeling any better?

Thanks Sunshine. This place isn't like any other forums I've seen. The people here are genuine and really care and understand and trolls are almost nonexistent here. The admins and moderators are great - David, the owner of the forum, started out being "just an admin" and then suddenly he got bowel issues himself and was recently diagnosed with microscopic colitis! He started off as something of an outsider and is now "one of us". So everyone here really understands and cares, it's a fantastic forum.

I have gastritis too and that also isn't what's causing my abdominal pains and diarrhea. I don't have a proper diagnosis yet. My GP is quite sure I have Crohn's or Colitis, and my GI thinks that Crohn's or microscopic colitis are the most likely suspects - but still, nothing official. My GI has given me a placeholder of "chronic non-specific enteritis" which basically means I've got intestinal troubles but they don't know why. In addition to the gastritis, I've got acid reflux, arthritis (which is quite common with Crohn's), and migraines (never had them until my guts went crazy, so I am sure the two are connected somehow). I do respond to a few medications that my doctors have tried me on, including Entocort - which is used specifically and only in Crohn's. Entocort is one of those medications that, if you don't have something like Crohn's, you wouldn't respond to it. So I feel like I am getting close to a diagnosis, but frustratingly still undiagnosed.

The sharp right LRQ pain you mentioned definitely sounds like you could have something going on in your terminal ileum. I hope the colonoscopy finds something and gets you some answers! Make sure they take a lot of biopsies. With regard to your classes, only you can determine whether or not you're up to it or whether you should take some time off. I work full-time and have used very few sick days so far this year, although I used a ton last year. So I am able to work and manage this mystery illness fairly well most of the time. I'm doing fairly okay nowadays, I was definitely much worse before the Entocort and I'm quite a bit better now (I was on Entocort from Oct '10 thru April '11). I still have some symptoms from time to time, but I haven't had a proper flare in nearly a year. I've had a few mini-flares here and there, at one point the gastritis got quite bad for a couple of weeks, sometimes my acid reflux gets terrible, recently I had a bad reaction to Hycosyamine that my doctor tried me on (had awful nausea and vomiting), and just today I got a UTI. So it's been a bit of a rocky road lately, but overall I'm better now than I was a year ago.

Anyway, I'm rambling on, which I tend to do way too often, but I wish you tons of luck with the colonoscopy. Keep us posted on when you're going to have it and how it goes! I hope you don't have to remain undiagnosed for long!

I'm so glad to hear that you are doing better nowadays, better than you were a year ago at least! Very good news! But, sorry about the UTI that's definitely no fun at all. You poor thing, stomach issues and then on top of that, a UTI... that's not fair at all.

It's funny you mentioned that David, the owner, was diagnosed with microscopic colitis, because that's what my doctor had thought maybe was my issue, but then did a sigmoidoscopy and found a little inflammation in my colon but the biopsies came back normal, so he said he wasn't worried about it. But when i mentioned that i never had my ileum checked he seemed to have a different reaction on his face, so i'm not sure what he's thinking, but he seems to really care about me and actually want to try to figure it out, which is wonderful! It's hard to find a genuinely kind doctor who actually cares.

That's crazy that we both have Gastritis, but yet that's not even the REAL problem that's controlling our daily activities. I had a bad reaction to the smallest dose of birth control (just to make my cycle regular and decrease cramps), and my stomach did NOT like that at all. Gastritis kicked up a lot with just ONE pill. Definitely stopped that!

I'm really hoping that with the colonoscopy they can figure out what's going on, it would be so wonderful for me to know what's going on with my body, and get my symptoms under control.

Yesterday I went to work, but I was in the restroom back and forth, it's so difficult. But, I'm sure you have been through the same thing! But, I know that we will all get diagnosed eventually, it's just patience unfortunately, and the right doctor!

I will definitely let you know when I'm getting the colonoscopy done, and what the results are when I find out! We will be keeping in touch!

****butting in**** I was just lurking around here and wanted to say that, Sunshine, has your dr discussed the possibility that your celiac blood tests were negative BECAUSE your IgA levels are low, and that it might have been a false negative? I'm a med student, and we learned in school to always check an IgA level when you do a blood test for celiac. IgA is a type of antibody (there are several different types). The most common celiac test is for an IgA type antibody that your body produces if you have celiac. But if you have an IgA deficiency, you won't have any IgA's in your body at all, so you won't have the celiac IgA antibodies either. Does that make sense? Sorry if I'm not explaining it well!

I'm sure your dr has thought of it but just wanted to make sure. Did they do a biopsy when they saw the short microvilli?

Sorry to be nosy, just trying to help! Hope you get some answers.

Deedee, no worries about butting in, personally I always appreciate advice from any medical professional around here! The crohnies who are also doctors or nurses or med students are 100% appreciated in my book. For one thing I don't know how you can go into such a stressful profession with this illness so hats off to you! That's very interesting about the IgA in celiac, I'm not sure if they've even tested my IgA - they usually just do stuff like CBC, CRP, and ESR. I'll make a note to ask about whether my IgA has been tested or not.

Sunshine, birth control pills seemed to be making me more ill too and I didn't even realize it until I stopped taking them (I switched from the pill to the nuva ring). I felt a lot better after making the switch! Still not 100% of course, but it definitely made a difference. I only made the switch because I was having so much diarrhea that I wasn't sure the pill was actually being absorbed or if it was just shooting through my guts and out the back end!

Deedee, I agree with Cat, you are definitely not butting in! The more advice the better!

My doctor did explain to me about the IgA level, it was very confusing when he was explaining it to me! He told me to go on a gluten free diet which I have been doing for about 5 days now. It hasn't helped yet, but i'm sure it takes time to notice a difference if I do have Celiac. Thank you sooo much for your advice! No other doctor I went to ever thought the IgA low level was a big deal, until this doctor, and you! So, thank you! You definitely were not butting in, don't worry about that.

Cat, you should get your IgA level checked! You never know if that may be something that the doctor has as a wake up call to what's going on with you. That would be awesome if that's what it was, so you could get diagnosed with the proper name.

I've decided just not to do birth control for a while just because my stomach is so sensitive, I can't even take Ibuprofen on an empty stomach. So, I'll wait til the birth control is neccessary, ya know? But thank goodness, you got off of the pill and switched to Nuva ring, because the pill made me so sick, i didn't understand. And, it's better because you didn't know if it was actually being absorbed. Definitely good move on that one Cat!

Eek, ibuprofen! For your own sake, please stop taking ibuprofen - it's awful for Crohn's among other things! It can cause stomach ulcers & bleeding and other problems in the digestive tract, even in healthy people. NSAIDs (non-steroidal anti-inflammatory drugs) such as ibuprofen are big no-nos for Crohn's, and aspirin is bad too. I've been told that if I do have Crohn's that the only thing I'm allowed to take is Tylenol - apparently because NSAIDs and aspirin are metabolized in the stomach/intestines, whereas Tylenol is metabolized in the liver. I took a lot of ibuprofen shortly before I became ill and I've often wondered if there's a link between the two - I've heard others on the forum say the same thing. I haven't taken any NSAIDs since I became ill, just don't want to risk making things worse. It does suck, because Tylenol doesn't really do much for me, but it's better than nothing and definitely better than making things worse.

Oh my goodness! Thank you for telling me that! Gosh, I've been taking Ibuprofen every time I get a head ache or any pain. I'll be stopping that right away!

