Undiagnosed Club Support Group

Hey everyone! Its true, I've been super busy with my sisters. I've depleted ALL spoons, reserve and normal. My sisters are still hanging out but I had to give up and come in my room! Still have a fever, a low grade anyway. I'm feeling like utter crap actually. I'm glad I have NOTHING planned for tomorrow other than one homework assignment!

My doctor didn't contact me today. They have a four day weekend too, because of labor day, so I can't call them until Tuesday. My dad is so upset, he was almost yelling at me on the phone about it today. I told him about me considering going to the ER and he told me to contact him if I do. All I can say about all of this is...UGH!

Sunshine, I'm sorry the SBFT didn't show anything! After my SBFT came back normal my doctor mentioned lupus as well, but I haven't been tested for it. If my pill cam comes back normal I will probably go the autoimmune route and see if I can get tested for lupus as well. I really hope they figure out whats going on soon!

HEY Guys!

Hey Y'all- Greetings from Texas...

I know it's been a while since I've posted, but like I said, I am here every day- reading and keeping up with you guys.

Sunshine- I hope you are feeling better- I can't even imagine how you must feel being in all that pain. They had mis-diagnosed me with Celiac Disease, and had said they thought I might ave Addison's- turns out I had neither. It was after being gluten free for 6 months with no better results and my last upper endoscopy that Celiac was ruled out. Have you been tested for that? Just curious. Hope you feel better soon.

Allie- sorry you are still so sick and forced to be happy and chipper with your sorority when you feel so bad. I hope you are better- but I do agree with everyone else- go to the ER- don't wait. You are just prolonging the suffering. I hope they get the results from your pill cam soon.

Hi Cat- long time no talk to. I hope you are doing great. Has your hubby found a job yet? I know how too much stress can really affect you and make you feel sick. Hope you are still feeling like you are in remission and still feel pretty good. You had mentioned the Renaissance Faire- we have one here in Texas called Scarborough Faire and it in Waxhachie, TX. It is crazy- just a word of caution if you do go- I am sure you will have lots of fun, and they should have smoked turkey legs that you might be able to eat, but just to let you know, the people who dress up are crazy- they really think they are from the 16th century so they practice the ways of those people (example- no deodorant, no toothpaste, no soap). Don't get too close and inhale, those women don't shave their pits- THEY STINK. :stinks: No joke. :rof:

As for me, I do really well these days as long as I don't eat any food. No solid food- I feel OK. If I try to eat anything, baked potato, bagel, waffle, chicken salad- doesn't matter. I get violently ill and start the stupid vomiting thing again. It is really weird- I literally break out in a sweat and feel like I am going to pass out :shifty: then I get really nauseous. It sucks!!

I also got a question- something I have not asked any of you about, but maybe the all knowing Cat may know- what the heck is wrong with my skin??? I have noticed that gradually, the skin on my face is looking more and more dirty. It literally looks like I have dirt on my face. I have these tiny little brown freckles all over my face- really looks like dirt. And no make-up will cover it up. I am only 42- I really don't think I am old enough for liver spots. Does anybody know??

Thanks Y'all. Love ya!!!:hug:

That's weird, Shan, about your face. I remember Cat talking about skin darkening with Addison's disease, but I don't know if what you describe is how it presents specifically. You could google it or something and probably find a lot more information. She was just talking about that actually, b/c Addison's came up within the last day.

I am having the same weird issue Shan! Not just on my face, but all over. All these tiny freckles just came out of nowhere. I've been just brushing it off since I have so much going on, but now I'm wondering if its actually being caused by something!

Hey Shan, glad to hear from you! With regards to the skin darkening, with Addison's I believe it can be patchy or all-over darkening of the skin that looks tan, like a suntan. If you picture president Kennedy, he looked so tan all the time - it wasn't an actual tan though, he had Addison's! It doesn't sound to me like that's quite what your skin is doing though. The only other illness I can think of that can affect the skin of the face like that is Lupus. I don't know a lot about it, but I do know that Lupus can cause what's called a "butterfly rash" on the face. I googled it and found a link with some photos. Do these look like what you've got going on?
http://cure4lupus.org/store/index.php?main_page=page&id=187&chapter=1
I hope it's not Lupus, but I do hope you get some answers soon! You mentioned no solid foods - I hope that means you're on a liquid diet (boost/ensure) so that you're still getting some calories and nutrients?

Allie, glad to hear you can rest most of the day, and I hope your GI gets back to you right away on Tuesday! I'm also glad to hear that your dad is willing to take you to the ER if need be. I hope the rest helps you feel better and of course I hope you get those pill cam results back ASAP! You've been waiting (and suffering) wayyy too long now!

Shan, thanks for asking how I'm doing - still well, yes I still feel like I'm near remission. I don't really think I'm quite in remission - I still have d a few times a week, I pass mucus about once per week, and I have ocassional cramping. If I eat the wrong thing then I feel crappy for a few days. But other than that, I feel pretty great! Definitely can't complain. No, hubby hasn't gotten a job yet - but he has an interview today, although it's for a part-time job, not full-time, so I've got mixed feelings about that. And, ew about the not shaving or bathing renaissance fair people! I am somewhat prepared for being around stinky costumed people though. My dad is a Civil War re-enactor, and those guys don't use deodorant or wash their uniforms or anything like that either. So I'm a bit used to that kind of thing! And, hubby says we definitely don't have to stay at the fair the whole day, so as soon as I get bored or tired we will leave.

On that note, I probably won't be around the forum much for the next 5 days or so - I have a lot planned over the long weekend, and I took off a few extra days since Wednesday is hubby's & my wedding anniversary. 9 years! So anyway, I won't be around as much. But I'll check in as often as I can. Have a good long weekend, everyone! I hope your tummies allow everyone to have some fun!

:congratualtions:

Happy Anniversary, Cat! Have a great long weekend.

xx
May

Hi all! I was doing pretty well for a couple days, but now I'm back to pain. I've started to experience constipation now. This is just awful. My joints hurt, my skin is super sensitive and I get rashes all the time now. I've been eating better, but it's still a struggle.
My GI called and said the biopsies he took looked "okay". I don't know what that means, but I assume "okay" means normal. Though I say I'm doing okay all the time, when really I'm not.
I have my Pill Cam on the 13th, my doc was pretty confident that he'll see something then, since the spots he took my biopsies from were the farthest he could see. Hopefully I'll get a diagnosis.
Is it possible to get a diagnosis with CD with normal biopsies?
I still have to get some paperwork done, which I'll do on Tuesday.
I'm going to put together a vent to post, because it's chile roasting season here, and the smell just drives me wild!
Anyone have plans for the weekend?

Cat, happy anniversary!!

Shan, they thought I had Celiac but when I did the gluten free diet it got worse, so not really sure what the duodenal inflammation is from.

Dahlface, Good luck with the pill cam, If your doctor seems confident with that then you should be feeling very happy that you might be able to get treated soon! By the way I hope the pain you are feeling lightens up a little for you.

As for me, I have an appointment for the mayo clinic now! It's on November 17th! But if the doctor would call the mayo clinic I could get in sooner, but they are being really rude and not even trying to help. But the lady at the mayo clinic said that if I call everyday they may have a cancellation and I can get in sooner than November 17th. That's a pretty good wait time though I think. It could of been a lot farther out than November. And I'm pretty anxious to get my blood work results back that I did yesterday. Maybe something will show up with it.

I hope everyone has a safe and tummy friendly weekend!!!

Sunshine, glad you have an appointment, and even better a shot at getting seen sooner!

Dahl, yes CD can be dx from Pill Cam images only. There are 2 members on here who had all normal tests, then did a Pill Cam, and were diagnosed with CD.

