I am a 65 yr old woman with low dysplasia after a history of colitis. I am probably having J-pouch surgery as soon as a month from now and would love the chance to speak with you about your experience before / during the surgeries / and how you are living today. I am freaked out and know that listening to your experience will be helpful. Please feel free to find me: Carolebolger@gmail.com. THANK YOU so much!
I had j pouch surgery in 2017. I wish I had done it 10 years ago. I had the 2 part surgery with a ileostomy for 8 weeks after the first surgery. It took about 2 weeks to really get out and going after the first surgery but the ileostomy was a breeze. If something happens to my j pouch, I would live with an ileostomy in a heart beat. After 8 weeks, I had the take down surgery. It is not as intense as the first surgery but then you have to train the dragon as my surgeon called it. It takes about 2 weeks for your j pouch to learn its job. I had a lot of butt burn during this time. Make sure you have the necessary ointments. (destin, A&D, etc) After 2 weeks, everything was good. I can eat anything now. Like I said earlier, I just wish I had done it sooner
Hello RondaC. Thank you thank you for such a positive report. I can't believe you would find it okay to live with an ileostomy bag for life, I am single and starting to date and for this reason I am very upset about dealing with this issue. But the J-pouch may work fine so I'll focus on that outcome for now. You sure had a seamless surgery time...only 8 weeks between surgeries. I was told 12. Appreciate the tips about burning and ointments and yes, i plan to collect all the info I can and you have been helpful. Now that you are a few years along with the J-pouch does living with it feel normal - no issues - back to life as usual? This is my biggest concern.....
Thank you RondaC!!!
yes back to life as usual. A few hiccups now and then. I did have a flare of pouchitis but got rid of it. I can see why you wouldn't like a ileostomy at a young age but I am in my 50's so no big deal. When I had the ileostomy, I enjoyed the freedom of not making sure I knew where the bathroom is located everywhere I went. The supplies that are out there for the ileostomy made having one much easier.
I had a colectomy in 2015 after getting very sick from UC complications. It's been a journey, I had to have 3 surgeries for my jpouch. When I was in the ileostomy stage I found it very doable. It was so much better than being sick with UC! My husband didn't find my bag especially attractive so I would try to keep it covered in bed. Don't get me wrong; he was very accepting, helpful and patient with me! He's the best! I also started to use the bags that weren't see-through. After the takedown and starting to use my new pouch, there is some flash-back of having UC, but have patience with your body! I learned to use the calmoseptine lotion for butt burn, available at Walmart without a prescription but you have to ask for it at the pharmacy. I was also careful with my diet especially at first to give my gut a chance to heal. It's a bit touch and go. I'm still learning about vitamin supplements and probiotics but I think they are important for my health over all. Also I drink lots of water every single day. The days we have lots going on I find myself getting dehydrated quickly. One other item I don't ever want to live without again is a bidet seat for my toilet. I rarely get butt burn anymore and miss that thing when I'm away too long! There have been bumps along the way with my jpouch but I went through hell with my UC so life is so much better now! I too, know that I could handle having an ileostomy again if I had too but would be really sad if I had to lose my pouch. I wish you the best and know that you aren't alone in this journey.
Hello elk and thank you so much for responding to my query. I appreciate your tips and am making a list of things to ask, things to get and things to be careful about. Glad that this surgery has made you feel so much better. The weird thing for me is I feel fine. No UC for 20 years but I've developed low dysplasia so prob need to have this surgery. It is a tough thing to accept but understand it is a major cancer preventative. Best to you and thanks again!
I decided to go ahead with my surgeries when I was 56 rather than try a last ditch treatment with Remicade. I figured even if it worked, that would just be a postponement of eventual surgery. I think it's better to get the surgery when you are as young/healthy as possible. Even though I was much sicker than you, I think the same logic applies.
My experience was difficult, I guess I fell into the minority that have issues post-surgery. I was supposed to have a two-stage surgery, but ended up with four.
The first removed the colon and gave me an end-ileostomy. That means the end of the small intestine exits through the lower abdomen. You have to wear a plastic pouch that attaches to a flange. The flange adheres to the skin surrounding the ileostomy. The plastic pouch opens at the bottom so you can empty it (for me that was every couple of hours). Then you need to change the adhesive flange. Some people can go 5 days or so between changes. I was not so lucky, and with the end ileostomy I had to change at least every other day. Every day would have been better, but my insurance only provided 20 appliances a month. Since the entire large intestine is gone, you don't pass fecal matter through the anus. However, there was still some mucus that came out every day or two. No big deal. I did pretty well with the end ileostomy, and got back to work and exercise very quickly.