If I had Celiac with Crohn's or even just Celiac, when I eat gluten free foods, would I still get cramping and bloating pains and then diarrhea shortly after I eat? I don't feel a difference yet, but it might take more time to tell. Just gotta be patient.

Welcome Sunshine

Hi Sunshine... :rosette2:

Sorry you had to join our group but we are happy to have you just the same. I too have Gastritis and IBS (they say it's IBS, we will just go with that because I am too sick and tired to argue anymore). I take Zegerid OTC to reduce my acid so that my stomach ulcers can heal- I have errosions all over my stomach and duodenum. Unfortunately, my Gastritis DOES cause me lots of my problems- vomiting, diarrhea, and lots of abdo pain. :frown: In fact, I had to stay home on Friday because I had really extreme diarrhea and when I stood up from lying down, it felt like a monster was inside my gut kicking me with his feet. With the Gastritis, I have such horrible growling in my gut that if seems like this gremlin is living in there so I am thinking of naming him. Any suggestions? :shifty-t:

Anyway, we all feel your pain. This is a great group of people with lots of suggestions, comforting words, and just a shoulder to cry on. You are in good hands. Keep us posted!!! :thumleft:

Aww, yeah I really don't like that doctors are so quick to just say IBS... It's so annoying. My doctor though is starting to realize that it's not that. But, he's just having trouble figuring it out of course. I take Carafate for my Gastritis. I get nausea but it's gone down since the gastritis medicine I take 3 times a day. My stomach is crazy with the growling too! It sounds so insane. My mom told me she thinks theres something in my stomach trying to get out haha. I wouldn't doubt it.
But, yeah for me, the Gastritis is a problem, but it's nothing compared to the diarrhea,cramping, and bloating I'm feeling from whatever is going on in my intestinal area. Sometimes there are really bad days when the gastritis and everything is going wrong and I get no sleep at all at night. But, I've been so tired lately because I've been feeling sick from the diarrhea and everything, that I just go to bed very early. It's so nice to feel tired and actually get sleep, jeeze, what a concept!

I'm glad that I have people to talk to about this stuff, because it's definitely something that most people don't understand. It's so nice to have people that actually understand and know EXACTLY what you're feeling. One day, we will get diagnosed and be getting better in no time. Just takes patience, unfortunately.

Shan, are you getting any tests done soon? I have to schedule another colonoscopy soon and then a pill cam if he doesn't find anything. :/

Also, earlier today my boyfriend was just being silly, and put a recorder up to my lower right quadrant of my abdomen where my Ileum is and the noises and activity that were going on were sooo crazy. Then I recorded his and it didn't have hardly any sounds. Do you think that has anything to do with something??

All of us tummy people gotta stick together! I'm glad I joined this forum, I feel much better that I can talk to others that have the same problems. Thanks for taking me in guys!

ok, glad I could (maybe) help! Thanks for the compliments, Cat!

and yeah, NSAIDs are a biiiig no-no in IBD patients so if you might have it, you better stay away!

Yes, thank you so much! I really appreciate it!

I had a head ache today, and normally I'd grab ibuprofen, but after learning I shouldn't take that, I took Tylenol! thanks for helping to save my stomach! Great advice!

I take the odd nurofen for period pain when i'm on (every 7 weeks) as I notice no increase in symptoms. But for everyday use they are certainly a no-no for me. Some people won't take even one, it's all down to personal preference.

SunshineSmile, hope you get to have a Pill Cam. Seems to be the best test there is and several of us on here have been denied for various reasons.

Sunshine, thats weird that you can't stomach birth control. I've been on a low dose bc since January of 10. I had mood swings the first few months, but thats normal. I was put on them because I had two ovarian cysts on my left ovary, and one had ruptured. I never want to go through that again!

I hope everyone is doing well and is having a good weekend!

Star, Yeah, after the colonoscopy I will be doing a pill cam. If it's such a great test then how come a lot of doctors are saying no to it? That's not fair for everyone.

Allie, It is very weird. My doctor was like yeah you should be fine, went home and took the first pill and was throwing up for the next 2 days. So I stopped taking it. Definitely don't want that happening again.

Hope you had a good weekend too!

Headaches & abdominal noises

Hey everyone, I was just curious if anyone knows if headaches are any indicator for Crohn's? I've been getting a headache everyday it seems, and a long time ago I never used to get headaches so it has been something that has definitely caught my attention.

Also, my lower right part of my abdomen makes a lot of noise! It sounds like gurgling, grumbling, or toilet flushing... Kinda hard to explain I guess. Is that weird or are there others with these strange noises in the lower right abdomen??

Thanks so much for reading my concerns!

I don't get headaches, but the tummy noises are common and mine are really bad! When I'm laying down I am constantly making noise, and the past week my lower abdomen has been very loud, it sounds like liquid is rushing through. Yuck! I have read that IBS can cause the noise as well.

Sarah had headaches as a symptom when she was undiagnosed.

Dusty. xxx

Hi everyone! I'm still waiting on a diagnosis for myself. Doc's think it could be Crohns or I had an infection of the TI. I was admitted last month for 5 days due to severe inflammation and ulceration of the TI. About 5 years ago I had a Barium swallow done and the GI doc noticed narrowing of the Ilieum.
Prednisone is finally kicking in after 3 weeks. I have a MRI and more blood work coming this week.

Hi Mike, and welcome. Sorry you are having to deal with this, but that is great that you are on the road to diagnosis! I'm also glad the pred is starting to work. I hope you get into remission quickly!

Thats awesome that you are from Atlanta! That is my hometown! I am here in Germany with the US Army (my husband is the soldier). I will be back in Atlanta in a month for a few months and I can't wait to be home!

SunshineSmile said:

Star, Yeah, after the colonoscopy I will be doing a pill cam. If it's such a great test then how come a lot of doctors are saying no to it? That's not fair for everyone.

Click to expand...

One word simple answer there- money. I think it is not the equipment so much but the fact that it takes several hours (at least) for a Dr to view all the images.

In my case I can only get funding for it if I fit one of two narrow criteria. Even though CD is an illness well known for not "ticking the boxes". Funding approval is not in the hands of my GI, it is higher up at the Primary Care Trust (I explained what this is a few pages back), as they control the money.

Or I can get it done on a private basis for over £2250 ($3602). I don't have that kind of money, nowhere near.

I am going to ask for a special consideration though in a few months if I am no further as to a dx.

Yeah, I wasn't sure if headaches were anything, I just have been noticing that I've been getting headaches pretty much everyday, which I used to never get when I was younger. And the stomach noises are so weird, right? Sounds like there's a lot going on, almost like a little monster is stuck inside the abdomen!

Mike- I hope they can figure out what's going on soon! Good luck!

Hope everyone has a good stomach day today!

Star, yeah that's what I was thinking, the money. I hope you can get it done! I feel like everyone who has abdominal issues should be getting that done, because it gets to places where the scope does not get to! It just makes sense for a Dr to do it. But the money is a big thing, unfortunately. Hope you can get it done! Best of luck!!

