Hello there

[russlac123]

Hi there, hope you are all remissing!
I am 29 male, have had colonoscopy and have just been diagnosed with ulcerative colitis, after 4 years. My endoscopy showed I have duodenitis as well, and I have upper abdominal pain and pass dark blood. Why is it not crohn's disease? How do the medics reach certain diagnosis? I do not trust the NHS in the UK and cannot afford private treatment.
I am finding so much conflicting advice about food and how do you face the rest of your life, with such a limited diet? I have found a medical paper seems to advise against caffeine and sulfites, and increase thiamin and resistant starch intake. It has helped to a degree but even some of these foods cause me upset, especially meat. I have tried mesalazine, sulfasalazine and prednisone, all did nothing accept aleviate my joint symptoms. What happens now? Im sick of this already, only had problems for four years

Thanks for listening, any help would be appreciated

 

[Regular Joe]

Hello russlac123,

Sorry I'm late in responding.

Welcome to the forum. I'm not familiar with duodenitis, but it sounds like a small intestine inflammation. Crohn's disease is complicated and difficult to diagnose. Also, from what I understand, upper GI Crohn's disease is considered one of the less common forms and locations, I believe the diagnosis is "Gastroduadinal CD". It's often incorrectly diagnosed with ulcer diseases, and usually isn't diagnosed as Crohn's until Crohn's symptoms develop lower in the GI tract.

It's just a hard form to catch and diagnose with the current methods because it is so uncommon (4%-5% of Crohn's disease cases). Even the most common forms of Crohn's are difficult to diagnose, because there are a number of different symptoms which include more than inflammation. Inflammation doesn't automatically mean there is Crohn's disease, but Crohn's disease will most always have inflammation as a symptom.

I have a friend with Ulcerative Colitis who, like you, passed dark blood. It caused him a discharge from the military. He's had luck with Lialda. But for him, remission hasn't lasted more than 6 months with flares maybe twice a year. Your treatment options are pretty similar to Crohn's disease, and you may find possible relief with immunomodulators like Imuran, or an anti-TNF antibody like remicade. With a little hope and a workable treatment regimen, you may be able to treat the duodenal problem at the same time.

Keep posting and let us know what regimens you've tried, how high the doses and for how long. There are many here that have tried a wide range of medicine. What works for one person doesn't always work for the next person.

We're here to help. Hang in and keep up hope.
Joseph

 

[DustyKat]

Hi russlac and :welcome:

So sorry I missed your post. :redface:

Joe is spot on with the difficulty in diagnosing Crohn's, even when it is in far more common locations diagnosis can take years. The inflammation in your duodenum would certainly account for your upper abdominal pain and most likely your passing of dark blood. Perhaps when it is as high up as that, they are more likely to turn to an infection as the cause in the first instance.

Sorry I can't be of more help to you. I'm glad you found us and please keep us posted on how you going.

Take care,
Dusty

 

[Sophia]

Hi,

I'm 27 and was hospitalised in October 2009 with what they thought was ulcerative colitis. My first colonoscopy and biopsies showed I had UC, and I thought this was my diagnose until January 2010 when I had my second colonoscopy and my doctor found that I had two separate segments of my colon that were inflamed. Per definition I therefore had Crohn's and not Ulcerative Colitis.

I never had dark blood, but I had red blood and mucus lumps which are typical for colon inflammation.

I've had an MRI of my small intestines and they showed no signs of inflammation. Have you had this done?

What diet are you on? I'm on a weird diet since 11th June - no sugar, no bread/flour/grains/gluten, no potatoes, no milk or cream (cheese is okay), and only one fruit a day diet. This basically means I eat salads, vegetables, berries, chicken, fish and nuts. It's limited and obviously not optimal, but it actually works. The visible blood is gone (only after 3-4 days) and my stool has changed from diarrhoea to normal after only a few days.

I know what you mean when you say that it's difficult to know that you have to lve a life with Crohn's and possibly on a diet and medication for the rest of your life. I think many of us share the frustration with you. But I must say that life is so much better for me right now than it was a few months ago, and only the small improvements makes us so happy and motivated, so just try to hang in there and find small positive things to hang on to in order to motivate yourself to stick to the diet, the meds and coping with the disease.

All the best,