Undiagnosed Club Support Group

[Chickadee - I'm glad you are talking about Questran, because I'm trying it again. I tried it a few times, and by day three, I'm usually really gassy and bloated. I think my gut is really sensitive to any binding agents (fiber, questran, or calcium) and get constipated. I think the reason is, is that SOMETHING is being malabsorbed and causing dumping and if all that is getting solid, it's going to clog things up. I just tried benefiber and it was painful, and trapped gas kept me up at night.

I've heard some people with IBS say questran worked great for them (assuming they were having bile salt D), but it took two weeks for the gas and bloating to go away. Did you notice anything like that? I may try 1/2 pack in the morning for two weeks and see if it gets better. I'm honestly being stubborn and not wanting to be on a FODMAP diet and hoping this would let me eat normally.[/QUOTE]

This is a Newbie,(MLits) commenting: I finally did get on something that SEEMS to be helping right now, and I wanted to share it.
The Questran (which is absolutely NASTY:yrolleyeswith a few self-modulating things seem to be helping me more than anything that I have tried in the past... as a matter of fact, since modifying the docs rx on 2/13/14, I have had more normal poohs than I have had in sequence for almost thirty years!

The stuff (questran) I get comes in packets. I really tried to do the docs recommendation: He put me on omeprazole and the questran. 3 days according to instructions. I ditched the omeprazole right away--I don't have those problems (by the way, keep the capsules...you can use them to get things past the stomach, when needed...) and I was a good doobie... But I got bound up and gassy, which, although MIGHT be considered better than diarrhea, is still not optimum! Three days on that regimen and I was done. I am still very fearful of another bowel infarction...But... it WAS helping with the D.

So... I emptied a packet and measured it: about 2 and 1/2 teaspoonsfull. Okay. I thought I'd try HALF a dose at a time...AFTER my morning tea ritual. (I'm NOT wrecking my tea with that crap!)

Cannot take the clumps.. makes me gag... got thinking...tried this: Measured out a box of jello, and did the math, came up with about 1 and 1/2 tsp for what I wanted. (A slightly thickened, warm mixture of jello-water, about 2-4 oz.)(I use regular jello, sugar free would need to be recalculated. Probably 1/8-1/4 tsp.)

I make my tea, and at the same time, I put that much jello powder in another cup, pouring some boiling water over it. Stir it up, let it sit to cool a bit while I drink my tea. Then I mix the Questran in WARM water, get rid of the clumps, and then quickly pour it into the jello water. (if you wanted to you could "thicken the jello a bit more" by adding a few ice cubes to help it set a bit). Stir it to mix and down it fast. Another glass of water (cold!! Yeah!!) and its done.

Not too bad. The gelatin kind-of disguises the slick but grainy sensation.

I also opted to take fiber-choice tablets (inulin-just a quarter of a tab at a time, twice a day)--doc says its not enough. and to go to Metamucil...I'll let him be the one doubled over in pain...I'll stay with what's helping me right now, thanks) and chewable vitamin c at the same time...lots of d3 (thanks for the tip, forum members!!) and making sure I eat things that contain natural pectin and gelatins... this keeps things "moving" a bit, I guess, but not setting up solid???

Anyway, that's where I am at, maybe it will help somebody else to manage this damned thing. I don't know if mine is IBS or IBD or Crohns (Crohns was "ruled out" with recent colonoscopy and endoscopy)-- all I know is it is debilitating to live with it.

So, since trying the Questran, halving the dosage, and adding just a bit of fiber choice, (taken later, with my vitamins) I am happy to say, I have minimal urgency right now, and haven't had a runny bowel movement in almost two weeks.

We all know this thing ebbs and flows (probably not the best word picture here...) but I am hopeful for the first time in almost thirty years.

I am signing off with my new happy slogan right now:
:ylol:"I love normal poohs!":ylol:

So let me tell you the thing I have with being morbidly obese and having a stomach problem. First off doctors never believe that you have a problem if you are overweight. Second is the stigma that since you are in the bathroom for twenty minutes is because you are fat and therefore do not take care of yourself. The reason why I use the handicap stall is because I'm having a stomach attack and a regulat stall doesn't provide the space I need to wipe. That's the only time I use it. My GI doc's assit. called me tue other day for a drug trial. This is the same doc that wouldn't give me a c scopy bcuz my.endo.was fime. I told them I.wasn't interested. I know I'm ranting but I'm tired of the excuse that I'm fat than addressing the problem. FU DOCTORS AND FU SOCIETY FOR YOU JUDGEMENT.

That was done on a cell phone please excuse the typos.

Multis again here: ever heard that line, "pride goes before the fall?"

Well, I was doing so well, and while riding on the wave of euphoria that comes from having two weeks of normal poohs, and we went out to dinner.

I didn't over-eat, but I ate an array of questionable (for me) items.

Gurgling started on the trip home.

Fortunately, I felt only a mild sense of urgency, and actually made it home, not even having to rush past everyone on the way to the bathroom.

However, my "typical" result was back: mostly water with recognizeable pieces. The sense that we're not empty yet...I almost cried. And, I guess I'm mad at myself for my indulgence.

So now I'm on the couch, resting, staying close to the potty. Probably two days of not eating anything are ahead. So discouraging.

After 30 years, I guess I got my hopes up a little bit too fast...

Sorry you're feeling badly, Mlits. I've never found Questran to be a license to eat whatever I wanted...just something to help control the worst of the d while still sticking to a safe diet.

Your gelatin process sounds rather complicated. If the taste bothers you that much, you might consider talking to your doctor about the Welchol or Colestipol pill. It's similar to Questran but in pill form. I tried Welchol, and it didn't work for me. Others have good results with it though. I think that over time, you get more used to the taste and texture of the Questran. It's awful, yes, but I still find it tolerable.

Thanks, Chickadee.

Yeah, I know that the Questran is not a license to eat whatever I want-- but sometimes I crave that license!!

( every license has a price...)

and I was so proud of myself (as if I did it anyway!!:ybatty about having almost two weeks of normal...Well, today is not so bad.. still the runs but no pain. Been able to drink my tea.. and to me, tea is a very important component of life!!

I agree the jello routine is a bit cumbersome-- I am trying new things with the Questran... right now I can down it pretty good if I mix it with warm water, and then add some cold pineapple juice to it... Doesn't disguise the graininess, but I can get it down my throat!

And, you're right, the taste of the stuff isn't that bad...to me it is the texture that is hard to handle... I have always had a bit of an issue with the textures of some foods.

However, bottom line (pun completely intended, here) getting used to the texture is NOTHING if it can help control the diarrhea. Frankly, I am to the point that I would learn to down doggy pooh, if enough fellow sufferers told me that it helped them avoid the runs!!

Thanks for the encouragement-- I appreciate it. Hope that you are having an okay day. Blessings to you and yours.

Melibean said:

So let me tell you the thing I have with being morbidly obese and having a stomach problem. First off doctors never believe that you have a problem if you are overweight. Second is the stigma that since you are in the bathroom for twenty minutes is because you are fat and therefore do not take care of yourself. The reason why I use the handicap stall is because I'm having a stomach attack and a regulat stall doesn't provide the space I need to wipe. That's the only time I use it. My GI doc's assit. called me tue other day for a drug trial. This is the same doc that wouldn't give me a c scopy bcuz my.endo.was fime. I told them I.wasn't interested. I know I'm ranting but I'm tired of the excuse that I'm fat than addressing the problem. FU DOCTORS AND FU SOCIETY FOR YOU JUDGEMENT.

Click to expand...

When I was super skinny doctors listened. Now all I hear is 'well you're not losing weight' as if my past history of severe sudden weight loss didn't happen. I'm fat cause I had a year of steroids, but no doc acknowledges that.

Hi everyone! I'm going to see my GP in a couple of weeks and was wondering what types of blood tests for inflammation detection I should ask for? CRP and ASA?? And what type of vitamin testing should I b looking to get?? B12 anything else?? I would appreciate you input!!!! Thanks.

Melibean, I'm so sorry to hear it. I've never been overweight so I don't have personal experience, but I had an overweight roommate in college. She had bad asthma and she also had a habit of misplacing her inhaler. As a result, I had to take her to the ER a couple of times. And I recall one time, as she's sitting there wheezing in the exam room and begging for help, the grumpy male nurse is just giving her the lecture. "You would feel better if you lost some weight." And I'm sitting in the corner, thinking, she'd feel better if you treat her asthma attack right now and not lecture her! Seriously! She knows she's fat, it's not like we don't own mirrors, and your lecture is only delaying treatment and making her feel embarassed on top of everything else. Ugh. So yeah, I have not been in those shoes myself, but I've seen it happen and it's ridiculous and frustrating. I wish I had answers for you, but you've got my support. Big hugs!

And unfortunately some doctors will find a way to blow you off and be a jerk to you no matter what your weight is. At my sickest when the weight was falling off of me, I had a doctor tell me it's all due to depression, and he tried to push some antidepressants on me. Gee, do they teach in medical school that depression can cause 35 (literally) bathroom trips in 24 hours? And now that I look relatively healthy - I work out and have a fairly athletic body and I'm at a healthy weight, but for the past year I was mildly flaring - my GI seemed to want to write things off as being due to IBS "because you're not very sick like you were and not losing weight like you were." I know I'm not as sick as I was, but that doesn't mean I'm not still sick, you know? I had to fight that man tooth and nail just to be put back on a low dose of Entocort. Sheesh.

Hi Chuckmya - as for what blood tests to ask for, the inflammation marker blood tests are CRP (c-reactive protein) and ESR (elevated sed rate, I think). ANA is a blood test that can check for things like lupus, although it's not always the most accurate. If they can run a full panel of your vitamin levels, that would be ideal. If not for whatever reason, I would ask for B12, D, folate, and iron (can anybody name any others I'm missing?). I would also ask for a CBC (complete blood count) as that can be a useful one to have. Your GP can also run stool tests, which I would recommend (not fun, but worthwhile) if you haven't had any stool tests done already. They can check for parasites and bacteria, mainly just to rule those out as the cause of your symptoms, and they can look for blood (including occult blood - meaning there's blood in your stool but you can't see it or it's not obvious). Good luck with your GP, let us know how it goes!

lsgs, I was thinking about you the other day. How is LDN going? Were you able to get ahold of some more after your doctor was forbidden from prescribing it?

Mlits, have you tried psyllium husks? You mentioned metamucil left you doubled-over in pain. Metamucil is psyllium-based, but it has a lot of additives that can cause cramping. Also, if you take the recommended amount on the label, that is likely too much for someone like us to handle. I take 100% organic psyllium husks with no additives. I believe the label says to take 2 tablespoons a day - that would kill me! I take 1 tablespoon a day, and I built myself up to that (I started at 1 teaspoon a day). Psyllium has done me a lot of good, and I haven't really noticed any taste nor texture with it. It might be easier for you to get down than the Questran. Keep it in mind - my main suggestions would be to find 100% organic (no pesticides and no additives) and start with a small amount and work your way up if need be.

