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Undiagnosed Club Support Group


Super Moderator
I've seen the threads in here for "5 year club" and "20 year club" and so on, but I haven't seen a thread for those of us who are still waiting on a diagnosis. So I decided to start one. Welcome, my fellow in-limbo-ers! We can talk about our frustrations and annoyances with being undiagnosed - everything from "normal" or "inconclusive" test results, to how annoying it is to be told that it's all in our heads or that we have IBS or that we need to deal with stress better. Feel free to vent or talk about your situation.

I'll start. I'm Cat, and I've been ill for nearly a year (since October 2009) with symptoms including diarrhea, nausea, weakness, dizziness, and pain. I've had many tests and they've all come back normal so far. I'm currently awaiting pill cam results - I'm hopeful but not overly optimistic. I just want a legitimate diagnosis already! I've been gradually getting worse over the past year, losing more weight and feeling more weak. I need something to be found so that I can move forward with proper treatment, diet, etc. I feel like I'm just guessing at everything I eat and every medication I take.

That's my waiting-for-diagnosis story! Please share yours!
Im so glad that you put this undiagnosed club up

Im also undiagnosed, im 20 years old, my problems started in late 2008, i was at work and callasped feeling all fluey, got told i had a chest infection and was signed off from work, forward 5 weeks later i was on holiday and started getting alot of pain diareah, sickness, got home and was told i had gastroenteritis if no better to go back, wne tback after the weekend and was told my appendics needed to come out and was sent to hospital where i was told it would be took out that night, it wasnt they were doing tests on my appendics and couldnt understand why it didnt look inflammed yet i was so doubled up in agony, anyway they took them out, did it help...... Nope. I got constipated and ended back up in hospital where they thought i had a blockage, did a small bowel study and come back with, we think you have crohns we found inflammation and ulcers in the small bowel, we will do a colonoscopy but you need to take these steriods and anti inflammatory tablets, foward 2 weeks better feeling much better i had the colonoscopy, suprise suprise the biopsys come back normal but there was still some inflammation, they then decided to do a pill cam, also normal, (was still on steriods). They then decided no its not crohns at all and was given the diagnoses of ibs, had a mri scan and an endoscopy which have come back normal and that is my story so far, bleeding since april this year and 1 hospital admission this year my weight has fell off of me now classed as underweight and generally getting worse, still fighting for a diagnoses.
Good idea for a thread.

I've had diarrhea fairly often for years now (I remember telling my boss that I thought I had IBS, and that was probably around 2003/04), but things seemed like they became dramatically worse during my second pregnancy in 2007. I'd have episodes of severe cramping shortly after eating, and end up puking and having diarrhea for hours before things would calm down. These happened often. After my pregnancy, the same thing, minus the puking, would happen from time to time, but it would pass, and life would go on. I continued to chalk it up to IBS. No way was I going to a GI, who knows what he'd do to me? :eek:

Fast forward to March of this year, and the cramping starts. I'm at a convention and feel the cold sweats start. I make it to the BR and oh, crap, there's a line. I remember resting my head on the dryer, and next thing I know people are picking me up off the floor. They're freaked out b/c I fainted, and all I can think about once I start thinking again is that I"m going to poo myself if they don't help me get to a toilet fast. Anyway, so I figure at this point I should go to a doc and make sure it's nothing serious. So I go, and he says okay, sounds like IBS, but we need to rule out Celiac and Crohns. Okay, colonscopy scheduled, then he sends me for some IBD and Celiac Blood Panel. Normal c-scope, but IBD Serology says "Pattern consistent with IBD: Crohn's Disease." WTH?? So he says okay, I don't want to put you on any of those wicked meds b/c of a blood test, let's do pill cam. Done, thought there was some narrowing, assessed with EGD, and it turned out to be sharp angulation, but found esophagitis and mild gastritis. No Crohns found to date.

During all this, my GP found with a CT scan that I had multiple hemangiomas on my liver, so she told me to get off the pill. Ever since, I've had these wicked stomach aches that I finally figured out coincided with the middle of my cycle so I assume it's ovulation pain. I've also started having rectal pain (spasms??) during BMs during my period, so now I'm talking to my GYN about the possibility of endometriosis and maybe that's the cause of my problems all along, digestive and whatnot. Blah, so that's where I am.

I hope we all get some sort of answers soon.
I've seen the threads in here for "5 year club" and "20 year club" and so on, but I haven't seen a thread for those of us who are still waiting on a diagnosis. So I decided to start one. Welcome, my fellow in-limbo-ers! We can talk about our frustrations and annoyances with being undiagnosed - everything from "normal" or "inconclusive" test results, to how annoying it is to be told that it's all in our heads or that we have IBS or that we need to deal with stress better. Feel free to vent or talk about your situation.

I'll start. I'm Cat, and I've been ill for nearly a year (since October 2009) with symptoms including diarrhea, nausea, weakness, dizziness, and pain. I've had many tests and they've all come back normal so far. I'm currently awaiting pill cam results - I'm hopeful but not overly optimistic. I just want a legitimate diagnosis already! I've been gradually getting worse over the past year, losing more weight and feeling more weak. I need something to be found so that I can move forward with proper treatment, diet, etc. I feel like I'm just guessing at everything I eat and every medication I take.

That's my waiting-for-diagnosis story! Please share yours!
I'm sorry. I hope that they come up with a diagnosis from your pill cam. This is sort of off topic but I was wondering, how did it go? I have to have one done soon.


Super Moderator
I'm sorry. I hope that they come up with a diagnosis from your pill cam. This is sort of off topic but I was wondering, how did it go? I have to have one done soon.
The pill cam itself went fine - it was the prep that sucked. They made me drink 1/2 the usual amount of colonoscopy prep. I did the Gatorade & Miralax prep, but it made me super dehydrated and I had to go in and have IV fluids. Other than that, though, it was easy. And my understanding is that different doctors/hospitals use different prep methods for pill cam, so they may ask you to drink a full prep or they may just ask you to fast/liquid diet the day before. I guess I fell in the middle, having had to drink 1/2 prep.

The pill cam itself was slightly larger than a vitamin pill. I sometimes have a hard time swallowing larger pills, but I got it down with my first gulp of water, so not too bad. Then I had to wear this belt-purse contraption which records the data. The belt was the recorder and had to be tight around my abdomen, almost like a corset, and the purse part held the very heavy battery. So I am glad I took the day off of work and didn't have to be seen in public with my belt & purse on. I was also glad to get the belt off at the end of the day! 8 hours wearing something tight like a corset isn't much fun, although it was nothing compared to the prep.

They told me I'd expel the capsule, although I haven't seen it. I'm sure it's been expelled though because I did the pill cam last week Thursday, and I've been having plenty of BMs since then. I didn't feel like picking through my poo to try to find it. But anyway, in a nutshell, the prep was the worst part (isn't it always?). I'm still waiting on the results, they said it could take a week or two because my doctor has to find the time to sit down and watch the movie that the pill cam makes. I think the movie ends up being something like 2 or 3 hours, so it might take him awhile to find the time to watch all that. I really hope it finds something and I get a diagnosis!
*waves at everyone*

I have gone into details on the Your Story forum but I too am waiting to find out which IBD I have. actually, i'm still waiting for an appointment to discuss what happens next in terms of tests!


Super Moderator
Hi StarGirrrl. How long do you have to wait to get an appointment? Sometimes my GI is booked up for 3 months or longer. I've found it's helpful to cry on the phone, and try to talk to the nurse or the doctor directly. When I did that, I got an appointment bumped up to the following week, when it had initially been 3 months away. Good luck, and I hope we all get a diagnosis soon!
Hi Everyone!
I think most of you know my story already but the brief synopsis is...
I've been ill since January. Started with a fever then turned into d, pain and fatigue. Took a long while to get an appointment with GI. They initially thought CD then had colonoscopy that found nothing. Then GI discussed such things as depression and IBS. Humph!!! Then had CT scan and endoscopy more to exclude anything else than to find CD I believe and they both came back negative. When I next saw the GI I persuaded him to try me on pred. It was a low dose of 20 mg. This worked within 3 days and I almost felt normal again. When I started to taper some symptoms came back so I went back up. When I saw the GI again he was convinced that it is CD as the pred worked so well. He sent me for a small bowel meal. When I had it done the radiologist said there was nothing to see but that he wouldn;t expect to see anything as I'm on pred (ooh I was annoyed!). I am now on 5mg and will finish in 2 days time. I am both excited and nervous as to how I will be.
I have also just started back at work after being off for 8 months. It feels so good to be getting my life back together but I am still desperate to get a diagnosis and know exactly what I'm dealing with. I do sometimes feel that other people just think I'm making stuff up as I don't know for sure whats wrong.
Fingers crossed that the people in this group will soon have more answers


Super Moderator
Hey Sam, you're definitely not alone - I've also been told (by 2 different doctors and counting) that I could have IBS or it could be depression/all in my head. I know it's neither of those things, for either of us - we wouldn't respond to pred if it were IBS or depression! I'm sure I have some depression, just because it's incredibly hard to go so long without a diagnosis and it does get me down, but I'd rather find out the root cause of my health problems than treat the accompanying depression right now, you know?
^^Know exactly what you mean. I've decided enough is enough and making an official complaint over the delay in giving me an appointment (will also mention the mis-diagnosis will be dealt with later- *evil laugh*)



Super Moderator
StarGirrrl, have they tried you on prednisone? It might be worth it to just try a "trial" run of it to see if you respond to it. I tried it for 5 days, 10 mg per day. I felt fantastic! My symptoms went away and I had energy and felt great. As soon as the 5 days were over, I felt awful again.

