Advice from (not so) sunny UK

[surreymummy]

Hi
I'm new to all this forum thing so not sure where to start. Brief background, I'm 31 years old diagnosed 11 years ago with Crohns. Have been in remission a lot but the last few flares have bit "unconventional". Currently flaring at the moment and spent 5 of the last 7 days in hospital on high steroids and being fed via a ng tube in to my stomach.
I know the classis symptoms of Crohns, but I'm starting to feel like a fraud. Last week I was still visiting the loo often and it wasn't formed, but now I would say it is of "normal" consistency and frequency. However the pain is something else. I am in constant pain, like a cramp that will never go away. Today I'm now too scared to eat (didn't eat for 8 days last week) as worried it's going to make it worse. I'm on steroids and anti spasmodics but feel like I'm not believed as not got the runs, not bleeding now and going to the loo properly. but surely constant pain is not normal?? Hospital did a CT scan which showed chronic inflammation joining the Colon and Ileum. I just need some piece of mind if anyone has suffered a similar flare - ie normalish toilet habits but incredible pain?
Sorry for the first long one

 

[cosmic dave]

Im sure i have heard of crohns patients that havnt got the runs before so i wouldnt worry about it. Put that energy into getting well.

2

 

[scottsma]

Please try to eat something or you will get worse (I know,impossible hahaha) I can't advise on your Crohns as I have U.C. but the BRAT DIET pops up a lot on the forum.Thats bananas,rice,apple sauce and toast.Also does your hospital have an I.B.D nurse that you can contact with things that worry you ?Your G.P will put you in touch and you will find her very helpful.I think the general concensus is that most GPs are clueless when it comes to IBD.Far too complex.Best Wishes and I hope you feel better soon.

 

[SarahD]

I have the same thing, my main symptom is pain and occasionally my BM's will be loose but rarely frequent. I don't think it's all that uncommon so please don't feel like a fraud. The evidence of inflammation is there on your scan so hopefully the doctors will believe you.

Like the others said, please try and get some food into you. If you really can't manage anything it might be worth asking your consultant about some sort of liquid diet, such as Fortisip or Fortijuice. Your body will heal best when it's properly nourished.

 

[Grumbletum]

Hi Surreymummy and a big welcome to the forum. I'm glad you found us. No you are definitely not a fraud! The runs was not a major problem for me either. Pain and bladder issues were my main problems. I lost lots of weight, but not because of diarrhea, it was I was in so much pain when I did eat and I think probably from malabsorption because of the inflammation.
From your treatment it sounds like the hospital are pretty sure you are not having them on. But I know what you mean. Crohn's is not known as an invisible disease for nothing and there are a vast variety of manifestations of the disease.
Hope you are feeling better very soon.