How's everyone else doing today? Rose, Cindy, how are you guys doing? I'm feeling kind of blah today. This neverending winter is really getting to me. My joints are aching yet again thanks to the below zero wind chills. My guts are okay but my joints are not happy. And going a zillion days in a row with frigid, snowy weather is depressing. I would just like one day where I can go outside without bundling up in my big winter coat, scarf, mittens, etc. I would like one day where my joints don't ache from the cold! Bleh. Of course in a few months I'm sure I'll be complaining that the summer heat & humidity is cramping up my guts. I need to live somewhere where it's 65 degrees out year-round but I don't think such a place exists.

Hey Cat, sorry to hear your feeling blah today! I had a bit of a tough day myself too... had more blood taken today and ended up unconcious on the nurses floor! Bloody needles! Luckily i came round quite quick but stuck in bed all day because of it feeling yucky with the tummy pains and d but were just pulling through!

In to my last week of doctors sick note... so got to see what my work wants to do next.... not looking forward to HR meeting weds i just find it so difficult to explain what is wrong with me. Especially when i have to see the person everyday after, its embarrasing talking about the dreaded toilet trips!

Just get through the next couple of weeks then might get some answers!! Hope your all well, Rose

Hey guys / can any1 help me out , to cut I long story short I've been poorley for the pass two years but on and off since I was 15 I'm now 19 I have Lost Nealy 8stone in weight&IWeight loss
Blood loss through stools and sick
Ulcers
Diarrhoea
Abdominal pain
Fatigue
Aches and pains in joints
Inflammation of the eyes
Sickness and nausea
Night sweats
Seriosis
Skin rashes
High temperature
runny yellow poo/uclers in my mouth I get over 20 at a time //acky body like I have the flu
I was under a GI at the City Hospital Birmingham UK
&Tbh my GI is A fool He is not helpful /in October I had a NG tube Fitted As he Said he was testing me with it which makes no sense /I have tried every supplement under the sun and I still and struggling to even eat after two years
I went to see him in January & we ended up having a very heated argument as he was not listening to a word I had said to him & I ended up crying my eyes out and I said to him that's enough for today and I walked out of his office , he then sent me to a CBT Saying he thinks I have very sevea case of IBS which in my eyes its jus a a cop out / I haven't been back to see him as I've had now letters from the hospital &I don't really kni what I'm meant to do it doesn't help my GP at the doctors Is Very good friend with my GI so its a Bit tricky please help me adive is needed thabkyou so much for every one who helps x

kiki-- Sorry you're going through all of this! What types of testing have you had done? Have you had a colonoscopy, endoscopy, capsule endoscopy or any X-ray studies (like small bowel follow-through) or CTs or MRIs?

Your symptoms sound like textbook Crohn's disease, but Behcet's might be another possibility with all of those mouth ulcers. I'm in the US so I don't know that much about the NHS. Can you see a different GI?

Hi Cat thank you for asking, very kind of you! LDN is still going well. It has eliminated my joint pain, I have less stomach pain, diarrhoea about once a month down from 15 times a day. It really is an incredible drug. I can't seem to get up to maximum dose, it might be coincidence, but I feel horribly sick when I go past 3mg. Unfortunately I have no doctor to go to for advice now though. But yeah, it's working well and has brought down my calprotectin and ESR. I still have a lot of issues but I have a GP now who has really engaged with me and is working really hard to make me better, he's a wee star! He identified my coping mechanisms were shot to pieces after years of this and is getting me help to cope better and he's getting me to see a physio etc. He didn't even get all snooty like most doctors about LDN he simply said he didn't need any further proof than the improvement in my health

I hope you're all hanging in there!

Hey chickadee, i have had a colonoscopy but I had a lot of trouble keeping the prep down so my GI on seen my colon and couldn't get any further as I was still very bunged up with poo
I've had a barum meal and swollow dune but they couldntnsee again as I has so much trublle keeping it down every time I took a bit I througw up even more ,so they couldn't see/ I had a endoscopy dune too and they said I had inflammation but they said that's mpnormal for me, ebey test I had myy tummy any more I jus bring everything up but they keep making me drink the drink so every time I had more the more sick I got , I'm in the NHS as I can not afford to go privet I don't have that kind of money, I want to change my GI but I don't know how to do , I've tried everything to eat and had all the suplemtns I can , I'm pretty stuck at the mo

Hey guys, I'm here today. I had a good weekend, but having some rough days overall. It's getting harder and harder for me to eat. Even "safe" foods, I'm having RUQ pain shortly after starting to eat. Also nausea off and on. Now I'm starting to have D off and on, which is really unusual for me. Lots of cramping too. I'm down another pound and feeling weaker. The end of the month seems a long way off. I'll be at Mayo for 3-5 days supposedly, for any tests they want to run. I'm guessing at least a colonoscopy, but we'll see. It sucks cause it sounds I'll be going by myself, since it's during the week, no one can get off of work to go with me.
I'm so sorry if I sound super whiny, I know many of you have gone through or are going through worse. It's been a struggle trying to deal with this rapid decline along with the drug side effects for my brain stuff too, it just makes me feel ovewhelmed, along with work. Anyway, thanks for letting me vent! Love you all.

My hubs says he can't wait til I go to Mayo and get a diagnosis so I can tell the doc I saw last that he was wrong. Silly guy.

Hi Kikidee, I'm pretty sure under the NHS that you're entitled to see a new doc for a 2nd opinion (I'm in the US so I don't know much, but I've heard other people on the forum talk about the NHS). Do you have anything like a patient advocate? Or can you ask your GP for a referral to a new GI? Can your GP order tests like colonoscopy, etc? I don't know if all GPs are like this, but my GP performs colonoscopies. I've always had my GI do my scopes, but it's good to know that my GP can too if need be. Anyway, just some thoughts for you. Can anybody in the UK help her with more information?

lsgs, that's great that LDN is still working and that you've got a good GP! That's definitely good news, especially after the string of bad doctors you've been through. You mentioned going to a physio - is that physical therapy? If so, I hope you do well with it. Physical therapy was great for me, it helped my joint pain for several years and my physical therapist was wonderful. She didn't know there was a link between IBD and arthritis until I told her - and I guess she went home and did all kinds of reading up on the subject matter and then she thanked me for telling her that! I like it when a medical professional doesn't claim to know everything and is eager to learn new stuff and appreciates that her patients know some medical stuff too. She helped me a lot of course too, I feel like we both helped each other. Anyway, PT was great for me and I hope it's great for you too!

Rose, you poor thing! Did you pass out because they took too much of your blood, or was it just a fear of needles thing? Either way, I'm sorry to hear it. Good luck with your work meeting. It may help you to write things down so that you can better explain what's going on with you. You don't have to go into a lot of embarassing detail if you don't want to - you could say things like, you have a serious ongoing medical condition which causes many symptoms including frequent nausea, fatigue, and pain, and that you're currently in the process of undergoing medical testing to find out the exact nature of your illness, so your treatment options are limited at this time and as a result you're very ill frequently - but you enjoy your work and would still like to work as much as you are able to. Hopefully something like that will get the point across with a minimum of embarassment - good luck hun, let us know how it goes.

Cindy, I'm glad you're going to Mayo soon but that sucks that you'll be going by yourself! Do you have a tablet, laptop, smartphone, etc that you can do skype on and at least have some facetime with your hubs/friends that way? Also, I recall you saying you want to learn to crochet - maybe you could learn the basics and then do some crochet while at Mayo to pass the time. If they're keeping you for 5 days, I hope they do more tests than just a scope! Remind me, when do you go to Mayo? End of this month, right?

I'm still feeling blah today. It snowed for like the 1000th time last night so my joints ache yet again. This winter has been so hideous! It's supposed to be almost spring but it seems like springtime is nowhere in sight. My bad hip and wonky knee can't take much more of this.

Hey guys! Meeting went ok, were getting there slowly i suppose. As for passing out Cat, i think it was the amount of blood, i normally can stay consious with needles even though i hate them. Too much blood removed too often!

Found a funny hard lump in my neck, very painful! So back to the GP i guess! Somethings not right.

Sorry to hear your feeling bad Cindy, hopefully the stay in mayo might help you. Keep us updated, it's always good to vent and get it off your chest.
Hope your ok too Cat, it's all abit useless at the same time.

Kiki, i'm in the UK... you can get a second opinion, see another doctor in your GP practice and say that you wern't happy with your other specialist as you didn't feel he had your best interest at heart and didn't relate to what you were saying. My specialist is in Kidderminster, only about an hour from birmingham and hes been great. Get a rerefferal to a different specialist but go to a different GP if you feel the other one wont help as he is too close to the old one. Each hospital has more than one specialist. Hope you get some help and relief soon hun.

Hope everyone else is well, Rose

Oh kikidee1994, also if you are asked to do prep again for any other endoscopy... ask for Picolax and say you don't want Moviprep... i struggled massively with that stuff but Picolax actually tasted nice!

Hey Cat, Rose, and all, I go to Mayo the 25th of March (bright and early at 7:30). They say to anticipate being there for 3-5 days, but that's kind of the standard they tell everyone, since they don't know what tests they'll need to run on people and stuff. Since I've had so much going on, and will probably need to prep for at least a scope, I've booked a hotel room from Tuesday to Friday. I am bringing both my laptop and my Kindle Fire tablet, so I'll at least be able to stay in touch with everyone, and I'll have my cell. I'm bringing my new crochet stuff too so I can work on learning that new skill!

We got some more snow too, a couple of inches. At least it's staying above zero, finally! It actually makes me feel like having a life away from the couch sometimes, we might go to the Auto Show up in the Cities this Saturday, just for fun. And Daylight savings means it will stay light later, that's always nice and makes it feel like summer's coming.

Rose, my dear, I hope the lump turns out to be swollen gland or something minor. Please keep us posted!

Rose, I'm glad you're getting the neck lump checked out! I hope it's nothing bad, keep us posted. And yeah, if they take too much blood it can cause light-headedness or even fainting - that happened to me when I first got sick. They had no idea what was wrong with me so they took a whole bunch of blood, 6 or 8 vials I think, and I got quite dizzy and couldn't stand up for a bit. I didn't faint but I got close! I don't understand how any doctor/phlebotomist can think it's appropriate to take that much blood from someone who is already sickly, of course it's going to make us feel faint! I see my GP next week and I have a feeling he's going to take a lot of my blood then, as he wants to test my cholesterol again and I want him to check my vitamin levels. Not looking forward to that.

So how's everybody doing today? I'm feeling pretty icky, I caught a cold. I'm massively fatigued and a little bit nauseous - I always get nausea with a cold nowadays, I'm not quite sure why that is. I've been dizzy today too so I'm not doing very well. No appetite either but I think that's part of the nausea. I figured I'd catch a cold sooner or later - being on Entocort seems to lower my immune system significantly. The last time I was on Entocort, over the course of 7 months I caught about 4 colds and the flu too. This time around, I haven't even been back on Entocort for a full month yet and I've already caught a cold, yuck!

