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Hey team,

    So I am just rover two weeks out from my surgery and have some questions.  I know that I will by no means feel 100% this soon, but I'm hoping for some reassurance that a few things will get better....

 

1) The mild stinging/itching sensation around my stoma, will that go away? I'm assuming its the sutures healing since the stoma has no feeling, but I'm not sure.

 

2) I still have a mild and annoying ache in my anal area (assuming anal canal since I have no rectum) which makes sitting and what not uncomfortable and frustrating. How long for that to go away? Also there's a mucous discharge back there that seems to happen frequently at random, does that continue? Become less? Should I put something back there to catch it?

 

3) My main suture still hurts like hell when I stand up from sitting (burning stabbing pain), but goes away as I move around. How long until I don't have to fear standing up?

 

4) I walk every day and try to push myself (within reason) to go out and do errands (someone drives and comes with me). I also eat a lot (not all at once) and really pack on the protein (including a chewable multi vitamin every day), to try and gain back some of the 50lbs I lost in the last 4 months, but what else should I be doing?

 

5) Those of you who have fully recovered and have permanent ileostomies, are there things you cannot do? Can you exercise? Lift weights? Run?

 

6) I live in California and it gets very hot, which means I sweat. Since summer just kicked off I just had my first issue with sweat causing my bag to fail early (no big deal I was prepared and handled it). Any tips on how to protect your bag from sweat? I thought about running a dry deodorant stick around the seal part, but I don't know if that would help..

 

I'm 25 and had the flare from hell in February. I lost 50lbs, was in constant pain, 60mg of prednisone (for 3-4 months), could barely eat or move and spent most of my time in bed/bathroom. I chose this surgery because I was tired of fighting this disease, however the original plan was to get a j pouch. Do to complications that is not possible. I'm at peace with the permanent ileostomy (sort of), but looking for guidance and assurance that these issues either aren't permanent or are at least manageable...

Original Post

Firstly, I want to say congratulations on your permanent ileostomy. Although not having a bag is nice, you may be saving yourself a lot of misery by taking the simple way out of UC (I wish I did!). In a few weeks, you will start living your life and will pretty much forget about these issues and not having a jpouch.

 

1) I think so, this may be the itchiness of a surgical wound.

2) I think you still have your rectal stump, so you may see blood and mucus until you get that removed. It will hurt in your anus for a few more weeks.

3) Probably a few more weeks.

4) Good work, you will see the benefits.

5) Permanent ileostomates have NO limitations, they just need the right equipment for whatever activity they are doing.

6) I'm not sure, but you should make sure to try different bag samples. I loved the Coloplast Sensura Mio. It handled moisture and water like a champ.

 

Seriously, in a few weeks, you will feel great (I say this from experience). Jpouches are tough stuff and you are getting the easy way out. Just talk to your stoma nurse and figure out what hardware lets you live the life you want.

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