Permanent Ileostomy Question

[hopeful]

Hi all,

for those of you who have had a definitive (i.e. permanent ileostomy), due to having all of the colon removed.

Do you continue to take medications? If so, is it necessary or just to possibly prevent a flare?

Finally, how long did you stay in hospital after surgery that involved the anus being closed up, and how quickly could you sit comfortably?

Thanks to everyone!

hopeful

 

[ameslouise]

I'm having deja vu - did you post this question already?

No biggie - here are my answers!

No meds for me now. My GI and I decided to see if I could go without. But I think in general people go on a maintenance med to keep them in remission.

I was in the hosp for 6 nights. The anus pain was excrutiating for about 8-9 days, then overnight it went from painful to sore/uncomfortable. I am 4 weeks out today and can sit only for short periods of time due to discomfort and also just wanting to be careful. My visiting nurse told me it would be another several weeks until I could sit comfortably.

Good luck! Do you have a date for your sugery?

- Amy

 

[CDDad]

I continue to take Humira. My GI and surgeon both think it's a good idea. I'm now in great health from the surgery, so it's just to prevent furture problems.


I was in the hospital for about 6 or 7 days. I retuned to work after about 8 weeks and then sat on a fluffy pillow. Probably another month until I did not need it.

 

[Nyx]

I have a permanent colostomy...my surgery was in December 2009 and I haven't been on any meds since then. We talked about maintenance drugs, but my doctor did a colonoscopy and there is no sign of Crohn's anywhere in my system, so we decided that I didn't need the meds I haven't had my rectum removed yet, but that surgery is coming for me some day. I was told I can put it off for quite a while, so I think I will..lol

 

[hopeful]

I'm having deja vu - did you post this question already?

No biggie - here are my answers!

No meds for me now. My GI and I decided to see if I could go without. But I think in general people go on a maintenance med to keep them in remission.

I was in the hosp for 6 nights. The anus pain was excrutiating for about 8-9 days, then overnight it went from painful to sore/uncomfortable. I am 4 weeks out today and can sit only for short periods of time due to discomfort and also just wanting to be careful. My visiting nurse told me it would be another several weeks until I could sit comfortably.

Good luck! Do you have a date for your sugery?

- Amy

Thanks Amy. Yes I did post but on the treatment forum, didn't get much response, so I thought I would get more posting on the stoma sub forum.

I am on TPN trying to build up my nutrition - not ready for surgery just yet - but can't wait for it to be all over already...

I am quite anemic and waiting for iron infusions to begin having an effect...

How soon did you begin eating/drinking after surgery? And do they use an NG tube for this kind of surgery, or is that not needed?

Thanks

hopeful

 

[ameslouise]

I did NOT get an NG this time, but had one for my previous 3 surgeries.

I ate I think on the day after surgery, clear liquids, then regular food I think on day 3 or so.

How anemic are you? Maybe you should get a transfusion instead?

 

[bruscar]

Hi Hopeful,

I was left with a stump after rectum and anus removed, only in a week or so for that operation.

As such i am not on crohn's meds, but have other issues blah blah blah . . wont bore you.

Good luck with everything

Bruscar

 

[hopeful]

ameslouise - Thanks - I think the NG tube was the worst part in my last surgery. Docs prefer hemoglobin to rise on its own - so got to give it a chance...

Bruscar - excuse my ignorance but what is a stump? You won't bore me - I really want to know everything I may face in the future.

Thanks

hopeful

 

[bruscar]

Ok only because you asked . . .

They didnt sew up my ass cheeks because the entrance to my anal cavity is still there, but only approximately an inch or two of a "stump" or depth of an inch or two !!

Hope you understand ? . . . so potentially i will have to have the butt cheeks done permanently at a later date.

regards

 

[hopeful]

got it. thanks for explaining. is there a reason they did not do it right away? forgive my curiosity.

 

[bruscar]

hey ask away,

lets be honest, we are talking about my ass, or lack of !!. . . . if ya can't be a little curious ??

I think because they were reconstructing an ileostomy (permanent) at the same time and it was my fourth laparotomy in two years.

Apart from that, maybe my surgeon was very busy? . . i don't know

 

[hopeful]

- thanks

 

[bruscar]

no probs hopeful, and by the way cool username !