Cindy, I missed seeing your post as I was writing mine. We got more snow too - it's snowed 4 out of the last 5 days. But they're now saying it's going to be 40 degrees out on Friday, I really hope that's true! And yay, I'm glad you're learning to crochet. I am sure I've talked about this before, but crochet is one of the very few things I can do when I'm really ill. I *hate* feeling useless and doing nothing when I'm sick, so crocheting makes me feel worthwhile - I can make something useful like a scarf or a blanket that I can then sell, use, or give as a gift. That definitely makes me feel worthwhile and it makes all the difference in the world for me. Anyway, I hope that keeps you occupied while at Mayo. If they give you a choice of preps, I echo what Rose said about Picolax - it's called Prepopik here in the US (same prep, different names), so if you have a choice of preps, ask for Prepopik. You only have to drink 2 little cups of prep and it doesn't taste bad. (You drink other clear fluids of your choice to stay hydrated of course.) I'll be thinking of you on the 25th! Keep us updated on here or on your caringbridge page or on facebook, I'll check them all to see how you're doing!

Cindy, hope all goes well for you!
I have an appointment with my GP tomorrow to check my neck out, as you sai, it's probably just a swollen gland, but its so painful i would rather just be sure it's just minor.
Cat, i think she took 6 viles... wasn't too sure as i ended up on the floor! Got to laugh now though! They don't think about the fact were physically drained before we go to get blood withdrawn!
Hopefully we'll all have a better day tomorrow! Love to you all!

starrgirrl & anyone who's had a pet/ct
please help I'm undiagnosed but had this
test very afraid of radiation how much were
in your tests? thanks, Kristine

Hi mhmommy, welcome to the forum. I didn't know the answer to your question so I did some googling and found this article from Mayo Clinic:
http://www.news-medical.net/news/20...ght-about-radiation-dose-from-CT-imaging.aspx

From the article:

To be clear, there is minimal risk associated with a single or even multiple CT scans. Normally, people get about 3 millisieverts of radiation each year from background environmental radiation, such as radon and cosmic rays. In higher elevation areas such as Colorado, the background exposure can be up to 10 millisieverts per year, yet no increased incidence of cancer in higher background radiation locations has been observed. A CT scan can deliver anywhere from 2 to 10 millisieverts of radiation, depending on what type of scan a patient receives. For exams requiring multiple scans, this can add up to 20-30 milliSieverts, but this is still considered a low dose of radiation.

Click to expand...

(I see you're in Colorado, which is why I bolded that text about Colorado.)

If you're still concerned about radiation from CT scans, you can request an MRI. MRIs are more costly and aren't the best if you're claustrophobic - they also see tissue differently than a CT (my GI said that CTs see bony tissue better and MRIs see soft tissue like organs better). But MRIs use magnets rather than radiation, so you don't get any radiation from an MRI. I hope that helps? Would you mind sharing a little bit more about yourself so that we can get to know you better? How long have you been ill, what are your symptoms, what tests have you had?

Thanks. My 15 yo has prediverticulitis, I had some gi stuff and had abdominal
Scan that looked ok. I had a chest ct that found lung nodule and ended up
more testing, pet/ct now I'm nauseous, tired anxious all the time. the pet/ct
was high dose so I can't help fearing cancer.

Hi everyone. I wasn't going to join this group at first because I was expecting my diagnosis on Monday but that has changed. I have had IBS for years. That diagnosis came over 15 years ago. I started getting very very sick when I ate dairy and my doctor told me I was lactose intolerant. Then suddenly I stopped getting sick so I talked to my doctor again and she said that it would IBS then. That's been in my record since and every doctor has treated me as if I have IBS. Until 2 weeks ago when I saw a GI. Monday I had my colonoscopy and upper scope done. The doctor told me it looked a lot like Crohn's.

I never suspected Crohn's. And honestly, besides the increased risk of cancer, I can't figure out what all makes Crohn's worse than IBS. Most articles focus on cancer and ignore the rest.

Anyway, I wasn't going to join this group because the doc was pretty confident it was Crohn's. Now I'm told I need a IBD Serology blood test and that will take a few weeks for results.

I know I covered this in other posts but basically I'm not so confident my results will be coming anytime soon anymore. So here I am.

Anyone else have an IBD Serology blood test? I'm trying to figure out the purpose of the test.

Also, besides this board, where can I find some good resources for Crohn's info? Some of my family seems to think my life is over if I do have Crohn's. I'm just confused and want facts. Panic isn't going to help me.

Thanks!

Hi Saralr, welcome to the forum and the club. And hi fellow Wisconsinite! I grew up in Oshkosh so right in your neck of the woods.

Did your doctor say what specifically on the colonoscopy caused him to think it's Crohn's? Did he take biopsies? As for the Serology blood test, some doctors think it's useful but the general consensus seems to be that most doctors think it's not worthwhile. I have heard that the results of the test can vary based on which lab tech interprets the results. I haven't had the Serology test myself, but there was a girl who used to be a regular in here who had it done. She had fairly minor IBS-like symptoms, the Serology test said she likely has Crohn's - but no other tests were able to find anything, and she eventually accepted IBS as her diagnosis. So just based on her experience, I wouldn't put too much stock into the Serology test. Or at the very least, take it with a large grain of salt. So long story short, the colonoscopy biopsies are the "gold standard" for diagnosing Crohn's, and I'd go by what those say as opposed to what the Serology test says.

As for what makes Crohn's/IBD worse than IBS - here it is in a nutshell. IBS may not even be a real thing, but it's thought to be a functional disorder. In other words, they think that with IBS the brain misfires and sends a signal to the gut to cramp up which can then cause pain, nausea, and diarrhea. The bowel looks normal and IBS shouldn't cause symptoms other than that. With IBD (Crohn's/colitis), the intestine becomes inflamed. This can be extremely painful, and if the inflammation isn't gotten under control, it can cause scar tissue, narrowing which can lead to obstructions, etc. An inflamed intestine can't absorb calories/nutrients very well, so malnutrition, weight loss, and vitamin deficiencies are common. IBD can also cause bleeding ulcers. Crohn's can manifest anywhere in the digestive tract - literally anywhere from mouth to anus - so it can cause tons of symptoms. Extra-intestinal manifestations are also common - this is thought to be where the inflammation "spills over" and affects other organs besides the digestive tract. So things like eye pain, skin issues, arthritis, etc are all common extra-intestinal manifestations. So basically, IBS can be annoying but IBD can in some cases be debilitating, and it can at rare times even cause life-threatening complications like bowel obstruction/perforation. Not that IBS is a picnic, but IBD can be far more horrendous.

You also asked for links for more information on IBD. I would start with the Crohn's & Colitis foundation of America - their website is http://www.ccfa.org/ . Have a look around that site, there's lots of good info on there.

Your life is definitely not over if you do have Crohn's. You may need to make some adjustments and find your "new normal", but you can still live a very full life. I've been ill for over 4 years now with presumed IBD (my GI isn't sure if it's Crohn's or microscopic colitis), and I've spent 2 of those years in remission with few if any symptoms during that time. I'm able to exercise, work full-time, and do most things that "healthy" people do. I didn't think I'd be able to work out when I first got sick, but now I lift heavy weights! So try not to panic, you'll be okay.

mhmommy - I've had numerous CT scans and a PET scans with no problems. The cancer I do have is in my brain, which hadn't ever been scanned at all - so completely unrelated! Don't stress too much about the radiation in the scans, they're much safer now than they ever used to be. MRIs, as Cat pointed out, are radiation-free, so you can always ask for those instead, if you are concerne.d

Saralr - We're not just here for you for Crohn's; many of us here are undiagnosed or have multiple other IBD and GI issues. There are numerous good resources on the web for GI sufferers. A Crohn's diagnosis may be life-altering, but it certianly is not life-ending.

Try starting here: http://www.crohnsandcolitisinfo.com/crohns/what-is-crohns-disease?cid=ppc_ppd_hgast_yah_038674

Cat, you and I are always posting at the same time! how funny!

I'm a bit nauseous this morning. How's that cold this morning?
Our snow is blowing all over the place, drifting around so the roads are terrible. Fortunately I live in town so I didn't have to drive too far.

Lately I've noticed I'm getting winded easily; I'm wondering if that's because my weight is low enough that I'm running out of energy. I'm nauseous again this morning and kind of mad at myself because I ran out of Ensure and forgot to pick up more. I'm stopping after work today to get some.
good thing I don't have to have any blood drawn; that would probably knock me out! Although, since I'm going to Mayo alone, I kind of wonder if that will be a problem..... if they draw blood and I feel funky.... or I have a scope and all.... I know I'm just walking distance to my hotel, but I'm probably going to have to hang out at the clinic for quite a while after these tests since I won't have anyone to help me get back.

Cindy, my cold is somewhat better. I'm not so fatigued or dizzy today, but I'm still sniffly and coughing. Our weather is finally turning nice though - it's sunny today and it's supposed to be 30 degrees! Tomorrow's supposed to be 40! The weekend looks like it'll be similar. It may actually finally be approaching springtime!

Wow, I'm glad your hotel is close enough to walk to Mayo, but that is a bit scary about having to walk while light-headed or under the effects of sedation. Hopefully you can let them know the situation, and maybe they could let you hang out in the recovery area as long as you need to? Maybe you could also call someone on your cell phone as you start walking, so that they can keep you alert and talking, and if you have an issue or stop talking then they can call someone for help? Also, at the hospital I go to, sometimes after scopes the staff is kind enough to put me in a wheelchair and wheel me all the way out to the parking garage. I don't know if Mayo staff can do that, if they could wheel you all or part of the way to your hotel to make sure you get there safely? Or - Mayo's huge, right? I wonder if, like in airports, maybe they have golf carts that they could transport you in or something like that? Just some thoughts for you.

Thanks for the links and information. I was shown some pictures of my insides. They were super clean so all that nasty drinking the day before does it's job. Lol

The doctor always does biopsies. He removed a couple polyps (all cancer free) and did several biopsies also. The swelling was very obvious to me. It is all in my colon and was patchy. When the biopsy results came back is when the physician assistant I see at the GI office decided I should do the blood test also.

I'm still surprised i may have any IBD. And my mom calling to make sure I realize that we are taking a family vacation next year even if I do have an IBD isn't really the support I was looking for.

But thanks for the help. I will definitely check those websites out.

cindy, what kind were they, abdominal, chest etc? and was the pet separate?
you said the brain cancer not diagnosed or diagnosed via mri?
im worried its too late because i was given such a large dose pet/ct.
have you ever had one of those? in the future i will ask more questions but this was the one i shouldve asked about. i had no idea that checking for cancer/ibd stuff could cause cancer it just did not enter my mind at all. do you talk to your dr before each test to see if its necessary? its all so confusing at least to me.

cindy- also, were any done close to each other? do you ever worry or have you done xrayrisk.com to assess risk? i am 39, how old are you? i will be 40 in april.

mccindy-- If the hotel where you're staying caters to Mayo patients, there's a good chance that they offer some kind of shuttle to the hospital because even if it's "walking distance," it may be difficult for patients to walk.

Well just want to vent a bit...
The GP has said hes concerned about the lump in my neck and wants to send me for an xray to check it out properly. Fantastic. Still waiting on the results from the bloods, however they'll probably be of no use because they never are. Decided to treat myself to a glass of wine to take my mind off the worrying... bad move i can't leave the toilet now. Woops!