Also, if they still try to say you've got IBS, make sure they actually know what the diagnostic guidelines for IBS are. I saw a list that said that if you have experienced any of the following, then you do NOT have IBS: unintentional weight loss, dehydration, bleeding, or nocturnal diarrhea. Here's a helpful link (see the red flags at the bottom).

Well I was discharged from Gastro with the IBS several years ago and now am only as far as they have found imflammation in my bowel (tests done by Rheumatology), no-one is helping me at the moment, I have no appointments to go back for a consultation or tests (and Rheumatologist offered to arrange tests in the meantime). They've had the report a month.

So until they see me I am stuck. And I did report night attacks and sweats 3 years ago, plus they blood tests found inflammation but with a normal endoscopy I was dismissed as having IBS.

EDIT: I was offered steriods by Rheumatology to be going on with but I declined.
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Hi everyone. I, too, am undiagnosed and suffering :(. It's been a few months now where I have D for weeks, can't eat anything because it goes right through me and I feel so sick afterwards, to constipation, then back to D. I've had terrible cramps that wake me up every night unless I take a pain medication beforehand. My lower back has been killing me and my joints hurt. I'm exhausted and weak constantly and it makes it very difficult to work and attend school full-time.

I've had 2 blood tests done and the results were normal, 2 stool samples and everything looked normal. I ended up in the hospital wednesday where they did a ct scan and sure enough it was normal!! I feel like I am going crazy. The next step is a colonoscopy in the next week or two and I'm really afraid everything is going to look normal and I'll just be getting these tests done for nothing. I'm convinced I have IBD as I fit all the symptoms and my symptoms have been getting progressivley worse. Plus, I know genetics can play a part and my mom has had stomach problems for a long time and her brother had half of his colon removed. The doctors just don't seem to think it could be IBD, as they prescibed me a medication for IBS and it is not working. I'm just praying the colonoscopy will show something before I lose my mind!!
Hi everyone! I'm also in this club.

@ Lauren: I have the same symptoms as you do minus the diarrhea. So far all the tests they've run (multiple CT scans, abdominal x-ray, blood tests, stool sample) have all come back negative. I finally got a G.I. and he immediately suspected some kind of IBD and scheduled a colonoscopy on Oct 15, so I'll keep everyone updated!

Hang in there and know you are not alone! The uncertainty will end soon for us all hopefully.


Super Moderator
Lauren: Try not to get discouraged if your scope comes back normal like you suspect it will. I've had multiple tests (including scopes and CT scan and many blood tests) and they've all come back normal so far. I'm not giving up and I won't give up if my pill cam results come back normal (still waiting on them). If your doctors don't take you seriously, find better doctors and get a second opinion. Don't give up, and good luck on your colonoscopy!

Hi Rayzorblade, I just responded in-depth to your private message. Welcome!
Thanks Cat for starting this thread! It's really helpful to hear everyone else's stories - even tho I feel bad because I know how horrid it is to not know what's going on. I've been sick since April 2008 and have been "diagnosed" with lots: endometriosis, costochondritis, general IBD, crohns, and fibromyalgia...Had the endo removed, but doc said it wasn't enough to cause my pain (and that was 2 years ago, but pain still here). I've taken meds for the costo and crohns, but to not avail :( I've seen 11 doctors now and it's hard to keep getting the same feeling from them - well...you're not loosing weight and you hardly ever get D, so you must not really be THAT sick. In addition to nearly constant tummy pain, I have some really weird and seemingly unrelated issues like shooting pains in extramities, pounding in my left ear, tired breathing, and what I call shivers - brief moments of severe dizziness over and over. All these add up to confused docs and a 25-year-old girl thinking aren't I too young to feel so aweful? And isn't it hard to keep telling family and friends that yet another round of testing came back normal??? I know my mom doesn't want anything to be wrong with me, but I can't stand when she says "well, really it's a good thing that everything is normal"...I always just get a little scared that something big is being missed and maybe it's not killing me now but I'll die at 55 from a tired body. OH and that reminds me (to vent a little more) one doc actually told me that since over 2 years have passed and I haven't died, whatever I have must not be that serious...I'm really not even paraphrasing that one - I can't make that craziness up! ehhh....Good luck to everyone who's dealing with the issue of lots of unanswered questions - hang in there and don't let people make you think it's in your head! Health care is too freaking expensive to be faking sick!


Super Moderator
Hi Rach, welcome. Don't doctors drive you crazy sometimes? That's sick how the doctor told you it's not serious because you haven't died. I've had doctors say some awful things to me but nothing quite that bad. I hope you get some answers and a diagnosis soon - 2 years is too long to be so ill! I've been ill for one year and it's been the worst year of my life. It just sucks being so sick and not having any answers.

In case anyone is wondering, I'm still in the Undiagnosed Club - got my pill cam results back today, and they're totally normal. Sooo, I'm still undiagnosed and even more frustrated than ever! I'm trying not to get too depressed about it, and I've got an appointment with my GI on Monday, so I'll talk with him then about what the next step is. He's been tentatively treating me for Crohn's anyway - he tried me on pred and now he's got me on a 3 month run of Entocort, so at least I have some meds while we figure out what to do next. It's really really frustrating, though. I just wish I had answers.
Hi Everyone! I am new over here as I just found this great forum. I'm reading about everyone's frustrations with "normal" test results of all sorts and can't help but relate, story of my life. I've had periods of fatigue and low grade fevers starting early high school (I'm now 26) which have passed and for a short time after that I felt healthy and assumed I was fine and chalked everything up to puberty (back then I went to the docs and all tests were normal ofcourse). Come late 2004 and I get into a not too serious car accident. Think nothing of it but do get some moderate back pain that has not gone away since but has eased up a lot. Other than that was fine. Fast forward a month or so later I catch a cold after walking home from a friend's birthday party on a cold night. This is where my whole life turns upside down. I knew something was wrong with me as I never felt that way before but haven't imagined it would be come so systemic. After this cold/flu virus I kept getting muscle twitches, body aches, terrible headaches, fatigue. I had difficulties breathing too and thought I was developing asthma. I went to scores of different doctors/specialists who did all the blood work and ofcourse everything was fine. No stomach symptoms yet. Come mid 2005 I start feeling some random light burning pain in my mid left abdominal area. Just assumed I had an irritated stomach and decided to ignore the feeling. After that I started getting consistent pains slightly higher this time, right in what seems like the gallbladder area. So went for ultrasounds, upper endoscopy, all normal. Again, did blood work, all normal. So on and off for 6 years now I have been experiencing these burning sensations in my stomach and feeling fatigued, but somehow most of those episodes resolved themselves quickly and I resumed with my life. Come this year where around february I got a really bad eye inflammation. My eyes are just bloodshot everyday. Went to 2 eye doctors since, latter one said my retinas have some surface damage consistent with chronic allergies and prescribed some tears and steroid drops. Those seem to help a bit but when I stop the redness and pain just kills me. Then come early June and I start feeling shakiness around lunch time, as if Im hypoglycemic. Eating would not help the situation, I would just get progressively dizzier as the day went. Went to the doc, did tests, all fine. Around July went on vacation to Italy. It was a tiresome trip as we had to do a lot of walking and waking up early as we were with a tour group. I was feeling weak there all the time. Thats when I started feeling some stomach pains but in the upper part, the actual stomach/liver area what feels like. When I got back to the States I started feeling even worse - mostly really bad headaches with eye pressure and redness. Went to a neuro and got brain and neck MRIs done, as well as blood work for inflammation markers, autoimmune dx's, thyroid, etc. All normal, incl MRIs. A couple weeks after this I really started feeling the stomach, but again more in the upper area...Finally went to a GI and he did an upper endoscopy (w/ biopsy per my urging), and ultrasound. He said everything looked clear but I have not received the biopsy result yet, have an appointment in a week. I asked him for biopsy of small intestine so that he could rule out Celiac as over the years I thought that my stomach pains would get worse after eating wheat. Right now there is a serious spasm and that familiar burning feeling in my stomach I've been having for some time now, but now with an even worse fatigue. It's really hard being at work right now and at some point a month ago I could barely function. I also have a loss of appetite, nausea, and just very bad general fatigue and muscle aches. I'm going back to my GI and will most definitely schedule a colonoscopy and whatever else is needed. My family is sick of me going to so many doctors and I feel guilty too because I've been told its all in my head since like age 15 when I started having bouts of fatigure. I have no faith in any tests to come as I know that most likely they will come back clear too, and in a sense I hope they do but in a different sense I wanna narrow down my issues and know whats wrong so I can tackle it. Sorry for such a long post, I've just been feeling so crappy in the last few months, not sure what to think of it.


Super Moderator
Hi Birka and :welcome:

Your history sounds eerily familiar not just because so many here seem to take an absolute age to be diagnosed and have normal after normal result but my daughters symptoms were very much like yours. Upper epigastric pain, sore eyes, headaches, joint pain, fatigue etc. These plagued her for nigh on 18 months and nothing could be found wrong with her. It's good to hear you will be going for a colonoscopy and in view of the fact that all your upper gastro results appear normal it may well be emanating from lower down. Roo's problems all stemmed from her terminal ileum even though right up until a week before her surgery nothing even looked like indicating that.