Howdy Y'all illowfight:

:luigi:Hi Cat- Happy Anniversary!!! Hope you have fun at the Ren-Faire. :jokercolor: As far as my freckled face- it doesn't look anything like the pics you sent me. Thanks. I am sure I don't have Lupus- my face just looks dirty. Even though I am a red-head, I have olive colored skin and have never had freckles, so I really don't know this is. I have tried foundation, powder, mineral makeup- nothing covers it. It just looks like a bunch of clusters of these little brown freckles that when you look at me from a distance, I look like I have been playing in a dirt pile. I am frustrated. Don't know what is causing it but it looks ugly!!:frown: As far as my vomiting issue, I haven't really been eating at all. Good news is, I have lost a total of 25 pounds since May 2010. Cool- I guess. I look pretty good- have lost two jeans sizes. I just don't get hungry so I don't eat at all, and when I try I get pretty nauseous. But today was a good day- I actually had a tuna sandwich, chips, milk shake, and a cinnamon roll. So I guess when I can eat, I kinda make up for all the times that I don't. :ylol:

Allie- not sure if we have the same freckle issue but it kinda sounds like we could. Like you said, mine just showed up one day. My friend was like, what is on your face? Then she licked her finger and tried to wipe my face-EEEWWWW. It was gross, but funny. I don't know but I don't like it! :thumbdown:

Hope all you other young-uns are doing well. Bye for now.

Sunshine...it is very true that if your doc would call them they will get you in sooner ! I originally made Gab's appt. myself, and then her doc was nice enough to call herself and had the appt moved up a month sooner ! The way I found out that this happened is that the doctor at the Mayo clinic called me himself to let me know! Seriously, bug your current GI to death to call the Mayo clinic on your behalf and speak to them...it WILL make a difference !
Man o Man, it's so worth the effort !
I hope and pray that they get you in sooner...you don't need to sit and wait in pain until November !

Wow! That's a big difference in appointment time! Everytime I call the doctors office they are really rude to me, and all i am is very nice to them... the nurse keeps saying that they've never had to call the mayo clinic to make an appointment before. I'm like can you please just keep trying. I need help! It's been a week now since I've been ill. Now I just have stuffy head, cough, and sometimes my ear feels stuffy in my right ear. kinda weird, but annoying at the most. Stomach is doing better, just I feel exhausted and drained from being sick all week and now having a stuffy head. Never been sick for this long. Hopefully my doctors office will call the mayo clinic, I don't know how to make them call them, I feel like they keep saying they are calling but they aren't because my mom asked the mayo clinic if they've gotten a call from them and they said they haven't, but the doctors office said they've called twice... so something's not right. and I'm getting upset because I just need help and I know I'm not the only one who needs help but it's just a simple phone call really.

Hi Everyone!

I wanted to check in to see how everyone is doing.

Cat I was so happy to hear that you are in remission I hope this lasts a VERY long time for you and that way you can get a break from all of this. I have missed talking to everyone and I have been reading all of our new members stories and keeping up with those as well.

Allie I am so upset you havent gotten your results : ( I have been checking in to see if anything has shown up. I hope you get those soon for both you and your sister.

Sunshine, I have heard many great things about Mayo and that they do the million dollar work up. I hope they do and then some! They need to figure out what is going on.

Carrie, I have been diagnosed with fibro as well as somatization disorder and the medication for both is the same, antidepressants. Fibro, from what I have read definitly can cause IBS symptoms sometimes even severe. I would definitly try some medication to see if it helps.

Dayz, nice to see you around, how are you doing these days?

Well the brief cold I had last week has turned into a nightmare. Severe sinus pain on my left hand side of face, jaw and neck. Can't seem to shift it with decongestants so think I will finally go to GP tomorrow and insist I need something Must be an infection to cause this and I will tell them so lol.

Hi Dayz! I'm on anti depressant medication already, but it's for bipolar disorder so isn't the same stuff as for fibro. I'd like to get to a point where I can wean off my current meds so I can try something new. My rheumy won't give me anything else unless I go off those meds.

Dayz, that's interesting that Fibro can cause IBS symptoms. And yeah, I'm frustrated too. I'm calling the GI's office tomorrow to remind them that I need those results, and see what they suggest to do in the meantime. I haven't had a solid BM in months, and going 12 times a day is really frustrating...if I didn't have tramadol I would have been in the ER a LONG time ago, its the only thing getting me through each day.

Star, that infection sounds awful! I really hope that clears up soon and that your GP can help you with it.

I hope everyone had a good labor day weekend!

I've really been slacking on the carafate, and I can tell. I wish it wasn't such a pain in the butt to take. Fibro, man, I swear it causes every symptom under the sun.

Allie, I hope the GI has any kind of update for you tomorrow.

Hi Starr: I am so sorry you have a cold : ( how is your stomach? I hope it is backing off a little so you can recover from your cold pronto!
I just started my last year in college and am due to graduate May 19th 2012. I have been really busy with school and planning my graduation party and it has helped keep my mind off of all of this. Physically I feel great but mentally is another story I have frequent nightmares about everything and I just don't feel right. Even though my life seems perfect I just cant seem to shake off this unexplained fear. Like I am constantly paranoid about getting into a car accident or getting sick again or even that I wont complete my work and graduate on time. I am seeing a psychologist for all of that but it has been a roller coaster ride all this summer. Depression and Fibro Suck!
Allie: I hope you get those results! I cant believe they have taken so long to give that back to you. They really need to get with on the chrons wagon and realize that you are in pain and you have been for a year. It makes me mad that they did that to you:ywow: If I was in Germany I would have kicked some butt!

Carrie: Yes Fibro is a beast. It can even cause hemorrhoids and yeast infections...both of which I have had. I am glad you rheumy believes in it because many doctors do not even acknowledge it is a real disorder. Many people have told me that somatization disorder and Fibro are not the same and that somatization disorder is psychological whereas Fibro has to do with your nerve and muscles and the way your brain perceives pain. I am pretty sure I have one of the two and I also am a hypochondriac, since I was a child, so now I go through the joys of pain and then worry and then more pain. But with the medicine I have been taking, physically, I feel good and I am on my 36th day of the P90X workout. I would have never done that two months ago. I just want to let you know that it can and will get better for you! If you have any questions or just went to vent send me a PM, I will be more than happy to reply : )

I have a hard time accepting fibro as a valid diagnosis. I do believe it's a real disorder in a way, which is to say: I believe it exists, but its hard for me to believe it exists on its own. There's no definitive test for it which, to me, means the doctor should not stop looking just because they dx'd fibro. My whole body feels like it's falling apart, I dunno.

My GI and my rheumy both seem to accept fibro as valid.

Well I got nowhere with GP, he was just awful Said it was flu (what flu makes the left side of my face, ear, neck even teeth hurt and swell, and now spreading to right side), ignored the fact that I am under Hospital for long term health problems, and seemed to be going to give me anti-biotics, until he saw I hadn't had any for a few years, which obviously decided him no matter what I have I will recover from!

God almighty, do I have a sign on my head which states "Drs, do not help uner any circumstances"?

I have so much to do this week, and 2 Hospital appointments next week which I CANNOT CHANGE, but I am feeling so ill and in so much facial/ear pain and the headache I can't begin to even describe. I am eating nothing, to the point of no BM's since there is nothing being put in there, feeling very sick and water is the only thing that doesn't make the sickness worse.

Told me to go back by Friday if get worse, how helpful, how am I to do the stuff I have to do this week then???? Oh and carry on with the painkillers which aren't working. Who's betting I end up back on Friday but can't see anyone else besides that idiot.

