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.
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