As you can see from this thread there are many here that feel your frustration and disappointment to the point that even your sanity and motives are brought into question. This is a safe and friendly place where you will find understanding, friendship, support, information and humour. Please stick around and keep us posted on how you are going and if you have any questions just fire away. Good luck with your tests and welcome aboard!

Take care, :hug:

PS. In Roo's case it took surgery to diagnose her but once she did she was able to gain remission and has now been so for 4 years. There is light at the end of the tunnel! :)
Did they only find the CD when they opperated on Roo? If so how did they explain why all the tests were negative? Did she have all the normal tests done?
Sorry, lots of questions! I'm just interested in how the docs and tests miss CD so often! Am seeing my GI in a week and am wondering where to go next...


Super Moderator
Hi Sam,

Roo didn't have all the normal tests, she has never had a colonoscopy, pill cam or endoscopy. I think her age coupled with her symptoms never lead anyone to believe she had IBD. Her symptoms only became regular about 6 months out from diagnosis and frequent within about 2 months and by frequent I mean about once a week. She never had diarrhoea or bleeding and all her pain was literally around her stomach coupled most of the time with vomiting, headaches and sore eyes. This lead her diagnosis of Abdominal Migraine. She did have weight loss. Right up until the night before surgery all her blood results returned normal, except when they did pancreatic enzymes, including CRP and ESR, stool specimens were normal, urine specimens normal.

About 10 days before surgery she had a fall at school about 2 days later her pain changed to her right kidney region and down her back. It became extreme and we took her to the doctor and he ordered an ultrasound of her kidney. Of course everyone thought it was related to the fall even though she didn't hurt herself at the time. The ultrasound indicated she may have a UPJ obstruction because the pelvis of the kidney was so swollen, it also showed fluid in the pouch of douglas that they put down to a burst ovarian follicle when I asked about it. That was followed up by a nuclear scan which showed slowing in the emptying of the kidney but no structural abnormalities. That night her pain became extreme generalised abdo pain and the doctor came during the night and gave her morphine and in the morning we took her to hospital.

They couldn't find anything obvious so the casualty doc did pancreatic enzymes, just on spec, and they returned a very high reading and they thought they had hit on it and admitted her for Pancreatitis. The next day those levels were back to normal again. She was kept on NBM and morphine and things seemed to settle again and she was sent for a CT scan with IV and barium contrast and that came back completely normal so she was discharged. Within a day the pain was back and over the next four days along with the pain she developed vomiting and a fever so back to the hospital and this time the bloods showed she was septic. They took her to theatre thinking they would do an appendectomy and laparotomy but when they opened her up her bowel was perforated and infarcted and in the surgeons - words it was an absolute mess with pus everywhere. So she ended up with a Right Hemicolectomy, removing 60cms of bowel. The surgeon told me when he spoke to me in recovery that it was Crohns.

Obviously the fluid in the pouch of douglas was pus all along. I don't know if her high pain threshold masked symptoms but I really think it did, she just didn't present as ill as she really was. The whole time pre op her pain was never above 7, she just didn't complain and I know part of it was she didn't want to be a bother. It breaks my heart to think back on it.

As to the normal test results, well they couldn't explain that but the one that really stumped them and they couldn't get a handle on was the CT scan. They could not believe that it was normal and within a week they opened her up and saw what they did. I guess the only explanation is they weren't able to fully visualise the terminal ileum. It wasn't until the day before she went into hospital the second time that a distant relation rang and told me she had Crohns and it took them 4 years to diagnose her. I started to google and things fell into place. At least when I saw the surgeon and paediatrician the next day I was armed with enough info to say to them - she is not leaving until you prove to me it isn't Crohns!

Sorry for the long post!!! :eek:

Dusty. :)
Don't apologise for a long post Dusty! What an awful way to find out about having CD :( and it must have been so hard for you watching your child go through so much at such a young age. I am so glad she's doing well now
I still find it so hard to believe that they didn't see any problems with the tests they initially did.
Thanks for all the info
This is a great thread Cat... Thanks for starting it. I to have not been diagnosed and have been sick with D, nausea, lose of weight, fatique since october 2009. I have all the testing done and all came back negative. The only thing I have not had done is pill cam. I have never even heard of that until the forum..lol
I am also tired of being sick all the time. I have made a few changes on my own being that I can not get a doctor to listen to me. I now follow a diet which is made per my blood type. I have to tell you that it has made a big difference....


Super Moderator
Rosemary, I didn't know you were part of our club too - I had read the thread about how you and your daughter are trying to get some answers for little Madasin, but I didn't realize you were affected by illness yourself. Sorry you had to join our little club, I hope both you and Madasin are able to get some answers and relief very soon!

I recently had the pill cam, by the way, so if you decide to do that and have any questions, feel free to ask me about it. It was pretty easy, the prep was the worst part. I had to drink 1/2 colonoscopy prep the night before - yuck! Unfortunately, the pill cam came back normal too and I'm still in the undiagnosed club myself.

I'm curious about the blood type diet you mentioned - I've never heard of anything like that before, not even here on the forum. Would you care to tell us more about that? I'm blood type O positive in case you are able to give me any pointers! :)
Hi Cat

Yes I have had problems since Oct 2009. but I am not worried about myself. I am only worried about Maddie (she is the concern to me and Kelley). I have given up on going to the doctors for myself. They do not listen and make me feel like it is all in my head.
I sent you a message with information on the diets. I am type AB and after reading what it says it makes a lot of sense to me. I have made many changes according to this chart and it has helped out alot. I have even been feeling better. We will see if it continues to help or not.

For anyone who is interested in reading about your diet according to blood type the link is :http://www.drlam.com/blood_type_diet/

I am not promoting this or saying this will help anyone. All I am saying is it seems to be helping me.
And I thought I was the only un diagnosed one here. Im sorry to say im not happy too see more since we dont know fully whats going on with our bodys. I send out my prayers and love to all of you out there and hope we all find the answers soon. Id be part of the 5 year undiagnosed club lol


Super Moderator
5 years and no answers, that's awful! Welcome to the club, Beer Guy, although we hope you graduate from the club soon and get some answers and some relief!
lol yea like 5 or more years. They never want to do a lower GI always the upper. Been diagnosed with gastritis a few times. They say I have swelling right at the bottom of my gut. Well this time im going to make them do a lower. I believe I got all this from accutain but my mother has IBD and a rare GI condition where her food wont digest.
hang in there guys! i went through the same thing for about 4 years and was misdiagnosed with everything from a heart condition to early menopause (AGH!). some clues to the great doc i finally found were the repeated dramatic drop in my vit B-12 and D levels (which landed me in the hospital a few times because they thought i was going to have a heart attack or stroke) coupled with the constant pain in my left side - which was always dismissed as "normal monthly cramps" even after i had a hysterectomy 2 1/2 years ago. the pill cam was the clincher as it showed a clear picture of the giant ulcers in my ileum.

i wish the best to all of you - don't give up!
I am new as of today....greetings all! :sign0144:

I didn't think it was appropriate to tell my story yet, and I'm glad I found this thread. I have not been diagnosed, and my first appointment with the GI is tomorrow. However in a nutshell, I have dealt with IBS for years, I don't have my gallbladder, I have been violently ill for two months, my primary care suspected Crohn's, and my symptoms mirror gastroduodenual CD from what I have been reading. I don't know what to expect really as I only know one person with Crohn's but she lives about 1,500 miles from me. Because of my issues with my gallbladder, I read about other things like PCS and sphincter of oddi dysfunction but it's just not what I'm experiencing.

Oh, I saw someone said something about costochondritis. Why would one get it, say, in their chest/rib cage? I'm curious now!
Hi, I'm Nikki... 28 year old... recently diagnosed with gastritis, erosive esophagitis & GERD, hiatal hernia, and inflammation in duodenum/terminal ileum/colon which was just called IBD (not specified beyond that). Sooo I consider myself "undiagnosed" because I haven't been told anything other than general "IBD".

I was diagnosed with IBS in late 2007 but had unintentional weight loss, severe fatigue, occasional fevers, and bleeding so now I think it was/is something other than that. I eventually started feeling better, but in November or December of 2009 I started feeling crappy again. My symptoms from the past 10 months are two pages long, and I've had tons of tests for all different things, and they FINALLY found something other than a little odd blood work when I got an upper endoscopy and colonoscopy two weeks ago.

I am with a lot of you - I felt so bad for so long but felt like no one believed me, and got exhausted trying to convince people so it became hard to be pushy and advocate for myself. I also have a history of depression and anxiety, so a lot of times my complaints were poo-poo'd and blamed on the anxiety - which made me even more frustrated and wanting to give up all together.

The GI put me on Lialda for two months, and then we are going to decide what's next.. maybe more Lialda, maybe stopping the med if I feel better, maybe pill cam... he also gave me Zegerid for the esophagitis/gastritis/GERD. No prednisone, which I was on a few months ago on a trial basis and made me feel a LOT better.

But I'm still in horrible pain on my right side and don't have anything for it :(
Oh and I also have joint & muscle pain - so now I'm wondering if I should go to a rheumy or an immunologist next - maybe they can help with a CD or more specific diagnoses?