Just adding one more voice to the undiagnosed!! I was recently diagnosed with Gastroperisis (delayed emptying of the stomach) and they stopped looking for anything else including Crohn's... Was told I could have IBS with it.. My niece was diagnosed 1 1/2 yrs ago and they say she isn't a close enough relative to link it to me.. I have been experiencing stomach pains, diarrhea, and my stomach distends to look like I am 10 mos pregnant. I was out of work for 3 days 2 weeks ago and am home again today.. Was told over the 4th of July weekend that my intestines totally shut down and to take laxatives.. Went back a few days later and it was moving about 20%.. Been on a soft food diet and am going back to the GI Dr today.. Am really hoping she does further testing. I just found this site yesterday and it is soo nice to see other people are in the same boat as me! Thanks everyone for sharing!

Welcome netnetroberts. I'm sorry you had to join our little club, but I'm glad you found us. I was looked at for Gastroperisis as well. I'm told atm that my issue is IBS but I just cannot believe it, and right now my symptoms are so bad my GI is also thinking its not IBS as well.

So I wanted to share with you all that I am still not handling solid food, after a week. And I kinda did something bad lol. The only food I had had today was a handful of apple jacks and some ritz crackers, and I had "peed out my butt" 5 times. Well, my husband had asked me yesterday what food I wanted the most after a week of liquids, and I had said hamburger and fries. He brought me a whopper and fries and a coke! O.O Now, granted, hamburgers with no veggies doesn't usually bother me, so I'm not too worried, but I was so hungry and I feel so weak that I gave in.

Tomorrow is my GI appt...I really hope he realizes something is seriously wrong. I kinda hope that they might admit me and figure this out once and for all, but 1) that is way too much of hope, they would never do that and 2)My birthday is Wednesday. I'm turning 22. Last B day I had my hernia surgery that found nothing and didn't fix my issues and this one I'm so sick I can't eat! As soon as I give up trying to find this crohns and just deal with it as IBS it always gets so bad that I know it can't be IBS, it has to be crohns, and it really sucks to not have medication.

Sorry for the rant, just a little down! I really hope you guys are doing better than me, lol.

thanks for the welcome! i too have a dr's appt today and i am wishing the same thing! maybe if they admit me, people will actually believe i have a serious problem and i am in a lot of pain and it's not exaggerated! good look to you. i would kill for a quarter pounder with cheese but i can't dare risk it! i had two graham crackers today with a small amt of low fat jif pb and was in severe pain for a few hrs. can't wait for the dr to see how far out my stomach is! i will post again after my appt in a few hours.

NetNet, welcome to the club and I hope your appointment today goes well! Please keep us posted, thinking happy thoughts for you and hoping you get some answers and relief very soon!

Allie, good luck on your appointment tomorrow, I hope the new GI is excellent and can squeeze you in for some tests before you come back to the states. And oh my, a Whopper?!! I think that would kill me! Even before I became ill, I couldn't handle eating hamburgers or beef in general. I gave up red meat when I was about 14, and after that on the rare ocassions that I'd try to eat beef, it'd always give me an awful days-long stomach ache. I think my body got used to not eating beef and stopped making the enzymes necessary to digest it, or something like that. I haven't even tried eating beef since I've been ill but I'm fairly sure I'd wind up in a flare if not the hospital if I dared try eating a hamburger.

Sunshine, the pill cam is unfortunately a fairly expensive test no matter where you are. If you have it, make sure your insurance will cover it or I think it's about $1500 here in the US (maybe more depending on the doctor/hospital you go to). It's not a very commonly done test and like Star said, that seems to be mainly because it's so labor intensive, with the doctor having to look at each image, and there are tens of thousands of images taken during the pill cam procedure. In fact out of all the Crohnies I know "in real life" I am the only one who's had the pill cam! Unfortunately, mine didn't find anything. Whatever my illness is, it's hiding very well. Very frustrating, I had a LOT of high hopes for the pill cam but it was just another in a long line of "normal" test results.

If I missed greeting any other new members of the club, sorry - and welcome!

well, my dr's appt did not go well at all! i am sooo upset and frustrated right now! i think i will need to call my family dr and ask for a new referral to another gi specialist. i currently see a nurse practitioner who is usually pretty thorough. but not today. she blamed me for my symptoms and said those dreaded words... ~you're just constipated!~ i swear if i hear that again i am gonna scream.. she wants me to go for a 5 series xray of my abdomen and then have a Marker test?? that will show if my digestive track has shut down. but she clearly stated she does not feel that was the problem. and her exact quote was "if it comes back positive then we just take your colon out and you will have a bag" and shrugged her shoulders.. implying that if thats what you really want to be wrong then we will just give you a bag!! i was sent by my general dr a month or so ago to an ENT Dr for all of the sores i get in my mouth. she (the ENT Dr) asked that the gi dr rule out crohn's.. my gi dr mentioned that request and all but laughed at the request! i'm sorry to go on about this.. but i have been crying for hours now!! i am sooo frustrated, tired, sore, bloated and just not sure how much more i can take. i have to go to work tomorrow and i don't know how to keep working in the shape i am in. she yelled at me for staying home today. and she said she won't be able to follow up with me until october. that does not help me today! and if i am just constipated (and i have been taking myralax for weeks now) then why didn't she give me something to clean it all out so i get some relief? if that is all that it is!!! UUUUGGGGGGHHHHHHHH!!!!!!!
my other concern is that if my test results come back normal then why even do them?? am i bringing this on myself like she said? i stick to a low fat, low fiber diet for the gastroperisis... i am doing everything i am told to do, so how is this my fault?

anyways, thanks for letting me vent! i am really glad i have this outlet. don't know what i would be doing right now without it!

Cat, I know I can't believe how expensive it is. I totally understand why it is though, it's a really intense test with lots of pictures to find something. I am sooooo sorry the pill cam didn't come out with anything. I'm having high hopes for my 2nd colonoscopy soon to find something and then the pill cam... after that, I'm not exactly sure what else to do... I even thought about going to one of those labs that specialize in finding what's wrong and does tests that some doctors don't do. For example, here in Florida they have Shands Hospital in Gainesville. But, I don't know...

Luckily for me, I had my gallbladder out this year and it maxxed out my insurance for the year, so now everything I do this year (even going to the hospital) is at no cost for me. So, I'm trying to get as much done this year before that goes away!

NetNet- Sorry your appointment didn't go as well as you had hoped! I can't believe your nurse practitioner would say that stuff to you... You should definitely look into getting a different doctor that treats you better and takes your illness seriously. And I totally understand how you feel about not being able to go to work in the shape you're in. I'm having the same problem with going to school and work. I always eat 5 hours before class, and even when I get to class I'm still having diarrhea. definitely no fun.

I'm glad that we all understand each other's issues, because not many other people understand what's going on and how hard it is just to get through our every day lives. Everyday is a new day, a new start, with new opportunities for us to get our illnesses under control. One day, we will all feel much better, I just know there's an ending to all of this for all of us! Just gotta stay patient and hopeful, and most of all stick together.

Netnet- may I just say this... your doctor sucks- get a new one!! End of story. You are sick, you don't deserve to be told you're not, find someone who will listen right now. Waste no more time with her. You deserve better. Ugh. :voodoo: I am so sorry you have had to deal with that. I know I have Gastritis and it sucks bad, but I also believe there is something else in my colon that they haven't found yet- the IBS doesn't really fit me either. I have been sick in bed since Friday with the most God awful abdo pain. I have trouble holding food down. I vomit all the time. So I try not to eat, but then I get so weak that I feel faint. So then I try to eat a little and I get pain, diarrhea or both. :stinks: I hate it. But my doctor does listen, thank God, and gives me good meds, but he still doesn't really know for sure. I have been dealing with this for about 10 years now. Hang in there. There are good days and bad days, but we will get thru it together.

