The Colon Club

It’s been awhile since I have checked in. In March I had my final scan and oncologist appointment. I was released because I have been cancer free for 5 years. So, I’m obviously happy about that but I was overdue for my colonoscopy and a series of unfortunate events including my GI was going to be out due to surgery and then Covid postponed my colonoscopy. I went to another GI because my doctor had his surgery delayed and I couldn’t see him for much longer than I was comfortable with. I have regular flex-sig procedures with balloon dilations because of narrowing. Over the years I have been able to make it about 10 months before I am in too much discomfort and need to go in. This new doctor did the colonoscopy but didn’t dilate me. He said that I needed to go see a specialist at USF before he could proceed. So I had an exam and dilation with Dr. Marcet at Tampa General. He told me that my narrowing was never going to get better and that I couldn’t keep getting dilated because of the damage that eventually it was going to tear and I would have emergency surgery. I have an appointment with him next week to discuss another LAR. I’m so unsure of what to do and upset that I have to do this painful process all over again. He said he would try to remove the damaged rectum and do an illeostomy and then reverse or just go right to permanent colostomy. The thought of the hell of retraining the new rectum again is terrifying but I’m also afraid to commit to a permanent bag. I have an issue with adhesive and the illeostomy was torture but Dr. Marcet said it would be better with the colostomy because it won’t be as acidic and won’t leak as much. If you read all of this, thank you. I appreciate any and all advice/experiences. This is truly the best place for information.

I am so sorry for what you are going through.

I have a permanent colostomy, my decision, with my husband's full support. Best decision I made. I went into surgery knowing the outcome. That was 16 yrs ago.

Radiation destroyed most of my rectal muscle, thus I was tied to the toilet for hours if I ate. Since I had 2 young children, many days I did not eat anything until I knew I was home for the day. Generally around 3 or 4 in the afternoon. If my husband and I tried dinner out. I had 1 hour before I would be sitting on the toilet. If i made a certain noise, dropped everything & dash home, because it was coming out regardless of what I was doing. Never left home without adult diapers. I would have accepted this way of life if I had to, butt my surgeon wanted me to see an ostomy nurse prior to my surgery. That ostomy nurse requested my husband be at that meeting. That was when my husband & I learned what a colostomy was.

When we left that meeting, husband said he would support me in what ever decision I made, butt pointed out, we now know there is an option to get your life back. I stated I want that bag & have not looked back. I have cried maybe 3 times that I have this bag, thanked my lucky stars a million + times and thanked God I do have this bag.

Yes there is a recover period, butt once beyond that, that is it. No pain, radiation did more damage to me than that surgery or getting the bag.

The bag does not hold me back. When my kids were younger, we always went to Florida to see Grandpa, swimming in the ocean was part of the fun. I love body surfing. I was in my 20's, friend & I were playing in the Jersey shore. I was trying to body surf, not doing well when an 8 yr kid came up to me, "lady do you know what you'? I responded, "I'm trying, but no I don't". That kid spent 20 mins teaching me how to body surf. Been doing it ever since.

I also love horse back riding. I was a few months out from my surgery when I was doing all day field trips for my son class. I always carry supplies with me or in the car. Bottom line, I am in control, not my bowels.

I will be honest, I am very open about talking to anybody about my bag. To the best of my knowledge, nothing is off limit. And through the years I've actually helped few people. If you have any questions ask away. Either here or PM. I prefer here in case I can help someone out there.

There is a forum, like ours, you might want to check out. UOAA United Ostomyn Association of America.

https://www.uoaa.org/forum/viewforum.ph ... 71aa6479d0

I go by the name of Nickolas, our beloved 18 yr old cat who was about to be put down when I joined, to honor him. But check that site out.

Again if you have any questions, fire away. Good luck.

Lee

Thank you, Lee. I am trying to gather my thoughts for my appointment. I think my main concerns with the colostomy are the adhesive, leaks, and concern with smells. When I had my first surgery I wasn’t expecting a bag so it took me a few days to accept it. I wouldn’t even look at it until about 4 or 5 days. Thank God for my husband, he did everything until I adjusted. I was actually doing pretty good with the illeostomy until I started chemo and then my skin was a mess and changes and leaks were painful. I think that even if I do have some issues it has to be better than what I’ve been going through. I definitely started having more good days than bad but I’m always worried about if I have to go to the bathroom, if I can’t go, the pain and accidents. I’m leaning towards the colostomy but I’m still nervous. I also wonder about if I choose the colostomy if he’ll close me up. In the meantime, I’m reading everything I can. Thank you again, I appreciate your input.

Hi drw, I have an ostomy and have to say its been no problem. No leaks, nothing. Its a 3 minute a day job to take care of it. Ostomy output is more predictable/regular for most people. One thing to mention that I found helpful is to take care of your skin around the stoma. Let it breathe as long as possible when changing the flange. I wash my skin with selsun blue botanicals (I take showers without the appliance most of the time). The salicylic acid in the shampoo nuetralizes anything that might have gotten on your skin that could cause irritation/infection. I would think if there was a smell it would be because of a leak/appliance malfunction. Other than that shouldn't be an issue.

Hi, Beach Sunrise. Thank you for the advice. I’ll definitely check that out because I’m pretty sure I’m going with the permanent colostomy. I’ll post again after my appointment. Take care.

Hi, thought I would check in and update in case someone out there is deciding on surgery. First of all, I had an APR and not another LAR. This experience has been completely different from my first surgery. I went on Tuesday, 10/6, and had robotic surgery for APR plus a hernia repair and ovary removal. I wasn’t having any pain and was only on Toradol and Tylenol. I was released on Friday the 9th and only experiencing slight discomfort. This has been so unbelievable and I’m so thankful. I’m adjusting to the bag and thinking that I’ll go back to work in 4 weeks instead of the 6 - 8 that I planned. Good luck to everyone.

I had problems for about two months with the ileostomy and that was due to an appointment with the WOC nurse. We discussed my problems and she found a better-fitting ileostomy solution and things were much better with the different system. I would prefer not to have a colostomy as well but I do have LARS issues and it does slow me down but a Colostomy would restrict me in other ways.

If it were me, I'd probably go through it again but I was fairly okay with the ileostomy for most of the time that I had it.

NHMike, I definitely find the colostomy easier to deal with than the illeostomy. I hope you can find a solution for LARS. I don’t miss that pain. Take care.