Had a crappy day, been really exhausted today and had to sleep till lunchtime, would have been longer but my bloody mother decided to come and wake me up to do some chores, fantastic as i am still exhausted and needed that extra sleep! Its been argument central all day. Grr.
Then the boyfriend had to start moaning that i cant come out to see him, another argument followed by me throwing him out my house as im sick of it... haven't spoke since. Everythings gone mad and i just want to give up right now. Nothing is of any use and i feel very alone and incredibly alienated from the rest of normality. Sucks right now.

Anyway enough venting done. How is everyone? Hope your all well and that snow isn't causing too much chaos for you guys!

Aw Rose, poor thing. Yes, as you discovered, alcohol is pretty risky - I can handle one small glass of wine on a good day every so often, but that's my limit. I hope your x-ray goes okay, keep us posted on what the results are. Your boyfriend sounds pretty immature - you're 17, right? Is your boyfriend the same age? If he's treating you this poorly and being rather selfish (that's what it sounds like to me anyway), then you may want to take a break from him to take care of yourself for a bit and to get away from his drama & the stress he causes you.

Unfortunately though, if you're living with your mother then you can't take a break from her quite as easily. Is there someone in your life, anyone (teacher, counselor, clergy, aunt or uncle, etc) who you trust and who knows what's going on with you, who you could ask to speak to your mother about the way she treats you? Maybe if she heard it from someone else, someone she respects, she'd take it more to heart. Or maybe you could write her a letter, letting her know how her treatment of you is affecting you and your health? Honestly though she sounds pretty awful and I think you just need to get out of there as soon as you can. Getting a diagnosis is key so that you can get some treatment so you can feel better and then you should be able to work more and become financially independent. Just hang in there until then! Take care of yourself!

Thanks Cat, i dont think i shall touch alcohol for a while now!
The boyfriend is 17 aswell, hes too busy going out getting drunk with friends. He is completely self obsessed and its rediculious! He never used to be like this. I've told him i can't be bothered with his hastle and until he grows up he can do one. Now he realises hes on the verge of loosing me he suddenly wants to come and 'talk' (god only knows what that means)!

There is noone i can go to about my mum, im just left alone with it all and thats hard. I don't have any friends anymore because they all left as they wanted social lives. I'm just stuck completely alone on a world i feel i dont even know any more. Makes it hard to want to stay. I tried speaking to her a couple of days ago saying it was making me worse. She just told me i brought it on myself. Charming!

Got reccomended this 5-HTP stuff from an old collegue as her daughter suffers with anxiety through IBS and she said they really helped her get her life back on track and make it bareable. So thought i'd give them a try to see if it will get rid of my anxiety as thats doing my head in! Brought myself some hair dye to cheer me up too

Had a bit of an off day with the tummy and starting to feel why me! Oh well, onwards and upwards i guess! How is everyone today?

mhmommy - I had my PET scan and CT scan fairly close together. I've had several CT scans of my abdomen within a couple of years. The brain cancer was diagnosed via MRI, and I have scans every few months to monitor for regrowth of the tumor. I'm 41, and I've not questioned the risk for the tests because they've always been necessary given the reason they were done. I had the PET scan after my brain cancer was diagnosed because the neuro oncologist wanted to make sure I didn't have any other cancerous growths anywhere else in my body. I had the CT scans because I've had numerous ovarian cysts and also to check for intestinal issues because of all of my GI problems the last couple of years.

Chickadee - good point, I forgot about the shuttles!

Rose, I like Cat's thought about a letter to your mother. Sometimes you're able to say things when you write them down that you can't when you're feeling emotional and trying to talk, and maybe she'll understand better while reading it than when she's arguing and not listening. Worth a shot anyway. And I'd agree it's probably a good idea to take a break from the boyfriend for a while. You need less stress in your life right now, not more.

For me, things just keep getting.... grrr. I am having memory problems so I'm being put on leave from work. I have to get testing done with my Neuro Oncologist so I'll be off for at least a month. It never rains but it pours.

Rose, I wasn't sure what 5-HTP was so I just googled it. The very first link I found says this:

Don’t use 5-HTP until more is known. 5-HTP might be UNSAFE. Some people who have taken it have come down with eosinophilia-myalgia syndrome (EMS), a serious condition involving extreme muscle tenderness (myalgia) and blood abnormalities (eosinophilia). Some people think the EMS might be caused by an accidental ingredient (contaminant) in some 5-HTP products. But there is not enough scientific evidence to know if EMS is caused by 5-HTP, a contaminant, or some other factor. Until more is known, avoid taking 5-HTP.

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From this link: http://www.webmd.com/vitamins-suppl...veIngredientId=794&activeIngredientName=5-HTP

Just based on that, I would advise you to not take it! Or at the very least, ask your doctor about it first. I know you want some symptom relief, but self-medicating with something potentially dangerous and without your doctor's knowlege is not the way to go.

Cindy, that sucks about being put on leave at work! I hope the neuro-oncologist can figure things out and get you feeling better. I know you've had some memory issues for awhile - it got worse when you switched medications, right?

Cat, i did speak to my doctor about it because i didn't want to take anti depressants as its all too much. I have spent a lot of time researching it and my doctor has said i can trial it but if i get any side effects i have to stop use immediatly. I'd rather try something more natural as the nausea i get from other medications is horrendous and i tried a few anti depressants but they all gave me massively bad restless leg syndrome (RLS) and i couldnt cope with that as it stopped me sleeping which made me worse. I just want something that wont give me the RLS and everything they are prepared to give me does flare that up.
Think i'll give it a shot and see where we get with it.

How is everyone today? I'm feeling quite yucky and havent managed to eat yet today the nausea is so bad. Not good! ! Can't wait for that pill can results to arrive! If that shows nothing i might just give up hope!

Cindy glad you're ok. thanks for lmk.
I will look into mri - good luck
@ mayo.

Cat-a-Tonic said:

lsgs, that's great that LDN is still working and that you've got a good GP! That's definitely good news, especially after the string of bad doctors you've been through. You mentioned going to a physio - is that physical therapy? If so, I hope you do well with it. Physical therapy was great for me, it helped my joint pain for several years and my physical therapist was wonderful. She didn't know there was a link between IBD and arthritis until I told her - and I guess she went home and did all kinds of reading up on the subject matter and then she thanked me for telling her that! I like it when a medical professional doesn't claim to know everything and is eager to learn new stuff and appreciates that her patients know some medical stuff too. She helped me a lot of course too, I feel like we both helped each other. Anyway, PT was great for me and I hope it's great for you too!

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Yes it's physical therapy. I'm having a lot of back pain, heel pain which is strangely better on LDN, wasn't expecting that. When I exercise I get pain under my right rib cage. At times I can't expand my chest fully cause there's inflammation in the articulation between my spine and ribs according to my rheumatologist. The part that depresses me is I can no longer cycle due to the pain under my right rib cage. I'm not convinced at all that it will right my exercising problem but it can only help with the other stuff.

On the subject of neck lumps, you probably all know I'm at 44fold increased risk of cancer and my rheumatologist has it drilled into me I have to check my neck, groin and armpits for lumps all the time. On average it develops ten years after diagnosis, which I am approaching. I have an inch long lump in my neck, has been present for over a week, and is not going away. But you know that way you've been treated so badly by doctors and accused of hypochondria so often I don't want to go get it checked out? I just don't want another eye roll from a doctor looking at the anxiety misdiagnosis that flags up on the screen right away :ybatty:

I feel kind of shady I don't contribute as much here. It's not that I've deserted the undiagnosed club, I just feel like I have nothing useful to say sometimes. I'm always reading and will pop in when I feel I have something to offer but I don't want you guys to think I'm only interested in posting about myself. You guys have helped me so much, you know more about my struggles than my own husband/friends/family!!

Well been having a bad day today! Not eaten much as been feeling so sick. Exhausted too. Just about given up, got to speak to my doctor tomorrow about work to see where we go from here while waiting for test results.

Been getting some pretty sharp pains around my heart area which isn't feeling good at all! Lump in my neck is aching too, hope they hurry with this xray! I hope they sort me out soon!

Hows the weather for you guys with all that snow? We've been lucky in the UK today, its been lovely! Really boosted my spirits a bit being able to sit in the garden with fresh air! Still had a bit of a rough day withe the pa8n and nausea. Hopefully tomorrow will be better! Hope your all ok

Rose, that's scary with the heart pains - can you call your GP and let them know what's going on and ask them to please rush the x-ray? Weren't they going to do more heart tests, too? If the pains continue, you may want to go to A&E, as hopefully they can run tests while you're there. Good luck, hun.

As for our weather, it's actually pretty nice today! The high temp is 50 F (10 C), so it's warmed up enough for the snow to start melting. It's supposed to snow tomorrow though, yuck.

lsgs, you are not shady and don't worry about not contributing as much as you think you should! We're all here for each other, regardless of how often we post. Whether you write 1 post a month or 50 a day, I care about you regardless and I keep you in my thoughts and all that stuff. When you don't post, I presume you're doing okay enough that you don't need to come here and vent or get support at that moment, so I don't worry too much when you (or any given person here) are silent. So not posting is okay as long as I can presume you're okay! Okay?

So how's everyone today? I had a weird weekend, I inadvertently drank some spoiled almond milk and spent a good chunk of the day yesterday worried that I had given myself food poisoning. Fortunately I seem to be okay, but I sort of stressed myself out and caused myself some nausea just thinking about it too much yesterday! So today I'm just kind of picking myself back up and trying to have a better day.

hey guys sorry i've not been around much, been a bit poorly, but very busy.
Cat - spoilt almond milk sounds foul lol
lsgs - its always nice to see you around
RosannaKate - wasn't the weather fantastic yesterday? Its been at least 8 months since its been like that I think.
It was my boyfriends birthday yesterday, and mine is on 22nd, so my parents put a meal on for us. It was lovely and even better... it didn't make me ill.
We went for a walk around the local nature reserve too and I got to indulge in my favourite past time, photography.
I finally decided to take the plunge and make a website with my photos on

It is quite scary Cat, rang my gp and he just said he'll push the specialist.... useful!! I'm falling apart!! Nobody listens to me, I say I'm in pain and its like, oh we'll push the specialist... thats all very well but im still in pain and getting very stressed! A&E is easier said than done, I'd rather ride through the pain right now than spend up to 6 hours sat alone in a waiting room to see someone who will probably say the same thing! I'm losing faith in the 'NHS' day by day. I'm losing hope of normality every second. I'm really starting to struggle now, its bringing me down and struggling to get back up again. Pushing on.

Had a crap day and this flare just wont go down! Stress of it is taking over. Want to get through a day with mormal toilet breaks. I've forgotten what my life was like before being ill now, thars a horrible feeling.

Hope your all well

Akiva, I'd love to see your website! Would you be okay with posting the link? Or would you send it to me in a PM? I'm always interested in hearing about the hobbies of others on here and I love that being ill doesn't stand in the way of people pursuing their hobbies.

Yes, the spoiled almond milk was bad and I'm a bit embarassed about it. I can never tell by sniffing if milk (or almond milk) has gone bad or not. I should add that the carton of almond milk was puffed out, so it was pretty obviously spoiled and I don't really know what I was thinking. I should have just thrown it out then and there! But I couldn't tell by the smell, and I had hubby sniff it and he couldn't tell either. So he told me to take a sip of it and see how it tasted. I did and honestly still couldn't quite tell! I guess it tasted a little funny but it wasn't gag-inducing and there weren't chunks like when cow's milk goes bad. So I asked hubby to take a sip, he did, and spit it right out again and said yes, it's definitely gone bad! Then I started to worry because I had swallowed my sip, and if it was definitely bad, was I going to get very ill from it? So I worried a lot but I am still okay, about a day and a half later. So I hope I'm in the clear by now. And in the future, lesson learned - if the almond milk container (or any food container really) is puffed out, that means it's gone bad and I can skip sniffing and tasting and just throw it out!

