Stoma 911!!!

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Permalink Reply by Affetuoso on June 20, 2008 at 8:22am

Hi Amanda.

As a male I have clearly not experienced what you are going through, but what I can say is "hang tough!". The people here will support you in so many ways believe me.

As a medical professional myself I am frequently disgusted at the lazy attitude of many doctors. I must emphasise that word "some" as I don't want to generalise.

I guess the only advice I can possibly offer is to maintain outstanding hygeine to prevent any infection into the urinay tract as well. It sounds as though you have enough to deal with as it is. You will need to talk to a doctor you trust about the options for repair of your fistula. Usually this is a surgical issue.....but speak to your doctor.

In the meantime, my thoughts and prayers are with you. I truly hope this day finds you smiling big.

Take care of you.

Tony (aka Affetuoso)

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Permalink Reply by Jen Puglise on June 20, 2008 at 11:05am

Amanda- I have a colostomy due to colon cancer. Are you talking about a stoma on your stomach? I'd be more than willing to help you with your troubles as I've been with a stoma for a year. I sometimes have blood in my stool and generally loose stool. Do hyou need help with figuring out how to harden it? Here to help- Jen

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Permalink Reply by Amanda J Miller on June 20, 2008 at 6:53pm

Jen- I have been luck enough to have 2 roommates in the hospital with stomas, too. So I know just how valuable your help will be to me! My stoma is in my transverse colon. I just got back from my colonoscopy, and they found over 1000 polyps in my descending colon. o, much to my original dismay, my stoma is definately permanent. (I say "original" because after having it for 6 weeks, I can definatly see a difference in how I function and feel... MUCH BETTER!!) My ascending looks beatuiful, for the time being. I was finally diagnosed with FAP, a hereditary gene that forms precancerous polyps in the colon and rectum. Obviously the source of my cancer! I am glad to have come this far, but I'm still struggling to see the light at the end of the tunnel. I have to be checked every year, at least, for more polyps, as well as any affects to the brain, thyroid, bone, skin, and teeth, since my case is already advanced to stage 2 cancer, and growing down towards my lymph nodes. One thing I do REALLY want to ask someone, is how do you get over the "awkwardness" of the colostomy to be intimate again? (Something I REALLY want to be able to do again!)I know he says otherwise, but I have a hard time dealing with how my husband will accept intimacy back in our marriage. He already changes my bag every week for me. (He was the first one to ask to do it!) But, I'm having a hard time getting over it myself. I know you can get those heartties products, but they are SSOOO expensive!!! Do you have any suggestions of products, or how to get myself OK with my appearance? Thank you for being willing to help!!! -Amanda

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Permalink Reply by Jen Puglise on June 25, 2008 at 3:57pm

Amanda- I completely understand your concerns. Here we are young women who should be able to enjoy all that goes with being married and now we have a bag hanging off our abdomens. First off, your husband is awesome! It sounds like he is supportive and compassionate. Congrats for marrying one of the good ones. My husband has always been supportive and says the bag doesn't bother him. The thing is, is that it bothers ME. So I wear a tight, long tanktop with my bag folded up so that I can't see it. I use those hair clips that when pushed open and then you push again and they close. They're made by Goodie and gymnasts wear them. The truest answer is that you have to get over your inhibitions. I had a hard time getting over it, but mt husband greatly appreciated it LOL! And being buried under the sheets always help me...How come your colostomy is permanant? Is is to make it easier to check for cancer? I am astounded at how many polyps were found. Wow! My tumor was in the sigmoid, but after a colonoscopy I had no polyps or tumors. Not that I got away that lucky. I am stage 4 colon cancer, because my cancer spread to my liver and ovaries. I will keep you in my prayers and please ask me anything, I've been doing this for a year and have learned many things. I hope this helps. love- Jen

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Permalink Reply by Amanda J Miller on June 25, 2008 at 7:54pm

Jen-I got some hopefully great news! If everything goes well, I might be able to get my colostomy changed into an internal J-pouch. I'm trying hard not to get my hopes up, but it would be nice! You are SO right... I need desperatly to get comfortable with myself! I just hope that day comes soon! In the mean time, I'm going to try going to a counselor about how to deal with my condition. I'm having a hard time facing the fact that my disorder has no treatments, other than an entire colectomy, and also there is no cure! This does tend to get quite frustrating!
Thanks SO much for the advice!!!!
love-Amanda

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