Super Moderator
Melanie: Welcome, and please do tell your story in the "My Story" forum so that everyone can get to know you! Good luck at your GI appointment, let us know how it goes.

Nikki: I get joint & muscle pain as well - mostly the joint pain is in the larger joints, like hips & knees. It's always much worse when I'm in a flare. I remember reading in another thread that this is common with IBD, and that the inflammation can sort of "spill over" into other areas of the body like the joints and inflame them as well. Sorry to hear you are in pain and are getting no relief - I also experience lower right-side pain and haven't been given anything for that. I'm currently on Entocort and that's been helping with my symptoms, although I still do experience pain/d/etc if I overdo it or if I eat something I shouldn't (am currently experiencing a little of both - I overdid it on Saturday, cleaned the whole house and did 4 loads of laundry, and then ate something I shouldn't have on Sunday - definitely paying for that today!). And I also had a positive reaction when I was on prednisone, although like you I was only on it for a trial basis. You may want to ask your doctor about Entocort - it's similar to pred, but it only affects part of the intestines rather than the whole body, so there are far fewer side effects and it's safe to be on it for a longer amount of time. I've been on it for about a month now and it's been working pretty well so far.
Cat - Thanks for the good info on Entocort, I appreciate it. Will definitely talk to my doctor about it. My joint pain is worst in my hips and knees too, but also seems to affect my lower back.

I hope you get a diagnosis soon!


Super Moderator
Nikki: Yeah, I get lower back pain too, especially during a flare. Fortunately I've got a massage therapist who makes house calls (and since he's also a family friend, he gives me a discount too!). Massages are one of the few things I do splurge on, definitely worth the money.

I hope you get a proper diagnosis soon too - at least you know you've got some form of IBD. I know I have something autoimmune that is probably in the IBD family, as I respond to both prednisone and Entocort, but since my doctor has yet to see any actual evidence of illness in any of the tests I've had, it's still impossible to say what exactly I've got or even to say for sure if it's an IBD.
It sucks being undiagnosed, feel I am in total limbo! Finally got my Gastro appointment 2 weeks ago but feel no further along, heard nothing about the colonoscopy, follow up appointment or my blood results which I asked to be sent to me. Just so unwell now, my life has changed so much from even 6 weeks ago :(
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I'm sure most people feel this way, but it's what scares me the most...I don't remember what it's like to be symptom free: no abdo pain, no back pain, not crazy tired, no nausea/dizziness. Even when I take pain killers or anti-nausea, I still don't have the 'what it's like to feel normal' feelings because I get the wooziness from the meds. If only I knew what was making this my new normal...
So i all ready said hi in the other forum but i figured id put my story here. I am 22 years old and december 19th i was taken to the hospital with severe abdominal pain,nausea and vomiting. doc said its just my gall bladder and left it at that. I kept having these attacks until august,where i found i had an inflammation in my small intestine and was kept two days to find out i had an infection or so i thought. the flagyl and ciprofloxin had me symptom free until last week(thats about 2 months) where i had another attack right before my gi appointment...this last week i had a barium x-ray and they told me no obvious signs of crohn's that it is probably an irritable colon...What the hell!?
Sorry to hear that you are having so much uncertainty...... I will say that it took the better part of 2 years and no less than 3 different hospitals and 5-6 different doctors to finally diagnose me....

I was treated for parasites, colitis, ulcers, everything.........

Finally I was admitted to a hospital and a G.I. saw me that was famillier with Crohns and he diagnosed me....

If you think you may have chrohns, then try to find a GI who has experience to check you out. I have had GI's tell me that every GI has their own certain specialty and so it wouldn't hurt to ask if there is someone available that is more famillier with what you think you may have...
Wow, I really though my story was unique. I am saddened to see that so many people are having to deal with uncertainty also. Thanks, Cat, for starting this thread!

Just want to share a quick summary of what's happened to me recently....

I was dx with CD 22 years ago at age 10. 3 weeks ago I had a colonoscopy (one of many) because I've been in relentless pain and practically living in my bathroom.
When I woke up I was in complete shock from what my GI specialist said. She believes I have been misdiagnosed all these years and I that I have UC and need my entire colon removed!?!
She's sending me up to Mt Sinai to get a second opinion - which I have scheduled for tomorrow. I still can't believe it...

Thanks for reading! Good luck to everyone here. I hope you get a definitive answer soon!
Having a colonoscopy date I know I could be diagnosed in a few weeks. I welcome this with mixed feelings because I have always thought a diagnosis would be wonderful- and it will, it's just hitting home what that'll mean. You know, like with more medication (which I welcome if it'll give me my life back) and stuff, and Mum will start fussing, when I have had to work really hard to stop the nosy questions, which I did and then had no life, so nothing to ask, so that is all going to come back again, and again I have to work really hard to stop it. I know Mum's are supposed to fuss but mine goes past what is reasonable and sees nothing wrong with it (I am 23 and she would ask every single month on your period? how's your period? stopped your period?, this went on until last year when I finally snapped!).

Having said this the lifting of the stress I and my family are under will be worth anything that will follow after, and the fact that I should get mt life back, at least part of it. Having been the same for 3 years and then worse for 1 I can't wait!

I'm in a slightly different position I know as IBD been confirmed with the WBC scan (even if Gastro trying to cover their mistake told me they were 90% sure it was IBS, er duh, you do not get active inflammation with IBS! The WBC scan found inflammation in my bowel and blood CRP has been raised every single time it was tested over the last 4 years) so basically I know they will find it again and tell me it's Crohn's, just a case when, so from visual with scope, biopsy with scope or MRI follow through which is planned if scope all normal.

I have the scope date but no follow up appointment yet, so may well be a case I am limbo again for a while, as I have learnt positive tests do not equal a call in!
I think I could have put that alot better- I have been focusing so much on the postive side of being diagnosed, I have not given much thought to the negative, which is why now I can't seem to get past the negative!


Super Moderator
hey cat a tonic have you ever thought of getting tested for addisons disease?
Yes, I've had several tests for Addison's including the ACTH test, and all the results have come back in the low range of normal. Both my GI and GP agree that normal is normal, even if it's a bit low, so both have said that I do not have Addison's.
Hi I def belong here right now lol. I am 25 years old. I am new here and with no diagnosis am looking for some advice. Since the beginning of 2008 I have had horrible stomach problems. It starts usually at night with nausea, abd pain and vomiting. The first occurance I had a lot of bloody diarrhea and lost a lot weight. They ended up taking out my gallbladder due to it not working anymore, no stones were ever found though, just sludge. I thought after that I was fixed!...wrong! Ever since then about every 3-6 months I go through the same symptoms. Pain, nausea, vomiting, a lot of watery diarrhea sometimes bloody. I had a colonoscopy and endoscopy which showed multiple bloody striations or gastritis through my stomach with a lot of bile. My CT's always show inflammation in my small intestine and WBC are always high (21-23). Neg h-pylori, celiac test and stool cx. I also have occasional nausea and right lower abd pain on a daily basis. I was wanting to see if anyone else had similair situations. My GI thought it was crohns but now is unsure. He said to just come back if still having symptoms. It gets really old fast though because I never know when I'm going to get sick. If crohns is dx in the small intestine, is that only seen through a pill cam? I had never heard of the pill cam before and wonder if I should request this since the CT's always show the inflammation in there and my WBCs are always so high during these times. Any advice?!? Thanks!


Super Moderator
Hi Ash, welcome. To answer your pill cam questions: I've had the pill cam myself, although unfortunately it still wasn't able to see anything out of the ordinary so I am still undiagnosed. Colonoscopy can see your entire colon and a little bit into the far end of your small intestine, and upper GI endoscopy can see your esophagus, stomach, and a bit of the beginning of your small intestine. But there's a ton of small intestine that these scopes cannot see, and that's the point of the pill cam. Ideally (assuming your stomach empties at a normal rate and it doesn't get stuck anywhere along the way), the pill cam sees your entire small intestine, and the battery usually dies around the area where the colonoscopy can see. So it's a useful tool to see what's going on, although it can't take biopsies or anything like that.

If you do have disease in the small intestine, then a pill cam would be a good test to have. You might have to specifically ask your doc for it - it's not done very commonly. I believe the reason for that is because it creates a lot of work for your doctor - instead of just looking at scope or scan results, they have to look at each image taken by the pill camera, which can take hours. I believe when I had mine done they said the images are assembled into a "movie" of sorts, which takes about 3 to 4 hours to watch. Most doctors are very busy and don't have a lot of extra hours in the day with which they can sit down and watch a 4 hour movie of one person's digestive tract, so a lot of docs aren't too keen on ordering the pill cam to be done. But if you feel like it might shed some light on your illness, I would say definitely ask for it! Good luck, if you do the pill cam let us know how it goes, and I hope you get some answers and some relief soon.