Rose, I know that feeling. Sometimes the wait in the ER/A&E is ridiculous. Even so, I still think it's better to get this checked out sooner than later. Are there any urgent care/walk-in type clinics you can go to? Or can you call your GP again and tell them you want to go to A&E, and ask them to phone A&E and he can let them know the situation and what tests you need and that you need care right away? I've heard of others in the UK doing things like that, so hopefully you can get your GP to help with the A&E situation too. I know they've already established that you have a fast heart rate, so hopefully all it will take is the nurse taking your pulse to realize that you need some help with this new symptom! So please, go if you can, and ask your GP to help.

Nhs is shocking at times. Ive waited 5 months for my 3 month appointment. A and e are not the most helpful but must be better then gp.

Am I allowed to post the link?
Its http://www.meeleesphotography.com if its not ok ill take it down

My nickname in real life is meelee. Akiva is my online name. Neither are hugely similar to my real name

The problem for me is the closest A&E is 40 minutes away, and unless I'm on my death bed I havent got a chance of getting a lift up there, so I'd have to do 3 busees and 1 train to get me there and then back again. It's just useless trying. GP says hes pushing all appts for me as im in so much pain, but thats useless.

Akiva, I hacent seen my GI in 8 months, throughout which I've been waiting for test after test! But still no appt now tests are complete!

akiva said:

Nhs is shocking at times. Ive waited 5 months for my 3 month appointment. A and e are not the most helpful but must be better then gp.

Am I allowed to post the link?
Its http://www.meeleesphotography.com if its not ok ill take it down

My nickname in real life is meelee. Akiva is my online name. Neither are hugely similar to my real name

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I swear by NHS 24. I don't know what's happening with the system in England, if you still have it, but up here when we call I've always been sent to an out of hours clinic. You see a GP who has loads of time for you (I've always been around 2am or so mind you) will take time to examine you, can give you pain relief there and then, and can arrange for you to be admitted to hospital bypassing A&E. It's a really great service for people like us when our lives aren't in danger, but we're in a lot of pain and need pain relief or assessment.

For some reason my GI appointment has been brought forward by a month?! I don't know whether I want to go though, given my experience with this GI last time. And my appointment for the integrated care clinic is on my 3 year anniversary awwwwwh :heart:

Akiva, you're allowed to post the link as long as you're not advertising it or asking money for it or anything like that. The specific forum rule states, "The use of affiliate links where money is made off the sale of a product are not allowed nor is the linking to a personal site devote to the sale of a good or service you profit from. This is to ensure unbiased information." Since you're not making money off your site/not selling anything, it's fine. I really like your photos! Do you do volunteer work to take photos of the shelter dogs? I read an article a little while ago about how shelter dogs, particularly black dogs, have a hard time getting adopted but that they get adopted out more easily if they have a really nice photo - so that's lovely that you've taken some wonderful photos of them.

For you guys who are waiting months and months on the NHS for an appointment, I'm not totally sure how things work over there, but are you able to call and see if there have been any cancellations? Or can you get a sympathetic nurse on the phone who can bump you up to be seen sooner? I did that with my first colonoscopy - I called to schedule it, and the soonest opening they had was like 4 months away. I was so ill at that time and I waited about a month, then I called the hospital and broke down crying and asked if there's any way I can be seen sooner because I was just suffering and didn't know how I would make it another 3 months. Fortunately the nurse I talked to was very sympathetic and she got me in the following week. So in my experience, crying on the phone can help. Again, I don't know how the system works over there or if that would work for you guys, but that's what worked for me.

Hey Cat - yeah I do take photos for the RSPCA, im the volunteer photographer, they have a few of us, but im the one they use most often as Im around so much. Black cats suffer the most in the shelters, no one wants them. Black dogs aren't so bad but it depens on breed. if its a Staffordshire bull terrier they will inevitably be in for ages, whereas a Chihuahua will be in a few days at most, its very frustrating.

I had to phone the secretary of my consultant and cry to get the appointment at the end of this month, otherwise it was going to be June time (which should have been 3 months from the 31st oct 2013)

Akiva, you mentioned black chihuahuas getting adopted relatively quickly - but in my personal experience, even a "cute" black dog can have trouble getting adopted, sadly. My dog is a purebred Pembroke Welsh corgi - a really popular breed. I got her when she was 2 years old as her prior owners couldn't keep her any longer. So I got her at a good age - not a crazy puppy anymore but still lots of life and energy left in her. She came fully trained. Her previous owners paid nearly $1000 to buy her from a reputable breeder! But her previous owners had such a hard time rehoming her even though they were offering her for free. They checked with family, with friends, and then finally they put the word out at their workplaces - that's how I came to find out about her, through a co-worker. I had been looking for a corgi-mix at the time as I was getting into remission, I live near a dog park, and I like corgis but didn't necessarily want a purebred. When I found out about a free, awesome corgi, I jumped at the chance to own her! The only "drawback" is that she's not the common red corgi color that most people think of, she's "tri-color" meaning she's mainly black with some white and a bit of red. I don't know but I presume her color must have prevented some people from taking her? I can't imagine how you could go through everyone in your family and friends and not have one taker for a wonderful dog like she is, and have to ask random co-workers if they'd like a dog. Just crazy.

My cat is a rescue too, I got her as a kitten. My friend found a sickly litter of stray kittens in a bush near her workplace, and she called me up and asked if I'd like one. I said sure. My cat came to me with an upper respiratory infection, horrible diarrhea (her original name was poo-poo kitty!), and ear mites. I didn't even care, I just adore my little black kitty. She's nearly 11 now. I love my dog, but admittedly I'm more of a cat person. My cat knows to follow me into the bathroom, and she'll just hang out in there and purr for me - that's seriously the nicest thing on a bad tummy day. She'll come if I call her, and she'll meow back to me if I ask her questions. She's just the best. I don't understand why people don't want black pets - they are awesome!

Sorry to get the thread a little off topic there. How's everyone doing today? I've got a headache and I'm kind of tired, but otherwise I'm okay. I see my GP on Thursday and I am probably going to have a lot of blood tests, yippee.

there was a black staffy cross Labrador at the centre called Jim, hes lovely and hes 7 years old. He was left to starve to death but luckily he was rescued. That was October 12. He now lives at chesterfield rspca as he was constantly overlooked at our shelter. However there were 4 Chihuahuas that came in at the same time, one of which was tbh Ugly. He growled, tried to attack other dogs, cats etc and was a spoilt dog, and he was adopted. I honestly don't know why. At all. all 4 Chihuahuas were adopted within the week, even one which was 14 years old.
We had some kittens that were totally black, they were born at the centre and they were in the centre 2 years before they were homed. I don't understand people sometimes.

I am hoping to get some business from my website but that's in the far far future, ive got to finish my nursing first, only 22 weeks left :S

Blood tests are always good fun, wanna take bets on whether itll show anything? (ive got to have some again too)

Is a staffy the same thing as a pit bull? If so, there are tons of them in shelters here. Back before I got my dog, I'd look at the local animal shelter's website every so often to see what dogs they had available. Usually about 50% of the dogs in the shelter at any given time were pit bulls - of all colors. I'm not sure exactly why, but that's a breed that ends up in shelters here a lot.

As for chihuahuas, I think they're all kind of ugly. I know a girl who loves them and I can't figure out why - they don't seem to have good temperaments, and they aren't cute either. I would rather have a pit bull than a chihuahua!

Blood tests - actually, yes, I am expecting a result this time around. My GP is going to test my cholesterol and he's making me fast (water only) for 12 hours beforehand. (My appointment is in the morning, so I just have to not eat anything after dinner the night before, and then wait until after the blood test to have breakfast - shouldn't be too bad.) Last time I had my cholesterol tested, it was borderline high. High cholesterol runs in my mom's side of the family, all the women on her side have high cholesterol. My mother has high cholesterol even though she runs marathons and eats super healthy, it's apparently not something that's easily remedied in our family even with strict diet & exercise. So I'm expecting to have high cholesterol on one blood test. As for the other blood tests, I have no idea. I'm going to ask for some vitamin levels to be checked as I've been kind of fatigued and have had some heart palpitations off and on lately. So I'll ask for vitamin levels and whatever else my GP recommends. I have a feeling they'll be taking a lot of blood from me! But it'll be a good thing if they can tell me more about what's going on with me.

staffys are similar to pit bulls, pit bulls are banned in the UK.the image of staffys in this country is that they are only owned by shady characters and are all viscious, but that is so far from the truth its unreal.
its because they are a massively overbred and have a bad reputation, if ever theres a negative news story involving a dog its usually a pit.
I don't know what bloods im having done, my GP just said he'd write to me when he wants some, and ive got a letter to ask me to contact them.

Well, went back to work yesterday. It was nice to be back, struggled a bit with only 5 hours though :/ another 5 today but got to see an 'occupational health therapist' at 10:30am. In so much pain today however and nothing will touch it pain killers wise. Really not good . Anyway, hope your all well off to work!

akiva said:

staffys are similar to pit bulls, pit bulls are banned in the UK.the image of staffys in this country is that they are only owned by shady characters and are all viscious, but that is so far from the truth its unreal.
its because they are a massively overbred and have a bad reputation, if ever theres a negative news story involving a dog its usually a pit.
I don't know what bloods im having done, my GP just said he'd write to me when he wants some, and ive got a letter to ask me to contact them.

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Staffies in Scotland are pretty much always in the hands of the type of person who would train them to be violent. I've met some lovely staffies but the majority will always attack or growl at my dog, if I'm honest. I am wary of them but there are some that my dog just gets on so well with they play for ages. I think they are lovely dogs but unfortunately it's whatever dog is fashionable for these people, it used to be the German shepherd, Rottweiler and now they have a bad name too

lsgs said:

Staffies in Scotland are pretty much always in the hands of the type of person who would train them to be violent. I've met some lovely staffies but the majority will always attack or growl at my dog, if I'm honest. I am wary of them but there are some that my dog just gets on so well with they play for ages. I think they are lovely dogs but unfortunately it's whatever dog is fashionable for these people, it used to be the German shepherd, Rottweiler and now they have a bad name too

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Exactly. its moving to mastiff types atm I think x

akiva said:

Exactly. its moving to mastiff types atm I think x

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Definitely. Also seen quite a few questionable owners with akitas or malamute type dogs.

