Stoma Complications: Considering Reversal Surgery

Question

The area around my stoma is one huge mess and has been for months. I am now living with pee pads (dog training pads), baby diapers, and paper towels to hold in the poop because my stoma area will not hold a bag for any longer than an hour.This situation has been going on since late June 2019, and I am at my wit's end.I had an ileostomy last October 2018 due to rectal cancer (stage 1) surgery and had few problems with ostomy bags (Coloplast) until I started developing a hernia directly underneath the stoma area. This is where and when the problems began with fitting and leakage. Coloplast one-piece bags were suiting my body well, I had no leakages for the first 3-4 months, then slowly they kept sliding off and I was unable to wear them due to the vinyl flange edges.Next, I started experimenting with Convatec (different convex styles 1pc. and 2 pc) and because of their fabric type flange edges, they were working much better, yet slowly they began leaking. The more I tried putting stoma bags on, the more my skin was getting irritated. Long story short, it got to the point where a sort of mucus was forming around the stoma area and NO bags were able to stay in place. I am on blood thinners, so, therefore, I am encountering an increase in blood around the area also.Despite applying Eakin seals, paste or whatever methods - nothing was working. I was becoming bag-resistant and the pee pad situation began.A wound/ostomy nurse stepped in whom I had consulted with from my hospital surgery stay. She tried the following:- Asthma inhaler/puffer (steroid to get the swelling down) and applied it each time I was cleaning up my messes- A MedLine product (5 mg small powder bottle which contains silver) used to clear up the mucusMy stoma was in horrible shape when I turned up at the Emergency in late June and was admitted to the hospital immediately. Where I live, the actual hospital emergency department itself is useless to go for help folks if you have an ostomy problem, as they appear to only depend on a wound/ostomy nurses for help. But it was on a weekday, and as soon as the ostomy nurse saw how dire my stoma situation was, I was admitted. The area was an angry red, bleeding, and about the circular size of a CD disc., confirming that I would be unable to take care of this on my own. After 4 days, the swelling did go down, yet it was still difficult for any bags to stay on.After discharge, I received home care, however, only a few community RPN's RNs are trained in the ostomy area. It was difficult seeking out a qualified home wound nurse.I tried another product for the surrounding stoma area called Karaya 5 powder made by Hollister. This worked better than the Medline product and the inhaler. The Karaya powder soaked up the mucus, the redness began to decrease, but I repeatedly had to keep applying it after each attempt at a bag change or clean up of my feces mess. Patience was a virtue as it took many days to clear up. I was then able to apply a bag, but unfortunately with short success.This has been a routine over the summer. I have seen the ostomy nurse three different times at the hospital and even she is stumped. I have now decided to go for a reversal.The cleanup has left me weary, frustrated and unable to leave my house. It's messy and I constantly smell.I await my final test (CT scan) to see if it's okay to go ahead with a reversal and feel I have no choice. I'm terrified.

sweetemma · Answer

Although I didn't have Desitin on hand, I used the Zincofax last night and this morning and the area has greatly improved.   Not enough to apply a bag but better than other solutions I have tried.   Thanks so much for your suggestions, I will keep you posted.

looking forward · Answer

Please do not get a reversal. I did years ago and it does not last. Doctors today do not want patients to do this. I use Liberator. The people there know a lot and can send samples of what they think you should use. I do understand the "mess" you are in. Aren't we all?

2marilyn2 · Answer

Hi sweet Emma,

As regards to your CT Scan, I was told by my Consultant that under no circumstances anyone with an ostomy should drink the prep required for these scans as it would play havoc with your output possibly causing bad vitamin and mineral deficiency! Your situation might be different from mine but it might be wise to ask the question before drinking the prep! Just a thought, good luck with everything else!

sweetemma · Answer

Luckily, before the CT scan, I checked with my surgeon explaining the disaster it would create with drinking contrast prep without an ostomy bag, and she assured me that the test could be done with an IV contrast only. I had the scan yesterday via IV, which still produced plenty of liquid output. I have to flush out the contrast with plenty of liquids over the next 48 hours. Thanks for commenting, I appreciate your thoughts.

Deb

w30bob · Answer

Hey Deb,It's been a little bit... how are you making out? Is your skin healing? Let us know.Thanks,Bob

sweetemma · Answer

The skin never ever healed. I had the last of my tests (CT Scan) to see if it was a go-ahead for reversal surgery and at the same time was booked to see my surgeon on October 1st.

I've decided to go ahead with the stoma reversal where she will repair the large parastomal hernia underneath my stoma at the same time. My surgery is booked for October 18th, only a few days away. I'm exhausted and frustrated at this moment having to deal with this mess and frustrated that wound nurses, or community RN's weren't even able to come up with any solution. I eventually heard from Nu Hope just the other day, but it was too late. The Nu Hope RN gave me some tips about my hernia repair post-surgery, so that was helpful, and assured me once the reversal surgery is over, the skin around my stoma should clear up fast due to no feces.

Thanks for everyone's help, and wish me luck on the reversal. I will keep in touch.

Deb

Bill · Answer

Hedllo Deb. 
Of course we wish you 'luck' for your operation. However, I hope it isn't  just luck that you need but a good surgeon and a positive outcome. 
Best wishes
Bill

w30bob · Answer

We're all pullin' for you, Deb!! Speedy recovery!RegardsBob

sweetemma · Answer

Thanks for all the prayers, Deb

kangaroo · Answer

Partial colostomy reversal question:Hi. I am new to this site. Curious about what operation you had reversed. I have a partial colostomy, and am thinking about having it reversed. Surgeon said he has to check me out better to see if mine can be reversed, but said it's probably possible. He did say it would be a tough surgery. I would appreciate hearing from anyone who has had a partial colostomy reversal. Thanks.

Stoma complications: Considering reversal surgery

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