Sunshine- no more tests for me right now- I am so tired of it. Gonna take a break from the tests, take my probiotics, vitamins and Zegerid, and try my best to rest and take care of myself. I hope I reach remission soon. I usually have a few months of illness, followed by a few months of health, so I am hoping for the good months to get here soon. I have had a colonoscopy, two endoscopies, and a CT scan so far. I hope you get answers soon.

Allie- sorry you are having trouble still with the solid food. :ywow: I am in the same boat!!! I didn't have anything but popsicles all day today, then I got hungry and tried to eat a bagel. Have been doubled over ever since. I should know not to eat bread- it does not like me. Sounded good at the time!! I love hamburgers too, but the last time I ate one, I had projectal vomiting- part of it landed on my shower curtain. :ylol2: Really gross. No more hamburgers for me for a while. I really hope you feel better real soon.

Hope everyone has a good rest of the week!!! :wink:

Thanks ShanBanana!!! I thought long and hard last night about the whole situation. The whole thing had me sooo angry!! :mad2: My family dr is not that way, he just doesn't know what to do for me. He was gonna refer me to someone else if this doc couldn't get me in yesterday. So I am gonna pursue that. I already have a call into my family dr today. Was gonna try to see him today but his schedule is full. So I will wait for the call back. I did some research online last night and found out that Temple University is one of the leaders in Gastroperisis so I might talk to my family Dr about getting in there since I live rather close. Thinking about contacting them directly as well today. I will go get the xrays she asked for, but she can't see me again until October.. So that is that!! Press on and don't give up!!

Thanks again for all the support!

Alright.....I had my GI Appt today...and Ladies and Gentleman *drum roll please*...

I HAVE A PILL CAM SCHEDULED!

I am still shocked. The appointment itself was one of the worst appointments I've had. All that work with my GI these past 6 months, completely down the tubes. My new GI thinks I just won't "accept that I just have IBS". Really, you think I'm a crazy person that wants to be sick? And you just met me? I tried to explain that the only reason I am still pursuing crohn's is because my other GI had seen me month after month and saw the ulcers, the weight loss, the fatigue, and over time he realized this is too serious to be IBS. But my new GI wouldn't listen. What really sucks is its scheduled for August 3rd, and I leave here the 13th. That means I wont even be here for the results. If it is crohns, how the hell am I going to get my medication? My GI isn't going to be there my last week I'm here, so there is no way I will physically see him after this test. He also said, if this test comes back normal, I should never think of IBD again. This guy was so rude it wasn't even funny.

Oh, to top it all off I have to be there at 7am the day of my test. And the prep has to be done 4 hours before hand, so I have to drive to the hospital and prep in a hotel room at 3am. They are having me do a full prep too, like I'm having a colonoscopy, and they have making me wear the belt for 8 hours...he wants to see as far as it will go, including the colon. I think he just wants me to suffer...he was so rude.

I'm extremely frustrated right now.

From now on, I'm eating anything I want. I'm going back to eat tons of fresh fruit and veggies. Back to having my coffee fixes, my fiber cereal, etc. I'm going to eat everything I have stopped eating so that maybe I will have physical proof that I have crohns. If I keep self medicating it will just look like I'm fine, so I'm pretending I'm not sick.

Shan, that sucks with the vomiting..that happened to me in the hospital after my 2nd upper endoscopy. I rarely vomit and both colonoscopy preps I have projectile vomited. One because I hate tea and they refused to give me anything else to prep with, second time because I was bleeding internally.

Net, I agree with the others, you need to switch doctors if your gut (no pun intended) feeling is that they are missing something. So many crohn's patients take forever to get a diagnosis because doctors are rude, saying it is in their head, they are hypochondriacs, etc. I'm not saying you have crohns, but if you feel your diagnosis isn't fitting, and you aren't feeling better, you need to get a second opinion.

I feel completely ragged right now, and I really don't know how I feel about this.

I sorry Allie! I def know how it is to put up with Doc's who don't care. I was in the Army. Why would they schedule me a psych evaluation, when they clearly saw narrowing and inflammation in the ileum? (This was 5 years ago)

I finally got an MRI scheduled today. The earliest appt they have is September 22! Obsured!

I'm here in Germany because my husband is in the US Army, so I am seeing military doctors. They are trying to blame it on depresson for me too. RIDICULOUS!

I really hope your MRI helps you out!

I totally feel your pain! I'm using the VA. I hope all goes well for you!

allieinwonder said:

I'm here in Germany because my husband is in the US Army, so I am seeing military doctors. They are trying to blame it on depresson for me too. RIDICULOUS!

I really hope your MRI helps you out!

Click to expand...

Do you like Germany??

Yeah, Germany is pretty cool! We live off base so we are exposed to the culture 100%. There are some things about the united states that I miss, particularly the way we shop and eat. Trying to get diagnosed here is really hard, because I have had most of my tests done my Germans, who don't speak English, and they don't send anything to my american doctors. So going to the hospital is almost a waste. I was hospitilized in a German hospital for 5 days for inflammation that was so bad you could physically see it/feel it, but they didn't do any tests that could see it before I gave up so I have no record of it in my records.

NetNet, so sorry to hear that your doctor appointment went so badly. I can't believe they said they'd just cut out your colon, just like that! Good for you for not settling for that kind of treatment! When you ask for a referral to a new GI, it may help to have a specific doctor in mind to ask for. If you go to the Crohn's & Colitis foundation of America's website - I believe it's ccfa.org - they have a list of doctors that are approved by them as being Crohn's/colitis specialists, so you may want to have a look on that site and see if there are any doctors that look promising in your area. Good luck!

Sunshine, I've already maxed out my health insurance deductible too but unfortunately I still have to pay 20% of everything once my deductible is maxed, so I'm still racking up medical bills here and there. We maxed out our decuctible very quickly this year too because my husband had kidney stones at the beginning of the year. Fortunately he's all better now but we'll be paying off his surgery and ER bills for a little while - thank goodness for payment plans! Be very thankful that you don't have to pay anything after your deductible is maxed out, it sucks being ill and racking up the bills!

Shan, good for you for taking a needed break, I think we all need those from time to time. It can really wear you down, having test after test (especially if the results are always "normal"!). Don't take too long of a break though - that's where I'm stuck right now. I was on Entocort for 7 months which seemed to put me, if not in remission, definitely closer to remission than I'd ever been since I became ill. I feel close to remission now, I'm able to eat (although I avoid my trigger foods and eat mostly bland & easily digested foods), and I'm able to exercise, and I'm able to actually make plans and have fun and my body usually doesn't complain too much. But, I'm still undiagnosed! And since I'm in sort-of-remission, there's no way that a test would come back as anything but normal. So I'm sort of stuck, can't really get diagnosed until I flare again, and can't completely enjoy remission knowing that I still don't have a name for the monster. I just feel like I'm always waiting for the other shoe to drop, you know? So, long story short, don't let yourself rest for too long or you may find yourself stuck in diagnostic limbo in a different way! (Not that I can complain too much - I'd rather be stuck and in remission than stuck and really sick.)

Mike, welcome to the club! Count me in as another one who's been told that my problems are all due to depression. I (not so calmly) explained to the idiot doctor that yes, I am depressed! I'm depressed because my guts have gone crazy and nobody can tell me why! If you'd just find out and treat what's going on in my guts, I can guarantee the depression would get better too. It's cause and effect, the gut illness is causing the depression and not the other way around! I wish some doctors could get this simple notion through their heads! I know you guys understand!