Hey I'm 16 and I have a lot of unanswered questions! I've been in and out of the doctors for around 7/8 months now, all started with a sore mouth and ulcers all over the sides of my mouth..dentist had never seen anything like it and gave me an emergency referral to the hospital. They got back to me a few months later and said I could be biting my gum in my sleep, however the dentist didn't agree with this. The ulcers in my mouth made my jaw and cheeks swollen which looked awful! Also, my eyes have been swelling up too. In the mean time, I've had awful stomach pain in the bottom of my stomach and near my belly button. It feels like a numbing sensation which aches and lingers and then starts to feel like more of a pain. It's a crippling pain which leaves me holding my stomach and having to sit down and bend forward to help the pain. After I've eaten, within half an hour it goes straight through me. I've had this for about 6 months now and have had various tests. I was tested for glandular fever and anaemia but both were negative. I get tired a lot, like a lot. I haven't yet been tested for colitis or Crohn's disease but both were mentioned by the doctor. He said it could be IBS. I went to a specialist and I have a fissure..he said this could be causing the constant diarrhoea which has been going on for 6 months. However, I've noticed mucus when I go to the toilet and what looks like flesh?.. I get this every time I go to the toilet, there's also quite a lot of blood on the toilet paper, also lumps of blood in the diarrhoea. I understand this could be from the fissure however I'm still curious as to whether this could be Crohn's? Has anyone had similar symptoms to this or can anyone relate to any of this? Any suggestions would be extremely helpful seeing as this has gone on for so long! I'm new to this whole forum thing I'm still not really sure what I'm doing haha..

amyy_xo said:

Hey I'm 16 and I have a lot of unanswered questions! I've been in and out of the doctors for around 7/8 months now, all started with a sore mouth and ulcers all over the sides of my mouth..dentist had never seen anything like it and gave me an emergency referral to the hospital. They got back to me a few months later and said I could be biting my gum in my sleep, however the dentist didn't agree with this. The ulcers in my mouth made my jaw and cheeks swollen which looked awful! Also, my eyes have been swelling up too. In the mean time, I've had awful stomach pain in the bottom of my stomach and near my belly button. It feels like a numbing sensation which aches and lingers and then starts to feel like more of a pain. It's a crippling pain which leaves me holding my stomach and having to sit down and bend forward to help the pain. After I've eaten, within half an hour it goes straight through me. I've had this for about 6 months now and have had various tests. I was tested for glandular fever and anaemia but both were negative. I get tired a lot, like a lot. I haven't yet been tested for colitis or Crohn's disease but both were mentioned by the doctor. He said it could be IBS. I went to a specialist and I have a fissure..he said this could be causing the constant diarrhoea which has been going on for 6 months. However, I've noticed mucus when I go to the toilet and what looks like flesh?.. I get this every time I go to the toilet, there's also quite a lot of blood on the toilet paper, also lumps of blood in the diarrhoea. I understand this could be from the fissure however I'm still curious as to whether this could be Crohn's? Has anyone had similar symptoms to this or can anyone relate to any of this? Any suggestions would be extremely helpful seeing as this has gone on for so long! I'm new to this whole forum thing I'm still not really sure what I'm doing haha..

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There are a number of things that could be causing this. Bleeding generally does not happen with IBS. Have you had any tests like colonoscopy, endoscopy, MRI etc??

amyy_xo said:

Hey I'm 16 and I have a lot of unanswered questions! I've been in and out of the doctors for around 7/8 months now, all started with a sore mouth and ulcers all over the sides of my mouth..dentist had never seen anything like it and gave me an emergency referral to the hospital. They got back to me a few months later and said I could be biting my gum in my sleep, however the dentist didn't agree with this. The ulcers in my mouth made my jaw and cheeks swollen which looked awful! Also, my eyes have been swelling up too. In the mean time, I've had awful stomach pain in the bottom of my stomach and near my belly button. It feels like a numbing sensation which aches and lingers and then starts to feel like more of a pain. It's a crippling pain which leaves me holding my stomach and having to sit down and bend forward to help the pain. After I've eaten, within half an hour it goes straight through me. I've had this for about 6 months now and have had various tests. I was tested for glandular fever and anaemia but both were negative. I get tired a lot, like a lot. I haven't yet been tested for colitis or Crohn's disease but both were mentioned by the doctor. He said it could be IBS. I went to a specialist and I have a fissure..he said this could be causing the constant diarrhoea which has been going on for 6 months. However, I've noticed mucus when I go to the toilet and what looks like flesh?.. I get this every time I go to the toilet, there's also quite a lot of blood on the toilet paper, also lumps of blood in the diarrhoea. I understand this could be from the fissure however I'm still curious as to whether this could be Crohn's? Has anyone had similar symptoms to this or can anyone relate to any of this? Any suggestions would be extremely helpful seeing as this has gone on for so long! I'm new to this whole forum thing I'm still not really sure what I'm doing haha..

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Hello Amy, welcome to the forum! Sorry you feel so bad. Have you been referred to a gasteroneterologist? If not, speak to your GP and push for one! Blood is definately not a symptom of IBS and isn't something that should be ignored. Push for a referral as they will do tests to rule IBD in or out! Have you had bloods done to test your inflammation markers? They can sometimes be helpful but even if that comes back clear, it doesnt rule out IBD.
It's a long and tiring process I know, I've been going through it for almost 2 years now. Are you doing your GCSE's this year or have you just completed them? They can be stressful and that can make symptoms worse so you have to learn how to manage them as best as possible while waiting for a diagnosis.
I can relate to alot of what your going through, I am only 17 myself and have been struggling with the pain, fatigue and diarrhoea. I also get really bad bloating. So if there is anything you want to ask, please feel free to PM me or ask on here. The guys on this forum are fantastic and give so much great help, support and advice... so if there is anything you want to know just ask and everyone here will help as much as they can!

amyy_xo-- The mouth sore makes me think of Behcet's diease. A friend of mine has that, and insane mouth sores that puzzled doctors was her first big symptom. Try bringing up this diagnosis with the doctors. It can cause ulcers in the GI tract as well, which could account for your GI symptoms. http://www.hopkinsvasculitis.org/types-vasculitis/behcets-disease/

Hi Amyy_xo, welcome to the forum. I have to agree with Chickadee, Behcet's is what I thought of too. There's a girl who used to be a regular on the forum who was diagnosed with Behcet's (she has a lot of Crohn's-like symptoms but also mouth sores). She wrote a nice thread about her experience - have a read through this thread and see if it sounds similar to your situation:
http://www.crohnsforum.com/showthread.php?t=44354

I definitely agree with lsgs that it doesn't sound like IBS. Blood in the stool, unintentional weight loss, night sweats/fevers, and "nocturnal diarrhea" (where you wake up in the night with the urge to go) are all considered "red flag" symptoms that it's something more than IBS. Have you had any of those symptoms besides the bleeding?

Hi I'm new here looking for advice for my daughter. She is 16 is Type 1 Diabetic and became ill almost 5 years ago and was diagnosed with chronic fatigue syndrome/ME. She has had tummy problems for years but things have got a lot worse in last 3 years. She had an endoscopy a year past December and they found severe chronic gastritis - she had a calprotectin level of 133. They didn't do endscopy as felt no need. Things have been worse with nausea, vomiting, constipation etc. Been hitting my head over a brick wall and her gastro was off ill and no one else would look at what was going on - they blamed her CFS. Anyway gastro is back I got her seen urgent and they re did some tests. Her ESR is slightly raised, her albumin a bit lower, she is totally iron deficient now and her calprotectin level is now 400. The are doing a endoscopy and colonoscopy on the 27/28 of this month but am panicking as everything I read about calprotectin is to do with IBD. They don't think its coeliac as her blood test came back negative again. She has been so ill for the last five years and feel like no one has been listening to us. She has had so much tummy pain etc but because she doesn't complain it was put down to IBS. Any advice ?

Isgs - I've only had blood tests so far, no one has mentioned a colonscopy, endoscopy or MRI to me yet, however once I go back to the specialist in 6 weeks he says if the fissure has cleared up and i still have stomach pain etc. I will have to have a camera in my stomach! I'm not sure what the technical name for that is, but it scares me a lot because I'm very squeamish when it comes to blood and things like this! Thanks for the help!

RosannaKate - Thank-you! I haven't been referred to a gasteroneterologist, only referred to a specialist who deals with fissures. The doctors surgery isn't very helpful at all, they seem to just dish out pills without diagnosing the problem! As far as I'm aware the blood tests i had were used to test for anaemia and glandular fever. They said my bloods were okay apart from lymph something was a little low? I'm in college at the moment doing art & design, my parents have explained to the tutors my situation and how I'm tired a lot and find it difficult being in college because of the toilet problem, they're okay about it but one tutor in particular is giving me a bit of a hard time about it which is stressing me out quite a lot! I think the pressure of college work is starting to get on top of me a lot which is making my stomach ache more. I just lack motivation to get ahead of all the work because I'm so tired all the time! It's a bit of a sticky situation which not many people seem to understand which is also frustrating. I'm so glad that someone else can relate though! I honestly thought I was one of the only people in the world to be feeling like this! For sure I'll keep in touch if there's any advice or anything i need, same for you although I'm probably not much help! Thanks again!

Chickadee - I've just looked up Behcet's disease and it could definitely be possible, I'll mention it to the specialist when I go back. Thanks for your help!

Cat-a-Tonic - I'll have a read through that now and see what I think, the doctors never mentioned Behcet's disease to me, they didn't seem to think it was anything too serious however don't really believe them..I've heard a lot about having to get second and third opinions on things like this because of doctors not diagnosing people properly! The only other symptoms I've had are blood in the stool, I have woken up in the night feeling very hot quite a few times. My mum says I've lost weight since all of this has gone on but I disagree, however I'm a 16 year old so of course I'm going to have a few weight issues haha! But i have dropped clothing sizes from a 10 to an 8/6, I think that could be down to eating a lot less because everything i eat seems to go straight through me and gives me such terrible stomach pain. I'll let you know about the girl's thread about Behcet's disease and if I relate to it, thanks for the help!

Amy_xo, push the GP for a referal even if you have to go through every doctor in the practice! Thats what it took for me to get referred. Although, you can ask your fissure specialist to refer you as he can too. A gastro specialist would be the one to do endoscopys, thats the camera into your stomach and then small bowel, they might also do a colonoscopy which is the other way into the large bowel. Don't worry about the actual procedure if they do decide to do it, you can have sedation to relax you and its over before you know it, its not painful either as you dont have pain receptors in the bowel, its just pressure that you can feel.
It's difficult with college I know, I had it all through my GCSEs and was pretty much never in school, noone there was supportive they just used to give me detentions for not being there and they wouldnt listen. They are a pain to deal with. Just try best as you can to get by and keep pushing for a diagnosis! I am now in an apprenticeship and have to go to college once a week, they dont really listen either, they just want to sign me off for 3 months to 'get better' they cant seem to accept this is an ongoing thing! Useful! Try not to let it get you down and keep positive, and don't be embarrassed to explain the problem to people, at the end of the day you cant change it. If you feel like you cant to get it all off your chest, come and vent to us lot, we know what its like and the stress you get from it. Keep us posted

Hi Cat26, I'm also Cat. I'm glad they're doing scopes on your daughter, and I hope she gets a worthwhile result. It sounds like you're being a really great advocate for her and I don't have much advice for you, other than take care of yourself too! I'm sure it's difficult being a caregiver and my heart goes out to you. Try to take comfort in the fact that even if she does have Crohn's, there are a lot of treatment options and hopefully she can find something that gets her feeling much better with minimal side effects. And she's very young, so there may be a cure within her lifetime - even now, there are very promising trials being done with stem cells. And remission is totally possible too, meaning she can get her life back and feel nearly normal if not totally normal. In the meantime, hang in there and good luck with the scopes - please keep us posted on how it goes! Oh, and make sure they take lots of biopsies from the scopes - certain things like microscopic colitis can only be found on biopsy, so the more random biopsies taken, the better chance they have of finding out what's going on. Good luck!

