I FIGURED IT OUT!

Well, I figured out part of my issue with my revised ileostomy stoma. The reason it looks as though part of my stoma collapsed and grew onto my skin is because I have something called mucosal seeding. It is caused by an ileostomy stoma being made without a subcuticular stitching when the stoma is matured (formed). It actually is viable stoma which is grown out onto the skin. Just like what I was describing and as seen in pictures I sent to Tracy and Christine.

SO that is one thing that was done wrong in the revision. There is this other issue that was a bit more complex that I also have that I think is what is impeding the flow of stool. The stoma kind of goes in at night and sticks out and is very stiff during the day. And the opening is like on the side of it rather than in the middle of it. That explanation in the textbook was beyond my comprehension but it is something important, obviously.

The colorectal surgery book I found this in (Identical pic to my malformed new stoma) also said that attempts at trying to cauterize off the part of the stoma that is flat on my skin are futile. It also says that some skin flat thing can also be done to cover the part of the stoma that has "grown onto the skin" but that the mucosal seeding can recur. SO that is what Dr. S was trying to do when he put the silver nitrate on that flattened part of my stoma. They were all calling it granuloma's there at Mt. S when I KNEW and told them that it was actual stoma material.

The textbook said that this can make pouching very difficult and lead to skin breakdown which I sure have. The part where the stoma goes in when lying down and comes out when sitting and standing is in there too. Wish I could understand that part BUT upshot is this revision was done incorrectly. INTERESTING the textbook chapter was written by my original stoma surgeon (now retired) who did make me a perfect stoma back in 2007. The fact that it stenosed this March I really do not think was his fault. I only weighed 99 lbs when he made it and I think if he had opened my abdominal wall 2 fingerbreadths wide, it may have prolapsed as my op report said I had "very little accompanying fat".

SO I figured it out. The book said that sometimes relocation of the stoma is needed with all this going on. I am going to copy the pages and bring them with me out west when I go. This stoma redo absolutely HAS to work or I will die. I am going to ask about what is up with the stoma having the opening on the side with the mucosal seeding. Maybe lack of subcuticular stitching makes not only the mucosal seeing but may make the stoma crooked too and compromise the ability to output.

I know the doc who did the revision meant well as the current doc where I had been was totally ignoring my severe stenosis March thru May, so it is as it is and he certainly TRIED to help. BUT don't they teach how to do these stoma's in surgery school?

It sounded like the unevenness issue with the stoma and the off centered lumen was due to not enough bowel being freed up to make the stoma. I do have ten tons of adhesions and it was likely difficult to lyse so many lapro. I hope the doc out west will be able to do this (free up enough intestine). SO i was right right along, this new stoma was not made correctly (though I know well intentioned). One doc in NY (not mt s) thru his nurse said "Don't think about your stoma so much." Well no I would be back cruising if it worked well and was normal. THAT was the thing that really made me dig for this info. When someone says that it means there is something wrong. All the answers were in this huge colorectal surgery textbook I got hold of.

Post Edited (esoR) : 8/26/2012 11:15:15 PM (GMT-6)

Thanks, I am BESIDE MYSELF!!!!! Do we have to lug this HUGE text book around with us and give it to stoma surgeons and tell them how to make a stoma??? JEEZE!!! We assume. Auugh! end of rant. Thanks. I often wonder why did I not do this research prior? Was not my job! All my research is retroactive. RJ

     Hind sight is 20/20.  It's just a shame Dr. Fry wasn't your first surgeon to do the stoma.  I am sure you wouldn't be in the predicament you are today .

Glad you got some insight Rosemary!  I hope everything works out.  I agree with research.  I do so much research everyday myself because I feel some doctors do not help me at all; even my wonderful colon-rectal surgeon that removed my colon last year.  All the doctors are like; well, you have to figure it out yourself, or stop taking certain supplements.  I can't stop taking certain supplements because they make me feel better, or if I didn't not take them at all; I  would feel  worse!  I kno w my body!   You were right about me feeling better stomach- wise sometimes, but I still have yet to put on the weight.  I do not even think it is stomach related at times.  My left side hurts, and I get so much gas and bloating just due to the fact of having no colon.  I am either constipated (use a suppository), or I can take a supplement to help the bo wels and run into diarrhea (I can feel like I have to go, or release gas later after eating something, but I can't do anything!)  I did not really have a particular good week, and I am hoping for a better one this week.    I am still trying the more natural approaches because I hate some medicines with side-effects that might make me feel worse; example, Imodium (yes it can help), but then I am plugged up.  I started to use Florastor with some success.  Just frustrating!!!!!  I keep a daily journal all the time about certain things I eat, drink, or take. I can't believe I get another evaluation on my stomach next month already.  This summer fle w by!!!!!!!!  I would just like normal bo wel movements (no constipation or diarrhea, gas, bloating), and go a couple times a day, which works the best for me.    The research I have been doing lately is into probiotics, enzymes, etc.; and reading and watching programs by this lady Brenda watson from rene w life.  I have used some of her products with success, and it just a day-by-day process.  I am thinking about posting in the IBS forum to get some more insight about issues; other wise, sometimes I actually wish I had an ileostomy just not worry!   Any ways, enough ranting, I hope everything works out, and I am keeping you in my prayers.  I need to reply back to Christine.  She texted me last week, and I haven't got back to her.  Tell her I said hi!  =)   Kyle 2009 - IBS 2010- Dx Colon inertia Feb. 2011 - Left hemicolectomy (un-needed) June 2011 - Total colectomy August 2011 - Dx Gastroparesis Jan. 2012 - Gastric pacemaker surgery

Thanks for ideas on how to approach this new doctor and not sauy that I did the research. Good idea! Thanks!

I sure wish that this had been done correctly because with my history of forming scar tissue another redo could be curtains for me.

I really don't understand why the current surgeons at the hospital where I got the first stoma did not just redo it when that one stenosed. They are all colorectal specialists and do stomas for a living. The one I went to is highly recommended by multiple other doctors all over. I might die of all this being ignored, sent to find own help, help done wrong, more hunting, redo's.

What is the issue? Others get help where they are already a patient. R

Well done with your thorough research. Can only assist in a positive outcome when u meet with new surgeon. Good for you!!!

Rosemary -

Congrats on the great research! I've learned more from you than from all my docs and nurses.

My stoma moves in and out several times a day, also opens on the bottom side right down to the skin, making it impossible to get a good seal.

Thanks for posting!