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Help....the doctors cant

Hi
I have for 11 year suffered with stomach ache, to the point i have diareea and faint having to be held on the toilet by whoever is available. When this happens I cant cope with the pain I will be in and out of consciousness and not sure where I am but can still feel the pains in my stomach and get really hot to the point of sweating. This has on many occasions ended up with an ambulance being called.
The doctors for 11 years have said this is ibs however after a colonoscopy on Monday they seem to think this maybe Crohns I just wondered if this is a normal symptom of this? Can anyone please help as I dont trust the docs after 11 years of them not knowing.
 
Hey cthomas...I can understand how you feel...I went 11 years without a diagnosis...other than IBS...

As far as the symptoms you are experiencing, I often feel weak when in a flare, and often get sweaty when I have a tummy ache as well...so that is normal...as far as Crohn's goes, for me, however, the in and out of conscoiusness worries me...especially the many ambulance trips. What do your docs say about that>
 
I hope you are seeing a Gastroenterologist. You need to see someone with lots of experience. Do not waste your time with anyone who has not diagnosed after all that time.

I hope you can get some relief. I could not tolerate that kind of symptoms for very long.

Dan
 
I agree with Dan see a GI, if you are seeing a GI get a second opinion. I hope they figure out what is going on soon. Good Luck
 
ah pasing out due to the pain does not sound like it can be good at all. definitly, definitly find a good GI.
i also sweat a lot when im in pain, which usually ends up being worst during a bm, and ive gotten slightly delirous before, but fainting needs serious attention in my opinion!
i really hope you get some answers soon
 
GO SEE YOUR GI or GET ANOTHER ONE!! GET TWO IF NEED BE...but the fainting is not good..You may be wayyyyyyyyyyyyyyyyyyyyyy too malnourished....I was borderline going toxic with my fistulas and infections...get yourself in to see someone my friend. You do not wanna be in that position for long.
 
Fainting

Hi

I did go to see a Gastroenterologist and they sent me for a colonoscopy on Monday he said he thought it was crohns but a the really bad faint only happen once every 6 months - 1 year i'm not sur i this is what it is. He said there was some inflammation and has taken samples from intestines to check but i just dont know. reading on this board it sounds like you guys are in pain most of the time, i have had no weight loss or any other symptoms only the pain which I can handle until I have the really serious episodes. my question is if this is crohns then why ha it taken 11 years to sort out. i have always been told ibs - does anyone has ibs or have these syptoms with that? I have tried dairy and wheat free diets nothing helped the docs seem to say its all diet related however i stick to the same food most of the time so surely if it was this i would get bad episodes regularly?? Just fed up of them not knwing.
 
I think that many people here have been told by doctors that they have IBS prior to being diagnosed with Crohn's. As I understand it, a syndrome is a group of symptom that have no apparent biological cause (which differentiates a syndrome from a disease). IBS is a general term for symptoms of irregular digestion and isn't actually "diagnosed". Thus, the symptoms for Crohn's and IBS may be very similar and if your doctors never performed the tests to confirm CD, they will tell you it is IBS, which is very common and often associated with stress.

The one question that my doctor asked me that led him to know that I had an IBD rather than IBS is "Do you wake during the night with pain/diarrhea, etc?" and when I told him that I did, he said that you will not generally wake up during the night with IBS and that led him to do the endoscopy and colonoscopy. The endoscopy showed nothing, but the colonoscopy confirmed Crohn's.

I find it interesting long it takes for many people to be diagnosed. When I was a teenager I saw a doctor due to constant stomach pains/ irregular bowel movements (bouts of D followed by C). I was told I had IBS and just dealt with it. It got better on its own. It wasn't until I was 30 years old that the symptoms returned but to a far worse degree That is when I was diagnosed with CD and it really only took about 4 months for this all to play out, so I feel rather fortunate. I guess my point is that sometimes all it takes is finding the right doc who asks the "magic" questions and the lightbulb goes off. My advice to anyone who thinks the may have an IBD is to DEMAND testing. If you do have an IBD, they will eventually find it.
 
Sounds about right

I have onyl woken in the night twice or three times in 11 years with this once requiring an ambulance due to fainting vomiting etc this was about 3 years ago other than that is is normally daytime only occasionally do I get really bad pains when I faint and do not really know ehere I am maybe once every year. The doc on Monday said it looks like crohns however i would have thought this would have flared up to the point of them knowing this long before now over an 11 year period? Anyone thoughts? I'm just scared aftr reading tuff on various site of cancer and the pain you guys are in suppose i'm looking for some reassurance?!
 
Well, it sure does sound like you have something going on there. What tests have you had done in the past 11 years? Have they done a colonoscopy before now? Barium x-rays? What about blood tests? I do know that blood tests can be deceiving...my initial tests showed elevated white cell count, but I have had many normal results since then even when I am in the middle of a flare, so I hope your doctor isn't basing his opinion on blood tests alone?
 
I have had more blood tests than i care to remember i also have had on occasions a raised white blood cell count that was about 5/6 years ago. I have bleeding when I have my really bad episodes clots of blood come out so they checked for hemeroids with a camera but none found so that was dismissed. I have had xrays in hospital when i have had bad episodes and been taken in but nothing found and nothing on those blood tests either. Then the colonoscopy on Monday thats all really. I'm just so scared.
 
Actually IBS has changed drastically over the years. We now know part of the mechanism for it. IBS is two part.

First, insufficient seratonin in the nerves around the intestines (which hold ~75% of your body's seratonin) cause the nerves to become hypersensitive. People with IBS have feeling in their intestines. Normal people do not. This is why IBS and especially crohn's and IBS combo are so extremely painful.

Second, a normal person's body increases peristalsis (intestinal movement) when triggered by food in the very first part of the intestines just outside of the stomach. The standard level and the increased level are consistant rythms and the transition between speeds is smooth and gradual. In IBS this mechanism is damaged (possibly due to the malfunctioning nerves) and the intestines convulse wildly in response to the food leaving the stomach. I've seen where they've placed a muscle tension measuring device in someone that produced something much akin to an EKG. The out of control patterns it makes on the line graph are pretty impressive whereas a normal person's quite a bit like a normal EKG with consistant peaks and troughs.

When not being stimulated by that mechanism IBS patients can have very little peristalsis and thus they end up with constipation. They can also have peristalsis that is far too strong when it is supposed to be in a calm mode and forces the food through too quickly resulting in diarrhea.

IBS can be tested for and confirmed with scientific tests now and treatment with anti-convulsants and seratonin boosters is approved for IBS and has scientific basis for how it works. It's just that most doctors haven't read a medical journal since they got out of school 30 years ago and even as much as 10 years ago no one knew any of this because there's been very little effort to research it.
 
Update

I receive a letter this morning to go to a different hospital to see the specalist again not in the normal band of the 3 hospitals in the trust so not sure why. Just wondered when anyone else was diagnosed did you just receive a letter stating this or did you need another appointment to discuss. Just worried they have found something alot worst.
Can anyone help??
 
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