Update on my new colostomy: Overcoming challenges and finding support

Jul 15, 2016 7:09 pm

June 6th was a terrible day - I was in a depression that was just horrible. I came here and asked about having a new colostomy and asked how you all coped. Your responses helped me tremendously. Our cases are different but my takeaway was that even with our differences we have much in common. The questions, the fears, the uncertainty...we all have it. To know that I was not alone gave me a feeling of security....sort of like being given a pair of cyber warm fuzzy slippers.

Updates: We have finally figured out how to stop the leaking - with the help of a wonderful visiting nurse and my husband (he's a retired engineer) they came up with a solution. Apparently I have an "inny/innie" and needed a convex flange...then we needed to use the paste as well. We tried putting one flattened layer of paste (I call it caulk) around the stoma...that didn't work. So now we put a circle of caulk around the stoma (like toothpaste) and an identical one on the flange - the two connect and the bond has not failed once! I have to leave it on for at least 48 hours or else it's a pain to remove the old caulk off of my skin...I am now on a Monday/Friday change schedule. So far so good. I change the pouch on Wednesday. For me this works.

The incision infection, while cleared up, is still draining serous/sanguinous....I am still in the warm shower twice a day to help with the intentional healing...it's getting better - it is getting smaller and I use the time in the shower to meditate or sing songs out LOUD!

My colostomy (due to perforated diverticulosis) was on April 28th. I am going for my presurgical colonoscopy in another two weeks. Since there was no time to give a look-see preop in April (surgery was done emergently) the surgeon wants to see what's going on inside and if there are issues that need to be addressed, to take care of them now.

I am exhausted - I turn 65 in October and I've always been relatively active. I could easily walk two miles- not quickly but I could do it. I find that I am deconditioned from the convalescence....so I am trying to increase my activity. However, after I get home from my walk (in the mall) I come home exhausted and need to sleep for 2 hours or so.

My goal is to be in better shape physically and mentally for the reversal surgery. I've lost (unintentionally) about 25 pounds and have been taken off two of my blood pressure meds (yeah!!!) - I am now only on one.

My next step is the reversal - I've read some nightmare stories, however, each of us is different and I am optimistic that it will all work out OK.

Actually, my very next step is the colonoscopy - I never had one before but I know about bowel preps. This should be interesting (I say with a snicker)...

I cannot thank you enough for letting me know that my feelings were "normal" and that eventually I would reach a level of normalcy. My new normal is no longer waking up and thinking right off "was this a nightmare?"....that's over because I have come to accept that this is what happened and now I am dealing with it.

Thanks again!

Jul 15, 2016 8:58 pm

Hello emra. Thanks so much for the update. I'm always interested in what 'engineers' have to say about our problems because if you think like an engineer, there are often quite simple solutions to the practical problems we face. The social, emotional and psychological problem are a whole different ballgame but it sounds as if you are also getting the hang of those as well. I hope everything goes wel for you with regard to the colonoscopy and the reversal when it happens. They are not all disasters but often when people have a success and get back to a 'normal' life  they have no need to use this site anymore. I think this is a pity because we really need the postive feedback as well as the negative. Maybe when yours is successful you will take the time to let us know.

Best wishes


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Jul 15, 2016 9:46 pm

Thanks, Bill. I concur with your assertion that folks with positive reversals may not be as likely to come back to the board and post. I will come back and report my positive result because there have got to be others out there with a need to know. Based on my research, takedowns of ileostomies seem to have the most problems. Mine is a colostomy, and I only had 4" removed. My surgeon is a general surgeon who was called in by the ER staff...if I had my choice, it would have been a colorectal surgeon, but there was no time as I was sinking fast. Yet he saved my life, and my regular MD had positive things to say about him as well. So now I am coming to the crossroad...I have become more accustomed to my appliance...if I had to stay this way, I would be OK with that too. This is not the horror I erroneously thought it would be...not at all. My complete acceptance of my changed status puts me in a position of having a choice which brings its own challenge...do I go under the knife again or just get on with my life?

Jul 16, 2016 7:21 am

Hello Emra. I know what you mean about having a choice. Given the circumstances of my own colostomy, I decided that I'd be better off keeping it and not deluding myself that having a reversal would necessarily fix the original problem. I can well understand why people don't want this thing stuck on their stomach but when considering the alternatives the stoma doesn't seem too bad at all.

Best wishes


Jul 16, 2016 2:16 pm

Hi Emra,

Thank you for your update. It was very inspirational. Best wishes for the future and keep thinking positive and understanding the possibilities makes acceptance of the outcome easier to deal with.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Jul 16, 2016 4:38 pm

Hi Emra, glad to read that you are feeling better and gaining your strength back. I had my surgery in 2013 and it took a good two years before I really felt good. Some days I get tired, especially with the warmer weather and dehydration. I take it slowly but try to keep moving forward. Take care and best wishes to you. LadyHope

Jul 17, 2016 4:45 pm

Thank you for sharing about the warm weather and dehydration. I had not thought about that and it became quickly apparent during our recent hot spell. I have had to consciously increase my water....a lot. Thanks again for sharing.