Allie, how awful that you also had a bad GI appointment. But, pretty amazing that you get to have the pill cam! Maybe I missed the explanation in your post, but I'm wondering how you convinced this awful GI to let you have the pill cam?? Hopefully the pill cam will find something and this bad GI will be shamed into admitting that you're right and he's wrong - one can only hope! That's awful too that you have to do the full prep - I had to do half prep for mine and even with that I felt awful and got too dehydrated and would up on IV fluids. Yuck! I hate prep and I feel for you! The good news was, even with half prep they were able to clearly see everything, so if I were you I wouldn't stress too much about getting the full amount down. I wish you tons of luck with the pill cam, keep us posted and I hope this GI is able to get you the results (via letter or email maybe?) as quickly as possible!

As for me, I'm doing so-so today. I'm on day 5 of a 7-day course of antibiotics for a UTI. I've been doing tons of probiotics to try not to disrupt my gut bacteria levels too too much, but even so I can tell that my guts aren't happy with the antibiotics and I've had more d, cramping, nausea, etc the past few days. When my guts aren't happy, I try to eat only safe foods, but I slipped up today and had a big salad. When I feel fine, salad isn't a problem, but when I'm less than great it can cause issues. So I'm dealing with that right now, yuck. It was sooo tasty though! Why do the foods I love not love me back? Oh well. I'll be done with the antibiotics soon so hopefully I'll be feeling fine again in a few days.

Thats the thing Cat....I didn't convince him. He was the one who brought it up, I was just trying to explain why my old GI thinks its crohns. He was, at the time, staring at my record of normal test results...not listening to the things that aren't on the tests. He did the whole "its just a functional bowel disorder", and even asked me if I needed a pamphlet on IBS...~.~. I think My old GI left a note in my records that I should get a pill cam to finally see if there is evidence to crohns hiding. Its just a hunch though. I guess thats why I'm not happy about this test. I'm not too worried about the prep actually...its better than the mineral oil prep I did with the Germans! And I get to have jello...no "you have to have tea and only tea" crap!

I'm not getting my hopes up with this test. I'm just going to expect normal test, and if it shows something with a real treatment I will be happy. I'm just so frustrated right now its unbelievable!

I'm sorry you aren't feeling too well! I completely understand the giving in...this diet can get so hard sometimes!

Allie, he sounds like a complete tool!! At least you got the pill cam scheduled...I would like to see him squirm if something comes back showing you do have IBD after all.

Allie- That's wonderful that you have a pill cam scheduled!!!! Yayyy!! I hope you get some answers!! Best of luck!!

I was doing research and saw that flank pain was a symptom of IBD. I went to the hospital a week ago because I thought it was kidney stones but they checked my kidneys and spleen and it was all fine. And no bladder infection. Has anyone experienced flank discomfort? Thanks so much!

Allie~ glad you got your test! that was all i wanted.. a complete series of test! i too hope you get the answers you are looking for. Are you relocating to the states or only home on a visit?

Cat~ i would love to have a big salad right now! my foods are soo limited. and for right now it is soft foods and liquids. as long as i have the gastroperisis i cannot have fresh fruits or vegetable and limited cooked veggies even on good days. i am allowed canned peaches and pears and cooked veggies w/out skins. :boring:

I called my family Dr today and am hoping he will be giving me a referral to Temple University Hospital~ Digestive Disease Center. from what i have found out, they are a leader in gastroperisis as well as other digestive issues. and since i already have a positive diagnosis for that, my hope is to get in there and then they can do a complete work up and see what else is going on! keep your fingers crossed!

thanks everyone for helping me regroup and not give in to what the dr's seem to want me to settle for. my new motto~ stick to what my gut is trying to tell me! :sun:

Hey guys!

Well I am on day 4 of this horrible abdo pain/vomiting episode- Hate it :yfaint:
I have been living on Slurpees- again! Yes, Cat, I know that I should be eating the Pedialyte popsicles, but I literally live right behind a 7-Eleven, so I can just walk over a get a Slurpee anytime I want one, and when you are too sick to drive, then, ya know :shifty-t: Cat- I LOVE salads too- especially from Subway- love the tuna salad!! I can only eat it when I am having a good tummy day tho- otherwise it kills me. Thanks for the advice about the tests and my break- I really am not feeling much better, but I thought I would try to give these new meds a try to see if they will work and I am just so sick of giving all my money to Baylor. :lol2: We will see, I suppose. Will keep you posted.

Allie- your new doctor sounds terrific :ymad:. What a loser- ha! But maybe he will find something out for you with your pill cam- congrats on that BTW. Good luck- hope it all goes well. Sorry you have to do a full prep- that sucks. Maybe it won't be too bad!

Netnet- good luck with your referral- hope you get it. I am in the same boat as you for now- only liquids and soft foods-I hate it. I can't even smell food cooking without wanting to barf! Ugh :yrolleyes:

Everybody please think good thoughts for me :sign0085: I am sick of vomiting. Wish the new meds would begin to work. I hope they DO work. Y'all have a good evening!!

Had a great appointment with Rheumy, he is a great guy and a very good Dr. The first thing he said to me was "so, Gastro have given up on you", which made me happy! I said I had asked to see another GI. He said that either a new one would want to do all tests again, which would not be good for me (and not something at this stage I am willing to do), or just come to the same conclusion. So he suggested I give that department a break for a while, which I would be happy with, as long as I can still be classed as an "acitve" patient, so if I need to see someone I do not wait months. I would love to take a break from all testing but too ill now if that makes sense.

He's waiting on a PET scan decison (he was honest with me, it is a funding issue and not clinical need, and the last one he applied for was turned down. But he was meeting head of Xray lunchtime so he was planning to take along my notes). He was hoping the CT scan would find something they could biopsy but that was clear. He said there are sometimes issues in the bowel, which occur between the skin and the outer bowel wall. The next stage would be a Laparoscopy, so cutting me open for a look. I figured it would come to this at some point. Also had some bloods done (and they got it out first time after a quick soak of my hands in warm water!) including a new one. Apparently I did have me ferretin measured in May, it was 23, which is normal but he said he was surprised it wasn't lower.

He really seemed to understand how hard it was for me, and that it had been going on so long. He spoke to me and not my Mum like GI has a habit of which was great.

Should see him in 2 months, although sometime Rheumy appointments can come through for quite a while after the Dr asked for- couldn't get it there and then due to system problems.

Thanks everyone for the excitement on the pill cam. You guys have made me excited as well.

Star, thats great that you had a good appointment!

So today, as my first day of "eat like I'm not sick" plan...it didn't go so well. >.< Today also happens to be my birthday (I'm 22!). So when I got up this morning I decided I would cook a proper breakfast...two eggs, bacon, and some mandarin oranges. Something I would eat typically eat before I got sick. Well, eggs are one of my trigger foods, as well as fruit...and I got nauseated and my pain increased after my meal. My wrist pain increased too. Not the worst, but pretty bad. I was barely able to eat some dinner and some of the birthday cake the hubby bought, and I didn't eat anything in between. I'm not really upset about it, but it just made me realize these next two weeks are going to be hard, but if it makes the inflammation/ulceration/etc worse for the pill cam it will be worth it in the end.