I just give up, I am not even going to try and get better anymore, it is impossible, I have no energy left Time to crawl into bed and just stay there for a few years. I can't take this anymore.

Oh star. I don't even know what to say. This whole situation seems so frustrating. You seem so ill...have you thought about A&E? I know with how I am feeling, and how my doctors are treating me, I have thought about the ER. If you get any worse you should go. You don't want an infection to get into your bloodstream..that is really bad news!

Dayz and Carrie..the fibro thing is an interesting subject. I've always associated fibro with IBS, because they seem to both be catch all's because there is no specific test for it. But then when you think about fibro in another light, it seems to be an autoimmune illness that really isn't understood yet. It makes me wonder if I should bring up fibro with my doctors..I have issues all over my body, not just my digestive system. Which is another reason why my last GI suggested Lupus, and why I'm going to get tested for that as well. I don't consider myself a hypochondriac,and my husband put it best why...something is seriously wrong, this is not IBS, and I just want to figure out what so that it doesn't shorten my life.

Today is kind of a chill day for me. It wasn't suppose to, but a meeting got canceled and I am not feeling well at all! I'm currently in bed, heating pad on my belly, hoping my meds will kick in soon. I'm frustrated on how often I'm having to use tramadol now. I pretty much can't live properly without it, and even on it I'm going 4-8 times a day, when it used to make it where I couldn't go for days. Very frustrating! I've been up for 3 hours now and I've gone 4 times, all covered in dark yellow mucous. I know you are not suppose to rely on this stuff...and I feel really guilty..I'm not addicted, I just get in so much pain that I take it. Do any of you have this struggle with pain meds? I hate it.

Allie, I don't suppose the GI called or anything?? I'm taking my tramadol more lately because the pain is just ridiculous. I'm still trying very hard not to take my entire daily dose which can be 1-2 tablets every 4-6 hours. I don't think I've had more than 6 in any given day.

Yeah, the GI didn't call, and because of the time difference i wasn't out of bed fast enough to call myself.

I'm prescribed 4 a day as needed, and I'm on the 50mg, which lasts about 6-8 hours. I usually take anywhere from 1 - 3 a day, and I usually overlap them. When I asked my GI what else I could do for the pain, he just gave me more tramadol, saying that's all I can do for now. Someone on facebook posted a pain killer chart today, and tramadol is one of the weakest prescribed pain killers. I've done really well on it the past year, but I know its the only reason I get through being this sick with no treatment...

My prescription stops mid-october, so if I don't get something figured out soon I will not have any more tramadol to keep me going. I'm really hoping my GI gets to me soon. THIS IS RIDICULOUS!

StarGirrrrl said:

Well I got nowhere with GP, he was just awful Said it was flu (what flu makes the left side of my face, ear, neck even teeth hurt and swell, and now spreading to right side), ignored the fact that I am under Hospital for long term health problems, and seemed to be going to give me anti-biotics, until he saw I hadn't had any for a few years, which obviously decided him no matter what I have I will recover from!

God almighty, do I have a sign on my head which states "Drs, do not help uner any circumstances"?

I have so much to do this week, and 2 Hospital appointments next week which I CANNOT CHANGE, but I am feeling so ill and in so much facial/ear pain and the headache I can't begin to even describe. I am eating nothing, to the point of no BM's since there is nothing being put in there, feeling very sick and water is the only thing that doesn't make the sickness worse.

Told me to go back by Friday if get worse, how helpful, how am I to do the stuff I have to do this week then???? Oh and carry on with the painkillers which aren't working. Who's betting I end up back on Friday but can't see anyone else besides that idiot.

I just give up, I am not even going to try and get better anymore, it is impossible, I have no energy left Time to crawl into bed and just stay there for a few years. I can't take this anymore.

Click to expand...

He didn't test you for the flu before saying that this was the cause?? Anytime I have thought I had the flu, they tested for it before telling me it wasn't it. So he was going to treat a virus with antibiotics? Is that what you are saying? What a quack.

Please don't give up! We are all here for you. Remember that. :soledance:

I'm not pretending to be a doctor or pharmacist, but tramadol is clinically acceptable at up to 100mg per dose not to exceed 400mg in 24hrs. If you need quick pain relief, perhaps you can think about asking your physician if you can up the dose for say a couple days, then back down. Maybe your pain just got ahead of the medication? It's harder to tame down if that's what happened. ANother thought is you may have developed a tolerance. The next stronger opiate up from tramadol would be vicotin, then up to percocet.

I take tramadol too. It works for lower grade pain for me. But it hits a ceiling, then I take dilaudid which is essentially synthetic morphine. I think when we suffer from pain as often as we do with IBD, our pain sensors develop a higher tolerance. What we think feels mild to moderate perhaps to a "normal person" might be moderate to severe.

To me, it sounds like you might need a bump up (higher dose or more power) in pain relief.

When I told my rheumy it wasn't enough, she also just upped my prescription. I have the 50mg pills as well. I don't expect to be able to get a better painkiller out of any of my doctors. I'm not allowed NSAIDs right now so all of my migraine medication is sitting gathering dust. that helps in conjunction with the tramadol for me, but I'm never pain-free. except for those moments I'm getting a procedure that involves dilaudid like my scopes. it takes a some hours past the procedure before the pain really starts to come back.

Thanks guys for the suggestions. I do take two at a time when it spikes, and I have heard from several others and my GI that that is perfectly fine. I agree Regular Joe, my pain tolerance has gone up a lot! I have broken bones since I have gotten sick and thought nothing of it. I think at this point I'm fine with the dosage I'm at, I just hate taking it. I would much rather take tylenol or advil, but like Dayz said, NSAID's are a no no, and tylenol doesn't touch my pain...I only use it for fever reduction. I know once I get on the right diagnosis and treatment plan this will get a whole heck of a lot better!

Just stopping by to wish everyone a good tummy day!

Carrie630 said:

I have a hard time accepting fibro as a valid diagnosis. I do believe it's a real disorder in a way, which is to say: I believe it exists, but its hard for me to believe it exists on its own. There's no definitive test for it which, to me, means the doctor should not stop looking just because they dx'd fibro. My whole body feels like it's falling apart, I dunno.

My GI and my rheumy both seem to accept fibro as valid.

Click to expand...

My mother in law was dxed for years with fibromyalgia. Then some doctor in the last couple of years checked out her back and it turns out she had a bunch of discs that were all messed up, which was the root cause of all of her pain. I think it is kind of like IBS, in that it is a "we don't really know what is wrong with you" kind of functional disorder. Someone on here called both of them "wastebasket" diagnoses. I guess it's where they file the people that they don't know what to do with.

Mayflower - my pain has always been blown off since I was about 14. I did have a bad disk that I had to have surgery on (just a few years ago - in my mid 30s!). My chiropractor of all people was the one who listened to me and got me an mri which led to surgery. It's hard to deal with getting blown off all the time.

It is really hard to be blown off all the time. I HATE this IBS crap. I can see where some people can get stressed and have tummy issues, so I can see its purpose, but doctors shouldn't use it for everything. Stress would not cause MONTHS of D, extreme pain in one place, etc. My GI, before my ulcer that went through my tongue, even said my hospitilization wasn't enough to show that I was sick. Absolutely ridiculous.

On that same note, I have noticed something recently that scares me...my feet are smaller. I didn't think anything of it at first, but in the past year my feet have shrunk significantly...two whole shoe sizes. At first I just passed it off, but I did some research and osteoporosis can cause it. And people with small bowel crohn's can get it. If I have lost that much bone due to my illness, because a doctor isn't caring, I don't know what I'm going to do. It really upsets me that my whole body is messing up because my GI's want to ignore everything I'm going through.

