I'm 23 can't control my illestomy

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New Member

Date Joined Aug 2007
Total Posts : 2
   Posted 8/7/2007 1:39 PM (GMT -6)   
I had my colon removed 9 weeks ago today because of Ulcerative Colitis and now they think I may have had Crohn's.  Anyway, I am scheduled to have the illestomy reversal in 4 weeks and I'm just trying to learn more about what to expect.  I'm 23 years old and determined to get my life back.  I have had lots problems since surgery with a wound infection, staff infection, dehydration, the flu, strep throat, and then my stoma being inverted causing lots of leaks and sever skin irritation.  It hurts so bad that I wince when the stool touches the skin and it makes it impossible to sleep since all that fluid just sits on the skin when I lay down. Anyone have any advice on what to do about the leaks?
But I am VERY excited to get "put back together".  The only thing I know is that I will be going to the bathroom a lot post surgery.  I am curious if any has had pouchitis or any other infections. 
Also, for the ladies, I am wondering if any of you have had babies since your surgery?  I have been told it will be more difficult but why?  Any help will be great.  I'm just trying to get though these 4 weeks and need some light at the end of the tunnel! 

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 8/7/2007 1:51 PM (GMT -6)   
for some reason having surgery like that, actually any type of major stomach surgery lowers your fertitlty rate. The only other thing I can think that maybe since you will be having a j-pouch, that they are worried about tearing, during birth, but actually i figure you would probably have to have a c-section.
good luck!

New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 12/31/2008 5:35 PM (GMT -6)   
Just joined today so I am a novice to this site. I had by reversal done in July after suffering years from ulcerated colitis. Since then I am having various difficulties. I am continually going to the toilet (especially at night) and I am suffering from sleep deprivation. The pain is immense with a sharp jabs and an intense burning sensation. I am still on various strong painkillers and recently went into day surgery to get the opening "stretched". I take immodium when it is really bad (like 15 times in 2 hours) but I am trying to stop taking them as I dont want my bowel to get used to them!!!

I dont know what to do for the best in terms of my diet as I feel that as soon as I eat the pain starts. I have lost over 2 stone in weight. Any help of advice would be greatfully appreciated as my torso is red raw and so are my eyes with crying!!!

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 12/31/2008 9:31 PM (GMT -6)   

vballcl, welcome to Healing Well. I'm sorry you've had so many troubles since your surgery. Regarding your inverted stoma, I've heard that Convex Inserts can really help. For the skin issue, you can put Calmoseptine Ointment on your skin around your stoma to protect it from getting irritated. If you Google both items, you will see where you can purchase them. Also, there are several women here who have had babies post surgery, and everything was fine.

fmorr, welcome. I'm sorry you're having trouble, too. I have a permanent ileostomy, so I don't know what to do post reversal, but there are lots of people here who have had reversal surgery and will give you great advice. Have you told your surgeon about your troubles? Hopefully, you will get some relief soon. You might want to post your own question, so more people who have had reversals can see it.

Wishing you both the best, and please keep us posted on how you're doing.

:-)  Cecilia

Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

New Member

Date Joined Dec 2008
Total Posts : 2
   Posted 1/2/2009 2:15 PM (GMT -6)   

Hi thanks for caring.  Good idea to post my questions, so here we go: redface

I have been prescribed immodium - told to take up to 8 per day but still dont want to continue with this amount.  Anyone know what I should be aiming for?

I have also got VSL priob drink which flushes out any infection but I have stopped taking them - is this okay.

In terms of the burning sensation smhair (even when I want to pass wind) will this go away.  What about the pain does this reduce through time.

Dont know what to eat for the best because as soon as I eat anything substantial the pain starts. Any suggestions?

Sorry for the long list but here hoping that someone will be able to help.




Veteran Member

Date Joined Feb 2006
Total Posts : 5698
   Posted 1/2/2009 3:36 PM (GMT -6)   
I suggest you visit www.jpouch.org for help and support. There are over 6000 pouchers on that site, many from the UK, (I'm guessing your're from the UK) who can give you some tips to improve your situation.

dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 1/2/2009 5:59 PM (GMT -6)   
I've done a lot of research on the reconnect j-pouch surgery and fertility issues, so I thought I could offer some info to you regarding this.
What I've learned, is that they don't completely understand why it decreases fertility, but they think it has something to do with adhesions and scar tissue affecting your reproductive organs. The figures I got (from the Mayo clinic) said it could decrease by as much as 70%. It seems so high, but that was based on their studies post surgery as compared to reg. population, But I can't remember if it compared to active u/c. I've also posted a poll in j-pouch.org for fertility issues based on laproscopic technique verses open. Since lap. tech results in less scarring. I wanted to have all done lap., b/c of fertility, but my emergency 2nd surgery erased all that....
Also, the surgeries seem to only affect the "getting pregnant" and everything I've read says that the pregnancy/labor/delivery should all be normal. Whether or not you'd have to have a c-section is based on how your OB feels about it.
Having said all of that, I am involved in a support group locally with a gal who has the j-pouch. She did have fertility issues. She now has beautiful twin boys after fertility treatments.
My choice is to have the ostomy bag until I'm done having kids. (maybe a few years-I have 1 baby already and want to have maybe 2 more-husband only wants 1 more.....we'll see) and then think about a reconnect, as long as all goes ok. And who knows, I may not want to reconnect after that time. I might feel too good. Even with an ostomy.
Any other ?'s I can help with?
Good Luck
28 yrs. old. married with one beautiful daughter (born 11/20/07)-diagnosed with severe pancolitis u/c 2002 had subtotal colectomy 12/19/08 resulting in ileostomy; emergency surgery to redo ileostomy 12/25/08; cipro, flagyl, pred., pepcid (temporarily....?)

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