Super Moderator
Oh, and one more thing, Ash. If your doc seems to be blowing you off, as you seemed to indicate, please seek a second opinion from a doc who takes your symptoms more seriously.
Ash, with those symptoms a "wait and see" approach is totally unacceptable. I'd see another Doctor and soon. Scream and shout and make a nuisance of yourself until you get the help you need!
I would think about a change doctor or ask to see again and have a constructive yet firm discussion
. It is NOT normal to have bloody diarrhoea and not acceptable for a wait and see approach in my humble opinion. I have had the pill cam which is how I was diagnosed (after having having my gallbladder out...no stones)...it cannot take biopsies though which has created some issues for me as I had an area with multiple nodules as well - may also be crohns ..may not.
I Find out on monday if need to go for double balloon enteroscopy which is an endoscopy of the entire small bowel and can take biopsies..takes 2 hours though so I have resisted so far...long story really and don't want to bore you so won't go into it.
Sounds like you need a pill cam. Pain free unless gets stuck ( only if have stricture so may do small bowel follow through first...mine was delayed in nodular area for 3 hours but got through eventually thank goodness) but you need them to tell you what is causing your bleeding and what is causing your inflammation seen on scan. Until they tell you those things you should not be satisfied.


Hello Everyone! Some of you know my story, but I wanted to add it to the undiagnosed club.

My name is Alisa, and I have had symptoms of an IBD for about 6 years now, starting at 15. My stomach would feel like it was ripping to shreds, and my parents just thought I was faking it or going crazy. Because of that I pretty much just ignored it. A few months later I went to the doctor, and she said, "oh, it must be acid reflux"...um, ok. Took the pills, nothing happened, went back. She realized she hadn't let me finish my symptoms, and then referred me to a GI. I was scared, so I didn't go. I went back to her at 17 to get some immunizations for college, and she asked about the GI stuff, and when I told her I didn't go, she freaked. She told me it is probably either crohns or colon cancer, and if I didn't go, it would get worse.

So I went, lol. The GI didn't even touch me, told me I had IBS, and gave me a prescription. He told me to come back in a month to see how it worked. When I came back, I explained that it didn't help much, and that my throat would close up on it. He called me a liar, said it must had been the flu. I told him I would not take it anymore, so he scoffed at me and wrote other RX. I never filled it and I didn't go back.

I lived with the symptoms for several years, knowing it could be something worse, but I didn't think anyone would listen. I hid it from all of my significant others, friends, and family.

Last January I ended up in the hospital from ab pain. It ended up being a ruptured ovarian cyst, with another one along side of it. It was detected by a CT scan, so my husband (BF at the time) said "you must not have crohns then, if the CT didn't show it!". 6 months later the abdomen pain came back full force, and I went to an urgent care to see if it was another ovarian cyst (I am on BC, so it was almost impossible that it was). He said it must be, gave me some antinausea meds and off I went. I ended up in two different ERs within a week because they kept telling me I wasnt dying and to go see a regular doctor (the pain was so bad, that I thought it needed to be taken care of THEN). The second ER diagnosed me with a abdominal hernia. I went to a surgeon later that week, and he found a hernia, but on a completely different area of my stomach than where I was in pain. I didn't understand, it wasn't even where the ER doc had poked me. I had hernia surgery (8 days before my wedding ~.~), and the rest I had from that made the other pain go away. So I assumed it was a hernia for so many years (which doesn't make any sense) and went on.

Last September the pain came back full force. I lost 12 pounds in one week, and I wouldn't eat for days. My husband was moving to Germany at the time (without me, I was in school, he is an officer in the US Army), and I was under a lot of stress. I went to my GI a week later, and he said this wasn't IBS, that I had an IBD or colon cancer. I was so glad someone was finally listening! When my husband found out, I was told to come to Germany to be with him while I got this sorted out. So within a week I was on a flight to Germany.

Since then I have had a colonoscopy and upper endoscopy (dec 10th), but the Army takes its sweet time to get things done. The GI who did my colonoscopy told me he saw nothing, but the army still hasn't released the biopsy results to see if it is microscopic. I had a doctors appointment yesterday (because the results were suppose to be in), and she said the next step, if the biopsies come back negative, is to either follow the GI's recommendations or go to a military hospital 4 hours away for a second opinion. I asked about the pill cam, and she said they wont do that, only exploratory surgery. I also asked for a "trial run" of crohns meds, and she refused that as well. She says I need to be on tramadol to keep the pain down until they diagnose me with something.

I think this is only located in my small intestine, because I have almost every symptom but the D multiple times a day, and I have seen that if it isn't in your large intestine, the D isn't as bad. I do however, have terrible inconsistency in my BMs. Mostly constipation, but D when I eat something that aggravates my condition. And when I do have it, it takes hours to get it to go away. Other symptoms I have is bad ab pain (about an 8 on the 1-10 pain scale) that is in a certain spot, lots of mucus in my stool, mouth ulcers, lots of gas, joint pain and muscle aches, fatigue, hair loss, hemmroids, and nausea. I'm probably forgetting something too, lol.

At this point, I just want answers. I am worried about the exploratory surgery, but if gets me a diagnosis, then I will deal with it. This disease, whatever it is, has pretty much taken my life from me. I went from a workaholic to a very slow individual, and I can't wait for that to change.

If anyone here wants to vent, at any time, my PM box is always open. I know exactly what all of you are going through!
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Hi alien wonder,
Sounds to me that pillcam would be better than exploratory surgery as they cannot see insde your bowel with a laparoscope...though apparently they can see fat wrapping around the intestine-would they see small early ulcers...I would ask that question before I let them do surgery.
Have you had a small bowel follow through. I would go for the second opinion if it were me...but thats just my opinion..having been through the whole thing myself.


I agree. When she said no pill cam I was very confused. But either way, if the result from the german off-base GI come back completely normal they are having me get a second opinion from the military hospital 4 hours away. I almost want to go there and refuse to leave until they give me some answers. ~.~ They seem to think I can wait forever to get this diagnosis; at home in the states I would have had many more options in GI's and opinions, and they would have been faster. But the Army thought this was the better solution.

I am definitely going to ask about the small bowel follow through! I don't want them to cut me open if it isn't going to find anything!
There are lots of small bowel investigations available that avoid the surgical route though some only done in specialist centres...you can be referred to these. It may be worth doing some investigation and seeing if the hospital you are being referred to is able to do a pillcam or can refer you for one.
Nearly all can do SBFT and you need this prior to pillcam anyway to make sure no stricture.
There is also MRI enteroclysis of the small bowel which could be used but only some centres can do this and then double balloon enteroscopy-this is only done in 2 centres in england-sheffield and london.
Thanks everyone for your advice. I will def make an appt and figure out what we can do next. I just hate going to the doc. I grew up in a family that if you weren't dieing...then you should suck it up. Even though during these "flare-ups", I do feel like I am. I am even a nurse lol but I know I need to take care of myself and get some answers.
Hi everyone! I hope someone will have a familiar story for me. I am 16 years old and have had abdominal pain, bloody stools, diarrhea, weakness, sores in mouth, swollen lips and tongue, weight loss and no appetite for the past year or so. On my mom's side her sister has one of the worse cases of Crohn's the doctors at Hopkins said they have ever seen and her 2 brothers have ulcerative colitis. The past few months all of my symptoms have gotten so much worse. I went to a GI and he did stool samples and blood tests and they came back normal. Then he did an endoscopy and colonoscopy which came back normal. Then he did another stool sample to test for parasites and it came back negative. Then he did a cat scan which again came back normal. He diagnosed me with IBS and put me on dicyclomine which doesn't do anything. I feel like since they don't have any proof they don't believe me. It's really frustrating... Please help :)
I want to point out to everyone complaining of joint pain that there are also several autoimmune inflammatory arthritis conditions that are comormid for IBD conditions. I happen to have one myself- a codiagnosis of Psoriatic Arthritis/Undifferentiated Spondyloarthropothy. RA, Ankylosing Spondylitis, Reactive Arthritis and I'm sure others also have links to UC, Crohn's and others. It's worth visiting a rheumatologist if you're experiencing chronic joint pain. My joint pain affects quite literally every joint, but is worst in my low spine, sacroiliac joints, hips and hands.

Because of my arthritis diagnosis, I'm fiiinally dragging myself back to my GI doc. I was diagnosed with IBS in '08 and began experiencing symptoms in '06 or '07. My colonoscopy and upper endoscopy in '08 only found my hiatal hernia. Since that supposedly ruled out Crohn's, UC and Celiac Sprue, I got the fun diagnosis of exclusion. I thought that was that, and when fiber and probiotics did nothing for me, I just figured this was my "normal". When I'd visit my GI, he would just suggest I get back on probiotics and call it a day. I stopped bothering to pay the copay to be told to do ineffective OTC treatments.

Now that my rheumatologist is highly suspicious that I have some worse condition, I'm more confident in pushing for more tests. I had a small bowel follow thru last week, but they couldn't see much because my intestines dip very low in my pelvis and I guess there were too many layers of intestines over what they wanted to look at. It also took 5 hours for me to pass the contrast and I think the radiologist was getting antsy to be done with it.

I have a flexible sigmoidoscopy on Thursday to biopsy for microscopic colitis. I also hoepfully will do a pill cam soon to look for Crohn's in my small bowel. My GI is very skeptical that it's anything besides IBS because I used to occilate between constipation/diarrhea and am now just 10+ painful bowel movements everyday, some D, most loosely formed. He thinks I wouldn't have had constipation with any of these more serious conditions, but I see that symptom listed constantly by folks in this forum? I don't know. We'll see if the tests show anything this time. His receptionist kind of laughed at me about my IBS, "Oh, we ALL have IBS here. This job is stressful!" Okay? I have crippling gastro pain everyday even when I don't have a care in the world. But thanks?