Allie, wow that sounds like you need to get your results back fast so you can be treated and get healthy again... Sounds scary to have your feet shrink... When are you suppose to hear back from the GI about the pill cam???

I went to the GI doctor today and my blood work showed that my C-Reactive Proteins (CRP) were high, and he said that he thinks it's IBS but he said the CRP could be off because of crohns or if another part of my body is inflamed or being irritated. So he said he can't be sure of whats causing the CRP to be off, and in order to know if it's crohns for sure is to do the pill cam, so I'm waiting for an appointment call to schedule that. Has anyone else ever had the CRP checked before???
Also, should I still go to mayo clinic if we do the pill cam and it's normal, and just stick with IBS diagnosis, or should I go to mayo to make sure nothing else is wrong? Well, I don't want to think too far ahead because the pill cam might show something. I just want to feel better. And if it is IBS that stinks because there's no real treatment for that either. Plus I have inflammation in duodenum so I still don't know where that is from... Hmmm so many questions lol. I know I'm headed on the right path though checking everything just in case. I hope I dont have crohns because that's scary... I just want something easy to fix! sorry for rambling!

I think you should go to Mayo, as long as it isn't a financial hardship. Not everyone has that opportunity. And it still sounds like you're getting the run-a-round. Maybe at the very least they can give you a valid reason for the inflammation in your duodenum. Others on here have had high CRP in the past. I have never had that checked. I think all it means is that there is some inflammation present in your body. So your old GI is still treating you? I guess that's good, that he's not leaving you in the lurch. But if I had the opportunity to go to Mayo I would jump at it.

Allie, that's insane about your feet. I'd go see a podiatrist about that, in case it's coming from something else entirely.

Yeah I think I will definitely go. And my old GI is not seeing me, he refuses. But I have a new GI that the ER doctor recommended And that's what hes been telling me about the Hugh CRP and stuff. Since I needed someone to help me I had to get a new GI in the mean time before I go to mayo. I hope my old GI calls the mayo soon so I can get an earlier appointment besides November. The pill cam is a good idea though so I'll be doing that in the near future too while I wait for mayo. I'm surprised no one checks CRP in the blood more often. Seems to simple to do lol. Crazy doctors!

I have what they call "Mild Crohn's" (yeah right! Is there such a thing?). My CRP was not off the charts, but rather an "in between" area. Combined with the colonoscopy where my GI could see inflammation, that's how he called it. I believe CRP is a good measurement. because if the GI or Rheumy understand the numbers and know your history, it's probably pretty obvious.

I know all about CRP, mine has been raised for 5 years straight! Like I told my new GI, I appreicate my numbers are not sky high but they are higher than average. My ex-GI basically ignored it once the other tests came back normal.

It is an indication of imflammation in the body, although it cannot say where/why. Normal range is 0-10. With a raised CRP and symptoms like ours it doesn't take a genuis to add things up ie 2+2 =IBD! It is dismissed by alot of Drs though. Other bloods to test inflammation include ESR and C3C4 (just had the latter done for first time, results Monday).

Some with raging, confirmed IBD have normal CRP. I think that is why I am having a hard time with GI staff over this (although Rheumy is 100% satisfied it's abnormal and for a good reason).

I'm feeling a little better today... thinking it is maybe just a nasty virus. So fluids, rest, food when I can, vitamins and paracetomol I guess until I pick up If I start to feel worse I will go back to GP Friday or if doesn't improve will be next week. I know being long-term sick doesn't excuse me from normal bugs, but when they drag on like this it really gets me down

Hello all. I've been lurking around the forums for a while and I think I belong here in the undiagnosed club. I'm at the very beginning of the gauntlet all of you have been running for a while. I'm keeping my fingers crossed that the GI I'm going to see will be a compassionate one. I had a bad experience with a GP many years ago and was so mad I told her that she was fired and walked out. Doctors these days see a lot of patients and sometimes I wonder if they don't stop looking at us as people, instead viewing us as the steady stream of problems presented at their feet. If the GI I'm seeing Monday isn't a good one, I won't hesitate to fire him, too.

Anyhow, nice to meet everyone, see you around.

I'm taking a spoon/giving up day. I have finally begun to taper off the d, after 3 months of constantly having d. But I have about the same amount of urges to use the bathroom with no bm. It has increased the pain a lot, but I am able to have a somewhat formed stool once a day. And my stools are always a really strange color, either very dark or very light, or the color of something I drank.
My joints and back are killing me. And now I have daily migraines. Even though my bowel habits have changed slightly, I feel even worse now. Any treatment options seem so far away and I don't know how much more I can take. I hope things change soon.

sorry for the grumpy pants, everyone. I think the depression has finally caught me. Tomorrow will be a different day though. Perhaps it will be better.

Yeah, CRP is a common way doctors measure the inflammation in your body. Some crohn's patients don't have any CRP readings even though they are in a flare! My CRP has been a little higher than normal, but not enough for my doctors to care about. My old GI liked to test for anemia like crazy, instead of CRP, to see if I was bleeding someone in my small bowel.

Welcome to the club Maiden!

Sorry about the spoon day dahlface. I have those all the time. Hopefully yours will help.

Thanks Allie!

dahlface, I'm sorry you're not feeling well. I'm hoping for a better day tomorrow, too.

Regular Joe and Star, It stinks that CRP levels aren't really very accurate as to what in your body might be inflamed, but like you said the symptoms are there, so it could be my intestines that are inflamed... but I was in a flare when I got blood taken, so it could of been from everything that was freaking out when I was in a flare... We will see I guess when I do my pill cam. I had a colonoscopy done before and that didn't show anything, so hoping pill cam can give my doctor a path to go on in fixing me.

What other tests are there that a Rheumy can check for with stuff like IBD??? because as far as I know, the only blood test that had anything to do with inflammation and such was the CRP level that I just got done, so kinda wondering why I haven't gotten anything really checked out with my blood besides that. They should be checking for everything and anything, just because whatever they might find might be the key to the answers. But, for now, i'll just do the pill cam, and then if that comes back normal then I am still going to the mayo clinic when my appointment comes around just to make sure I don't have something hiding so that we can definitely cross things off the list. Don't wanna go misdiagnosed!

Welcome, Maiden!

Hmph...why have reference ranges for bloods if the docs just choose to ignore, what in their mind, can't be explained. An abnormal CRP is abnormal whether it be 15 or 400.

Sarah always had normal bloods even when she was extremely ill so in her case I always go by what I see in front me whether the tests support it or not.

Dusty. xxx

I know Dusty it is so frustrating. Even in my last A&E visit where the Registrar was very kind and helpful, ie topping up the oral morphine given by nurse with more pain meds, and recognising I was flaring with "whatever you have" said he wouldn't be worried unless it was in the 80's or higher!

Sunshine, there are several other blood tests mentioned to measure inflammation. Probably some more I don't know about too. I am really learning beyond the standard wall of tests there is so much left to do. I've had all the GI tests under a GI except Pill Cam (did not meet funding criteria and the decision isn't taken by the Hospital, but by the local health authority, Primary Care Trust, who dish out the money) and they can't dx me with IBD. Rheumy is going a more auto immune route. Since if GI tests didn't find IBD was causing the problem, there must be a bigger illness at work causing my various symptoms. I have been tested for several so far, not sure how many are left! You can see from sig what he is thinking of at the moment (next appointment Monday). We have even discussed a trial of immuno-suppressants without a dx.

I think I can't rule out CD 100% unless I have a Pill Cam. But I could not get funding approval and now the only way I could possibly get one is if I become aneamic. Since the other criteria was CD positive biopsies, and i've had all my scope biopsies come back normal.