Shan~ I hope you feel better soon! it is no fun to be that sick.. I get nauseated, but i don't get to the point where i vomit.. (so glad cause i have a hard time dealing with that!) i get more pain than anything when i eat!

:hang:

UPDATE~ i went back to my family dr today. he apologized for how the GI Dr treated me. he said he has had other problems and complaints with her to and i don't ever have to go back to her again! chalk one up for the good guys! my xray yesterday does not show anymore constipation (which it did at the beginning of the the month!) he said lay off the miralax (thank goodness cause i can't get far from a bathroom right now and the gi dr told me to take it 4x a day!!!! idiot!!!) he is putting the referral in for me to go to Temple but it may take a while to get in! he said if they can't get me in, then he may refer me to John Hopkins. in the meantime, i am to stay on a soft food diet.

So i consider this to be a good, productive day!! wooo hooo!!! :emot-dance:

Thats great news Jeannette! Your GP sounds amazing! Miralax 4x a day...that is the most absurd thing ever! That is not healthy, even for someone with chronic constipation! Your body would stop trying to move stool on its own! >.<

Shan, I'm sorry I forgot to reply before...I'm so sorry you aren't feeling well! I am in the same boat as you can see...I know how much it sucks but we can get through it! Has your doctor said how you should treat this? Since they have given you a diagnosis of Gastritis? You would think if they think they have figured out the problem that they would get you straightened out. If not I would let them know whats going on with you and that you need help!

Happy Birthday Allie !!
:bdayparty::birthday2::bdayparty:


HOpe you have a fabulous day !

Thank you so much!

Happy Birthday Allie!!! Hopefully the pill cam will give you a birthday gift in the form of a diagnosis! Here's hoping!

Star, laprascopy is where they just make a small incision and stick a camera inside your abdomen, right? So it sounds like if it comes to that, they wouldn't be cutting you open very much, at least that's a relief. And very glad to hear you finally had a good doctor appointment for once! I hope your rheumy is able to get that PET scan for you. Have you heard anything yet from the complaints people? They're surely running low on time by now, how many days left until their deadline?

Net, glad you had a good doctor appointment too! Hooray that you don't ever have to go back and see that wicked witch who wanted to cut out your colon! And oh my goodness, Miralax 4 times per day??? I would probably be crapping out internal organs if I had to take that much Miralax! So glad you're getting referred to a better hospital, you deserve some good treatment from a doctor. You mentioned John Hopkins hospital - I just saw an article on Yahoo news listing the best hospitals in the US, and it looks like John Hopkins is #1! Here's the link if you or anybody else is interested:
http://health.yahoo.net/articles/healthcare/best-hospitals-2011-12
(My hospital did not make the list - no hospitals in Wisconsin did. This makes me wish I could afford to go to Mayo Clinic though!)

It doesn't surprise me one bit that there aren't any Florida hospitals on that list !
Although, I do think the FL Mayo clinic where my daughter is treated is nothing short of amazing! I so wish everyone could have the best of the best ! Why can't we

Thanks for the link Cat

Allie Happy Happy Birthday!!!! I hope you have a great day and that you can enjoy this day. I am so glad you got the pill cam, It will be an easy test for you because I know your tough and you will get that pill done on your first try.

I wanted to check in to see how everyone was doing as I haven't been on here for quite a while.

Shan: Has your medicine been working as far as your vomiting? I know you said they found something in you upper GI workup.

Cat: I am sorry you have to deal with that pesky UTI..I have been told by many doctors to take probiotics with antibiotics because it really helps balance that gut flora. You amaze me on how much you know! I swear I think a lot of people on this site know more than actual doctors. I know I can probably take a medical exam and pass, even my doctors have joked that I should consider a field in medicine with all of the lingo and medical terms I know.

Welcome to our new undiagnosed friends. I know this is a very difficult position to be in and I want to welcome you guys with hugs and to let you know I am here for you if you need to chat.

Update on me: I have been doing really good on the lexapro. I actually have energy to excercise and eat and my pain has reduced 80% as well as my muscle twitches. My hemmies are itchy and they suck but I am going to start doing epsom salt baths. I have not rescheduled the pill cam because I am going more regular thanI was before this happened and my stomach cramps are minimal so I know that even if i do have something it will not show.I still get them when I have gas and nights are the worst for me if I dont sleep. I dont ever get good sleep eventhough I take two seperate sleeping pills. I will wake up and both my hands will be numb eventhough I have not slept on them. My knees will start to ache and my eye pain gets worse. I have found a website on the symptoms of firbromyalgia and chronic fatigue and I have almost every symptom! even the hemmeroids fit into the long list as well as digestive issues. I am going to talk to my doctor because this joint pain and eye pain is sooo distressing. I also have a lot of hair fall out and swollen lymph nodes in my neck which is classic in CFS.The lexapro has been working as I did not take my pills for one day and immediatley started to pay for it. Lexapro is an antidepressant that has proven to help many people with fibro. Hycosamine has also been a life saver and i take it religiously. I have not mentioned chrons to my doctors anymore because I feel like a total wimp when I describe my symptoms (diahhrea, stomach cramping, and wind) They look at me and say I definitley dont have chrons because my stomach issues would be severe and more so than all of my other crazy symptoms. The reason I was so convinced was because of the blood which has now been proven by two different doctors as coming from a very clotted hemmerhoid upon visual examination. How can someone have so many things wrong with them in a matter of months? I have read a lot of stories on here and my stomach issues dont even compare but I am still convinved there is something going on because no one just loses their appetite completly or losses massive amounts of hair or constantly feels like they have been run over.I will do light yoga excercies and walks and at night my calved and arms feel like I did a heavy duty workout, that is not normal for a 23 year old. My hands also get cramps and pins and needles pains which is not normal. I am going to go for an MRI to rule out MS which I dont think I have but I have to rule it out maybe I do have it... who knows all of my doctors are giving up on me and since i have already brought up all kinds of theories I am sure they will probably agree that I have fibro just to shut me up since that is what they are essentially treating (medicine for fibro is already what they have prescribed) I have a meeting with my counselor tommorrow to seek part time school. This was supposed to be my last year and I have decided to go part time because my health comes first. i have so many doctors appointments coming up as well as a 300.00 appt with a naturopath for all kinds of testing. I will never take my health for granted again. I am doing everything possible to get my health back. I was also looking at trying some medical marijuana for the pain and I heard it helps with digestive issues. My heart goes out to all of those suffering from an unexplainable illness. it is not easy but I think all of us are fighters and we will continue to push and look for answers because it seems some docs don't care. I dont know how many times I have been told it is my anxiety and depression that has caused me my pain, I wasn't depressed or anxious until this happened. i swear I punch the next doc who tells me that.

Right now I am getting massaged every week, I exercise every day, drink lots of water, eat a lot of fruits and vegetables and absolutely no sugar. I take all kinds of supplements and will begin a gluten free diet.

YES!!! Sorry i forgot to say it! HAPPY BIRTHDAY!!!

Allie~ it get's even more absurd... she put things in the notes to my GP that were untrue.. she said she prescribed hyoscyamine which is something she prescribed a long time ago before they found the gastroperisis, but did not even discuss yesterday. she also said she prescribed another breath test.. which she talked about but to my knowledge did not write an order for! i made sure he knew exactly what happened at that appt.. no wonder i came home crying!

