HealingWell
Search Close Search
☰

Ileostomy/colectomy surgery patients ?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/12/2016 12:31 AM (GMT 0)
Hello, everyone - Had my entire colon removed due to severe crohns, ostomy bag for 9 months, then hartmann's reversal in Oct. of 2015. Does the small bowel ever slow down ? I know it's working overtime being the only bowel in there lol, but I'm going to the head 20 times a day. Even after over a year of the surgery/reconnect being performed. Any advice would be greatly appreciated /
Posted 12/12/2016 12:48 AM (GMT 0)
Yes, it does but it shouldn't take over a year to do so. Have you been tested for the recurrence of Crohn's? That's the most likely explanation for going so often. I had a stoma for two years, then a reversal in July '15. I was going about 20x a day. Eventually I had tests and it turned out the Crohn's had returned in my rectum. So far Entocort has worked the best for me, but because it's a steroid you can't stay on it long term.

I'm on other meds now, and not as bad as I was a year ago but deffo not as good as I would like to be either. Dunno where I am with the Crohn's now; I'm due a faecal calprotectin test this week and am waiting to see if I can have the pill cam or not.

Anyway, if you haven't had tests, I would get tests and then go from there.
Posted 12/14/2016 11:31 PM (GMT 0)
Thanks, Tea - love a great cup, myself lol. The Crohns definitely reoccurred. Just had a sigmoid and endo yesterday and there were signs of inflammation and Crohns. I'm trying Entivyo now, without any great effects. None at all, actually. Go rather frequently still. Surgeon said it can take from 2 to 3 years for the small bowel to slow down. I really don't wanna wait all that long. Thanks so much for the advice and input. Hope we both get better one of these days.
Posted 12/15/2016 1:56 AM (GMT 0)
Indeed, there's nothing like a nice cup of tea :p

How many Entyvio infusions have you had so far? I'm going to have my 3rd infusion tomorrow. As for the claim that it takes 2-3 years for the small bowel to settle down, it sounds like your surgeon is fobbing you off a bit there. It will definitely be the Crohn's inflammation which is making you go so often at this point.

If it's not too severe, then adding rectal meds to the mix might help as well.
Posted 12/15/2016 4:36 PM (GMT 0)
I had my 3 loading doses and go back for forth on the 30th. HOpe it works for you. Really hasn't made a noticeable difference for me. There's gotta be more crohns in there. Surgeon was saying it an take that long for the bowel to return to a semi-normal pattern. Rectal meds ... are you talking about lidocane and the creams, etc ... ?
Posted 12/15/2016 8:24 PM (GMT 0)
That sucks about the Entyvio. I've heard it can be very slow-acting, so maybe there is still time for it to make a positive difference for you.

No, by rectal meds I'm talking about fun stuff like suppositories and enemas. They're commonly used in UC to treat the rectum and left sided colon. Depending on how bad your Crohn's is, rectal meds might or might not work - if you've got fistulas, forget it, they're not gonna touch those. Rectal meds have either mesalazine or a steroid as their active ingredient.

I tried rectal meds briefly, but I was massively hampered by not being able to tolerate mesalazine. (Mesalazine intolerance is rare and not something you're likely to have. The main sign is worsening symptoms.) And I wasn't too keen to go back on prednisolone, even in rectal form.
Posted 12/15/2016 10:21 PM (GMT 0)
Not sure if this would help but eating high fiber has really helped when I was reconnected and now with my ostomy. However once my disease came back diet didn't matter. Is it just the frequency? Or urgency?

Frequency I would be inclined to say there is a chance your body is still adjusting but if it's urgency I would say that is more likely the Crohns return.
Posted 12/17/2016 2:24 AM (GMT 0)
Urgency, definitely. And frequency as well. Well, thanks for all the great advice. Hoping we both heal miraculously
✚ New Topic ✚ Reply