Good luck Maiden and it's great the no-nonsens attitude you have with the Quacks (ooops I meant Drs!).

Well, my GI finally got back to me.

"I am writing to inform you that the capsule endoscopy study performed for
Alisa Erkes was normal. Sorry about the delay."

I am devastated. I surely thought this would show the issue. I've been crying like a baby since I got the email.

This can't be IBS. IBS would not cause joint pain, weight loss, and no solid BM in months, even with the constipating effects of tramadol.

I've decided I'm going to see a Rheumatologist here in Atlanta as my next step. My past GI, who saw most of my symptoms, believed it could be Lupus or another autoimmune disease. So I guess I'm going to take that step next. Something wrong and I need it fixed. I just don't know how I'm going to face another doctor with all of these normal test results...

Please don't think I'm crazy...

ALLIE!

:hang: :hug: :ghug:

maybe you need to have a illowfight: to cheer yourself up a little. (ok I just really like this emoticon, plus you can imagine smacking the GI over the head with an extra hard pillow!)

awh Alisa, i'm gutted for you really I am. I am delighted it hasn't shown anything nasty though if you know what I mean but I so know you were hoping to get an answer. Medicine is just so not black and white I really think your best bet is the rheumatologist and that they can find the problem and help fix it. Do not let anyone make you think you are crazy you are just desperate to feel better. I really hope you get some help soon.

I'm back everybody! I had a super fun, very hectic few days off. I even ate a few unsafe foods and didn't pay for it too badly! I went to a food festival, hung out with my bestie (who is a confirmed Crohnie), went to the renaissance fair (it was more fun than I had expected!), went down to Illinois and shopped at Ikea and this Japanese market (I love bento boxes and got myself a new one, also was brave enough to eat some sushi which I used to love before I got this gut illness, but hadn't been brave enough to try any raw foods after my guts went crazy), oh and of course hubby and I celebrated our 9th wedding anniversary. He made me a chocolate cheesecake for the ocassion, yum yum! I usually don't eat breakfast but this morning we both had cheesecake for breakfast. I feel very good, I de-stressed a lot and had a lot of fun the past few days! Oh, and got some good news too - hubby got a job!!! It's not perfect, it's only part-time and it's weekends, but it's still better than what he'd been doing (he was working part-time teaching art classes, but that was only about 3 hours per week - this new job will be more like 16 to 20 hours per week). At the very least, it'll be something he can put on a resume and he's going to continue looking for full-time work.

I see I missed a lot on this thread! I'll try to respond to everyone briefly.

Maiden, welcome to the club! I hope your new GI is good, please keep us posted. It sounds like you haven't been ill for very long, or are just at the beginning of the diagnostic process? Would you mind telling us more about yourself and your symptoms? (You may have already posted that kind of info in the My Story section, and if so, I apologize - like I said, I was away from the forum for a few days and am just catching up on everything now!)

Dahlface, sorry to hear you're feeling worse. I feel for you with the migraines, I never had them daily but I did start getting them on about a monthly basis when I first became ill with this gut thing. I'm sure the two must be connected for me, and it sounds like that could be the case with you as well. I've heard the term "abdominal migraine" used on the forum from time to time, although I don't know much about it. I never ever got migraines until this gut illness - I literally had one migraine when I was a teenager, and that was it up until a few weeks before I turned 30, that was when all hell broke loose and my guts went crazy and I started getting migraines with the weird visual auras. Not fun! Do you take anything for the migraines? I'm on 25 mg of Amitriptyline, and as long as I've been at that dose, I have had zero migraines (for a few weeks my GI bumped me up to 40 mg, and I had a migraine at that dose, so he put me back down to 25 mg and I'm fine again). I believe Joan (Astra) was talking a little while ago about how she was having chronic headaches and she was doing drastic stuff to relieve them. I believe she cut out all pain meds and all caffeine. Anyway, I'm rambling, but I hope you get some relief soon! Migraines suck!

I see there's been some discussion about CRP lately - yes, as others have said, it can be a decent measurement of inflammation, but in some of us the bloodwork will come back in the normal range even when we're horribly inflamed and ill. It's not totally reliable. My CRP back in late winter/early spring was 17, and I was still having some issues at that time. More recently, in June of this year, when I was feeling quite well like I am now, my CRP came back as 10. So for me it is a pretty good measurement of how I'm doing. (My GP said anything between 1 and 8 is normal, my GI said normal is between 1 and 10. So again, I'm not quite sure if I'm actually in remission or just very near remission.)

Allie, I don't suppose you've heard anything about those pill cam results lately? I saw on your facebook the other day that you still hadn't heard anything yet. Have you gotten ahold of your GI since he's been back, is he at least working on it?

Star, that virus sounds horrible! It seems like such insult to injury when we get ill on top of already being chronically ill. I hope you feel better soon! And don't let that GP put you on antibiotics if he thinks it's a virus. Antibiotics always make my guts worse anyway so I don't take them unless I absolutely need to.

Sunshine, I hope you're able to get into the Mayo Clinic soon! November is a long way off, too long when you're suffering like this. Keep on your doctor to call them, and also try calling yourself and see if they have any cancellations. And personally, I've had luck with crying on the phone - got my colonoscopy bumped up by several months because I ended up crying on the phone with a nurse at my GI's office. I didn't intend to cry, but my tears were legitimate and I was really suffering at the time and honestly did not know how I was going to make it through the next couple of months until my scope. The nurse took pity on me and gave me an appointment the following week.

If I forgot to respond to anybody, sorry, didn't mean to ignore anyone - there were a lot of posts while I was off having fun! I hope everyone is doing well or at least hanging in there.

Allie, I must have been writing my long post as you posted your pill cam results - how heartbreaking! We definitely do not think you're crazy, I certainly do not (as you know, I've also had normal pill cam results). I hope you're able to get a Rheumy appointment quickly and that they can do some testing that will at least point you in the right direction towards a diagnosis. And I really hope it isn't Lupus, but I hope you do get some answers and quickly too. Hang in there, I know how devastating "normal" pill cam results can be (did they send you any images or just say that it was all normal? I never got to see my images and sometimes I wonder exactly what was seen or not seen). Feel free to PM me or facebook me if you need to vent, I'm here for you. Sending big hugs your way!

Thanks Cat I am going back to GP tomorrow since my ear and face pain is getting worse. All I want is the anti-biotics! I sometimes get the runs at the end of the course but otherwise they don't affect me. Even if they did this infection needs treating.

One thing this horrid pain has done is take my mind off Rheumy appointment Monday!

Allie, I did reply on your other thread, but is there any way you could ask for the images and have another GI look them over? Even if you had to pay may be worth it for a second opinion.

So Sorry

Oh Allie :quack:

I am so sorry:ywow:. Hang in there. NOBODY thinks you are crazy. Keep trying to find the answer. You are a beautiful and strong girl- God will help you to find the answer. I know He will.

:hang:

Wow, Allie, that is so hard to believe. That sucks for you, but maybe a rheumatologist will be able to figure you out. I am so sorry that you still have no answers. That is crazy. I so thought if any of us were going to graduate from this club, it would be you. Wow I am in shock...

Im guessing this is just a general chit chat for us undiagnosed people?
If so, You may have seen a couple of my posts on the boards, if not. My name is Abby, 25 from Australia =)

Oh Allie, I am so sorry that it didn't show anything. I dont think you are crazy at all, you are a very mature and grounded women. I hate to see that nothing showed up. I am sure there is something that isn't right and from my experince Nurse Practitioners really take the time to listen. Also a good doctor that takes his time to listen to you. Now that you are in the states maybe you can start looking for a good doctor who will believe you and test you for everything. I am sending a big hug and many prayers your way!

