Crohns flare with ileostomy

[Jimena]

Have any of you had? What were the symptoms?

I have had my ileostomy 3 months now. I love it. My colon (and colostomy) was removed cos i had multiple fistulas around my colostomy and ileostomy was made. I have pyoderma so soon after surgery i had to start prednison to it. I felt absolutely fine while prednison but now that i have tapered it down (5mg every other day) i kind of feel rubbish.. I have slight stomach pain, i am tired and my mouth is in agony. I have mouth ulcers. NOthing too serious yet but i am little bit terrified...

What about calprotectin levels with ileostomy? I had my done when i was about 20-30mg prednison and it was 67. My next test it next month.

Why can't this just never end?

Oh, and i do have history of ileal crohns.

 

[24601]

So sorry to hear that you are having to continue with the neverending battle that is Crohn's.

I don't have any experience or knowledge about fecal calpro for those with stomas but I wondered if you've in the past had raised inflammatory markers in your blood? And if those blood tests (CRP and ESR) have been repeated recently? An obvious question I know (and I'm not a shower these days in terms of markers in bloods) but I just wondered about that and understand and share your concern with the symptoms you are having.

Are you on any other Crohn's meds right now (I can see from your signature that you've had no luck with a lot of them) to take over as you drop the dose of pred?

Does your GI have a treatment plan?

Sending hugs :ghug:

 

[Jimena]

Thank you for answering! I had my bloods taken about month ago, CRP was 9, so it wasn't elevated. Tho, i did take prednison like 20mg then.. I have my next bloods next month and calpro too. I use Humira, and next week i have humira levels taken from my blood so we see if that one 40mg pen is enough or do we have to doubledose it. I have used humira since 2007, it didn't help my colon but small bowel has been quite good behaving since. I have stopped it few times and my ileum is acting up straight away. My signatire is a bit old, i have had two colostomies, my last one was disaster, fistulas all over it so this january they remove my colon and i have permanent ileostomy now.

It is hard to move on with life with this constant fear of getting a flare...

 

[24601]

Hi Jimena,

Well I'm not sure that I'd say that a CRP of 9 isn't elevated. If we're using the same scale then at my hospital in the UK that is outside the normal range. Also as you say you had a CRP of 9 when you were on 20mg of pred so that changes things too.

I'm glad that they're checking your Humira levels soon and considering whether you are still responding. It may be that you will need to switch to one of the newer biologics.

Have you told your GI about your increasing symptoms? Could they do the blood tests and fecal calpro sooner?

I think it's really important to discuss all this with your GI as soon as possible - and certainly phone or email and tell them that you are feeling worse. It's much better to stay on top of the disease and treat inflammation sooner rather than waiting I think.

Dealing with the constant uncertainty with Crohn's is really hard :hug:

 

[Jimena]

Hello, again. No i am quite sure i have a flare. Had to quit my humira 2 months ago due weird neurological symptoms. No i have pain around my stoma, there is pressure all the time and kind of sharp pains, when my stoma works i feel cramps. I am so tired and just got my bloodwork back and CRP is elevated, 25 now and 15 last month. No too bad but still. And BWC (white cells?) is 10.

I am just waiting my doctor to call me, next week and if i need my scope earlier. It should be august 20th but i thinks it should be earlier. I am devastated I can't believe that after six months of my colectomy, this nasty crohns comes back. I think next step is Entyvio.