Hi, I'm really lost with my recovery. And I do not trust my doctors, for 5 months they told me it was a healing process and it should level out. They have never suggested any investigations other than a scope. After 4 months of asking for a decograph(proctol spectrogram) which I had read about on this site they finally agreed, it would have taken at least a month but I paid privately which sped the process up. They discovered(so they tell me) that my pouch has slipped upwards stretching the link between pouch and anus which is causing the constipation, they say it's also stretching the levitator ani muscle which is causing the spasm like pain. It is also pushing on my bladder which is why I can't pee without great effort. They tell me they now have to cut me open and make a larger loop and bring everything down. This will solve all my problems, so they say. I've read it's a big op and another painful recovery which is grand(I suppose) but I just don't feel right, I have been diagnosing myself the whole time with this situation through web searches and this site. I have had to suggest all the options to them, they have only ever suggested scopes. They have yet to preform MRI cat scans, X-rays , pelvic floor tests. I just feel that these should have been suggested to me. After another jpoucher on this site suggested a catheter to help, I suggested it to my doctors and then they prescribed it like it was there idea the whole time. I have found some relief with this but not anywhere near livable. I'm really frustrated now so my apologies as I'm venting but I've missed another year of college now with this ridiculous/degrading disease I've been sitting at home for 5 months rewatching game of thrones. Handholding my doctors wasn't part of the plan when they took my colon out, and with all this requesting I've had to do I'm afraid there is lots of things they are just not bothered suggesting or don't know about. I'm NO expert and I wonder how long if ever they would have suggested performing the decograph if I had of just kept my mouth shut. Has anyone else heard of this? Is there anything else I should be suggesting? I'm so tired of feeling like I HAVE to go then running to the bathroom and barely anything comes out. I don't want to prolong any of the procedures by moving doctors now, but if needs be... Does this seem normal? Could this be due to surgical error? Any help greatly appreciated.
Replies sorted oldest to newest
As lovely as it is to sit around watching Game of Thrones, I am sure you would like to be accomplishing a few things.
I agree with you that it seems like there is a bit of a rush to surgery without a full evaluation to see what is happening in there. Sure, you now know there is a functional/structural problem and that will need repair. But, it would also be useful to know if there are other challenges going on. It would seem to be a real shame to go forward with surgery only to find out there is irreversible nerve damage. In that case, perhaps an ostomy is your best bet, or maybe even a complete redo.
I am not sure who the experts are in Ireland, if any. It is possible that you might have to go to London for the higher skill set of the more experienced j-pouch surgeons. Hopefully, others from Ireland will be able to help you out there. I am not even sure if you can travel out of your country for treatment without it being an economic nightmare.
If travel becomes necessary, perhaps a temporary diverting ileostomy will help restore something closer to a normal life while you sort this out. I know the wheels move slowly, so no point suffering needlessly. Not the best solution, but perhaps a way to get back to living while you figure out how to get the best treatment.
As to whether or not this is surgical error or not, I think that is one of those gray areas. Maybe, maybe not, but it definitely falls into the possible complications no matter how great your surgeon is. Sort of a "stuff happens" thing. The real tragedy is being told that you are fine when you most obviously was not!
Sorry this has been such a rough ride for you.
Jan
I agree with you that it seems like there is a bit of a rush to surgery without a full evaluation to see what is happening in there. Sure, you now know there is a functional/structural problem and that will need repair. But, it would also be useful to know if there are other challenges going on. It would seem to be a real shame to go forward with surgery only to find out there is irreversible nerve damage. In that case, perhaps an ostomy is your best bet, or maybe even a complete redo.
I am not sure who the experts are in Ireland, if any. It is possible that you might have to go to London for the higher skill set of the more experienced j-pouch surgeons. Hopefully, others from Ireland will be able to help you out there. I am not even sure if you can travel out of your country for treatment without it being an economic nightmare.
If travel becomes necessary, perhaps a temporary diverting ileostomy will help restore something closer to a normal life while you sort this out. I know the wheels move slowly, so no point suffering needlessly. Not the best solution, but perhaps a way to get back to living while you figure out how to get the best treatment.
As to whether or not this is surgical error or not, I think that is one of those gray areas. Maybe, maybe not, but it definitely falls into the possible complications no matter how great your surgeon is. Sort of a "stuff happens" thing. The real tragedy is being told that you are fine when you most obviously was not!
Sorry this has been such a rough ride for you.
Jan
Thanks a mill Jan! I appreciate all the bother of reading my posts. I looked into it and the new surgeon seems to be very highly recommended and has just returned from a stint at the Cleveland clinic, which I've read is the sort of Mecca of j pouch surgery? There is also the option of traveling to London which is covered under HSE(Irish healthcare) if the need should arise. I'm okay with a temporary ileostomy, had it for a year before and once it's healed its do able. A new problem has popped up recently that I'm a little concerned about. A sharp pain in my stomach just below my rib cage sort of to the centre. It's really bugging me, as it seems to get better but is always there, last night I woke up feeling like I needed to vomit I didn't in the end. Ibuprofen seems to make it go away. Any ideas?