Allie!! We are all praying for you! Sorry that you didn't get any answers from the pill cam.... i know i am going to be pretty devastated if I do the pill cam and nothing shows either. But at least I am going to the mayo clinic in the near future hopefully. You should really check into that place you were talking about that's kinda like the mayo clinic. Maybe they can better assist you with pursuing answers of why you are feeling so sick. I am really upset you didn't find anything today Can't imagine how you are feeling... I'm very surprised how we can all have stomach issues and yet nothing ever shows up! what's up with that? It's crazy and needs to end soon, so we can all get treated! Anyway, I hope you are dong better, Allie.

Thanks everyone for the responses.

Cat, they didn't get me any of the pictures, but my husband is going to call and request them. He says he wants to see some of them himself. I also talked to one of my friends here, and at some point if I go to a GI here I will probably get the images sent to them and get them relooked at. The GI that did the test was dead set on it being IBS, and he obviously did it in a hurry, so I'm not sure if it was done the best way. I hope its not lupus either, but I just want another specialists view on my case to see what they think!

Sunshine, I hope yours gives you answers. I had prepared myself for it being normal, but I had my husband going "it can't be normal, it can't be normal" so it still devastated me. Trust me, I don't WANT crohn's, but I'm at the point where I need answers. You guys understand.

Volcom, welcome to our club! Yeah this thread is where we just chit chat.

The Rheumy I'm hoping to see if my friends, and she says he is amazing. She isn't a textbook case either, and this guy never put her down for her issues. Her dad also sees him, so I'm confident in seeing him. I found out I have to get approval from my doctor in Germany to see someone here, and I supposedly should have done it before I left. Then I have to see if this Rheumy takes my insurance. THEN I can make an appointment, which this guys books a lot of people so it might take awhile to get it. Oh the joys of more waiting!

Am pleased to say I got some anti-biotics, saw the same GP and he was like a different man, "oh we don't want you to suffer" "would you like ear drops or anti biotics". :dance:

Am so pleased I will start to feel better soon, ready for Rheumy on Monday. I have even been worrying over dental issues since this infection has given me toothpain (not toothache since you could draw a line down my face where the pain has been, obviously not a dental problem) and I didn't want things in that department messed up. I hate going to the dentist! :kiss:

YAY thats awesome!!! I'm so happy for you star!

Allie, we completely understand! None of us WANT anything crazy to be wrong, but like you said, we just all want answers! To every problem, there HAS to be a solution.

Star, I love the dancing banana! haha It just makes me smile everytime I see that! And, congrats on getting some antibiotics so you can start feeling better!!

PILL CAM SCHEDULED FOR TUESDAY THE 13th! Prep on the 12th! nervous about the prep since not allowed to eat of course, hoping my gastritis stays calm during it all.

YAY for you Sunshine!!! Hopefully It will show the issue!! If not we can go through this mess together!!!

That's fab news Sunshine :soledance:

(I was going to use dancing banana agian but I restrained myself lol)

Sunshine, we both have Pill Cams scheduled on the 13th! Nervous about my prep because last time I vomited all over myself. Good luck to you!

Sunshine, best of luck with the pill cam (and of course the prep)! I really hope you get some results! It's about time somebody in the club got some answers from the pill cam already. We may need to start a "Had a Normal Pill Cam" Club. I know that Mayflower, Allie and myself could all join. Anyway, I really hope this is the one that gets you some answers - best of luck, feel free to ask us any questions about the procedure (as always, the prep is the worst part), and of course keep us posted!

Speaking of the pill cam, Star, I saw on another thread (Crag's thread about his second breath test) that you may possibly be able to get the pill cam at a different hospital? Or at least you are looking into the possibility? I really hope that works out for you, I know how badly you've been wanting to have the pill cam yourself! Please keep us posted on what you find out about that, wishing you best of luck too! And glad to hear that you got anti-biotics, I hope you feel better soon. And, last but not least, I hope your Rheumy appointment goes well on Monday! Good luck, fingers crossed for you.

Allie, I hope you're able to get to see a Rheumy soon, I know we are all too familiar with long waits for appointments! You're only in the US until December or January, right? So you'll end up seeing this Rheumy once, maybe twice, and then have to find a new Rheumy in Germany when you go back? I hope the one you go to here in the US is good and can run lots of tests for you while you're here (and that they're easy tests with little or no prep involved!).

I hope everyone has a good weekend!

Dahlface, I missed seeing your post - best of luck to you with the pill cam as well! How funny that the two of you have it scheduled for the same day, what are the odds? I hope the prep goes easier for you and that you don't vomit. You may want to check and see if they'll allow you to take something for nausea such as Zofran when you prep. When I had my pill cam, they let me take Zofran with the prep and I did not vomit (I took no Zofran during my c-scope prep, and I did vomit then). Good luck! I hope both of you get some answers from your pill cams!

Yeah, i might not get to see a Rheumy very many times while I'm here. The good news is Lupus is just a blood test, and maybe a biopsy of the kidneys. It isn't as long and drawn out as Crohn's. I'm not quite sure about other possibilities, since I have focused on GI for so long. If I don't feel well by December I might even stay here..I need to put my health first. this bad luck I've had needs to stop! This is NOT IBS.

Allie, that's good to hear, that the testing process for other illnesses isn't as long and complicated as IBD testing is! I don't know much about Lupus or most other auto-immune illnesses, but if you do pursue Addison's testing that is an injection/blood test with very minimal prep (no food/water after midnight the night before, and go in first thing in the morning for the test - I was a little bit thirsty during my test, which lasted about 2 hours, but it wasn't bad at all).

How do they do a kidney biopsy - do they go in laprascopically? If so, they may as well check for intestinal endometriosis while they're in there, right? At least that'd be another thing to confirm/rule out if they're going to have a look around inside anyway?

Exactly. You're right...maybe I do need to just get cut open and take a look. I know that crohn's can exist on the outer layer of the bowels too, which would be another possibility. MoutainGem's tests were all normal because the outer layer of her bowels were hard as rock, not the layer a scope can see!

Why does this all have to be so complicated?

Dahlface, wow that's crazy we both have it the same day!!! What a coincidence!! Maybe that will bring good luck!

Allie, If I don't get anything from the pill cam, then yes we can get through this stuff together! Maybe we should start a normal pill cam club like Cat mentioned lol if Dahlface and I don't get any answers from it either lol. The wrong clubs are getting bigger, like the undiagnosed club. it's really sad how many people all have normal results but still have so much suffering to go through. we will all get to the end of this, hopefully sooner than later! Someone has got to find answers soon!

I didn't know anything besides endometriosis could be on the outside of your intestines... interesting. I'm confused about the rheumy route as well, since we have been so focused like Allie said, on the gastro stuff.

Cat, as far as migraines, I've had them for years and years. They had been a bit better in the recent year or so, but since I got sick, they've been back. Funny you mentioned caffeine, because that's the only thing that can help take the edge off them. The only medication I've ever had for them is just otc excedrin. I hate migraines and I was en route to do MS testing for them, but I stopped it after my mom died. It was just too much to hold on to, so I pushed it to the back of my mind. But I have had digestive issues for a long time, so I don't know if my migraines are possible crohn's related or not. One other thing I realized is that I get mouth ulcers almost as often as migraines too, another symptom I read about on here. Interesting.

Sunshine, I hope we have good luck. Maybe an omen of finding answers? Whatever the results, we can go through it together.