FYI--- definition... Hyoscyamine is used to control symptoms associated with disorders of the gastrointestinal (GI) tract. It works by decreasing the motion of the stomach and intestines and the secretion of stomach fluids, including acid

decreases the motion of the stomach!!! i have a broken stomach that doesn't have motion!!! UUUGGGHHHH!!! :ybatty:

thank you guys for letting me know you saw what i was feeling.. it helps to have someone legitimize your feeling!!!

Cat~ my 13yr old niece is seen at john hopkins for her crohn's... they are the number one place to go in the states for crohn's.... i am about the same distance (about 1 1/2 hrs) from both temple university hospital and john hopkins. i chose temple for the referral cause they are the leader in gastroperisis, and since i have already been diagnosed with that, i thought it would give me a leg in the door! when my dr gave john hopkins as a back up plan i was thrilled!!! what a back up!!!! i just have to not get my hopes up to high... i still have to "pass" the tests so to speak! anyways... thanks for the link.. i will check it out!

Happy Birthday

Happy Birthday Allie!! I hope it was as awesome as you are!!

Allie- I hope your new "I am not sick" diet does not kill you!! :yfaint: Just be careful- I know why you are doing it, but tread lightly!!

Dayz- it sounds like you might be on to something- you might have Fibromyalgia. My brother has it and his hair fell out so much that he just shaved his head. He actually looks better. :cool2: He is only 46 years old but he walks like he is 90. He was a firefighter and he had to retire because he hurt so much and he couldn't carry the hose anymore. His hands turn purple and he can barely straighten his arms because his elbows lock up. His meds do help tho- so there is hope. I hope you can get a handle on all this. As for me, I threw up just about all day today. All I have had is some sweet tea and a little bit of soup all day. I feel so weak- I am so tired of all this. It is making me crazy!! :yrolleyes: I wish it would just stop so I can feel like me again. I hope the meds eventually begin to work.

Cat- how are things for you? Hope you are feeling better!! :thumleft:

why am I so flippin nervous ??

So I am scheduled for an upper endoscopy tomorrow after seeing my GI yesterday for a semi-urgent appointment set up by my Gynecologist. I have had one of these at least a few times before, although it has probably been around 8 years if I remember correctly.
Maybe it's the "urgency" of it that is scaring me?
I don't really like to talk about me too much on here; maybe it's because I talk so much about my daughter and sometimes my boys as well, I kinda feel like it's a bit too much ?? I dunno...
Anyhow, I have been really sick for approximately a month now. Long story short, I've been to the hospital twice in the last week, admitted once for extreme abdominal pain and 103F fever for 2 days. Of course I really learned next to nothing there except I had 2 cysts on my left ovary that are complex and one simple on my right. They honestly treated me like garbage and sadly I have excellent insurance!
So, off to my Gyno I went. I had a hysterectomy 10 years a go so the only thing left are my ovaries. Knowing this, and my history of undiagnosed digestive problems, led the doc to believe it's an underlying issue causing the cysts and they are not the source of pain. He personally called my GI doc while I was there and insisted that he see me that day, and wouldn't let me leave his office until the GI doc agreed. He agreed and off I went to see him.
It's been a little over 2 years since I have seen the GI, mainly because I put my own health on hold to take care of my daughters bad CD issues. He listened, and talked, and throughly went through all of my previous records. He ordered a TON of blood work which I went and had done this morning. He also ordered a ton of stool tests (arrghhh). Of course my guts have decided that they will NOT cooperate with those tests! LOL...I literally went from having D 10-15 x's a day to NOTHING as soon as I picked up the kit :ylol:
oh well, I'm sure it will all come out eventually :ylol:
So the GI doc believes I have severe adhesions in my lower abdomen and probably bowel either glued together, twisted, or glued to the abdominal wall...or all of the above, and the only solution is surgery. He really didn't speculate as to why I have this but we discussed Crohn's, and also we discussed previous abdominal surgery as a cause.
He and my GYN both said that there is "something" very wrong with me, they know this, but they just don't know what it is yet. Those words are probably why I am so nervous even though it's just an upper endoscopy tomorrow? Hell, I have pretty much thought, off and on, that I have CD for nearly 20+ years. (at least that is how long I have had problems and no answers).
That is also a big reason why I hesitate to post here...because it has been such an extremely long hard journey for me, and I don't want all of you to get more discouraged then you already are.

So, that's a tad bit of my story in a nutshell.
HOpefully, I can get a little sleep tonight. I feel really silly being nervous over this when I have been through sooo much more and I know this is such a simple procedure in comparison.

Thanks for listening girls!
:ghug:

Hi Crohn's Mom...

Wow that is a lot to think about. You are not being silly :yfaint: That is some scary stuff going on there. But this could be a good thing- the test can show what is truly going on and hopefully lead to an answer- and if you do have to have surgery, maybe this can help you to heal and feel better in the long run. Keep us posted- I know that you said you don't post much on this forum, but you should- it has helped me so much. The support is great. My real life friends don't really understand my woes, but it really helps to vent on this forum to people who really get it. My prayers will be with you. I feel it is all going to be OK, but please, keep us updated!!!! :ycool:

Thanks for the birthday wishes guys! You guys are awesome.

Shan, don't worry I'll be careful. I'm glad I've only got to weeks to really dwell about this (still can't believe they scheduled, and for so soon). I know if I feel really bad to kind of back off a bit. I hope you are starting to feel better, and have been able to eat something!

Jeannette, That is insane that she would fib or stretch the truth on your records. You deserve to be treated better than that!!!

Crohnsmom, you don't have to feel bad about having so much to take in! You have so much to deal with, with your children and you going through this...I can't even imagine how hard that could be! It does sound scary that they are treating this with urgency, but at the same time it is great that they are paying attention to your issues after so many years of being brushed off. I have had ovarian cysts too! Two on my left ovary, and one ruptured so I ended up in the ER. I have read threads on here and a lot of females with crohns seem to get ovarian cysts, which is really interesting. I started my crohns journey at the obgyn too because of the cysts but they ended up saying it was GI issues as well. I hope they see the issue at your upper endoscopy!!

Dayz, I'm glad you are doing well on the new medication!

So last night when hubby and I went to bed I touched my stomach and realized the place where I get pain (upper left quadrant, right below my left ribs) was warm to the touch again. Its swollen as well. When I was hospitalized it was because they could feel the inflammation by hand, but they gave up in the end in trying to get real proof. So if this keeps up until my pill cam I think I will finally have proof! For now I'm taking Tylenol to reduce the feverish part, and it has helped.

I hope everyone has a great day!

Tracy!!! Would ya tell us something??!! We care about you!! Not just because of your children! Good luck today....and if you don't mind...Let us know how it goes!!!

Tracy, how overwhelming it must be to have three sick children and two of them undiagnosed, and to be ill and undiagnosed yourself too! I can't even imagine, it must be so difficult. I'm glad you're taking some time to concentrate on your own health and I hope you get some answers. Try not to be too worried about the upper endoscopy and I hope it goes well. Please keep us posted and feel free to seek our support anytime. We're here for you! Thinking of you today, sending happy thoughts and lots of hugs.

