hi my loves! nice to see everyone gathered again.
my appt with the CC surgeon was disappointing. first of all, he was so not nice as he used to be. i told him that i'm 6 mons with my stoma now and have made up my mind i want to keep it for life. i told him that all the ppl i know who have loop ileos and a j pouch have bms, some once a week, some every day, some several times a day - but anyway, the point is that when they have the urge, they can expel it. i explained to him that the problem with me is that i can't and nothing can be expeled on it's own even if i wait 6 mons. the pressure is horrible and causes me lots of pain in my whole pelvic and lower abd, and the pain wakes me up at night. so i asked him what about taking out the rectum and doing an end ileo.
so he said that removing the rectum is a huge surgery, as huge as a colectomy, but even worse, cause it involves lots of complications, such as possible nerve damage, since there are so many delicate nerves in our pelvic, and as a result - horrible chronic pain. also, my Fallopian tubes can be shut from scare tissue and thus will have hard time conceiving a child. he said you can do it, but i suggest you consider it very heavily. so i don't know... honestly, the thought of a nerve damage really worries me. i know 2 women who were unfortunate and have it as a result of a pelvic op and their lives are ruined. they live on the strongest nacotics exist and it's for life. that REALLY scares me.
but i hate it that i still have to do enemas, and i hate it even more that the enemas are not working!!!
i asked what about doing an end ileo and keeping the rectum. he said it's not a problem doing that and it's a small procedure, but it wouldn't solve the rectal pressure problem. so anyway he doesn't recommend it, at least not at this point, esp since i still manage with convexity and adapt rings and there are no skin issues.
one thing he said that surprised me was that he can't find the lower hole of my loop stoma. he thinks it has closed shut, so now my stoma functions as an end ileo... i was shoked and besides... only a week prior to seeing him i changed my wafer and i saw the mucos coming out from that nonactive hole, so is it possible for it to be shut within a week..???? so weird.
about my mysterious recto-vaginal fistula, it first of all sounds very strange to him for it to be created after an ileo op. he said it's more likely to happen after an op in the pelvic and not such a procedure as just creating a stoma, so it makes no sense to him. but in any case, my fistula isn't very symptomatic, i mean it's not causing me much trouble, probably b/c i have a stoma. i do have a huge amount of mucos coming out of my vagina 2-3 times a week, but it's not that horrible. i just change my undies liner and i'm ok. so maybe better leave it as it is. i said i'm possitive i do have one, also b/c of the fact that when i get my period, blood comes out of my rectum. blood never comes out of my rectum, only during the first 2 days of my period, when i have the most massive bleeding. he said that even if there's a fistula, it's better leaving it as it is, since it's not causing much trouble and it's not dangerous leaving it as it is.
the MOST hard part of that appt was when he stuck his finger into my stoma...... OMG!!!!!!! i thought i was going to faint!!!!! it was HORRIBLE and caused my stoma to sink even more... i don't like them doing that, and if i ever go to see a dr again, i'm gonna try to avoid that part as best i can!!!!! i'll ask if it's really necessary, cuz if not, i'd rather them not doing it :((((
about my slow motility, there's no surgical solution he can offer me - that's all he said.
i asked what are the chances i have narrowings/scare tissue. he said that if i had narrowings, prune/pear juice wouldn't have helped and i would get obstructions often. so the chances i do are very low.
soooo... i don't know, have no idea what to do about things.. i'm just not gonna do anything at this point i guess.
so Allie, i know how badly you want to rid of this nonfunctional rectum, i want it bad too, but it's just so scary to think about nerve damage... so frustrating.
Rosemary, i don't feel any heaviness neer the stoma or anywhere in my abd. i don't think this heaviness feeling is normal.
Jen and Marisa, so sorry about your ongoing issues. i also have a slow small intestine, but i manage ok with prune and pear juice. i hope your drs have some answers for you both.
Tracy, i used to drink pickles juice every evening to help with my output. i LOVE pickles juice too, but it caused me severe water retention, so i had to quit and had to switch to prune juice instead. the pickles juice in the right amount (half a glass) was working much better than prune juice, but i was so swollen and starting developing edema YUCK! so please be careful with that, all that salt is not good for you.
i'm glad you're doing well, Tracy, but you do actually have a huge surgery a head of you - removing the colon + repairing the hernia. but it is best to remove the colon, no use to keep it in. i just hope all goes well.
Janie, glad you're still doing ok :))
Sarah, thanks again so much! i checked it out and we do have this company's products here, so im gonna try it. i hope it helps me too with the motility.
i feel so sad for Lizzy for all the ongoing complications she has. she's always in my prayers!
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy