Pelvic Pouch vs. Colostomy Bag: Seeking Advice

Hello, my name is Dee. This is my first time writing in a forum, but I am so in need of someone to talk to and to possibly give me some advice. In 2002, I became very ill, which I was told at the time was nothing, although I was passing a large amount of blood and couldn't keep anything down. I was so bloated that I was going to the gym with no luck of losing those 5 extra pounds. Well, I ended up in the emergency room with every possible test done. I was told that my main organs were shutting down and I was dehydrated. After 2 weeks of tests, they were rushing me into surgery to remove my large intestine. I was told that it was so enlarged that it was possibly going to rupture.
When I woke up from surgery and was placed in a room, I looked at my abdomen and was confused by this bag (pouch) attached to my skin???? No one explained anything to me, but I was feeling good other than the initial pain from surgery with having 35 staples to my wound area.
I was told that I had Ulcerative Colitis and that I had a mega toxic colon so that they had to remove my whole colon and performed an ileostomy. At that time, I was told that in time I could have a procedure done called a pelvic pouch (reversal). I was so excited that I would no longer need this pouch and that I would be able to function the normal way!!

After this procedure, I was living in the bathroom 80% of the time, and my weight had gone down to 88 lbs. I was very sick and had to have 2 blood transfusions. I had such abdominal pain it was terrible. I ended up going to the emergency room by ambulance and was told that I had a tear in my pouch and that feces had been going through my body for a long time. This caused an abscess on my ovary, which had to be removed as well. I once again have an ileostomy. But again, I was told that once the pouch healed, I could have it reattached. But now my question to my fellow ostomates is that I have been fighting an infection somewhere in my abdomen for 3 years, yes, 3 years, and my surgeon figures that I should just take down the pelvic pouch and close the rectum/anus and live with the colostomy bag. Understand I'm not opposed to that altogether; it's just that it seems to me like a quick decision on their part.
Has anyone else been in this predicament??? I have a consultation in December to decide.
This has to be one of the hardest decisions of my life. Please, if someone can help,
Thank you from the bottom of my heart...
Dee

Dear Dee-



I haven't been through the travails you are going through. I am so very sorry you have been through so much. I completely understand how this feels like the biggest decision of your life.



I don't have any wisdom to offer as cancer took most of my decision making options away from me. In times such as these, I always say go with your gut instinct. You are right in researching your options and contacting people via the internet. Have faith in yourself!



I wish you the best of luck.



Maggie Mae

Dear Dee,
     You have certainly been through the wringer. I had a different journey, although it covered the same years, from 2001-2002 until the present. I feel like I lived in the bathroom for most of that time. At one point, I was working with a gastroenterologist to find out why I was suffering so much from diarrhea. She was convinced I had Ulcerative Colitis or Crohn's and put me on all the meds that help people with this disease. Nothing worked. She became angry with me and told me I needed a complete colectomy and sent me to the surgeon that worked with her. I saw him, and he agreed that I needed my entire colon out and he would make the internal pouch. It meant three different operations, and he gave me an 80% chance of success with the pouch. Some people, he said, developed problems with the pouch resulting in diarrhea, need for anti-diarrhea medication, pain, etc., in short, exactly like my present state. After he examined me and saw what a small rectal capacity I had, he dropped the success rate to 50%. I felt, like you, that I was being pushed into something. I went to see my surgeon, and he confirmed the chancy success rate with the pouch. In his opinion, the operation was asking the body to do something unnatural: asking part of the body to function as a colon and a rectum. I then went to a different gastroenterologist who said I should forget the pouch, that it would never work for me. He also doubted that I had U.C. or Crohn's. I had been fine until age 47 when they discovered a cancerous tumor in my rectum. I worked with him for a while, and nothing helped again. The story goes on: hyperbaric oxygen therapy, more surgery to rebuild my rectum, nothing helped. Finally, last August I had a permanent colostomy done. For the first time in all these years, I feel I have some control over my life. The suffering, the exhausting of doctors and moving to the next, all of it is over, and it is fine. It is a tough decision to make. I went into therapy to work out my feelings about this. I had fought this for so long. I felt like a failure having this done. But it has been the right decision for me. Don't know if this helps, I hope it does. Good luck to you.

