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Still no closer to a diagnosis :(

I've just come out of my colonoscopy and was told my MRI last week is all clear and there is no sign of any inflammation on the scope today.
I have had diarrhoea 8 times a day since August (many more times a day to start with), I have horrific pain and extreme tiredness. Its a struggle to do more than just get dressed and I'm barely leaving the house.

I can't go on like this, the consultant even seemed convinced that it was Crohn's and I'm on budenoside and Modulen. I had a ct a few weeks ago that showed thickening in my small bowel and a faecal calprotein that was over 700. I just don't know what to think now :(
 

scottsma

Well-known member
Location
Tynemouth,
Hello Kitty,It does sound like IBD but it would be wrong of me to diagnose you.Fecal calprotectin levels in the UK are classed as normal at 50-60,so it does seem that you have some inflammation.Don't get in a panic though,because a lot of people on the forum have levels exceeding 1,000. When my level was 400 last year,I was given a month's supply of prednisolone (steroid).As you're already on meds.give them time to work and wait for your colonoscopy results.It all takes time and trial and error.Feel better soon.
 
Thank you both so much. Just been sleeping all afternoon and have woken up with no abdominal pain at all, the first time in months. I don't know if it's the fentanyl still working or because I've not eaten for two days (or both) but now I want to not eat just to enjoy the feeling for a bit longer. My head is pounding though so I think I'll have to have some Modulen soon and no doubt start with the pain again 😞
Its just so hard knowing that I'm probably just insane after all the hope that I could get treatment and an improved quality of life
 

scottsma

Well-known member
Location
Tynemouth,
I certainly don't think you're insane,but this disease can make you believe that you are.

For a while I would stick to a bland diet...White rice,grilled/boiled chicken (no skin) toast,bananas and clear soup.No spice or grease.Give your digestion a rest for a few days and see if it helps.Don't expect to much to soon,
 
The dietician at the hospital put me on Modulen meal replacement so I've been having that exclusively (except for water) for 2 weeks nearly and the only relief I've had was last night and this morning after my colonoscopy so I'm guessing that's because it was truly empty in there, I went for many hours without having a bm too which was nice for a change.

I'm struggling so much today, I've not even been able to tell my mum that my mri didn't show anything (she's been here every day caring for me and even missed a holiday) as I feel like it just proves I'm crazy and I'm just wasting her time and a waste of space.

I genuinely don't know how to keep going like this with no diagnosis and no clue about how to get better.
It's been over 2 years that I've been ill, in that time I've lost friends and my boyfriend and I'm not sure how I'll go back to work if I carry on like this forever and I worked so hard to qualify for my job.

I know stress is the worst thing for health and I genuinely don't feel stressed I just feel sorry for myself today. I normally feel so unwell that I can't even feel anything else.

If I'm mad they should just lock me up and medicate me, I'm sure that would be kinder than leaving me to suffer.
 
You are definitely not mad. Keep pressing until you get answers. If you need to get a second opinion. There are others on this forum who are undiagnosed.
 

scottsma

Well-known member
Location
Tynemouth,
I agree with Ron,check out our UNDIAGNOSED thread.You'll be surprised how many people there are,struggling like you.And you'll feel a lot better knowing you're not alone,
 
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