The Colon Club

I was diagnosed with Stage 2 colon cancer back in May 2015. The Drs started me on chemo (5FU) and radiation a few days later and it continued until August. PET scan showed no more cancer but surgeon guaranteed cells were still there and I needed surgery to remove the section of my colon where it was. Surgery was performed in October here in Pensacola and the next week the anastomosis started leaking from a dime sized hole. I was admitted into the hospital and stayed there for 6 weeks while Drs tried to control infection that was now formed in a 6 inch presacral abscess. During that time the diverted me into temporary ileostomy to allow the hole to heal. After 6 weeks I was DC'd home with a JP drain and antibiotics because the hole wouldn't close and the abscess was still there. For the next year I had the ileostomy. Dec 7, 2016 I went to Houston Methodist Hospital and Dr Das reversed my ileostomy. Since then I have been having many bowel movements per day (8-15) and tons of chronic pain. I have been living on pain killers. I have had several tests done and was told I had a new abscess and the old abscess cavity was still there causing trouble too in May. I flew down to Cleveland Clinic In Weston and met with Dr Wexner last week who ran more tests and concluded the chronic anastomotic sinus is getting larger and bacteria is getting inside causing my fevers and extreme pain. He suggested another colon resection (my 3rd) and another ileostomy.

I'm on antibiotics but it doesn't seem to be helping much and taking pain meds and suffering most of the day. Does anyone out there have any experience with chronic abscess cavities or a similar situation?? If so, please tell me if you had to go to an ostomy permanently or what procedures were down to help you? Also please tell me the surgeon who was able to help you?

If anyone has a suggestion for a great proven colorectal surgeon that is skilled in abscess removal please pass along the information. I'm almost at my ropes end here dealing with the pain every day for past 7 months trying to avoid permanent colostomy.

Thanks so much!

Hi and welcome,

I am so sorry no one has responded to you thread. I hope you see this and that others will respond too. Sometimes threads get buried fast around here. Butt know that you have come to the right place for information and support.

It sure sounds like you have been through a lot. I'm so sorry. Especially the pain, that has got to be the worst.

If you have to surgery done again, I'm going to recommend getting that permanent colostomy bag. I have one, best decision I made. It truly gave me my life back. Radiation while effect destroyed 2/3 of my rectal muscles, thus I was tied to the toilet anytime I ate. Please understand this was over 13 years ago, a lot of advancements since then. Butt my bag does not hold me back. I can be out all day, eat what I what not have to worry where the nearest bathroom is.

Is there a reason you are so against it? Have you talked to an Ostomy nurse yet? Really they are not that bad. I have better quality of life with mine. There is another site that might be help. I will locate it for you.

Hope this helps some,

Lee

Here is that other site, check it out. I hope it give you some direction. Again welcome,

https://www.uoaa.org

Hi BallCoach10--

I can only speak regarding a permanent colostomy, I have no experience (thankfully) and no medical background to speak of your anastomatic issues, sorry. I wanted to agree with Lee in that having a permanent colostomy is by no means the worst thing that can happen to you. I think ostomies get such a bad rap because of the temp ileostomies many need to have after surgery and during chemotherapy, but they really are two completely different experiences. Your output would not be so voluminous and liquidy with a colostomy as you have all of your colon to process your waste. You could even irrigate (sort of like the equivalent of an enema but via the stoma) where you wouldn't have output for 24-48 hours, depending on your body. I am a high school teacher and my students have no idea what lies beneath. I am an active walker and enjoy running when I can and enjoy the pool and the beach during the summer, truly not anything I can't do today that I was able to do two years ago before my ostomy. Just keep it in mind, it really is not so tragic as it might seem.

Best of luck on a resolution, please stop back and let us know how you are doing!

Hi Ballcoach10

I had eight weeks of daily hyperbaric oxygen treatment last year at a government funded hospital in New Zealand which healed my pelvic fractures caused by radiation treatment in 2011 - it wasn't just that I felt better, CT scans showed that the necrotic bone had regrown and was healthy again.

In the chamber with me were two patients who had had infections deep inside their abdomens which antibiotics were not helping. Both of them were referred to the hyperbaric unit and both of them benefitted greatly from the treatment.

For one who had acquired her infection during surgery for ovarian cancer several years ago the infection which had resisted other treatments since the surgery was completely gone by the end of the eight weeks.

The other patient had a long duration infection of her bladder. I finished my treatment before she did but she was already getting better part way through.

If hyperbaric oxygen in a proper clinical setting is offered by a hospital you can access then you might want to consider it, it may sound a silly idea but it can work.

Sophy

Hi Ballcoach,
I had a somewhat similar situation to your self, in that I had several abscess deep in my abdomen. It went on for several months, and infection got that bad that I could not eat and my abdomen was huge I required hospital care, NG tube and TPN. Surgeon eventually came up with a plan where an interventional radiologist inserted drains into each cavity using CT guidance, and I had IV antibiotics (four different types) for two weeks and then orally for a further four weeks. I had five drains which were removed as each one dried up, four weeks until the last one was removed. At one stage I really thought the infection from the abscess would kill me long before cancer ever would. However once that situation was sorted I began to recover and was able to complete my chemo and am currently NED . Hope you can get a solution to this soon and your recovery goes well.
Regards
Macpudd

BallCoach10 wrote: . . . Surgery was performed in October here in Pensacola and the next week the anastomosis started leaking from a dime sized hole. . .
Thanks so much!

My father in law lives in Pensacola, love going there.

Wishing you all the best,

Lee