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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Still no closer to a diagnosis :(


10-06-2016, 06:21 AM   #1
kittyp
 
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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
10-06-2016, 06:42 AM   #2
scottsma
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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.
10-06-2016, 06:59 AM   #3
ronroush7
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Hi Kitty. I would consider getting a second opinion. Keep us updated.
10-06-2016, 11:22 AM   #4
kittyp
 
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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

10-06-2016, 11:55 AM   #5
scottsma
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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,
10-07-2016, 12:29 PM   #6
kittyp
 
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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.

10-07-2016, 12:45 PM   #7
ronroush7
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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.

10-08-2016, 04:35 AM   #8
scottsma
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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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