At the moment I think, if you ask to be referred elsewhere, my own PCT would have to pay. So as it stands again I would not get funding for a Pill Cam. I am 95% sure, just need to confirm this.

Dahlface, yes we'll get through it together! It seems like you will be getting your answers soon because your doctor already saw some abnormality from the colonoscopy, right? So, that's good, even though no one wants crohn's, it's good to have an answer and get treatment so you can feel better!

We are all like a little family on here.. It's nice to know that we can all just talk freely and everyone understand exactly what we are going through. I just wish we all had answers.

So, i thought this was kinda weird, but my doctor didn't give me anything to drink or take as a prep... my only prep is to not eat and just drink clear liquids... is that weird? lol

Nop not at all. Pill Cam procedures vary from place to place. You're one of the lucky ones who doesn't have to take any prep

Dahlface, sunshine, wishing you the best of luck with your procedures tomorrow. Let's hope that you both get some answers as they're well overdue, fingers crossed tightly for you!

Good luck to both of you! I really hope these tests shows whats wrong!!

Yes, I hope so too. And you are lucky if you don't have to prep. :/

Bit of a dissapointing appointment today really. Saw Registrar and not Consultant although she did go confer with him while I was there.
Is a no for the PET scan and am very dissapointed. 10 weeks have just been wasted where I could have been added to the list for something else.
Pancreas test normal which is good.
New inflammation marker blood tests (c3, c4) came back raised, not a surprise.
No reply as of yet from Heamatology re bone marrow biopsy. They may want to see me and assess in their own clinic before putting me on wait list for procedure.
Rheumy wants to go ahead with Laparoscopy, but has to contact Surgeons first, they have to be willing to do it etc. Again may want to see me in their clinic before being put on the list for procedure.
They mentioned for sure "bowel inflammation" and "inflammatory problem with unknown cause". Mentioned again Panniculitis and weber-Christian disease (i think).
I certainly feel they are so much more open that GI dept but I have little faith by now I will ever get a dx. Probably will end up taking the immuno-suppressant trial which I still don't want to do.
Going back in January- December was requested but no appointments, although I was given the advice line number and can contact his Secretary in the meantime.
More blood taken, only 15 people in fron of me but had to wait 35 minutes, and then it took 10 mins and 3 tries to get it out. Then bus was late. So you can imagine the mood I am in right now!

Meanwhile tomorrow I have a stupid telephone appointment from London to talk about the stupid IBS diet. I will be doing my best to show them what an idiot GI was and that I don't have IBS but another auto-immune problem.

Dahlface and Sunshine, best of luck with your pill cams tomorrow! Sunshine, that's wonderful that you don't have to do prep besides fasting. Some of us have to do full prep, some of us (like me) have to do 1/2 prep, and some just have to fast. It's up to your doctor. Before my pill cam, I was told that they really just need the small intestine to be clear, which fasting usually accomplishes on its own but some doctors prefer prep as well to make absolutely sure it's clear. I was told that for those of us who have d as a normal symptom anyway that prep probably isn't really necessary for pill cam, but they made me do 1/2 prep anyway. Anyway, you should probably be just fine with fasting. I hope both of you get some answers from this! Dahlface, are they making you do prep or just fasting?

Star, sorry to hear that your rheumy appointment was not so good. It sounds like you might be having a laprascopy as your next step then? Maybe they'll find something with that, I've heard several stories on the forum (Allie mentioned Mountaingem, and I'm sure there's others too) who got diagnosed via laprascopy. And at the very least, it can confirm or rule out things like endometriosis and adhesions. My GI hasn't mentioned the possibility of anything like that to me, but I think I would go for it if given the option. Keep us posted on what you decide to do, and I hope things start looking up for you soon. I hope that phone appointment goes well too and that they don't try to tell you to eat more fiber or anything like that.

How's everybody doing today? I'm doing okay. Ate something I shouldn't have on Friday night and paid for it, but am feeling better now (I ordered something at a restaurant that said it came with "sweet peppers" but they were not sweet, they were spicy! I picked them off but my sandwich was still a bit spicy, and anything even remotely spicy does me in). On Saturday morning, when I was feeling fairly yucky in the aftermath of the spicy sandwich incident, hubby took me to my favorite chocolate shop and I had some dark chocolate which oddly enough made me feel quite a bit better! So I'm going to eat more chocolate, especially when I feel crappy, and see how that goes. Anybody else had luck with chocolate calming things down or helping with nausea?

I'm happy to have whatever test you know, they can't be any more traumatic than the ones I have had already. Just seems I will be in for another long wait. They wrote to Heamatology re bone marrow biopsy at the beginning of August and still no reply. So with the letters, decisions, and possible clinic assessments I think I will be very lucky to have the procedure(s) this year And of course having been denied 2 tests I am not confident I will get anything else

The phone call is about the FODMAP diet for IBS, to assess my suitability. Since ex-GI (who requested it) was stuck on IBS I need to put them right on a few things! :hallo3:

I'm sorry about the disappointment star.

I'm sorry you aren't feeling too well Cat! Spicy stuff always does me in too. I've never tried chocolate though! I hope you get over it soon.

I had a productive day health wise. I got my healthcare moved to the Atlanta region, so now I can see anyone here in the Atlanta area with my particular insurance. I set up an appointment with a Rheumy, but its not the one I expected to see (my friend's Rhuemy doesn't take my insurance). The appointment is in 4 weeks, on October 10th.

My best friend's mom has endo, and after all that I've heard about how it can effect your digestive system, and how it would not be seen with an ultrasound, I'm curious to see an OBGYN to check that possibility out too. My best friend's mom's OBGYN takes my insurance, so I'm thinking about going to see her too. I just don't know whether to wait to see the Rheumy first, or to just go ahead and see the OBGYN at the same time. :/ I wish the Rheumy appointment was closer! I'm hoping I can get a lot done while I'm here in the states.

Allie, make them both at the same time!

I agree. See whomever you can see as soon as they can get you in.

I third that, Allie, as long as your insurance is covering it, see all the doctors you can see during the short time that you're here in the states!

*Sigh* I think the spicy food and the chocolate have set off my acid reflux. Chocolate doesn't trigger my gut illness but it can trigger my reflux. Exercise can trigger my reflux too, and I hit the gym today. Tums isn't helping nor is drinking a lot of water. I just have to ride it out I guess.

aww cat, so sorry to hear that your reflux is acting up. chocolate does that to me too! no fun I hope it gets better soon!!

Allie, see everyone you can, I agree with everyone else!

Star, sorry things didn't work out the way you wanted them to at the appointment today... At least they verified that you do have inflammation so they realize there's something going on.

Thanks everyone for the good luck wishes for Dahlface and I! I'm so happy I don't have a prep, because the prep usually hurts me pretty bad, just hoping that everything is clean enough in my small intestine to see whatever the Dr needs to see. I'm thinking it is pretty clean though. Nervous about tomorrow because I just think that everything is going to be normal (which is great) but just tired of not feeling well, soooo, yeah... Mixed emotions, so used to hearing everything's normal. Even if the pill cam comes back normal, It's just one more thing ruled out, ya know? So it's good to get done.

Thanks Sunshine, it's slowly been easing up. My reflux pain is weird, I started another thread about this in the Extra-intestinal forum, but in a nutshell I seem to get this weird referred pain in my left ribcage like under my left armpit. Sometimes the reflux pain shifts back to the center of my chest and feels like classic heartburn, but much more often than not it's it's in the left. Do you experience anything like that with your reflux? For awhile I thought it was costochondritis, which is inflammation of the ribcage, but apparently if you touch the inflamed ribs it hurts way worse - for me, putting pressure on the painful area seems to help a little. So it's not that, and it seems to coincide with my reflux attacks, so I'm guessing it's referred pain. I'm not really sure though!

