Does anyone suffer with pbc and crohns dise... - PBC Foundation

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Does anyone suffer with pbc and crohns disease?

roseter profile image
7 Replies

I haven't been diagnosed yet with Crohns but it looks likely? I just wondered whether it was a likely duo as I have all the symptoms?

I have had pbc for 2/3 years.

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roseter profile image
roseter
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nomorepies profile image
nomorepies

Hi Roseter, I am very interested in your post as it is possible I have crohns too. Can you describe your symptoms, have you had a colonoscopy? I have flare ups of very loose stools and urge to get to the toilet. Has settled a bit since I had my gallbladder removed but stomach not good today, terrible pain and wind, also feeling as if I need to empty bowels but nothing comes. Sorry if this is a bit graphic. I had an aunt who had crohns - another autoimmune disease, Consultant thinks it is possible my dad had it too but was never diagnosed.

roseter profile image
roseter

I have had diarrhea for 9 months now and had various tests including a colonoscopy. The colon was fine but am due to have a camera down the top end. Really bad pains cramping and watery stool/mucus and blood. Also night sweats which I understand is another symptom plus extreme fatigue and generally run down. Nails splitting, hair loss etc. Are you the same?

Mcinnel2 profile image
Mcinnel2

Hello I was diagnosed with Crohn's disease 20 years ago and then Pbc 3 years ago. The two are totally separate and not linked but some of the symptoms mirror each other ie fatigue is found in both. To be sure you have crohns you are normally given an endoscopy (camera inserted in anus) and they take a small biopsy. It doesn't hurt (had 8 done) as you are sedative although can be a little embarrassing afterwards as you have lots of wind. If you do have Crohn's disease and PBC it's upsetting but like everything else you have to get on with it and you learn not to to be embarrassed about talking about symptoms. With Crohn's disease you can be in remission for years without a flare up and don't have to take tablets all the time like you do for pbc. Also crohns is well publicised and it seems like everyone knows a sufferer so in someways easier to live with than pbc. Good luck both of you x

Mcinnel2 profile image
Mcinnel2

Oops sorry I meant colonoscopy. Roseter in answer to your post I have also had a camera down the top end 3 times and it's ok. Re hair loss and broken nails I did suffer from this due to the fact when you have a flare up you don't have sufficient vitimins in your system. Have you had a blood test for vitimin d? I'm on supplements both d and folic acid and found this helped. I also take amitriptyline at night (small dose) that helps me sleep and stops me going to the loo 3/4 times a night which I use to do which obviously made me even more tired

roseter profile image
roseter in reply to Mcinnel2

Thanks so much for your response. I just wondered if they are connected but obviously not. My colon was completely clear but understand you can get it in the small intestine too. Bring on the remission!!

nomorepies profile image
nomorepies

I have flare ups of loose stool, also some mucous, griping pains but no blood. I get night sweats too but thought it was to do with menopause. Had a bad flare up in June on holiday was going to the loo up to 14 times a day. Bowel has settled a bit but stools now vary from semi solid to loose, sometimes when I feel I need to empty my bowels all that passes is clear mucous and extreme wind. There is no pattern to my bowel movements some days 2 times a day but it can be 3 times 4 times or 5, 6, or 7 times. Colonoscopy has been mentioned do you think I should have one, not keen.

Mcinnel2 profile image
Mcinnel2

Yes I would really recommend you have a colonoscopy. There is absolutely nothing to be scared of and it's painless and you won't even remember having it done. Day before you take senna tablets and some liquid to clean out your Bowles, then next day you have Colonoscopy and normally back home two hours later. You will be awake but given a sedative in your hand so whilst you talk to the consultant during the procedure you won't remember anything about it. It's not nice worrying when you need the loo and clearly your still young if you think you may be going through the menopause so it's better to know as I'm sure you don't want to spend years suffering in silence. I had my last colonoscopy on New Years Eve last year and was out celebrating that evening so if your dr recommends it please consider having it done

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