After three months I went for the second and final surgery. The end of the small intestine was turned into a sort of a 'sock' called the j-pouch, and was attached to my anus again. My bowels did not want to 'turn on' again after surgery (this is called ileus) so I had to hang out in the hospital with no food or liquid until there was action. After a few days, one of the interns gave me a stick of gum to chew and within two hours my bowel was active. So I was advanced to a liquid diet, and had hopes for going home soon. But on the 5th day after surgery I got peritonitis. That is a terrible infection the the abdomen that came from a leak of bowel liquid out of the intestines. I had to have an emergency third surgery to detach the j pouch , clean out my insides, and create a loop ileostomy. Since the end of the small intestine was now sewn into a 'sock', it couldn't come out the adbomen. So instead a loop of intestine from further up is pulled out of the abdomen, and you wear the ostomy appliance stuck over that. Unfortunately the loop is not nice and round like the end ileostomy, and I had a horrible time getting the flanges to seal properly. I ended up with terrible skin erosion that had me in tears daily for weeks. I had to work from home, but did manage to get back to work and exercise quickly after I got home from 11 days in the hospital.
After a couple of months with the horrid loop ileostomy I went for a test that verified my pouch did not leak and I was able to get a fourth and final surgery to reattach the j pouch. Getting rid of the ostomy pouch was wonderful. I recovered well from the final surgery and yet again got quickly back into my work and exercise routines. Life with the jpouch takes getting used to, you need to be scrupulous with cleaning after every bowel movement. And there can be lots of those. Some people take fiber supplements to thicken the output, but that makes it hard for me to empty the j-pouch. But I learned to manage myself, and you will too.
I had surgery Sept 3, 2019 to remove my colon. It ruptured after 18 years of UC. That surgery I had an end ileostomy. I had been very sick so the first few weeks were rough, both getting strength back and emotionally. But I was doing well, eating anything within a month. Surgery 2 to create j-pouch was Dec 27. Loop ileostomy..ugh no fun. It leaked a lot for me, which I didn't experience with the end ileostomy. Then Feb 26 was my takedowm. So I'm still fairly new with my j-pouch. Recovery has been somewhat steady but I'm not one that was out and about in 2 weeks. For a few months I struggled with difficulty emptying the pouch and constant rectal pressure. I'm coming up on three months and I finally feel like I'm turning the corner. I can empty much easier, although now I'm starting to work on frequency. I go about 12 times per day but have not been using immodium or anything like that so I'm starting to experiment there. I rarely get butt burn and am expanding my diet now. I'm fortunate to work from home. My main struggle right now is trying to gain weight. I'm 5'7 and 114 lbs, and would love to hit 130! A few words of advice I took from this site are measure progress in weeks or months, it does get better. I'm not where I want to be but I know I will continue to improve with time. And don't be afraid of food. You have to try stuff to see what works for you. Best of luck!
Dear Girlunky - Thank you so much for your story. Happy to hear you stuck it out and have a pretty normal life now. I am taking good notes about all this. I hear you that because of the burning you need to always clean up well with ointment and such. This has been a real help. Best, Carole
Dear KMiller - A very realistic story of your ups and downs. I appreciate hearing about progress a day at a time and to measure recovery in weeks and months. I guess I plan to make room for at least 3 months after my 2nd and final surgery to get somewhere a new normal. When you guys all refer to "emptying the pouch" is this the same as emptying my colon? Was not sure what this meant...Thank you for taking the time to respond. Super appreciative! Best, Carole
My Dr. said it takes a full year to get healed & adapted to the jpouch. Your body changes the way the small intestine works a bit when the colon is gone. But in three months you should be doing most everything. Emptying the jpouch is a bit different than before although you still sit on the toilet. It's more a matter of relaxing the anal muscles to let it out than to actually push. Be patient, it takes a while. I found that going then standing up, bending side to side and front to back , then sittting down again and going again helped. Taking a hot bath would also help me get relaxed to empty better - I did lots of in-and-out-and-in-and-out baths.
Emptying the pouch...not quite the same. Agree its a matter of relaxing. Ive struggled with that and tend to spasm some when I'm on the toilet, but like everything else that's better with time. The beginning for me was very frustrating and discouraging but things are so much better now. Still not perfect, but easier to empty. So just hang in there, be patient. This group has been a terrific resource!