I feel for you lorraine. I was diagnosed with IBS in 08 as well, but I have always had a hunch it was something more. And I am the same as you in the D department....switching from constipation to D, now all loose stools and sometimes bad D (maybe once a day? sometimes twice). From my research, if the disease is limited to just your small bowel, you wont have D as much because the large intestine can function more normally than other IBD patients. But because it is in your small intestine, your body can't absorb the nutrients it needs. I hope your next test gives you the answers you are looking for!
Hi! I guess this is my club too. :(

I am a 28 and have been suffering of weirdness since the fall of 2009. Probably before that as well but it wasn't severe enough to warrant a doctors call. You can read my story in 'Your Story' the tread is called "Undiagnosed and Super Frustrated".

At this point I am trying to live my life fully and deal with the pain. I am busy working Mom, I travel a lot for work and pleasure, I am active and social.....this agony, discomfort and fear has really gotten in the way of all of that.

I have an appt with the GI Doc on March 29th who will then set up a colonoscopy (if you read my story you will see I already missed one but it is entirely my fault... :( ). I am hoping I will have a diagnosis and some answers by Spring but things move slowly here.

I am having a lot of trouble dealing with how much all of this effects my day to day life and I don't even know for sure yet. I am gearing up mentally for the worst case cause I am warning you all now I will not take it well!! I am trying to accept that they will tell me I have Crohn's now so it will be less of a shock if they do.

I am terrified.


Super Moderator
Hi Bliss, welcome to the club. I know the feeling of being frustrated and just trying to live life as usual! I don't have kids but I do work full-time and try to travel and try to have fun with my family & friends, etc. And your story is all too common around here, with being given the "you've got IBS, eat more fiber and avoid stress" line. It seems like most GPs don't even know this (I've had to explain this to a few docs myself) but with IBS you do not get things like weight loss, blood in stool, dehydration, or nocturnal diarrhea. So if you've experienced even one of those, it is NOT IBS. It sounds like your level of pain is above and beyond what IBS would be, too.

I hope you get some answers when you have your GI appointment. Are they not able to get you in any sooner? I would call them frequently and see if they've had any cancellations sooner. One thing that I have discovered is that crying on the phone really works! I called around March or April of last year to schedule my colonoscopy, and they told me the soonest they could get me in was June. I tried to wait it out, but after a few weeks I couldn't deal with the pain and I called back in tears, asking if they could bump me up. The receptionist was snippy, but after I asked to speak with the nurse I got some sympathy and she bumped me up to the following week. So if you really are struggling, call back and don't hold back your tears! Let them know how miserable you are (and make sure to speak with the nurse or doctor instead of the receptionist, they have more authority to bump you up.) Good luck!
So many years...I've had all the tests done and all are normal except for consistantly abnormal bloodwork. Some Drs. have told me it's IBS, some say an IBD and some even say it's in my head - so easy to believe now I'm so deeply depressed. I am very shy on public forums but would love to talk to someone who can relate, so would really appreciate any personal messages.
I have been in this exact situation for 14+ years now. I can't eat at all without being extremely ill and in excruciating pain and I have been labeled Anorexic and basically dumped on the scrap heap. Its just one long nightmare. :yrolleyes:

Medical professionals can be absolute bullies, they have bullied and intimidated me for years and I have been sectioned and force fed with food that has repeatedly just made me ill.

I have also been left to completely starve for months on end, because the medical profession has refused to prescribe me Elemental Drinks, which are the only things I can tolerate. I'm very lucky to still be alive. Rather than give me drinks I need, they would allow me to starve to death, it is pure cruelty and hell on earth, the sheer irony of it all amazes me, these are supposed to be people in a "caring" profession. :ymad:

It feels like you are banging your head against a brick wall. Awful. :mad2:

It is diabolical that conditions like this get ignored and told they are in our heads the GPs want an easy answer and unless the answer is sitting there staring them in the face, we imagine it. Disgusting. It makes me so very angry. How many others like us must be out there? :thumbdown:

Stay strong and never be intimidated and stay alive.

Big Hugs everyone! :ghug:


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Not all medical professionals are uncaring bullies supercell , though it sounds like you have had/ are having a nightmare.
Have they managed to diagnose you or are you still in the undiagnosed club? I know what you mean about people thinking you are anorexic - they don't understand how hideous it is to eat and then have pain and feel so nauseous or vomit- that it's just better not to eat in the first place. Once you have a diagnosis they accept it- but why couldn't they before? I suppose it is a bit weird really. I'm looking forward to the day I look forward to enjoy food- as no doubt you are.
Thank you littlemissh for your lovely message,

Unfortunately I am still very much in the undiagnosed club :(

I had my appointment with my GI yesterday. I must admit, it was more than a little disappointing. In short "They Can't Help Me."

It was a total farce of an appointment. I was prescribed a loads of laxatives and chemicals which I have previously tried and which previously had no effect of my digestive problems. Then I was sent away. Tests have showed nothing is wrong with my Colon you see.

I then saw my GP yesterday afternoon and relayed to events to him. He promptly decided to say something, which frankly scares me to death:

"Heidi, this is you causing all your problems, this is all in your head. You must get over it. Eat, or you will die."

What good is that? If it is me causing this, I haven't a clue in hell how I'm doing it to myself!

Now, more waiting. I have to wait till 10th March to see my useless psychiatrist (who cannot help me, because I am not mentally ill) in order to get a referral to a psychologist, who maybe can help me.

Could a chronic anxiety and an Eating phobia, really cause someone to physically make themselves so ill, they cannot eat food without excruciating pain and horrific IBS?

My biggest fear is that my GP will stop prescribing me the Elemental Drinks. I will starve to death if he does. He wants me to be working towards getting off them, how long will he give me? Panic!!!

Could I really be doing this to myself?

Oh like you littlemissh, I am desperate to eat, really really desperate. I miss what is was like before all this hell. I'm sure you do as well, it makes me envious to see others taking for granted such a little thing as eating, they don't know how lucky they are.

I feel bad for looking at others like that its not their fault they can eat, but I don't seem to be able to stop feeling like that. I hope one day very soon that we can all on this site, be just like them and just eat, without a care in the world.

You can probably tell by the tone of my email, I'm pretty beaten down at the moment, but I'll pick myself up again, I'm sure. Just take a bit of self coaching I think!

January 28/11 was 6 years for me. 4 scopes (2 each way), 2 small-bowel follow-throughs, MRI, regular CT scan, blood work every flare, many stool samples checking for bacterial infections... all negative. I have been waiting for over a year for an urgent CT Enterography.

My symptoms when I am flaring include vomiting, nausea, fever, dizzyness, overall weakness, mucus-y diarrhea, urgency, diarrhea of 4-12 times a day (sometimes i can't even stomach fluids), diarrhea during the night, lower right hand side of tummy that feels on fire, bloody diarrhea, and loss of appetite.

The longest I've ever gone was 5 1/2 months without a flareup which was June - November 2010, and that was because I put myself on a very strict IBD diet of nearly eliminating red meat and veggies.

I got relief on the typical meds for an IBD: the combo of Cipro and Flagyl, or Prednisone (ESPECIALLY Prednisone). Nothing else gives relief of the symptoms or pain.

Hi everyone! I am happy to inform you that after the last round of tests I have been officially diagnosed with Crohn's colitis. I had a loop ileostomy in Dec and am eating well again. Now I'm working on getting out of the house more often. It's funny how you can become so complacent with a certain way of life. Now that I'm doing better I don't know what do to with myself!

I am saddened to read all your stories of what you're going through right now. I was there for a while myself. These past 5 years especially. From doctor to doctor. Some making me feel like it was all in my head! Some just throwing drugs at me that didn't help and sometimes made it worse. But I knew it wasn't in my head and I knew there had to be another treatment option. So I didn't give up (although I was quite close a few times) and found a GI that actually listens and genuinely cares. They really are out there believe it or not. Don't give up!!



Super Moderator
Num1: Waiting a year for an "urgent" CT? That's awful! It's good that you respond to pred though, because then you can rule out certain things (such as IBS!). Just a thought, have you ever been checked for Addison's disease? Apparently it can include symptoms that are similar to IBD (diarrhea, dizziness, abdominal pain, etc) and it also responds to pred. When I found out that I respond to pred, my GI thought I might have Addison's because of the fact that all my tests have come back normal (which would make sense for Addison's because there wouldn't be inflammation or anything like that going on - it's a problem with the adrenal glands). So I had a couple blood tests for Addisons but they came back normal for me. Just a thought since it sounds like you've been through every IBD test there is too. Apparently Addison's is pretty rare so a lot of doctors don't think to test for it.

Amy: Congrats on finally getting diagnosed! Sounds like you had a long rough road to get to a diagnosis, good for you for not giving up. Enjoy your newfound ability to leave the house! :)
Num1: Waiting a year for an "urgent" CT? That's awful! It's good that you respond to pred though, because then you can rule out certain things (such as IBS!). Just a thought, have you ever been checked for Addison's disease? Apparently it can include symptoms that are similar to IBD (diarrhea, dizziness, abdominal pain, etc) and it also responds to pred. When I found out that I respond to pred, my GI thought I might have Addison's because of the fact that all my tests have come back normal (which would make sense for Addison's because there wouldn't be inflammation or anything like that going on - it's a problem with the adrenal glands). So I had a couple blood tests for Addisons but they came back normal for me. Just a thought since it sounds like you've been through every IBD test there is too. Apparently Addison's is pretty rare so a lot of doctors don't think to test for it.

