Living with long-term bowel side effects post anal cancer treatment

@jimdiehl
Hello jimdiehl,
Thank you for your writing about six days ago: You appear to be well adjusted to your conditions. My colon cancer experience was in 1999, were not that far off in experiences. I appreciated your sharing and throughout it all, you just kept going. What a brave approach to a life changing challenge. And, by sharing this story you have encouraged others besides myself to just keep adapting to the constant changes. I also participated in ostomy groups and found much support throughout those early times.
But being a flight attendent is courageous: I no longer fly anywhere; the overall process seems so complicated and crowded all the time. I, we, my gal and I, explore our states on three wheeled trikes, mostly in Florida and my status as an ostomate has never been an issue. Just keep going my friend, and keep sharing whenever you can. Helping others through encouraging responses is such a wonderfull thing about our connect site. Best to you and yours.
Jofree

Thank you so much. Just being able to talk about this and knowing I am not on an island by myself going through it has been such a help. I see my colorectal surgeon next month and I will ask about SNS. She has strongly recommended it, but I was afraid, afraid of choosing something that would only mitigate the problem rather than cure it, something that would be lifelong instead of restorative or therapeutic. I realize now that this thinking is part of the stigma, and I am not helping myself or anyone else by holding onto it.

As a rectal cancer survivor, my surgery was in 1986. I had a diverting colostomy for three months before my colon was re-attached. I had a double advantage in that my step father had a permanent colostomy for the last 20 years due to his rectal cancer surgery. From my own experience and from watching how the colostomy had changed his life style, I concluded that I understood colostomy. I have managed bowel issues for 40 years - mainly unpredictable, often short notice, sometimes no notice diarrhea. It was not an unmanageable issue until I became a flight attendant 10 years ago. I could not tolerate unpredictable bathroom events while working with passengers and crew members in the cabin of an airliner. Several years ago, I discovered over the counter Immodium (generic Loperamide). One 2 mg pill after the onset of diarrhea generally stops the diarrhea. It basically shuts down my large intestine. I have to be careful to restart my large intestine motility if it does not re start within two days. If not, I am subject to developing a small bowel obstruction (SBO) (likely due to scar tissue) in my small intestine. I have had five SBOs in the two years using loperamide, one requiring hospitalization and a naso gastric suction tube to relieve it. However, I find that as a general statement, I can avoid unpredictable diarrhea with loperamide or very selective eating of small amounts of low residue food more frequently and occasional use of loperamide. My goal is to avoid unpredictable bathroom events as well as SBOs and I am making some progress. I have also tried pelvic floor therapy which may have helped (cannot really identify a change) and will also consider sacral nerve stimulation if needed.

My colostomy experience was not bad, and I would go back to a permanent colostomy if my existing management practices fail. While on a colostomy i participated in ostomy user groups at Fairfax Inova and found them very supportive.

I finished rad and chemo treatments for anal cancer 3 weeks ago. My skin has healed except for an area near the anus which seems to open daily and cause quite a sting. And weeping. I've followed all dietary recommendations, it is the rectum opening and closing. Any words of wisdom on this subject.

@walkerlsroche I have had my colostomy for two years. It’s a double barrel ostomy which means it has two opening in it. One for poop and the other for mucus. I have had very few issues. I use a closed end bag. I take everything off when I shower. I use regular soap. My skin is fine. I check my bag regularly during the day. I use the minimal amount of supplies. I like to keep it simple. I do use extender strips. One on top and one below. I did develop a large hernia. I had it repaired in April. So far it hasn’t returned. I’m keeping my fingers crossed. I haven’t had any issues. It has made my life so much better which has made it easier for me to accept. Please feel free to ask me anything. I’m here to help.

I am also an anal cancer survivor (13 years ago!). I was treated with chemo and radiation -which resulted in severe burns. I noticed a change in my ability to control my bm’s immediately but rarely had accidents. About 5 years ago, I started having many more accidents and dealt with almost constant diarrhea. I was sent to a GI for an assessment. It turns out I have been diagnosed with Exocrine Pancreatic Insufficiency. I have no idea if it was related to my cancer treatment. However, I started taking Creon, which is actually derived from pigs. The creon has almost entirely solved my problem - though I do have “flares” every few weeks which I can control by increasing my Creon. The medicine is very expensive but the manufacturer has a patient financial assistance which I have qualified for.
I’m on a couple of EPI forums and it appears that not all doctors embrace the dx AND it can be confused with other digestive problems. I have not found anyone on the forums who has a history of anal cancer so it may not have anything to do with the cancer treatment. However, the radiation burns had affected my sphinctur so I assume it at least made the EPI harder to deal with.
You might ask doc if EPI could be at least contributing to your challenges. Good luck at finding help!

@walkerlsroche
Good morning,
My Connect name is Jofree: I have had a colostomy since 1999 resulting from colon cancer: I was 54 years old then and I am now 80. My experiences were at the Mayo Clinic in Jacksonville, Fl. and from the diagnosis to the operating room was less than 4 days. I was given an option to have a short term Ostomy and my surgeon expressed that there could be complications to resect me so I informed him that I would rather have an ostomy than have issues later on. That was that. Six hours after the procedure I awoke to an ostomy pouch on my left side.
True my wife and I were no longer able to appreciate our intimacies; the radiation and chemotherapy at those times were fairly radical, the whole procedure was radical, but my cancer was gone and has not returned. We had a tremendous challenge in front of us and with the follow-up help from the Mayo Clinic folks we made it through our first year. I have never regretted ending up with a Colostomy. The appliance is not openly visible and with practice and maintaining our regular bike rides, within the 3rd year, we realized how much more life we were facing together and thanked our spiritual God for these challenges.
Please do not take the road that leads to feeling valueless:
Your obviously near the end of your tolerance for your situation and I can honestly share with you that to hold an attitude that you have a worth, a value just around the corner and your persistence to desire more from who you think you are is but one day at the time.
That is how my wife and I faced our situation: there was really no choice that we could make to return to what we thought was our normal ways. What we have discovered is that our relationship has grown exponentially and we discovered a new dynamic with our own attitudes and how we responded to what was left of us.
You can do this: talk with your physicians about an ostomy: two years after my experience I rode my motorcycle from Florida to out west to Sturgis motorcycle rally and back through Canada and home to Florida. No one knew I had a colostomy and quite frankly, one never needs to use a public toilet again. I consider this in and of itself, a plus.
Keep your head up, talk with many different people and began to live your life again. You are in my, our thoughts and write back anytime. Just don't quite now.
Jofree