would you put up with 4 fisstula and a vaginal (yuk) or would you get a bag????

by barbie420
(b.c. canada)

Fistulas are sometimes a topic not talked about.. lve had crohns since 16 now 47 (next week) l thank God lve stayed away from a knife but the 1st fistula was a boil to be lanced and wa la it never closed.. there not so bad.. but should l take a chance on a temp bag ( not gonna happen) according to my G.P. it will be permenit so just carry on thing is lm a single mom and my kids are getting older l cant even talk to someone about dating.. you get the point.. am l being to vain raise my kids be happy gain weight lol anyway if you had a choice would you pput up with the fistulas or get a bag it seems its my choice .. at least for now On remicade and it seems to help beats the h@ll out of prednisone Good dreams and hopes thanks b

Comments for would you put up with 4 fisstula and a vaginal (yuk) or would you get a bag????

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thankss for the truth
by: barb

lol thanks for all your comments. Sorry to hear lm not alone...but comforting to know others out there getting by..opted out of the bag at least for now..have to see what the future brings take care of yourselves ty

i would choose fistulas
by: Anonymous

I have had crohns for approx 5 yrs now. within that time i have developed 5 fistulas (3 vag, 2 anus). They are sometimes painful and embarrasing, and they leak a lot of gross fluid, but id never get a bag.
I keep myself clean, fit and healthy, i make sure im active and i do not let it get me down. I have setons inserted and although the odds of healing are not great, id rather take them, than give up and accept the bag. I have heard the bag is not that bad to live with, but i couldnt cope. it would bring me down.
my friends and family are supportive and im hopeful for new treatments. i know its hard and my thoughts are with everyone suffering them. its horrible.

Going through the Same thing
by: Anonymous

I have had Crohns for 11 years (at least diagnosed 11 years ago). I have had RV fistula before that healed but this past stint with them has been going on for 4 years. Although I only had two active ones they literally have been such a pain in my arse!!! I was able to get one closed with a plug. I have had 3 surgeries with the plug, one flap and numerous seton placements to no avail. Unfortunately with the Seton in I still experience pain daily with inflamation. I am scheduled for a new procedure that I have not tried the lift so we will see what happens. If this fails I too am considering a temp. colostomy. I just feel that this tiny problem causes me such a big headache and effects every aspect of my life, I get very cranky and feel that I have pms 24/7 forget about my poor husband. I am scared though what if the pain is better than having the colostomy. I feel as though I can deal with it I am pretty open with my issues (you kind of have to be) but I am a realtor and I am worried about having new clients in my car and having noises and such happening - I really don't want to explain myself, can I control it if I don't eat for a certain number of hours before hand if I know I have a run of showings that I have to do or an important meeting. Looking for advise.. It just seems like a drastic measure for such a minor problem.

Team bag lady
by: Anonymous

Personally, I would get the bag. I knew someone who had one and she said it was great - no running to the bathroom with diarrhea, no pain, the diseased tissue had been removed, and she could eat normally. She also had a husband who had no prob with the bag.

I would much rather have the bag than the fistulas or incontinence. Nobody would even know you had the thing.

benefits of surgery
by: Anonymous

Hello, I was diagnosed with indeterminate crohn's/colitis 13 years ago. My illness was so severe that I had to have a permanent ileostomy after six months, because I was bleeding out, I was allergic to 6-MP, and my kidneys had failed. Anyway, the ileostomy was the best thing to happen to me. It is awesome not to be sick or in pain anymore. I have two children (post-surgery), a wonderful husband, and other than a few minor surgeries, NO PAIN. Living with an ileostomy is SO much easier than people think. I do everything everyone else does, in fact, more than I did when I was sick. I even camped outdoors for the entire summer. So, I know it is a difficult topic and I know how life-changing surgery can be, but for me it was not only a life-saver, but it gave me my life back. Good luck with your illness, but don't think that if you end up with surgery your life is over.....far from it....you might just get it back.

a bag
by: Anonymous

first things first- i cant tell you to get a bag cos i havent had or got one... but- i know where ya comin from. ive been opened up for surgery several times and ive had more fistulas than i care to count. some can be effing nasty. had some cut out of my ring piece and the open wounds took 6months to heal up like a scar, now littered with craters. i too am torn cos i've reached last resort time i think, where my whole digestive tract is affected and meds are less and less effective. i dont want to lose a big piece of what makes me, me! but to answer ya Q, in my opinion id rather have my ring piece butchered cos i know i can handle it. its not a major thing like losing your colon. fistulas must be kept in check though cos theyre poisonous.

by: Anonymous

Well im 24 and have had crohns since I was 12 I have a severe case I've had 9 surgeries I've had a colostomy and a illiostomy I've had numerous bowel resegments I've developed paratinitus not sure how 2spell it its a deadly affection and fell into a coma my surgeon removed it all thank god having the back was very hard on me I was 20 yrs old and it made me severly depressed I pulled away from everyone but I had a rectal fisure and id cry to go to the bathroom even tho it was jus liquid the pain was unbearable after 2 years they were both reversed so in a way it helped but at the same time it was hard to deal wait at a young age but I fear I need a colostomy again I believe I have formed fisstulas now n it is extremely painful and jus continues to get worse so im very torn right now on what to do....but I hope I've helped you some...

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