No I haven't been tested for Addison's, but when my good family doctor returns to Canada I will mention it to her... can't hurt.
Read my "OMG!!" thread post for my latest battle as an undiagnosed sufferer :/. I created an extra thread because I didn't want to bombard this one...


Chief Dandelion Picker
Num1, I'm so sorry to hear what you're going through. Here's my concern: the 1 year wait. I also live on the prairies. My wait time for an emergency CT was 4-5 days. I am not sure if emergency is considered a different category from urgent, but I have to wonder if the note to give you some degree of priority was removed from your paperwork. I could see 4 months, but not a year. Have you checked to ensure that the paperwork is still in the system? Really hope things work out for you.
Num1, I'm so sorry to hear what you're going through. Here's my concern: the 1 year wait. I also live on the prairies. My wait time for an emergency CT was 4-5 days. I am not sure if emergency is considered a different category from urgent, but I have to wonder if the note to give you some degree of priority was removed from your paperwork. I could see 4 months, but not a year. Have you checked to ensure that the paperwork is still in the system? Really hope things work out for you.
I've gotten actual CTs immediately if I've needed. but this CTE is through my GI in Saskatoon. He has called twice trying to get it sped up without any luck. When I called the Client Representative for that region she tried to find out where I was on the list and the lady couldn't even find me in the next 3 weeks (that was back in november yet). Its just stupid!

I made a typo, it was 5 yrs now not 6 but that is bad enough :/.


Waiting for tests suck :(

I am still well into this club. I have a new GI, someone at the military hospital 3.5 hours away from my house. I have seen him once and it was a great appointment, but it doesn't look like I will get a diagnosis though. He says since all the tests have come back normal in the past few months that he wants to stop testing and try and treat me for severe IBS. He says he hates the term IBS, because its a garbage bag term basically saying they don't know whats wrong with you. He doesn't want to put me through any more tests because of the stress and lack of results. He did do a blood test, one to test for celiac disease and another to test for inflammation and anemia, but he thinks they will all come back normal.

He did ask several times if my family has history of colon cancer, and he is concerned that it is a possibility of what I have. I had a colonoscopy, wouldn't that show cancer? *shrug* I did research and my great grandparents did have colon cancer. My father's side has a lot of digestive issues, like diverticulitis and stomach ulcers, but they have ruled both of those out.

He says he will not give me crohn's meds to see if I respond to them, because he says that it is malpractice. He also is considering taking me off the tramadol, saying that me being on these heavy pain meds for so long is also malpractice. I really hope he doesn't...my pain is so bad, I need these meds to function. Its the only thing that helps right now.

My current plan is to try and get a colonoscopy with this GI before he goes to a new duty station. He says that I'm not crazy, something is seriously wrong, and that we need to work together to make my life livable again. I hope to get a diagnosis out of his concern, but I have my doubts.

How do you guys deal with not having a diagnosis? I just wish I could have a break. Just a little time where I feel normal again. I can take pain meds, but then I feel loopy. I used to be busy all the time, but now the fatigue has taken over and I am the laziest person ever. Being undiagnosed means minimum help from doctors, and no meds to help...how can I feel normal again? Is it even possible?
allieinwonder: Your story is so similar to mine. They first thought colon cancer but that was ruled out with colonoscopies - I had grandparents with colon cancer also. They will not treat me with anything either, saying that if I were to respond to a medication it would only be temporary and still not give answers as to what my problem is. Basically it would be a temporary measure to cover up the real issue. Some Drs have pointed out that I have too many other things going on for it to be simply IBS, but that's all I have to go by at this point. So my life seems to be permanently on hold and I have stopped the constant repeating of tests to cut the stress on both me and my family. However the depression that comes with dealing with this day after day continues, so I know where you're coming from. I am trying to accept I'll never feel 'normal' again and just struggling to work with what I have - sorry I can't offer more than that. Seems like we're in the same boat. I hope you get answers soon.


Yeah, the part of trying to realize I wont ever feel normal again is probably the worst part. My husband is very frustrated at my illness, and the fact that we have no answers. I have been pretty bad this week, and he has a four-day weekend this weekend, and he is very upset that we aren't out exploring Europe. The pressure to try and be normal again from him is overwhelming.

I know at some point I will get a diagnosis, but I think at this point it will be awhile from now. My GI also thinks this has to be more than IBS because of all my crippling symptoms, but he can't find it. I'm afraid I will just have to keep on going until it gets worse and they look again in an emergency situation. I think its very sad that this happens to people like us..I wish there was a way the medical community could make this easier for us so that we can lead normal lives and not have to live for years in agony, pain and stress.

I know a lot of people on this forum got their diagnosis from persistence..but I persist, and I get my tests, yet they still come back normal. I can't tell my body to show the disease to the tests...I wish I could!! This invisible illness is a PITA!


Super Moderator
Sounds like we've got a theme going here. My maternal grandfather also had (and died of) colon cancer. Before I had my colonoscopy, my GI assured me that it would be "very rare" to find colon cancer in someone as young as I am (I'm 31 now, was 30 when I had the scope). So my doc never thought cancer was a possibility, and of course they found nothing in my scope.

Same old and Allie, I know it seems right now like you will never feel "normal" or even human again, but please know that it's possible - even while still undiagnosed! You know me, I'm undiagnosed, and I've been on Entocort since October (my GI just wrote out another script for 3 more months of Ento, woo hoo) and it's changed my life. Before I was on this med, I felt like how you two describe - stressed, depressed, in pain and having symptoms every day, barely able to function. My GI decided that even without a diagnosis, Entocort is mild enough for me to take for awhile so that I can have a few months of feeling human again before we dive back into diagnostic testing.

Allie, how awful that your new doc wants to take away your pain pills! But it sounds like he does understand that you're legitimately ill and that he wants to get you a diagnosis. I guess if it were me, I'd let him do a few tests, but make sure I keep my prescription active with the doctor who wrote it for me and go back to that doc if the new doc does try to take away the pain pills. Do you have a scope scheduled with the new doc? If so, let us know how it goes. Make sure he takes lots of biopsies!
have you got room for another ?

I've had trouble for most of my life.

It started when I was in my early teens.
I would get awful belly cramps, the runs & vomit at the drop of a hat.

They slapped me in for tests & told me they couldn't find anything.

In 1974 I started going to an Internal Med. Doc. when I got the worst case of bloody diarrhea, complete with body aches & weight loss.

I was in the loo 24/7
he sent me for a lower GI & they made me prep with castor oil.
Talk about spraying gasoline on a fire.

The dx was colitis, so I was on mega doses of prednisone, lomotil & Metamucil.

I had awful burning from the prednisone after a few months & got sent for an upper GI, that showed a big fat ulcer.
So, I stopped the pred. ( just as well, as it was making me a bag of nerves. )

At that time a friend started force feeding me yogurt & I'll be damned if that didn't help.

The dragon dozed for a few years, but has returned with a few evil companions to make life miserable.

I was still using the same Doc. & had a really good relationship with him.
He suggested a trip to a Gastro.

It took 6 months to get in, but I thought relief was in sight.

The first thing he did was a colonscopy, & for some odd reason, he couldn't knock me out.
He actually grumped & acted like it was my fault that I wasn't falling asleep.
After I reminded him it was him pumping the med into my arm & not vice versa, he said now what do we do ?

I told him if he thought I was going to prep again, he was nuts & told him to just get on with it.

3 days later, he did an endoscope & showed me a raw spot the size of a saucer & said he had no idea what it was.

At that point my belly was full ( yes the pun is intended !) of this pompous Gastro & I was so mad I told him it was Dr.s like him that buried their mistakes as I was storming out of his office.

Bright & early the next morning my phone rings & it's the Gastro telling me that I should have a hida test to check the function of my gallbladder.

He said there was a shortage of the hormone they needed for the test & it would take months to get it.

The next day, he calls & said he found some & would book the test for me.

Fortunately for all parties involved, he doesn't do that test.

I had to go back to him 1 last time for the test results.
I know it was just so he could hit my insurance 1 last time.

he told me to go home & ring my Surgeon & make plans to have my gallbladder removed asap as it was only working @ 7%

Instead, I called my Primary & he said under no circumstances should the gallbladder come out as it would get the colitis riled up again.

I've had several gallbladder scans done since then & they all show no stones.

I even went to a Surgeon last July & he told me to leave it in.

This has happened to me 5 times in my life with the runs, lrq pain , joint probs, incredible weight loss ( this time 1/3 of my body weight ) & it's getting old.

Sadly, my Primary has retired & I've had to find a new one.
She knows I'm not well & has been doing everything to get me feeling better.

I have tried everything.
Sue suggested a return trip to the Gastro & I refused to go back to him.
I did a search for a new Gastro in my area & came up with a brilliant Doc. according to my Primary.

He said @ my first visit that the symptoms are wrong for this being gallbladder & when I mentioned my concerns about my credibility he said he knew I was in pain & was going to do everything in his power to get me better.

You have no idea how refreshing it is to walk into the first appt. with a new Doc. to find he actually read your medical records dating back to 1974 before you got there.

So far he's done upper & lower scopes with loads of biopsies & the upper Gi with small bowel follow through.

Just had all my bloodwork done on Tuesday, so waiting for results.

The first thing he suggested was Chrohns, but he wants the hida test repeated just to make sure.

