I’m a 46 yr old female. First, please forgive me for not knowing the proper names for the procedures I had and terms used. I was so young and naive that I let my parents take care of everything. I was diagnosed with Crohns and I had an anal fistula that had been tunneling for years causing all my pain and infection.
The first 2 surgeries was to remove the infected bowel and my rectum and I had an ileostomy. The 3rd surgery was putting everything I had left back together and j-pouch surgery. After 8 days I still had not had a bowel movement, on day 9 the dr. walked in and he was obviously frustrated because I still had not gone to the bathroom. I knew in my gut something wasn’t right at all, I may have been young and ignorant about my condition but I felt off from day 1. The dr. left, came right back with an enema, poured out the liquid that was in it and filled it back up with hand soap and hot water and finally I went to the bathroom. I’m so sorry if this sounds awful but the stool was hard as rock and it wasn’t in one solid piece but in pieces. Each piece was like a hard golf ball. The nurse had to give me petroleum jelly to use after the first part of stool came out because it was so miserable trying to pass these.
That was almost 23 years ago and no matter what, it has never gotten better. Because of insurance the surgeon almost immediately stopped seeing me. For years I thought this was normal until the internet came around and I saw that it wasn’t. Because I was scared and didn’t have the money I kept using the enema and petroleum jelly method for every bowel movement. I’ve tried fiber.. it makes it worse, stool softener.. they don’t work at all. I only drink water, I have completely cut dairy from my diet because it makes it worse. I have learned throughout the years that laxatives and mag. citrate and laxatives are the only things that work. It’s almost like I have a place inside me where all the stool goes to build up and every 4 or 5 days so many pieces are released, I always know when it’s time to take an enema when I set down. If there is stool ready to be evacuated it hurts to set and I know it’s time to go.
I saw a dr. a couple years ago and told him all of this, he gave me a script for steroids that were in enema form. I used them till they were gone and nothing changed. Now, I’m tired of it. I started this when I was a kid and now I’m 46 years old and it’s finally gotten the best of me. Several times, I tried not using an enema or anything else. Without the laxatives the stool stays wherever it is setting, so for 14 days I didn’t have a bowel movement and no stool moved down far enough for a enema to even work so I had to take laxatives for 6 days just to get the stool to move far enough down for the enema to work.
I know I have gone on and on but my son’s wife just had a baby a few months ago, I keep her 4 days a week. Three days a week I take care of mother who just had hip replacement, I am beyond tired when I should be living my best life. What makes things even harder is it’s a 2 or 3 hour ordeal every single time I use the bathroom.
I don’t think my j pouch ever worked correctly. In the last 6 months I’ve started bleeding also and it’s not a spot or just some when I wipe. I bleed before using an enema, after using one and on the days I don’t use one. You would think it would be watered down from the enema but it’s always worse after I go. When I’m done I know to set longer even after I’m cleaned up because a couple minutes after it starts back up heavy for about 5 minutes then it will lighten back up, if I’m setting on the commode for any reason at all then I’m bleeding.
when left the hospital all those years ago the dr. told me if the pouch failed then my only option was a bag on my side for the rest of my life.. those were his exact words. Today, if it could improve my quality of life and my mental anguish I would do it today.
Has anyone dealt with anything like I’ve been through? I have been reading posts all day and you are such an amazing group of people, I am desperate to hear from any or all of you to see what you all think. I am sorry for this being so long, I’ve held this in for a very, very long time. It’s hard to open up
to people who don’t understand. Thank you for reading.
Replies sorted oldest to newest
Oh Honey, you need a good colo-rectal surgeon NOW! You should not have to be dealing with this. There is so much more to life than enemas and worrying about pain. You sound exactly like me before my colectomy and j-pouch. I was using about a litre of bowel prep solution (drinking it) every day to keep my bowel moving. Gross I know but it was the only thing that worked. Finally my bowel quit moving all together and I had to have it taken out. Hallelujah. The best thing that ever happened to me.
