When I was 16 weeks pregnant my colon ruptured and 3 days later doctors realized what happened and I received a total colectomy. I had an illestomy for 6 months before they started the take down process. I was allergic to the ostomy products and couldn't get any bags to stick so I had constant leaking which basically took off layers of my skin. Finally I got a j-pouch 6 weeks later and ever since I've had nothing but issues. Im 24 year old female and am looking for someone who can relate to me or give me advice or even anyone who has questions for me. My husband is great but he has no idea what im going through and it would just be nice to talk it over with someone in my shoes.
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I am not a new mother and I am way older than you but I am female. It might be helpful if you describe the issues that you are experiencing. J-pouchers all have issues to one extent or another so I am very sure there are young women on this site who can share your pain and perhaps offer you helpful and comforting suggestions.
Hi there, it sounds like you've had an especially rough transition to having a jpouch! I can't say I can relate to your whole experience other than being a new mom and having a jpouch while pregnant. Did you have the ostomy while pregnant?
Hi
I know what u mean, doesn't matter how supportive people are, they will never really understand what it's like to be us and what we go though. I'm happy to offer a friendly ear if u need
I know what u mean, doesn't matter how supportive people are, they will never really understand what it's like to be us and what we go though. I'm happy to offer a friendly ear if u need
I agree with lou lou no one understands your pain. We all can relate. I also am not a new mom. I am older. I have had j-pouch for 4 years now an I am still learning how to deal. I don't know exactly what kind of problems you are having. If you list some of your problems you have many of us that may be able to help. Feel better Grace
Hi! My name is Krystina and am 27 years old. I was diagnosed with rectal cancer last year. I have gone through radiation and chemotherapy. I had a total colectomy, temp ileostomy, and a JPouch. I have been living with the Jpouch for about 6 months. Like you, I have had nothing but issues. I have constant diarrhea no matter what I eat. Along with deep cuts all around my anal area. So every time I have a bowel movement it is extremely painful. I am currently taking morphine for the pain but it just takes the edge off. Are these any issues anyone else is facing? I'm most interested in the cuts,like anal fissures, is how I would describe them. Thank you for any feedback or sharing your story with me!
are you taking anything to slow down your digestion? I didn't have the same diagnosis. I have UC Take down j-pouch four years ago. I know that after I was sent home I also had very painful diarrhea with burning and bleeding. I was told by another J-pouch patient a list of medications to help with the burning and runs. Ask your doctor about this list as I did Metamucil or Fibercon to thicken things up lomotil for diarrhea that slows the digestive process, but cream such as AD ointment,balmex has no odor, mesalamine rectal suspension USP enema, Lidocaine hydrocortisone cream that inserted in the rectum numbs some of the pain and healing agent. Always ask your doctor and he will let you know if it is right for you I also took Percocet for pain and for bad cases of pouchitis. I am sure that there are other j-pouchers can offer some help. I know for myself and some of us it is a battle every day. And also eat very bland I am sure you know that. I hope I was able to help in some way It's not easy. Hope you feel better soon Grace
Thank you Grace! I am on lomitol twice a day but doesn't seem to help. I think my cuts aren't healing due to having radiation. I don't think enough blood flow is getting down there because the radiation damaged all the tissue. I will look into that rectal suspension enema, was that for pain or healing? Do you or anyone have a bowel movement that's consistent? Or is it still after four years sparatic?
Have you seen your Dr. for the fissures? I had them and used nitroglycerine cream and bella donna suppositories. I was also told to try to keep movements on the loose side to avoid to much pressure when going. Hope this helps.
Hi Kristina I hope you are feeling better. Yes the enemas are for pain and healing Ask your gastro. What is good for me might not be good for you let me know how you make out Feel better Grace
Mrskpollard, what issues are you having with your j-pouch? I can definitely relate to you on a few things being that I was 19 weeks pregnant when I had my emergency subtotal colectomy. Dealing with my first pregnancy and then major surgery and a ileostomy on top of that was crazy. My daughter just turned one and I am still amazed at how she thrived despite everything I went through. She was in the NICU for a week for hypoglycemia which may have been due to me taking steroids for my UC, but she was fine after that first week. Life with a j-pouch is still an adjustment, but it's way better than the ileostomy...at least for me.
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