Dee I
I understand how you feel as I had UC from age 12 to 29! Nothing helped, and back then the medications were not as available as today. Plus, all the side effects of cortisone, etc. The pain was unbearable. I lived in the bathroom 20 to 30 times a day and all night! I got down to 89 pounds; my internist said I needed an ileostomy. This is different from a colostomy—you do not irrigate at all; it works on its own. Long story short, I had a permanent ileostomy and rectum removed 32 years ago, and it was the best thing for me. I have had a job for 22 years, just retired, can go and do anything now without worrying where the bathroom is, never get sick. You just have to decide if you want to be better or stay sick. If the doctor says this will CURE you, it is not that bad, and no one knows unless I tell them. I went from 89 pounds on the day of surgery to 160 pounds 3 months after and had to go on Weight Watchers to get to 130. I had gotten so used to feeling awful I just did not realize how sick I was! I have been fine for 32 years with my ileostomy, just find the correct appliance to wear, and it's okay. I am now 61 years old and have had the ileostomy half my life, and do not think about it now; it's just who I am. Plus, I am healthy and enjoy life. Just wanted to let you know there is life after ostomy surgery, and it is so much better.
Sooziq

I just want to give a huge thank you to those who replied to my post... I think I am going to love this site and will make a lot of new friends with whom we definitely have something in common. You have given me something to think about, and I know I will make the right decision for me. A lot of times, my family and friends ask me how I deal with this journey, and my reply is always that someone else is worse off than me. I am so blessed just to be able to walk, talk, eat, and hang out with my husband and children. You can always find me in the bleachers cheering my kids on at their sports.
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Huge hugs to you all.
Sincerely, Dee

Words of Encouragement from Ostomy Advocates I Hollister

Dear Dee

Please don't make any hasty decisions. You still have time to discuss. I was given a permanent colostomy and I have never gotten over the feeling of being cheated. If everything is clearly explained to you, then you will be in a better position to accept life with a permanent colostomy. Take care and all the very best. Pray that all goes well for you.

Hi Dee, I also had UC for over 3 years and finally had my colon removed and have had an ileostomy for over 3 years. I found that if you find the right "system" of wafer, seal ring, pouch, etc., you can lead a relatively normal, happy life. I know an acquaintance who also had UC, went through the colectomy, and was given an internal pouch rather than an ileostomy. It turned out to be a nightmarish mistake, much as yours sounds. From my own experience and conversations with others, an ileostomy is far preferable to an internal pouch. As for myself, I recently had the first of 2 surgeries to reconnect me with a J-Pouch. I still have one more surgery to complete the process, but from all whom I've talked with, the J-Pouch is far more preferable than an internal pouch. I suggest you discuss the possibility of a J-Pouch with your surgeon. If he/she isn't trained to do them, find a surgeon who is and discuss it with him/her. Good luck.
Bamatex

Dee, I hope this helps, Mike http://www.mayoclinic.com/health/ulcerative-colitis/DS00598

Dee05, just wanted to add my bit too. In 2004, I woke up in ICU. I'd been there for 3 weeks, hanging in the balance between this life and the next. My bowel exploded into my stomach. Seems I have Crohn's, and they told me—4 weeks later—the day before that I was to get this ileostomy. What a shock. Right away, I was told it was only for 3 months while the bowel healed. Well, that turned from 3 to 6 to 9 to 12 months. The specialists had me booked in; all I needed was for the surgeon to agree and say, "Let's do this." I hated the thing and couldn't wait. She took one look at my files and at me, looked me in the eye, and said, "NO." She refused to operate, saying that for one, I didn't have enough bowel left to let me lead a normal life and I'd be back within 2 years to get the bag back on. Plus, I was not quite right in the head yet...lol. I was thinking to myself...why isn't my hand slapping her? I hated hearing her say that. I knew I was crying but couldn't stop. I left that room totally devastated. Took 24 hours and something made me do more research—find others in the same predicament and see how their reversals went. (I didn't even own a PC, so here was out of the question). To cut a long story short, the response was amazing and a big eye-opener. Example: Out of 50 people who contacted me—who had Crohn's (I really believe U.C. has something to do with Crohn's, but I'm not a doctor) and had had the reversal—ONLY 4 of them stayed without a bag on them. I had one lady say, before hello even, "Please don't have the reversal." Long story short, I didn't get it. Felt the weight just lift off my shoulders, even after the surgeon changed her mind too. But next for me is a total colectomy, along with the anus. (And aren't I putting that off). So, what I'm getting at is find out as much as you can, from both sides of the coin. Know as much as you can, i.e., can this spread and make for more small ops? Is this option the only one? How long have you got till this is done? Ask them, pry it from them—from doctors/specialists/others on here and such. But once you know all you need—it makes it easier to make the decision, and you will know which is the right one—a gut feeling. And whatever you choose will be the right one for you. And if you're not sick at the moment, then time is on your side. It's a big step, and I pray you don't struggle with this much. I haven't looked back; I'm so glad I didn't go through all that drama of reversals. That's just my experiences and thoughts. Hope it can be of some help. Take care and know our thoughts are with you. Tara

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You have a great outlook on things. I could have been bitter about a 10 year misdiagnosis. I figured instead of getting even..........live my life. Show them this will not get the best of me. I was cracking jokes before and after surgery, and I left my team in stitches (lol). The nurses loved my attitude, and were surprised I was up and walking within 18 hours of surgery. I even got my roommate up and walking. We were both discharged within 5 minutes of one another, and he was there 2 weeks longer than me.