How's everybody doing today? I'm okay. I saw my GP this morning - I don't see him very often, but I really should see him more. He's a very good doctor. He said that even though they don't really know what's wrong with me, both IBD-wise and arthritis-wise, that just because I fall into a "grey area" where I have symptoms but test results are inconclusive, he said, "That doesn't mean you're crazy, you have a serious ongoing chronic illness, so don't for one second think you're crazy." That was so nice of him to address that, and I like that he thinks in terms of grey areas like that. My GI is so black and white with everything and so "by the book" whereas my GP is able to think outside of absolutes like that. I've butted heads with my GI before, but my GP and I are almost always on the same page.

So my GP did some bloodwork, he's testing some vitamin levels as I requested, he's also checking my thyroid again just to be sure it's not contributing to any of my symptoms, and he's checking my cholesterol to see where that's at (probably still too high). He also agreed that it wouldn't pay for me to go back to rheumatology (I told him my rheumy was worthless and he got a chuckle out of that), but he said it may be worthwhile to go back to physical therapy and it's up to me. He's written me a new referral for PT which he said I can decide for myself whether or not I want to go that route. I did really like my physical therapist from a couple years ago, and I have been having some bad hip pains again off and on (over the past 2 days, it rained and then snowed, and my hip was horribly painful the whole time, like I was limping and wincing - it's getting better now that the weather has cleared up). So I guess I'm going to mull over going back to PT. I'm also going to mull over whether I should go back to my physical therapist who I really like, or if I should get a new set of eyes on my case. What do you guys think, has anyone else done multiple rounds of PT, and if so did you see the same physical therapist each time?

So, that's where I'm at. Waiting for bloodwork to be enlightening, or not, and also mulling over what to do about PT and whether or not to go back to the same physical therapist. In other words, in limbo as always! How's everyone else doing?

Hey Cat-a-tonic, glad to hear your ok today and sounds like you've got a really great GP! I've had a bit of a tough week myself, went back to work part time on tuesday which has drai ned the life from me. I had to go and see an occupational health therapist wednesday, not what I wanted, she was useless, patronising and pushy. She spent the whole time telling me I must have been given a diagnosis in the 2 years. Errrr, I think not! Basically work want a diagnosis and they dont like the fact I cant give them one... if they are that bothered, why dont they push the NHS themselves! Its quite stressful, they've given me a telephone councilling service, because thats going to do the world of good! Yeah right! I dont need councilling, I need private healthcare at the pace of the NHS for me! Grrrrr!
Its almost like they are saying its all in my head with the way they are pushing oh well, onwards and upwards! Hope your all well

RosannaKate and Amy - I really feel for you with your struggle at college. I struggled at school, struggled at Uni, and I struggle at work so I do sympathise with you. You can get through it through. I managed to qualify with every odd stacked against me. Just make sure you take care of yourself and you take care of your own mental health. Realise when you need to take time out. Don't let anyone make you feel bad. I had a trainer when I graduated that bullied me senseless when I got sick and it's affected my confidence ever since. To be fair, it wasn't just me though! I just got it worse cause he had something to pick on.

Cat, I love your GP. He sounds awesome, seems to have the same attitude as my new GP.

Well, off again today with excessive pain. Feel like i've got someone pushing a brick into my lower back and putting a knife through my intestines. I really feel like i cant do this anymore, can feel the tears welling up from the excruciating pain. Wish i could win the lottery so i could just take a few years out of work to get myself sorted and get out of my house.
I stress because without my job i have no income and i buy everything i have, so without that im stuffed.

Anyone got any advice for pain relief? Paracetamol and codeine dont touch it and i cant take nortriptaline or any anti-depressants in that range due to the side effects i get. Any advice would be fantastic as i cant take it anymore.

Having a bad time with symptoms now and its really getting me down feeling useless!

Hows everyone else doing? Lovely and sunny today in the Midlands, UK! Atleast that makes me happy!

Rose, for pain relief, perhaps ask your doctor about Tramadol. I haven't taken it myself so I don't know a lot about it, but I've heard others on the forum say good things about it. It is an opioid and it can be addictive, but from what I've heard, it's less strong and less addictive than other opioid pain meds. Maybe others on here can chime in more about Tramadol as I don't know much about it.

lsgs, yes, my GP is awesome. I'm actually thinking, the next time I have a colonoscopy, I might ask him to do it rather than my GI. I know that both my GI and my GP do colonoscopies, and my GI has done both of my previous scopes. My GP obviously isn't a gastro specialist, but nevertheless he does a lot of scopes so he knows what he's doing, and maybe it would be a good thing to have him take a firsthand look at what's going on and get a new perspective on things. I just had a colonoscopy last August so I probably won't have another one for awhile, but it's something I'm considering. Does your new GP do scopes?

How's everybody doing today? Rose, we're having nice weather here too for the moment anyway. It's warming up and the snow is melting. But, the weather report said it's supposed to snow again tomorrow. I just wish winter would end already! So sick of it! My arthritic hip hurts every time it snows, it's driving me crazy.

Happy Friday everyone! Sorry, I fell off the map all week. It's been a little odd for me. I've been off work all week, of course, but I've been calling doctors and dealing with HR and short-term disability and leave issues and all that paperwork type stuff. There's been a lot of silly stuff. My doc wants me to come back down to Mayo for another MRI of my brain, and to start some brain rehab, and to see her. I'm hoping to be able to schedule that the same week as my GI stuff, the week of the 24th. The testing that will have to be done before I can go back to work can't be done until May! Grrr. So I'm calling them every day to see if there are any cancellations so I can get in sooner. I don't want to miss 2 months of work if I don't have to. I'm still losing weight, under 127 now, so looking forward to that GI appt.
and to top it all of, I have a really bad cold. It came on fast and has really knocked me down. I have no energy and absolutely NO appetite at all.
I've been thinking of you all, and I know Cat knew I was all right cuz I've talked her on Facebook a little bit.
It's finally warmer, been in the 40s and actually hit 50 once or twice! We're cooling into the 30s this weekend, but that hardly seems worth complaining about after this frigid winter.
I'll be stopping back in more often as I'm getting things more in order now.

Rose, I'm so sorry to hear that you're still feeling so unwell. I've been thinking of you specifically.

Cindy, I knew you hadn't dropped off the earth because you commented on that silly thing I posted on facebook, but I didn't know you weren't around on the forum because of dealing with paperwork-type stuff. Sometimes it's so much work being sick! I'm glad to hear you've mostly got that stuff taken care of now, and I hope you can relax and rest up a bit before you go to Mayo. That paperwork and phone calls and all that stuff though, that's just the pits. My GP's office made me fill out a whole bunch of paperwork that they sent me in the mail prior to my apppointment, and then yesterday when I got to my appointment - guess what, more paperwork! Just for a routine physical, sheesh. So I can't imagine the hoops you have to jump through and the paperwork needed to be off work indefinitely like that and whatever forms Mayo must need you to fill out, I imagine it's pretty crazy!

Brain rehab, that sounds interesting. Do you think they'll make you play video games or something like that? Maybe they'll make you learn something new, like a new language - if it's Korean, I can totally study with you! Annyeong haseyo! Kidding of course, I don't think they'd make you learn a new language, but I am really curious to hear what your brain rehab consists of.

RosannaKate said:

Well, off again today with excessive pain. Feel like i've got someone pushing a brick into my lower back and putting a knife through my intestines. I really feel like i cant do this anymore, can feel the tears welling up from the excruciating pain. Wish i could win the lottery so i could just take a few years out of work to get myself sorted and get out of my house.
I stress because without my job i have no income and i buy everything i have, so without that im stuffed.

Anyone got any advice for pain relief? Paracetamol and codeine dont touch it and i cant take nortriptaline or any anti-depressants in that range due to the side effects i get. Any advice would be fantastic as i cant take it anymore.

Having a bad time with symptoms now and its really getting me down feeling useless!

Hows everyone else doing? Lovely and sunny today in the Midlands, UK! Atleast that makes me happy!

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What codeine are you taking? Co-codamol? Prescribed or over the counter?

Pain relief is tricky for bowel stuff. They don't tend to work too well tbh. Codeine based painkillers slow the bowel down which can be great if you have the runs a lot. Anti-inflammatory painkillers are irritant to the gut so stay away from them (ibuprofen, diclofenac)

I used dihydrocodeine for a number of years but it only controlled my 'milder' pain. If it was more severe and I got fed up I'd need to go to hospital for an injection or IV.

Definitely worth discussing options with your GP. Often knowing how you access pain relief is reassuring. For example I know I can rock up to my OOH clinic and I'll get pain relief if I'm really struggling, it's very reassuring to know this.

Isgs, i take 30mg of prescribed pure codeine up to 4 times a day. They wont increase dosage as they dont want me on it because its so addictive and i am only 17 and am tiny.

My GP has told me he has no more options for pain relief and that i have to wait until i can see the GI to get anything else, which could be months! So i'm not really getting anywhere fast. Just finding health professionals pretty useless right now.

wow.. i just joined this group 30 minutes ago and i'm so relieved that i'm not crazy and making all this up in my head haha..
i'm new to this and i'm still getting the hang of things.. i just posted all my details in the your story section and i don't wanna annoy you guys with posting it all again (it's kinda long) but it is nice to see this thread because i'm just glad i'm not the only one who has had symptoms for a while (maybe a year??) but hasn't been a dead giveaway that it's crohn's. well i guess i'm not glad that there are other people with this.. but you know what i mean
....by the way am i posting things correctly? if i'm not i apologize in advance lol

RosannaKate said:

Isgs, i take 30mg of prescribed pure codeine up to 4 times a day. They wont increase dosage as they dont want me on it because its so addictive and i am only 17 and am tiny.

My GP has told me he has no more options for pain relief and that i have to wait until i can see the GI to get anything else, which could be months! So i'm not really getting anywhere fast. Just finding health professionals pretty useless right now.

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Welcome to the club paches93! Feel free to post your story in here if you like

RosannaKate... I'm of the opinion it's not acceptable to leave you in pain because it doesn't suit the doctor. I never got pain relief until I was admitted to hospital 3 years after I first started seeing a gastro. I have no idea how I coped before dihydrocodeine and I am totally burned out now. If I had had access to pain relief from the start my outcome would probably have been different.

You have to push for what you want and need. At 17 I trusted doctors and what they said implicitly but now I realise they are only human and quite often make mistakes or worry about themselves before you.

Your GP can certainly prescribe stronger meds, he just doesn't want to. You need to get across you need stronger meds if that's a route you want to go down. Of course it's not something to take lightly as they are addictive. I used them for 3 years and came off them no bother at all when I started low dose naltrexone. If you are in genuine pain they do not have the same addictive qualities as those taking them for the 'high'. Also they are really good for controlling diarrhoea (strong codeine, at least)

Do your own research and do what's right for you

Thanks Isgs, i will do a bit of research and then go push my GP! I need something to get me through!

