Appointment with Surgeon, update

On Monday I was sick with horrible cramps ALL DAY long. It felt like labor pains. Luckily I had an appointment with my surgeon yesterday for a check up. He said he was pretty sure I had a partial blockage in my parastomal hernia. He also said I did the right thing by taking the bag off, getting into a warm bath, and massaging the area.

We decided that I will have another surgery in May. He will remove the rest of my colon, repair the hernia, and make me an end ileostomy. I will keep my rectum since it is disease free. I will also have a plastic surgeon in for the surgery to perform a tummy tuck so I can have my stoma placed lower on my abdomen. Right now, it is right in my belt line and i can not wear any of my jeans.

Where is the best spot to have the stoma placed anyway???? Just curious because I forgot to ask him yesterday.

I am still smoke-free, walking 3 to 4 miles a day, and feeling awesome. My weight is still heavier than I would like by 7 pounds, but I figure I will lose it eventually. Everybody that sees me says I look so much healthier and not so sickly and gaunt.

I can still sleep laying down, my nausea is reduced by 75%, and my heartburn seems to be a thing of the past. It takes me 2 minutes to empty my bag and I am on my way again. :)

As far as the partial blockage, yes, it was terrible and ruined my entire day, BUT, with my pesky colon in play, I felt sick every single day. I still have some skin issues, but they are getting to be less and less the more I learn.

My doctor told me that the end ileostomy will be much easier to care for than the loop that I have now.

I hope everyone had a Merry Christmas and has a Happy New Year!

Tracy

Tracy,

WOW, I sure hope I don't ever get a peristomal hernia. Did your surgeon say what caused yours?

Sorry you have to have more surgery, but there is a plan in place. Why is he removing your colon? Doesn't it hold small intestine in place?

May seems a long time off, but time will likely fly by. Hope you don't get any more blockages. I know I had 2 on mashed potato and have not eaten that since. I did have the CT Enterography which showed no issues but nothing is fool proof as we know. I seem to have to not get my effluent too thick to be comfortable. Also by every night it feels heavy between my naval and my stoma, but there is no bulge and all moves along OK. There is some fat but that is because I gained 35 lbs since my surgery, but I needed to as I was down to 99. So I don't know what is up, but it's been this way a few years now and my surgeon says no hernia or any other structural issue.

My end ileo is 2 inches diagonally down from my naval on my right side. I don't wear jeans or tight fitting pants. I go for the draw string type and actually fold over the tops of pants and shorts so the band come under the stoma, then I wear my blouse or shirt out. I don't want to take any chances on anything even touching my stoma after all I went through.

In Rio I took a sightseeing helicopter ride and they loaded us in sooo fast then they buckled us in with tight seat belts so fast that thank God I had time to cup my right hand over my stoma so that the seat belt went out around my right hand. The ride was only 10 minutes so I just left my right hand cupped there; I did not even have time to loosen the belt. BUT, had I not been quick with my hand, I would have had my stoma either squished or cut right off me by the belt. That could have been a disastrous ride for me.

Rosemary

Rosemary, my doctor told me that I will have to have a mucous hole if I decide to keep my colon because he worries about a mucous perforation of the colon???? So, in order for me to have an end ileostomy, he will have to remove the rest of the colon. Have you ever heard of this? Maybe Peltzier has????

I told him I don't produce much mucous and he said this is because the mucous backs up and comes out of my stoma. And I believe this because many times when I am changing my system, I noticed clear liquid dripping out of my stoma. I think this mucous sometimes drips under the wafer and causes irritation. YUCK

This is one of the many reasons that he said the end ileostomy is easier to take care of.

Hodaya, how are you doing? Call me if you feel like it. I am home from work until Tuesday.

Tracy

Hi Tracy,

Am sure glad my surgeon from Lahey did an end ileostomy right off the bat.  It was actually my suggestion.  He was going to do a loop and said that stool can sometimes go down the other loop and get into the colon (mine being almost scarred shut that would not be a happy thing).  So I said, Why not just go right to the end ileo and skip all the chance for complications.  And that is what he did.  Thank heavens.

If yours is a loop ileo....I see there is still some connection between your colon and your small intestine so the colon mucous could back up and come out of your small intestine loop ileo.  That would be a lot of mucous but I see what you are saying.

Double glad I got the end ileo if loops are more apt to prolapse.  Too bad you didn't just get an end one right off too.  I guess your doc had hopes for your rectum working again (and we both guessed it would not) and loops are easier to take down than end ileo's.  He sounds like a careful surgeon, so am sure your revision will go well, but each surgery begets more scarring internally.  I am totally praying I never need any more surgery of ANY kind as I don't think my body could take it.

Thanks for the clarification.   Rosemary