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09-17-2010, 10:58 AM   #1
Cat-a-Tonic
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Undiagnosed Club Support Group

About this Support Group

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!

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09-17-2010, 11:37 AM   #2
porter89xxx
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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.
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09-17-2010, 12:44 PM   #3
Mayflower537
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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?

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.
09-20-2010, 12:46 PM   #4
wolfem
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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.
09-20-2010, 01:15 PM   #5
Cat-a-Tonic
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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!
09-20-2010, 05:38 PM   #6
StarGirrrrl
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*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!
09-21-2010, 09:38 AM   #7
Cat-a-Tonic
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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!
09-22-2010, 07:54 AM   #8
bushydougie
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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
09-23-2010, 05:44 AM   #9
Cat-a-Tonic
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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?
09-23-2010, 05:50 AM   #10
StarGirrrrl
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^^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*)

09-23-2010, 05:56 AM   #11
Cat-a-Tonic
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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).

http://www.ibsgroup.org/diagnosis
09-23-2010, 06:02 AM   #12
StarGirrrrl
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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.

Last edited by StarGirrrrl; 09-23-2010 at 06:07 AM.
09-24-2010, 07:31 PM   #13
Lauren
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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!!
09-24-2010, 11:30 PM   #14
rayzorblade
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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.
09-25-2010, 05:37 PM   #15
Cat-a-Tonic
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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!
09-30-2010, 09:01 AM   #16
RachLG
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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!
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09-30-2010, 03:36 PM   #17
Cat-a-Tonic
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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.
10-03-2010, 12:06 AM   #18
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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.
10-03-2010, 01:18 AM   #19
DustyKat
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Hi Birka and

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,
Dusty

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!
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10-06-2010, 06:12 AM   #20
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Dusty,
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...
Thanks
Sam
10-06-2010, 07:54 AM   #21
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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!!!

Dusty.
10-07-2010, 01:30 PM   #22
bushydougie
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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
Sam
10-07-2010, 01:40 PM   #23
gypsigirl28
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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....
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10-07-2010, 03:01 PM   #24
Cat-a-Tonic
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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!
10-07-2010, 08:04 PM   #25
gypsigirl28
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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.
10-08-2010, 03:20 PM   #26
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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
10-08-2010, 03:32 PM   #27
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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!
10-08-2010, 04:59 PM   #28
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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.
10-08-2010, 05:27 PM   #29
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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!
10-24-2010, 07:24 PM   #30
Melanie610
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I am new as of today....greetings all!

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!
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