How's the fast going? Is your gastritis still doing okay?

Cat, that's weird that you mention that, I actually have had that left rib pain under the armpit. It probably is a referred pain I'm guessing. My gastritis today hasn't acted up yet, which is very surprising because normally if I'm not eating, it's killer. But so far nothing, I think it's because I'm at least drinking clear liquids, so my stomach isn't completely empty. I'm very thankful that the gastritis hasn't flared up yet. The fast is going good, I'm just SOOO hungry haha! I can't wait till I get to eat tomorrow at 4 o'clock! I wonder what my first meal will be! Can't wait!

I'm just really nervous about the pill cam I think I had a lot of confidence in the pill cam, but now that I know that a lot of people who get the pill cam don't get results, I'm just getting nervous because I don't think I'll get results either or an answer, so if I do get answers I'll be very surprised...

About to start my prep. Hoping for no vomit. Been fasting all day and it was my turn to give snack out at work today, it was killer. I've never wanted goldfish crackers so badly.

My pain is still at a high level. Almost called in to work but I need the money badly. Bad bad pain in my right hand for some reason. I've had other joint pain in my knee and hip and back, but this is much worse. I can hardly use it. Though today it's not as bad as the past few.

I've also been getting this pain that starts deep in my abdomen somewhere and then shoots like a line to my anus. It's very painful, but only happens a few times a day.
I'm going to ask for pain killers when I go in tomorrow. I was handling the pain fine, but not it's much more significant and I need something.

Good luck Sunshine! I feel your same anxiety. Good thoughts that the camera picks up our problems!

good luck tomorrow, Dahlface and Sunshine!!

I second what Carrie said And hoping you don't have to wait too long for your results :soledance:

Wow I think yesterday's Hospital appointment has finally sunk in. They actually comitted themselves to a dx after 2 years of "not sure", albiet one of unknown origin.

Had the IBS diet phone call, she said is clear things have moved on and since the diet is for IBS not going to be any good to me. Also she didn't think I needed a local dietician either since I haven't lost any weight (I said I hadn't as the little I have really doesn't count, my jeans are still snug put it like that). Ex-GI had not even mentioned I was being seen by Rheumy but I shouldn't be surprised! Bet he is going to be surprised when he gets the letter back from them- ha ha!

So now Pain Management next Monday; and wait to hear anything with regards to Laprascopy and Bone Marrow biopsy. I personally still think there is a chance it is CD. If I get the surgery and get a clinic appointment to discuss I will stress they need to be through since there seem alot of possibilities. In other words, don't just look for one thing while they're in there!

Dahlface and Sunshine, I hope all is going well with the pill cams! Keep us posted!

Star, it sounds like you have made some progress towards a diagnosis then! So it sounds to me like your rheumy is sure that it's bowel inflammation, just not sure what type or stemming from what specific illness? I'm in a similar spot, my GP has said several times that he's sure I've got some form of IBD, and my GI has given me a placeholder diagnosis of "chronic non-specific enteritis" which essentially means the same thing, I've got bowel inflammation but he's not sure of the cause. Glad to hear the phone appointment went well and they didn't try to push an IBS diet on you and that they understand that you've got a lot more than "just IBS" going on! I hope the pain management appointment goes well and that they can get you some relief from ALL your pains. You mentioned a little while back about having to pick and choose which pain to treat, I hope you don't have to do that any longer.

Well, I'm taking a spoon day today. The left rib pain kept waking me up last night, I couldn't even roll onto my left side, it just hurt too bad. Hubby said he's noticed the same type of pain when he gets acid reflux attacks too, so I think that must be the culprit. And of course, when my reflux acts up the gastritis is never far behind, so my tummy is not too happy this morning. I called in sick to work and will be resting and hoping it doesn't get any worse today.

That's about right Cat. They said both bowel inflammation and a non-specific inflammatory disease. They're just not quite sure yet which is causing which, for example are my bowels inflamed (maybe CD I would say there) and causing shoulder pain or is an overall inflammatory condition, some rare syndrome perhaps, causing the bowel and shoulder issues as part of it (and of course the fatigue, mouth ulcers etc). They can't be 100% sure the 2 issues are linked but I think myself they are. Certainly the tummy issues went downhill once the shoulder pain started.

It was the c3 c4 blood markers coming back abnormal which decided them, added to the years of raised CRP I think, they are certainly commiting those words now after some months of "not sure" and "could be", since I guess clinical data now confirms.
I am happy with the commital anyways.

Hope you have a nice rest and improve soon

It's been a really rough morning... The capsule endoscopy took a toll for the worst at first. Was really nauseous and kept throwing up the pill... So they had to rush me to the surgical center and put me under anesthesia and basically perform an upper endoscopy by pushing the pill down to my stomach... While he was in my stomach he also took some biopsies of the tissue because it was very irritated from gastritis. Bright red they said. So the pill is finally down and taking pictures and videos of the tract. Hope it finds something through this mess I had to get through :'( the doctor said he's going to get the results back to me as soon as possible though, so that's good. I'm still groggy and sore from the procedure, and got that fashionable belt on can't wait to eat later!

that sucks, Sunshine, but I'm glad they got it in. I've read before that it can be a problem for some people.

so I stole a ton of plastic spoons from the cafeteria at work so that I could try to explain to some of my coworkers why I couldn't walk yesterday but can do so today. it was kind of fun flinging the spoons out of his hand onto the ground in the parking lot. they seemed to get it. and then he says, "Do I have to bend down to pick those up?" sure you can, because you're actually healthy and don't need to be concerned that I just threw all your spoons on the ground.

I feel bad because people are like, well how come you seem ok today?? because somedays I'm just not and there's nothing I can do about it!

Oh my gosh Sunshine! What an ordeal! At least they did everything they could to get that pill in. And they saw that something is very wrong!

I hope BOTH of you get answers from this test!!

I agree with you guys, I'm going to pursue both diseases at once. I'm going to make an OBGYN appointment after I finish my lunch. I'm in a ton of pain today, but I'm in a good mood. I'm going to try and take it easy until my meetings and class tonight, but I want to be productive today! Sheesh >.<

That sounds terrible, Sunshine! Wow. Hopefully something will show up and you can get proper treatment.

Glad to hear it, Allie. Sorry you're having a lot of pain today.

Well I visited vomitville last night, but survived it all. Though the vomit looked very very strange.
Everything this morning went ok and I have the fashion belt on. About to break my fast! I love getting excited about food, now that it doesn't happen too often.

Sunshine, I'm so sorry you had to go through all that. Can't wait to get this thing off though.
Results... I'm trying not too think about it.

Thanks everyone, the pill cam just stopped recording! Now, I can eat whatever I want! And like Dahlface said, I'm actually excited about eating!! Now, just gotta wait for the results...

Dahlface, sorry to hear that you were throwing up yesterday! Very upsetting... :/

Let's just hope for the best with our results.

I hope both of you get your results soon! I couldnt swallow the darn pill so thats an accomplishment all its own.

Cat I hope your feeling better. I read a post where you mentioned that you were in remission and I was hoping that it would last a verrrry long time.

Star I am sooo glad that you are going to see somebody about the pain and that your doctors are looking further.

I am set to go to San Francisco for the weekend and I had a good time last time that we ate there. I had ravioli and sushi.I cant wait to go. I met a lady at the shelter where I work who has fibromyalgia and another who has lupus and it is like they never even worry about their illnesses or even talk about them. I am such a wimp I really admire these women.

I am trying to figure out how to put up pics, can anyone tell me how. Thanks