I know this is a bit of a random one but was wondering if anyone has any idea on this. I woke up this mornong with slight pins and needles in my left hand and throught the day its been there but i could ignore it. However about 1 1/2 hours ago i started getting severe burning sensations in my forearm and in my lower palm of my hand, its just getting worse and burning more. Any ideas? Wondering if theres any link with any of it?

Well i've had an ok day today other than that, i managed to go shopping in a shopping centre half hour from home and got there and back in the car with no accidents or desperation! Yay! Boosted my spirits a bit. Still don't think i could face some of my other fears like eating out in restaurants yet. Thats too daunting, but one step at a time! Hopefully, tomorrow will be an ok day too! Hope this burning goes because its getting unbareable! How is everyone else today? Blooming lovely weather again today! Starting to feel like summer! Yay!

rosannakate,
do you think you slept on your arm weird? sometimes i fall asleep in really weird positions and when i wake up my arm will be numb for hours. maybe you pinched a nerve or something? i hope it goes away soon though!!!

I dont think so, I do get a bit of pins and needles in them but never burning. It was numb and tingly all day but sat down early evening to chill out and its just started burning and a couple have lumps have formed on it. Really unbarable burning. Hopefully it'll settle as was hoping to get some sleep tonight haha!

what kind of bumps? are they red like hives looking or something else?

Just looks red and blotchy, the bumps are just raised and red... if I touch my skin its agony, makes the burning worse... but its not itchy at all.

that sounds horrible. take a photo, just incase its related so you can show drs at a later date if needed
might want to go GP though

Rose, when you mentioned the painful red bumps, my first thought was erythema nodosum. It's a skin condition that occurs sometimes in conjunction with Crohn's. Have a look at this link and see if it looks & sounds like what you've got. If so (or even if not), you may want to head back to your GP yet again. I haven't had EN myself and I'm not sure what the treatment is, but I've heard it's pretty painful and your doctor hopefully can do something for it.
http://en.wikipedia.org/wiki/Erythema_nodosum

Hi Paches, welcome to the club! I just had a read through your "My Story" post, and you are definitely not crazy! Having blood in your stool is a major red flag but the colonoscopy will hopefully find the source of the bleeding. Don't let them tell you it's "just IBS" because IBS doesn't cause bleeding. The weight loss and malabsorption are worrying too and are also not part of IBS. The foot cramping you mentioned, that's usually due to low potassium. I'm the same way, I try to get potassium in my diet and I also take a potassium supplement, but I get fairly regular foot cramps anyway, particularly when I sweat. So I feel for you! You also mentioned in your post that your ANA was a bit high - I would ask your doctor about that. Sometimes a high ANA can indicate other autoimmune illnesses like Lupus or Rheumatoid Arthritis. Lupus can mimic Crohn's-like symptoms, and of course RA can cause joint pains, so it would be good to confirm/rule out both of those.

You also mentioned wanting to get back to running, and my heart really goes out to you there. I never really enjoyed exercise before I got sick, but afterwards, I learned to really appreciate it and enjoy being in the gym and pushing my body towards health & making myself hurt "in a good way." I still can't jog due to bad hip pain, but I love lifting weights and it really frustrates me on the days that I'm not feeling well enough to hit the gym. For what it's worth, remission is definitely possible regardless of what illness you have (I'm not fully diagnosed myself but I spent 2 years in remission). Hopefully the colonoscopy will get you some answers, and then you can get on some good treatment and feel better and get back to running. Keep us posted on how the colonoscopy goes! Good luck!

How's everybody else doing today? I'm feeling bleh yet again. The bad hip is really aching today, even though it's not raining nor snowing. I'm strongly considering going back to physical therapy for my hip - my GP wrote me a new referral for PT and he said it's up to me if I want to use it or not. I'm going to email my old physical therapist and get her thoughts on some things before I commit to going back. I feel kind of frustrated because physical therapy worked for a couple years, but now the pain is back, and I'm just not sure that more PT is going to do me much good, you know? And I don't know what to do if PT doesn't work. Then what? Then I accept that I'm 34 with arthritis and I start walking with a cane on bad days? I'm so not ready for that! But I don't see a lot of options either. I feel like I'm up against a wall, I need somebody to throw me a rope or a ladder. There are hurdles and then there are brick walls - I've jumped over a lot of hurdles and now I'm at the wall and my hip hurts too @#$% much to climb it. Sorry for the mini pity party there, I'm just having a day.

Thank you so much cat-a-tonic!!! You have no idea how frustrating it's been, I just want to be normal again!! (I think I can speak for everyone here when I say that too lol) and yeah, running has been one of my passions for as long as I remember, but now I'm always so fatigued that it makes my walk to school tiring. Working out definitely boosts my mood.. I know it's so cliche but I think running is so relaxing. Other than lifting weights, have you tried any other kind of low impact exercise? Biking is relatively less painful on hips than running, and if you're fortunate enough to have access to a pool there are so many things you can do in the water with basically zero impact.
Anyways, thanks so much for convincing me I'm not going insane, I really appreciate it haha.

RosannaKate said:

Isgs, i take 30mg of prescribed pure codeine up to 4 times a day. They wont increase dosage as they dont want me on it because its so addictive and i am only 17 and am tiny.

My GP has told me he has no more options for pain relief and that i have to wait until i can see the GI to get anything else, which could be months! So i'm not really getting anywhere fast. Just finding health professionals pretty useless right now.

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Have you tried medical marijuana? I don't know if it's legal where you are but it helps with symptoms and pain. I take oxycotin for my pain but I don't like it because it just makes me loopy.

Melibean said:

Have you tried medical marijuana? I don't know if it's legal where you are but it helps with symptoms and pain. I take oxycotin for my pain but I don't like it because it just makes me loopy.

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Hello Melibean, i'm in the UK so marijuana is illegal here. I dont like the idea of it really either.
It's just a case of pushing through.

Cat - thanks, i'll have a read and see if it matches up!

Can I ask you guys a really random and possibly weird question...

You all know I'm doing reasonably ok now. I have nausea, about one stomach cramp a day. I am as close to normal as I think I'm ever going to get.

But I find I am having 'flashbacks' almost, of particularly bad times. Something random will bring the memory back and it's like so painful to think of... It passes fairly quickly but it's quite upsetting. I feel like I'm a bit traumatised by some of the stuff that's happened to me.

For example I remember being slumped against a wall, like sitting on the pavement, like unable to move in agony just after being discharged from hospital. The docs had told me to see a psychologist during my period of misdiagnosis and I had arranged it myself. I was parked no more than 200yds away and I made it 50 and pretty much collapsed on the floor. I was so mad at myself for being late to that appointment. And when I managed to get in 30 minutes later the shame of explaining I was just lying on the pavement.

Or the time I tried to ride my bike and got maybe a quarter of a mile and ended up lying flat out on the pavement, I couldn't walk back home, I couldn't stand up and all these people were just walking by and stepping over me.

I dunno, like these random painful memories keep popping into my head and sometimes I just feel so upset. This has only happened since I got a bit better. Is it just me? :eek2:

Hey guys , I went to the doctors today to try and get a second opion from anther doctor but my GP won't do it as they want me to go back and see a CBT person I've already seen one once n I didn't feel like she helped me one bit at all all she was trying to do was put words in my mouth ,I'm undiagnosed and I'm unhappy about this choice that they have made. Has anybody else had this happen or advice they can help me with because I'm lost and I jus want to be well and get my life back & get to my goal and dream of becoming a Baker in a shop x

Kikidee, doctors can be great because of their extensive knowledge but sometimes have issues listening to people. I myself am a pharmacy student and we take countless classes just so that we can fill in the communication gap between doctors and patients... I also have been to so so many doctors who haven't listened to my symptoms. It's so frustrating and I'm so sorry you have to deal with it. Maybe the best thing to do would be to find another GP in your area if that's an option? Maybe you will be able to find someone who really hears you out.
Also, don't be afraid to tell your doctor exactly what you want. It seems you have done enough research to know what kind of problems you are having (seeing as you're on this forum) and if you tell your doctor straight up what you think you need, they might do it for you. Your doctor can't feel what you do on the inside, but if you make it crystal clear what you think a good solution is, he'll be more inclined to listen. Am I making sense?? Lol I hope I am.. Sorry if it seems like I'm rambling

Hey everybody, the thread has gone a bit quiet! Hopefully no news means good news? I've been feeling pretty unwell for the past week or so, I think I had a touch of food poisoning. I'm finally feeling better today. How's everyone else been?

I've been crap I had an exam tuesday, driving lesson Wednesday and I had to take a lot of immodium to make sure I definitely dont have an accident. Anyway thursday was not fun due to that. Had painful night. Been upwards of 15 times. Not fun. Feeling really rotten and im supposed to be going for a meal tomorrow. Ordinarily id cancel, but I cant, some have come specially from miles away, and its my birthday meal, cos its my 23rd birthday tomorrow. Not happy today.
Hows everyone else?

Aww Akiva, sounds like a rough time lately. I hope you're able to have a somewhat nice birthday in spite of everything. Since it's your birthday meal, do you at least get to pick the restaurant? When I feel really awful, sometimes I like to go out for Chinese food - I can just get plain rice if I'm not up to eating anything besides rice, or I can have a bit of steamed chicken with it or whatever I think my tummy can handle. Egg drop soup is really easy on my tummy too, sometimes I just order soup if I have no appetite. Anyway, I'm rambling. I hope you have a nice birthday and that your health gives you a break and lets you have a good day.

My twin has booked an indian restaurant cos obviously its her bday too. Im sure itll be fine.

Akiva, happy birthday!!! I love Indian food! I find it upsets my stomach but I also eat a lot of the fried stuff so that's probably why. Have you had Indian before?? I hope you'll be able to enjoy it, have some extra naan for me

Thanks
Yeah I love Indian, but ive not been to this one before and its in a different city to where I live, so ive got to bus there and back

Ooh I hope it's not too far?? Buses are def the worst way of mass transit.. And the only way to get around the part of NYC that I live in

Hey, sorry i've dropped off the radar this week too. I've had a very bad week indeed. My stomach is horrendous and doesnt feel like being nice to me. However thats the least of my worries, i've had massive chest pains and palpatations around my heart. Which is very worrying. They've given me fluids as they think that could be making the heart stuff worse. Part of me is starting to wonder if this could be something to do with my immune system as all my health and skin conditions are massively bad and gett8ng so much worse, my joints are heavy and achy (i couldnt walk up the stairs at work on wednesday as i couldnt move my joints it was so painful, i'm 17 for petes sake!), my back is giving up on me and my head is constantly spinning, i've been struggling to see properly for the past few days. Not to mention the lump in my neck thats so painful and the burning sensations down my arms. It's all got a bit much for me recently. Part of me just wants to give up as i havent got the energy anymore.

Lifes getting hard and i need that diagnosis. I can't keep going like this for another 2 years!

Happy Birthday in advance Akiva! I hope you have a lovely day, naan bread tends to be a safe bet if your feeling yucky! Hope your tummy decides to be nice to you!

Cat, sorry to hear you've been unwell, hope your on the mend now!