Considering colostomy due to paralyzed bowels. Need advice.

Considering just going ahead with colostomy. I've been dealing with my condition since April, and after multiple tests, doctors finally said my bowels were paralyzed. I've gone through multiple procedures and medications. I have now lost a total of 20 lbs. I went to the family doctor 2 weeks ago and found I had lost 6 lbs in a month. My friends and family are putting a lot of that blame on me for not eating the way I should. I try to explain how I feel, but they just don't understand the battle I'm going through with my body. I am taking Linzess but only take it every 3-4 days because when I take it, everything I consume goes straight through me. But if I don't take it, I don't have a movement until I do take it. I'm tired of having to depend on a pill for my body to function and tired of not being able to leave the house when I take it in fear of having an accident. Please help and give me any insight you may have. Thanks!

Hello Beth1985.

After reading your post a couple of times, I see that you kind of answered your own question. The adjustment to a colostomy is a small challenge. But on this site, there is a lot of support and people who will listen more than open their mouths when you need to vent. I had to choose between a reversal and staying with the bag. I chose to stay with my bag because I still have Hirschsprung's in my intestine. The doctor was wanting to do the reversal and kept pushing for it. I brought up the facts of what if my intestine dies again, I get sick, and then I still end up the way I am. Or I go through with what you want and take a chance of not leaving the house because I have no control of when I poop. I have had my colostomy for 7 years at this time when I had another problem occur. One of the things you have to remember is that it's your body. You do what you need to do. The choice you make is done with no pressure and what is best for you.

Hello Beth 1985.

Have you tried taking anything natural to have a BM? Eating prunes helped my whole family, who were all having problems going regularly to the bathroom. I remember my mom would make like a sauce, with dry prunes in water boiling and then on the blender, and kept it in the fridge. One tablespoon a day was enough for everybody to be regular. I have never had that problem, but now that I have a colostomy, if my output is too hard, one prune would help a lot. And choosing to have the operation, if it would help you on your overall health, it's worth it. I had my colostomy because of diverticulitis. The recovery was not easy, but once I found the proper system, life is almost back to normal. Think of you, and how you feel.

Hi Beth, you're young and I certainly understand that this is a really difficult decision. I suffered with colonic inertia for many years and it progressed to a point that I wasn't able to go for around 2 weeks. Along with pelvic floor issues, I was totally miserable. I tried EVERYTHING, natural and otherwise. Saying your bowel is paralyzed makes me curious. Have they had you do the sitz marker test? If the bowel/colon/large intestine is not working, why would they think a colectomy would answer the problem. I had a "Loop Ileostomy" which theoretically could give the large intestine a chance to heal and then entertain a reversal. As it turned out, I ended up having it revised to an end ileostomy with the colon removed. I'm 65... if I would have been your age, I may have fought harder to reverse it. At this point I'm so much more comfortable and able to do things than I was when the constipation got so bad ~ haha, I personally don't think I'm as cranky either :) My husband might disagree but that's MY story and I'm stickin' to it!

Nonetheless, good luck to you! If you have any questions, just give me a shout! Vicki

Hi Beth, I have been struggling with bowel problems for a very long time. I have undergone several surgeries and other procedures to correct it. All of these have led me to become incontinent and I now have to wear Depends. I have very little to no control of my bowels and suffer tremendous pain. I have elected for a colostomy hoping to get some sort of normalcy and control back in my life. I am finally scheduled to undergo surgery on the 16th and look forward to it. I have made this decision through much research and with advice from my medical care personnel, friends, family, and this community. I have found a lot of great support and friendly, caring people here. I wish you well with whatever decision you make, but just know, you really have to do what suits you the best. Life is full of difficult decisions but there are many support groups when you can't find that support around you. Surround yourself with the support you need.

Words of Encouragement from Ostomy Advocates I Hollister

Hi Beth....I have had my ileostomy for more than 50 years, since I was 15 years old. After 4 years of medical treatments that were destroying my body, my parents agreed to the surgery. Until then, I didn't even know it was available. I accepted the surgery readily because it meant I could go back to school and have a real life again. I never regretted the decision, and when I was 19, I insisted that they remove the diseased rectum which never healed. I was tired of all the medication, enemas, pain, and hospitalization. Question your doctor as to "why" a colostomy. That means you'll still have the colon, which doesn't work well to begin with. With an ileostomy....(colon removed or not), you're going to bypass the colon... and the ileum (end of the small intestine) will be brought out onto the abdominal wall to form a stoma. The difference in the two procedures is that with the ileostomy, there's no control and no irrigation. Feces runs continuously, is more liquid, but it empties into a pouch you wear....and you just have to empty the pouch. I change that about once a week. There is a learning curve about how to manage your ostomy, but that's not as difficult as it sounds. It takes some time and patience, but no more pain or being stuck in the house. A colostomy is a little different, and depending on how much of it is still working, you might be able to irrigate (once a day) and will know exactly when you evacuate. It's all what you get used to. Making no decision is a decision.....but choosing one of the procedures may improve your life. Discuss options for being "rehooked" eventually if you have a colostomy. Best of luck to you. Marsha