I had an ileostomy for about a year and a half then had that reversed and now have had a j-pouch for about 9 years. Please please please see a good gastroenterologist and colo rectal surgeon. Advocate for yourself, you DO NOT have to live in misery. There are better options out there for you. Please get help.
I’m so sorry for my late reply, I’m taking care of my mother also and this is the first time I’ve sat down.
You don’t know what it means to me to see your response. I feel like I’m mentally dying inside and you sound like you were the same and I’m so happy you are better now. I’m going to Monday. I’ve had it once and for all. Like I previously said in my original post, I don’t think my j-pouch ever worked right. I’ve haven’t felt the urge or need to use the bathroom in 23 years just pressure when I set.
I don’t know if stool is laying in the j-pouch itself and only releasing a small amount when it’s full or what but at my age I have to do something because mentally I’m done. There has to be better and I am gonna find out what. Thank you so much for caring enough to tell me your experience, it really helped me the know there is a better way.
I don't think that the pouch is the problem. Rather a motility issue of the small intestine. You really need to see a gastroenterologist to examine your bowel and pouch and maybe also a proctologist for the bleeding.
Hi Steve, thank you for responding. I’m going to. I talk to my care plan coordinator Monday and she’s great about listening and she will set me up with a dr.
it was the same last night. I’m exhausted with it. It is a long and painful experience every time I go to the bathroom. I appreciate you responding.
Hi Shy, First of all, I am sorry you are going through all of this. I would say after reading your entry that you are without a doubt suffering! Reading that your stool is very slow to come out and comes out as hard balls makes me think that you still have part of your colon and, as Steve G said, you have a motility issue. It seems that Jaypea had this happening in her past. I am so glad you are going to get this evaluated. As others have said, you do not have to live with this kind of suffering. I hope your appointment goes well and you have a plan for a way forward! You sound like a very caring person for others. Now it is time to care for yourself and get the help you need.
So glad you posted here. I agree with others who have replied. There is so much complexity to the creation of the J-pouch and it's functioning, and we all share experiences but also everyone seems to have a unique relationship with this miraculous man-made organ. You're entitled to the right medical advice and attentive care to help you get to a good place after so long. I hope you can find an excellent surgeon, one who works with a team including gastroenterologists who specialize in J-pouch diagnosis and treatment. If you search this site you'll find a number of good suggestions. Many of us travel to centers that specialize. If you post the general area where you live, I'm sure you'll get specific suggestions.
Have you had a pouchoscopy since your surgery? I have one every year. I’m sorry you are having issues but do yourself a favor and get it looked at. Please let us know what you find out.
I’m so sorry for what you have had to deal with for so long. It was good to hear you had an appointment set up. Please keep us posted to let us know how you are doing. I hope that whatever has been causing all of this suffering can be repaired for you and you will be able to have a great working jpouch, but if you were to have an ileostomy, it would be way better than living with what you have been. Shame on the surgeon who seemed so unkind to you especially since you were just out of surgery and so young.
Shy, I am so sorry for your ordeal. Don’t worry about sharing things that sound awful, all of us “pouch pals” get it and are sympathetic. Please let us know how your appointment went.
Hoping to hear how you are soon, Shy, whatever the case. There is support here for you to help keep you from feeling alone, and maybe practical advice to help as well, if you want it just ask - what foods to eat and what to avoid, supplementation, products to soothe pain, etc.
Any updates? I sure hope you've found some answers!
I am so thankful that I found this thread, not just for the I information I receive, but also as a way to offer support to our “pouch pals.” I had my surgery in 1981 at the Mayo, and it seems I might be the old-timer in the group. I initially posted to see if others have had any bladder related issues or issues concerning abdominal scar tissue. I was part of a group that was being tracked for several years, and it seems that the surgery has evolved. Shy, hope you’re feeling better this week and are up to locating a doctor that can help you.
PS. I have an appointment this month at the Crohn’s and Colitis Center which is affiliated with Brigham and Women’s Hospital in Boston. If anyone has any experience with the Center, I’d love to hear from you. Thanks!