Dayz, so glad to hear you're doing better and are on medication that works! I agree with you 100%, I will never take my health for granted again either. I also get massages (not weekly though, I can only afford to get one every couple of months) and I go to the gym twice per week although I do some form of exercise every day now. My physical therapist gave me a series of exercises for my hip arthritis, which I do daily, and I go to the gym and lift weights and run on the treadmill & use the exercise bike. My guts sometimes grumble when I work out, but I almost always feel much better after hitting the gym. It's wonderful to get back to the point where I'm feeling well and strong enough to work out, and I want to keep my health now that I've somewhat regained it so I'm going to exercise as much as I can now! I'm sure you understand the feeling!

Oh, and Dayz, I'm glad the Hycosamine stuff is working for you - I had a horrible reaction to it (nausea and vomiting). Shan, it sounds like it wasn't good stuff for you either if it slowed down your stomach even more! Sheesh. And Shan, how awful that your GI was making stuff up! I would definitely file a formal complaint, I've heard some bad doctor stories on the forum but I think yours ranks among one of the worst. I still can't get over the fact that she said she'd just cut out your colon, like it was no big deal. That's just horrifying!

As for me, I'm not feeling that great. I hate being on these antibiotics! Even though I'm taking probiotics with every meal, my guts are still really unhappy and I think my gut bacteria levels are all out of whack. I've been having a lot of cramping lately, especially at night, which is not usual for me so I'm sure it's the antibiotics causing it. Usually when my guts act up, it's worst in the mornings, not at night. Fortunately, today is my final day for this round of antibiotics (one more pill to take this evening and then I'm done with it!), so hopefully I'll be back to normal very soon. I'm feeling stubborn today and am planning on eating salad again and hitting the gym this afternoon! Wish me luck!

Capsule Endoscopy

I was supposed to be getting a Capsule endoscopy and my barium xray with small bowel follow through was so normal that they refused. I could still push for it but it won't be paid for unless I can get some kind of test back that shows abnormal, such as a stool occult blood test. Is pill cam the be all end all test? IF I can get it will I get some answers? I have had a regular endoscopy that showed gastritis, ulceration of all three: esophagus, dudoedum, and stomach, but it was done by a surgeon who told me it was due to NSAIDs. My GI offered to do another EGD "to put my mind at ease". I really need to find yet another GI. This is my second one, are GI doctors just that bad? Also as far as blood tests, is there a thread on the forum already on what kinds of blood tests could help me diagnose a GI problem?

Hi again Omaklackey, glad you found the club. To answer your questions (to the best of my knowledge anyway) - NO, not all GIs are terrible! It sounds like you've had a couple bad ones but that does not mean they are all bad. You just haven't found a good one yet, unfortunately. It means you need to keep looking. A good place to start would be the Crohn's and Colitis foundation of America's website - www.ccfa.org. There's a section on where you can search for GIs who are specialists in Crohn's/colitis. Do a search there and when you get some names of doctors in your area, you can do some googling and see if you can come up with a GI who sounds like a good fit for you.

Pill cam/ capsule endoscopy is a very good test to have, but there's not necessarily one test that is the "end all-be all" test to have. There's unfortunately no one test that is guaranteed to get you a diagnosis. Everyone is different and for some of us, especially those of us in this club, the illness just tends to hide very well! What other tests have you had? You've mentioned SBFT/barium x-ray and upper endoscopy - have you had a colonoscopy? What about a CT enterography or an MRI-enterography (scans specifically of your intestines)?

With regards to blood tests, there are a LOT of options. When I first became ill, I had many blood tests - they tested things like thyroid function, inflammatory markers, celiac markers, autoimmune markers, etc. Inflammatory markers, which would include things like CRP (c-reactive protien) and ESR (I forget what this one stands for, but I'm sure you can google it), would be a good place to start. A complete blood count (CBC) is also a good one to check in general - I believe it looks at your red & white blood cells. If your white blood cell level is off, it could indicate inflammation or an infection. If Crohn's is suspected, you should have your iron, vitamin B12, and vitamin D levels checked as those are frequently low in people with Crohn's.

Hopefully that helps a little, and I hope I didn't overwhelm you with information! Keep us posted on how you're doing and I hope that you get some answers soon.

Well I made it through the UE with no complications I knew I would..I was just nervous.

Not too much info really to give, but I was surprised that I got a printout already of what his (the doctors) suspicions are when it come to my stomach and the extreme heart burn issues I have.

Espophogas: Gastroesophageal junction at 40cm. A sliding hiatial hernia is present. Peninsulas of gastric appearing epithelium extended into the distal saphenous. Biopsies were obtained of these peninsulas. No active erosions noted. Above this, the esophageal mucosa appeared normal.

Stomach: Patchy erythema with erosions were present in the antrum. The remainder of the gastric mucosa appeared normal. biopsies were obtained...

Duodenum: Normal-appearing mucosa. Biopsies were obtained...to evaluate for celiac sprue.

notes at bottom:
1.Gastroesophageal reflux disease with histology pending regarding the possibility of short segment Barrett's esophagus
2. Gastritis with erosions with gastric histology pending
3. Diarrhea was duodenal histology pending.

So like I said...nothing too interesting. Possibility of Barrett's Esophagus peaked my interest, but doesn't surprise me considering the long term, untreated, extreme acid produced in my stomach.
They should call with biopsy results in 7-10 days, but my appt. to see GI again isn't until the 16th. He did say if my pain increases to call immediately. And also that if I want, all I have to do is make the call to him and he will do a repeat CT scan anytime I want. I am hesitant for that because I don't believe it will pick up much and I want to lesson any more exposure to radiation if I can. I also asked if we could do an MRI instead of another CT, but his concern is that with MRI you have to lay still for a very long time (like 45 mins) and with the pain I am in we're just not sure if I can handle that right now. If I insist, I am sure he will agree. I am willing to wait this out a little longer now since I seem to have their attention a bit.

I feel pretty good after the procedure, and woke up very quickly from the anesthesia, so I was released within 20 mins My stomach is more painful than usual, but I expected that since they do blow a little air in.

Thanks for all the kind words everyone I truly appreciate the support!

edit:Patchy erythema with erosions in my own little opinion...I do know this is typical with Crohn's ...I hate speculating on what may be wrong with me...but I'm no idiot to this disease either. :/

Tracy~ so glad everything went well today.. don't wait to long.. call the dr if you need to!! :sign0085: if you don't take care of you it will be harder to take care of the rest of the clan!

UPDATE~ i started a sitz marker test today.. it is a 5 day test.. you swallow a capsule w/ 24 rings in it and in 5 days you go back for another xray and they see if any are left in your system.. this will tell if my intestines have slowed down just like my stomach has.. ohhh, and i cancelled the referral to temple university hospital.. instead i asked for a referral to university of Pennsylvania in philly.. my sister talked me into it... (didn't take much though) they are ranked #7 in the US for GI Departments!! woo hoo!!! wish me luck that i don't wait 6 months for an appt!! and like i said, if i don't get in there, i will try john hopkins.. they are ranked #3!! nice to know i have some good resources fairly close to home..

:welcome: welcome to the club Omaklackey!! i am new here to.. just found them this week and was just in time for my meltdown this week! but the definitely helped me regroup and find strength to move forward..

Crohn's Mom said:

Well I made it through the UE with no complications

Click to expand...

That's the only part I understood!! But you sound upbeat, so that's good!!

hey, can someone tell me how to get my picture to show on my posts?? i uploaded one.. but it doesn't show and i don't know what to do.. :blush:

you can go to the user cp button
then click "edit avatar"

Thanks Tracy!! i am not the most computer savvy person.. but i guess it worked!