Sorry for the length of this post, but this has been going on for decades.
I got called into my GI next week (8 days notice) following my Barium meal, so hoping this means a diagnosis is on the cards... I cannot see a test was normal it's IBS/ let's do more tests outcome coming so quickly....


Super Moderator
StarGirrrl, have you heard anything yet? Fingers crossed for you! Wishing you lots of luck and hoping for a diagnosis for you!


Super Moderator
Good luck on Thursday! Please let us know if you find anything out. Will be thinking of you and hoping for a diagnosis! You've been waiting a long time for one and certainly deserve some answers and some relief already.


I had a doctors appointment today too StarrrrGirl...well...I've been rediagnosed with severe IBS. He is calling it "functional bowel disease". He says that since all my tests are coming back perfect that there is just no other explanation for it....I never had my small bowel checked, but he refuses to do anymore tests. I was put on amitriptyline for it, which is an antidepressant. He says the only way he will do more tests is if my symptoms change in any way.

I guess I am out of this club for now, and I guess out of this forum kind of. :( I still think its an IBD hiding where they haven't looked, but I have run into a wall. At this point I just want my quality of life back, so if the meds work...I'll be happy! It seems like IBS would be a lot less painful and life-changing than this. Well, people make it seem to be anyway. Ugh!!! At this point I think the only way I will get an IBD diagnosis is if I end up in much worse shape at the emergency room.
Hey guys!

Woke up at 2 am this morning only to dash to the bathroom..... and stay there till 3. lol.
I'm seriously thinking of installing a tv on the floor of my bathroom :)
I have an upper GI scheduled for Monday. Yippee!
I don't really want crohn's but I have to say I'm really sick of people telling me there's nothing wrong with me. I'M NOT FINE!!! However if they don't find anything with this round of tests I think I may give up. I'm sick and tired of being sick and tired.

Allie! I'm on amitriptyline for "IBS" as well. I haven't really noticed that it's helping my symptoms much but boy it sure does help me sleep . Side affect can be constipation which can help if you're dealing with the big bad D.

Shout out to a fellow Saskatchewanian num1habsfan!!

Best of luck to everyone, Sorry about the rant. Just needed to let it out :)


I'm sorry you had an interruption in your sleep!

Yeah, my GI did tell me it would help me sleep as well. Just hoping it works the magic he says it will, but I have my doubts.

Good luck with your upper GI on Monday!
Hi ailenwonder, I was prescribed amitryptiline too at the start of this 4 year journey, and it did work and work fairly well for around 2-3 years. I got my appetite back and could actually keep meals in although of course I did still have some attacks. I was very sceptical about it too. It probably stopped working because I do have IBD, after all I think the blood results and WBC scan have confirmed that.
They probably explained it's not to treat depression as such but to relax the bowel. Is there any chance you could find money for private small bowel tests? I think it's just awful they are refusing to test there :(
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Thanks for the input Star. He did explain it isn't being used as an antidepressant, I actually don't know why I put that in my original post, lol. Even if I can afford it I really have no options in who to go to until I go back to the US. The GI I found is great, and I actually drive 3.5 hours one way to see him, and he is the only person I can see here. If I tried to go private with someone else it would be someone German, which would be a huge hassle with the language barrier. I'm going to try this, hope it works, and if it doesn't my GI will try another medication. The reasons he said he wouldn't test my small bowel is because 90% of IBD patients have the IBD in places that a colonoscopy looks at, including the terminal ileum, and since I didn't have it there he doesn't want to risk more tests. Basically he doesn't want to keep putting time and money into a case where it is much less likely that he will find something. My blood tests came back perfect, which is also why he is stopping. I will definitely persist with more tests if this doesn't work or if my symptoms get worse.


Super Moderator
I see the Undiagnosed club has turned into the Amitriptyline club - and I'm part of that club, too! I've been on 25 mg of Amitrip for about 4 months now. It helps me sleep and it controls the chronic headaches that I got as a side effect of Entocort, but I don't know if it has actually done anything for my guts or not. I have noticed that it sometimes constipates me but it doesn't necessarily seem to calm things down in my bowels.

Allie, please don't feel like you have to leave the club or the forum. We're happy to have you around - don't feel like just because you've been told it's IBS that you have to leave. You're clearly still struggling and we'd love to continue to support you through your journey.

Highland Anne, welcome to the forum and the club! Good luck at your upper endoscopy on Monday and I hope it can provide you with some answers! And I know what you mean about wanting to install a TV in the bathroom. We're eventually going to remodel our bathroom, and one of the things on my wish list is a small flat-screen TV on a swivel mount so that I can watch it from either the toilet or the tub. :D
How is everyone doing? BFT was fine and GI even got a second opinion on it, which he is now doing on colonoscopy biopsies.
I have a pill cam on the 22nd and soooo hoping this gives me answers, but trying not to get my hopes up too much. It is exciting and scary all at the same time.
My CRP has finally gone up to 36 which is worrying as it's been stable at 22-25 for 4 years, but in a way pleased it's finally reflecting the changes as i've been alot iller these past 6 months. It was 22 one week and 36 the next and I tell myself surely the pill cam will see this and what my WBC scan found last year (I was hoping for a repeat of that since it's the only abnormal test so far but they vetoed it as an uneccessary radiation exposure).
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Super Moderator
Well, I've been finally diagnosed with something, although not IBD. I've got mild arthritis in my right hip. I'm awaiting blood test results as my doc said he's not sure if it's autoimmune-related or not. I know that joint problems, especially things like hips & knees, are comon with IBD, so I'm thinking this is another piece of the diagnostic puzzle. Depending on the results of the blood work, my GP is probably going to refer me to a rheumatologist. That'll probably take months to get an appointment, though. In the meantime, I'm still on Entocort until May. I see my GI in May and he's going to (probably) take me off the Ento and then we'll start scheduling the next round of tests. I know that an MR-Enterography is in my future and probably also SBFT since I haven't had that one either yet.

Star, best of luck on the 22nd with the pill cam! I really hope it finds some answers for you! Keep us posted whenever you do get the results back (it usually takes awhile to get the results back - when I had mine, they said it can take up to a month for the results because the doctor has to look at all the images, which can take some time).
Cat a tonic, I am very pleased you're finally making a bit of head way with your diagnosis. Its a scandal you've had to wait this long to get something! I really hope you get the results you want from the blood tests.

Thinking of you

Hurrah Cat! Yay. Seems very odd to be ceblebrating this but I know you will be too ;)
Let's hope this is the beginning of the end of your life in the undiagnosed club. Fingers crossed for you :)


Super Moderator
Thanks, all! It's nice to know I'm at least not totally crazy, ha ha. My GP even sent me a letter saying that I've got arthritis, I'm tempted to frame it. ;)

The funny part is, my hip had been hurting for days when I made the GP appointment. By the time I got to see my GP the following week, my hip felt fine, so I was sure the x-rays wouldn't show anything. Kind of a weirdly pleasant shock to be told it found arthritis! Not that I want to have arthritis, but it's nice to have a test result actually find something for once. :)


This sounds weird to say Cat, but congrats! :) I really hope you are on the road to get out of this club.

Well, I have been on the amitriptiline for 3 weeks now, and I'm not seeing any difference. I'm actually at the point where I am having D every time I go to the bathroom, on top of the urges, so more than ten times a day. My husband keeps asking me to call my GI and let him know, but he asked me to wait a month, and he already plans on increasing the dose. I still feel like this isn't IBS though. I hate that I got shoved back there when they didn't test my small intestine other than the colonoscopy. On top of it this med seems to make me have vivid dreams, and no matter how long I sleep I feel like I am pulling all nighters. I'm going to try a sleep-aid tonight, even though I know I might get the opposite affect.

I know this is off topic, but my husband is in a airborne US army unit and he had a jump last week and ended up with a concussion. He is suppose to be in bed for the next two weeks at least...greeeaaat. We are both broken now. :(


Super Moderator
Allie, I know exactly what you mean! Both my hubby & I are broken now too! I don't know if you saw my other thread, but my hubby's been having some LRQ pain off and on and sometimes when he gets this pain, vomiting and nausea also occur. Last night, he got this pain worse than he ever had before - he described it as being 8 out of 10, and hubby has a pretty high pain tolerance, so that was worrying to me that he put the number of his pain so high. Plus he had tons of vomiting too. So after the vomiting started, we decided it was time for him to go to the ER. We were there most of the night, but he did get diagnosed. Hubby's got kidney stones, one small one and one rather large one. Ouch! I've never had those myself (knock on wood) but I've heard from others on here that it's super painful. I'm glad he's got something that's relatively easy to treat, though - with his LRQ pain and vomiting, I was afraid it was his appendix.

Back on subject. I sometimes get vivid dreams on Amitriptyline too. I am sure it's not doing anything to calm my bowels. It's doing what I wanted it to do, though, which is control the Entocort headaches, so I can't complain too much.


I am so sorry Cat! I agree with Mayflower, at least its treatable (which is the same thing i keep telling myself about my husband). My husband keeps going back to work and he keeps showing back up at home with another soldier saying he is too sick, so now I have done my research and I am keeping him in bed with the shutters closed, and he is not happy, but its says he needs the rest to help his brain heal. He is usually the caregiver of me and now I am the caregiver of him!

Thats good that the headaches are lessoned by the amitryptiline!