Hi Kathleen,

It sounds like your husband may have a parastomal hernia.  You should search for this topic if you do another google search. This is a common condition that will probably require some kind of surgical repair. You should seek out medical care if you think this is what is happening ( or even if you don't). I have put a link here for one place to read about what it might be, so check that out and get more information.

I had this condition too ( although my illium did not protrude out of the abdominal wall...sounds like you husband's is next to the stoma.  It can be repaired. But IT DOES NEED ATTENTION.

Please keep in touch to let us know how you are both doing!

https://www.healthline.com/health/parastomal-hernia

Thank you so much for that link, Dona. Parastomal hernia does seem to be the explanation. I did a bit more googling and didn't find any better links. From what I can see, however, is that most people do not seem to have part of the bowel come outside of the body. 

I don't know whether being outside the body invites additional complications. We won't be able to see our surgeon for a few weeks. Last time we saw him, he said that he would not consider doing anything while we still seem to be coping Okay.

At least now I know what to call it. 

Hi again Katy,

I am happy to hear that the info was helpful.

It does seem like that condition could cause other problems depending on if bacteria or whatever could enter the abdominal cavity.  If its the case that any of the output from the stoma could enter the abdominal cavity, that could be an issue.

The other thing to watch out for is if the hernia causes a blockage, so that nothing can get through the stoma. this could also lead to further complications. 

Here are links to two medical articles that might be useful. We are not doctors, but my husband and I found these helpful.  This first one, https://www.karger.com/Article/FullText/369279, describes four different types of parastomal hernia.  You husband might have subtype 3 "intrastomal" hernia. 

The second article, http://www.abdominalsurg.org/journal/2014/paraostomy-hernias-prosthetic-mesh-repair.html, is by the guy who pioneered the mesh repair procedure. 

Best of luck! Keep in touch.

P.S. Take notes and if you can pictures. Also, prepare a list of questions for your doctor ahead of time.  And write down her/his answers. I have found this really helps. 

Thank you for all that. Really helpful and appreciated. Good idea to take the photos which I will do before our appointment with the surgeon. I think that will really help to make sure we are all on the same page.

On the phone the surgeon  suggested a break from Chemo before using a scope to ascertain the health of the remaining bowel and then giving us his recommended options. My husband wants to resume at least 3 cycles of  chemotherapy maintenance that had to be postponed due to kidney stones treatment. Hopefully the stoma complications don't get too bad while we wait.

We should have a clearer idea of where we are going with this by December. I will let you know what happens. 

Hi Dona and all, 

Finally saw our surgeon. Armed with all the info you helped me find was very useful. Definitely a paristomal hernia. He is going to do a partial reversal linking up the bowel, closing the ileostomy stoma on the right and creating a new one on the left at the site of the current fistula mucosa. This seems to be the best option at the moment.

Unfortunately we have to wait until 20 Dec as required after suspending one of his chemo drugs. Will let you know how he goes. 

Hi Katy,

Thats great that you finally know whats happening and have a way forward for the necessary repairs ( even if you have to wait a bit).It is always amazing to me what can and does get fixed up.

Good luck! And thanks for the update.

Good luck, Katy! Here's to hoping that the New Year will be better for you :)

Update:- My husband had his ileostomy closed and the remaining lower bowel reattached to the ileum and has a new stoma at the site of the previous fistula mucosa. We are getting used to the new stoma which is quite different. No doubt I will be looking for ideas on this site. 

The new stoma is quite recessed, which is quite different and the output is much thicker but still quite high. We did not have any stoma nurse at the hospital but am hoping to get some ideas from one of the nurses, over the phone, from one of the appliance suppliers. Some of the new problems so far is measuring the stoma and dealing with gas in the bag. Will let you know how we go. Will put further comments on a different post.

Hello Kathleen...make sure you look after yourself also during this time. You have been at this for  while. Your a tough cookie and doing well for your husband. In the matter of measuring a new stoma as the stitches can get in the way too,  I would like to suggest that you draw or trace a larger circle on a piece of parchment or wax paper, about the size you think you would need to cut in a new  bag.  Then draw lines from one side to the next with a ruler several times across the whole circle, as tho you were to cut a pie in sections. Then in the parch./wax paper, cut across those lines but do not remove the paper  at all. Then place the  papers over the  stoma, allowing the triangle pieces to open over the stoma to the base opening and skin, then fold each of the cut segments down away from the stoma and around the opening where you want to measure.  After that, cut out the sections allowing for the  differences you need in the new paper to make the size of opening you need. I wish I could draw it here, but I can not. I hope this makes sense and is helpful to you.  I had forgotten  that I needed to do this for myself once too when I discovered a bunch of little stitch hole bumps in my skin around the stome. You doing well, and I wish all the best for you all dealing with this situation you are in. 

Thank you so much for that Linda. Thank you for your encouragement and I will have to read your instructions a couple of times to get it but I am sure I will. Really, really best idea for measuring I have come across yet. I'll let you know how I go.

There are still some stitches in there which are a bit in the way. They were supposed to dissolve. I am going to see if they will come out easily otherwise just leave them for a little longer.

Hi Kathleen, really great to hear that the repair has been done, the convex wafer is used successfully by many with a similar stoma to your husbands. Pity the hospital stoma nurse not as helpful as she should, some of the nurses from the companies can be very knowledgable.  Every success for a speedy recovery 

Your welcome Kathleen. For me, if it can go wrong it went wrong. I have been so exhausted in a bag change that I have fallen asleep on the throne. Just draw that circle on a paper and then draw lines through it like you would an actual pie. Cut them from the center to the the circle drawn. Then bend those triangles away from the center. Maybe practice a few before you use them, then do the same on hubbies tummy and over the stoma to get that shape. Do not worry about the stitches, they look big but they will dissolve. Try not to tug on them and if you do, if they do not move easily, then leave them be. They are doing a job that you can not see and play an important role here. Do keep us up to date, you will both get through this hard time in your life. Keep up the good work!