Mild crohns... no remission

[arikz]

crohns... no remission

Hi guys,

I was diagnosed 8 years ago. First off I was getting major stomach pains, vomiting and so on. Never got any diarrhoea or bowel probs. I had crohns with inflammation of the stomach and intestine.

These issues carried on until about 3-4 years ago when the symptoms “evolved”, they found a lot of strictures in my small bowel due scarring and inflammation. Since then I’ve been getting cramping pain and vomiting. And the vomiting is now associated with the strictures and not the stomach.

I’ve been taking imuran for 7 years and took pentasa early on but not anymore and been recently prescribed entocort. Personally I don’t think I’ve ever been in remission *sighs*

I can eat certain foods sparsely without causing pain, but most times I can’t eat anything without causing cramps and vomiting. Only time I’ve gained weight was with liquid supplements, which seemed to work well, but taste like crap when it’s your sole source of nutrition.

I’m 6ft and only 8st. Getting really peed off cus it’s my 25th bday this year and no sign of remission after so many years. My stomach still inflamed after all this time and now with these strictures.

Does anyone have crohns where the symptoms are only pain and vomiting with no diarrhea issues??
Also does anyone feel they can’t get into remission???

 

[glum chump]

Hi Arikz

Welcome to the forum---you've been in pain for a long time! Yes, supplements can get quite tiresome after a while.

I don't have the same symptoms as you (pain and vomiting)---I have pain, diarrhea, and strictures. But i hear you around not feeling like remission is anywhere close. In the last 11 years, I've had remission for about 14 months and otherwise, its been moderate to severe flare.

The vomiting from strictures is a huge concern because it can signal to potential obstructions and blockages. There are other people on the forum with more experience with blockages who can give you better advice on that then I can.

Has your doctor recommended any of the biologics to you (Remicade, Humira, etc.)? Were you on Prednisone before Entocort?

Feel free to browse around the forum---there's a huge wealth of information and knowledge from the forum users.

Take good care,

Kismet

 

[silveyk]

*UK Chum w/ Crohn's*

I am not sure whether NHS will allow this, but you should ask if you can try an anti-TNF-alpha (TNF = tumor necrosis factor) medication like Humira or Remicade. For some people, this works amazingly well. Unfortunately, my spouse who has had Crohn's for 2 years has not done well on Humira. She may be changing to Remicade shortly. Quite frankly, we have been so frustrated with the lact of effectiveness with most treatments, that we've considered flying out of the country to try helminthic (worm) therapy (no joke).

Dr. S

 

[Grumbletum]

Hi Arikz
I was quite struck by the similarity in our stories, although my symptoms started a bit later than yours. My problems started with severe lower stomach pain and vomiting so I thought I had a stomach bug ( but had the added complication of recurrent UTIs. ) I don't get D much - my biggest symptom at the moment is pain and gurgling after I eat. Some foods do give me more pain and/or D - caffeine, anything sugary.
I'm still waiting for barium test results but have been told that I have narrowing in the lower bowel.
Don't really know what to say as this is all so new to me at the moment. I'm only 5ft, but have lost weight too, but 6ft and 8 stone - that is really skinny :-(
Stick around. There are lots of people here with more experience who'll be able to make some suggestions.
Helen x

 

[arikz]

thanks for the responses. i have discussed remicade with my dr. the issue was that the remicade mite cause the scarring to become permenent. havent tried preds.

i have been lookin into hook/whip worm . i think you can receive the treatment in the uk. it is something that is of great interest to me

 

[arikz]

Hi Arikz
I was quite struck by the similarity in our stories, although my symptoms started a bit later than yours. My problems started with severe lower stomach pain and vomiting so I thought I had a stomach bug ( but had the added complication of recurrent UTIs. ) I don't get D much - my biggest symptom at the moment is pain and gurgling after I eat. Some foods do give me more pain and/or D - caffeine, anything sugary.
I'm still waiting for barium test results but have been told that I have narrowing in the lower bowel.
Don't really know what to say as this is all so new to me at the moment. I'm only 5ft, but have lost weight too, but 6ft and 8 stone - that is really skinny :-(
Stick around. There are lots of people here with more experience who'll be able to make some suggestions.
Helen x

hi helen, im pretty sure i have narrowing aswell.causing the food to be blocked. all it means is that your bowel is more narrow, probably cus of scarring. unforunatly i dont think the body can repair it but my doctors think its a mixture of scarring and infammation, therfore mayb the strictures will dissapear.

 

[Grumbletum]

Yes, I'm beginning to think I may have strictures. I had a Barium meal about a month ago and the radiologist confirmed the narrowing but I've still to hear back from my GP. I don't think a Barium follow through will show if it's inflammation and/or scar tissue?

 

[xJillx]

Hi arikz and welcome! I am so sorry you haven't been in remission over your 8 years. Have you considered a second opinion? It seems like you need a new approach and, mostly likely, treatment. I truly hope you find something soon that will let you get the relief you deserve.

 

[Jer's Girl]

Welcome to the forum Arikz. I don't really have any advice for you, I just wanted to say hi, and I hope you are (finally) in remission soon! It took me 14 years, but I am finally in my first remission ever! I am not completely symptom free, but it is not an all-consuming daily battle right now, and I am grateful for what I have! It can happen for you too!

 

[arikz]

thanks guys. im definately looking for a new approach, thats why i joined up, to get info etc.

 

[ameslouise]

Hi Arizk and welcome!

As you take a peek around the forum you will see how many people don't have diahrea, even though this is commonly referred to as the "main" Crohn's symptom. This disease is different for every one!

I hope you find something that works for you. Good luck. - Amy