Possible solution to ileostomy problems-Updated

[JudeD59]

So it's been seven weeks since my temp ileostomy was created and it has not been a fun experience for me. In that time, the longest I have ever been able to go without changing the bag is two days and some days it has leaked and been changed four, five, or even six times. We knew from the start that one of the major problems was my thin, sensitive skin, but another major problem is the fact that besides the main hole in the top of the stoma, I have a secondary hole close to skin level. It's so close to skin level that the enzymes leak out and under whatever seal, barrier, wafer, powder, etc. that we use, including convex wafers. Then, my skin burns and gets even more irritated and bloody and I have to take the bag off and start over. I've asked the WOCN nurses several times if the surgeon could do anything about fixing the hole and they all said no.

Saw my surgeon today and explained the problems. At first, he was like, "Well, at least it's temporary." But I pushed and said, "I can't do this for six more months. I'm in constant pain and discomfort and the skin under there is raw. Can't you close the hole somehow? Surgical glue, cauterize it, sew it shut, something?" He thought for a moment and said he had never had to do that before. He asked some more questions and then said that he would bring me in either later this week or next week to outpatient surgery, sedate me, and then go inside my stoma and stitch the hole on the side shut. He said they pull the organ out, fold it down over itself to make like a cuff and then secure the edges to your skin, so there has to be a hole inside too for it to get out onto my skin. He said fixing the hole on the outside wouldn't help because feces would still leak in the area between the inner layer of stoma and the outer. I'm not sure if he just has to go into the stoma with a small camera and stitch it up or take it apart to fix it. I guess I'll find out more when they call with a date for the procedure.

So even though I'm a guinea pig for this procedure, I'm ready to do it if it means less pain and leaking. I honestly think 80% of my ileostomy problems would go away if the hole was fixed and I only had to deal with the feces coming out of the top. Then i wouldn't have to use convex wafers which dig into the skin a bit and make soreness of their own. At least for me they do. I have been using Convatec Diamond packets that turn the bag contents into a gel so it leaks less and that has helped some.

He also said the area where my incision opened looks really good and should be closed completely in a couple of weeks. I'm going to go ahead and meet with my oncologist about my Folfox treatments and get my port installed so that when it finally closes, I'll be ready to go. Okay, mentally, I don't think I'll ever be ready, but I'll deal with that later.

Has anyone else here ever had to have this done--had a hole in their stoma fixed?

On another subject that might be interesting to some, we talked about my hospitalization for severe dehydration and he told me the colorectal surgeons have been discussing sending ileostomy patients home from the hospital after surgery with picc lines so that visiting nurses can give them IV fluids when they come. He said dehydration is such a big problem for those with ileostomies in the first few weeks after surgery that they know they have to find some solution and that is the one being considered at this time. Mine creatine level was .5 before surgery, 3.7 when I was admitted to the hospital two weeks ago, and in my blood test last week, it was down to .98, so that's great news for my kidneys.

Hope you all are having a good day,

Judy

[Steph20021]

Just i am so sorry and sad you are having to go through this. A pat on the back foe you for speaking up to the surgeon and advocating for yourself. There is no way you can or should have to deal with that pain amd discomfort for 6 months. Ive been having some stinging and burning lately for unknown reason under my appliance and so i can only imagine your fruatration, pain and sadness about it.
I hope they can remedy this soon, however they have to do it. Please keep us posted. Ill be thinking of you. Wishing you all the best.

[chrisca]

Have you tried Coloplast barrier film? I had leakage issues and it was far superior to the 3M Cavilon. Coloplast stings a bit, but that's temporary and I almost always went 3 days between changes. I also found placing wafers was a bit of an art. I pinched the wafer material to taper it on both the inside and outside edges so it made a closer seal to the skin and bag. I also cut very small pieces from another wafer and used those to fill gaps where the stoma edge was dimpled slightly. This technique made a big difference too. If you fix the hole, the remaining opening may be a bit smaller and you could be more prone to blockage. Watch for that, and chew food well, avoid things like nuts or corn kernels. Central lines have their own risks, especially infection. I managed dehydration by drinking lots of Gatorade during the entire time I had the ileostomy. It did help and I never had any serious problems, despite hiking up to 5 miles in the summer. But I was very careful to listen to my body and didn't do lots of exertion on hot days. Also, if you have tummy fur be sure to shave at every bag change. Some women don't think they have it, but even very fine hairs play havoc with the seal.

[cmewrrie]

I am so glad your surgeon was willing to think outside the box and try to help you. you are right - 6 months is way too long to deal with these issues. Good luck...hope the procedure is a success!

[JudeD59]

Thanks for the responses. They called this morning and scheduled the procedure for Oct. 12th. I'm nervous, but hopeful this will make wearing the bag much more tolerable for me.

Judy

[jean60]

Judy, I am so glad they have this scheduled and I hope it makes a big difference for you. Please update when you can.

Jean

[JudeD59]

Thanks, Jean. I will.

[Sams wife]

Yay! Glad you got him thinking. I hope it is an easylittle procedure.

[cathy123]

I hope it turns out to be a good fix for you! No talk from the dr of just reversing you early? I know some on here have done that if they can't tolerate the ileostomy. But either way you definitely need some relief!

[Cj51]

Good for you for not accepting that Doctor's brush off! I hope that this is the solution that makes your ileo tolerable for you.

If we're talking about people who go home with an ileo and who are going to follow up with chemo, I'm not sure why they'd put in a PICC line instead of a port. If you're going to use a port for chemo, why not just put one in a little early? It is a good idea to make it easy to get hydration, though. Sometimes it's just impossible to drink enough to keep up.

Best of luck to you! I hope you'll update us once you've had the procedure and let us know if it works for you. You never know who might come along someday and read this thread in hopes of getting some help with the same problem. That's the beauty of forums like this, the collective knowledge is invaluable.

Cj

[JudeD59]

So it has been a week since I had the procedure done and things are better. I can see the stitches in the side of the stoma where he repaired it and they are supposed to eventually dissolve, but I'm not leaking from the area anymore. Strangely, there is a new hole slightly above the old leaky hole in the side, but this one seems to be high enough that I'm not having leaking under the convex wafer anymore. My skin is finally starting to heal and for the first time in nine weeks, I'm not constantly aware of the pain and pulling of the bag. Sometimes I actually go an hour or two without thinking about it.

He told me to keep doing what I had been doing for awhile until it heals, so I use a dusting of powder right next to the stoma where the sore areas are, then spray 3M calivon over it, blow dry, another coat of powder and 3M, then convex wafer. Surgeon told me to remove bandage from where incision opened and my ileostomy bag and shower with both off every two days and that's what I've been doing. So far, so good. I haven't had any leaks or had to change any bags early. Now that the sewn area has healed a bit more, I can try leaving the wafer on for three to four days and just change the bag part.

I'll let you know if anything changes, but so far, it's looking good and I'm glad I had it done.

Judy

[Sams wife]

Glad to see you getting some relief finally!

[cathy123]

Yeah! So glad you are getting a little relief Judy.

[Jachut]

That's good news! I only had a brief period of skin problems right after surgery but boy oh boy, I would have strangled anyone who suggested I live with it for six months! It was intensely painful and itchy and I could not just get on with things and ignore it! So glad you're feeling better.

[lauragb]

I hope this procedure worked and you can get back to living your life. It sounds promising. Good for you to advocate for yourself!