Let me just start off by saying this whole bag deal isnt new to me, I suffered through this for 6 mo about
18 yrs ago. At age 20 I was diagnosed w UC and it was so bad my whole colon was removed,I awaited surgery 4mo later and a j-pouch and loop ileo was constructed. A cpl mo after that i was reconnected,the best feeling ever by the way is to wake up with no bag attached. I wasin the hospital a week after release from that stay for an xtra 5 days due to a blood clot having formed but otherwise for that whole time from 1995 to 2005 or so other than mild pouchitis and taking anti diarreal drugs like immodium or lomotil i was fine,fine being masure din 'no bag'.
In 2002 i was diagnosed after tests with crohns. So my original diagnosis of UC was a misdiagnosis,thank God it wasent crohns at 1st or maybe that surgeon wouldnt have done the j-pouch option had it been so.In 2005 I began to have more and moe flare ups. Sometimes painful blockages and sometimes bleeding. I was hospitalized 1st time since 1996 in 2008 due to a severe blockage resulting in tube up nose down throat to relieve pressure. Me and teh gastrointerologist tried Remicade ( wich lost effectiveness after about
1 yr) then we did Humira wich seemed to work fine but Id still get flare ups and was in and out the hospital about
7 times between 2008-2011 either with blockages or bleeding,mostly blockages though. On top of it all I had a wife who only seemed to blame me for me having crohns saying it was always 'my fault' from what I ate ( bland diet by the way,no drinking hardly,no smoking,very little to no spicy or hot,no nuts,no raw leafy or tuber veggies) and incessantly badgered about
that plus every other little thing she could think of causing me ever more stress and anguish. Towards the end of the marriage last time I was in the hospital a cpl of nights I was even told ' If you get sick again I wont visit you!' I knew it was the end at that point.She was planning and plotting to leave anyways and during her remaining time with me she was constantly in a rage. Few mo later she left and I didnt try to get her back. I was fine,had freedom,other than the divorce( wich was pretty clean,no kids) and home sale I didnt suffer near as much stress and could actually eat things without feeling her wrath. My symptoms declined drastically and only felt really sick a few times. Met someone else who was much more caring and compassionate towards me. BUT, in nov 2011 after a trip to visit her I got very sick with the blockages ( actually 2 blockages).Was feeling a little sick even before I went to see her but I wasent gonna xxl my last trip of the yr for a crohns ache. Anyways, I went once to emergency,what a waste,give me some norcos and sent me home w a emergency room bill. I kept calling in sick,even though I was still going to the bathroom ok i had intense pain everyday. Id eat only soup and just drink water or juice. I wasted from 120lbs to 94lbs. By lower GI day a cpl weeks later I was too emaciated to be given that.I was thrown in an ambulance,sent to the hospital. I was put on TPN wich helped me somewhat but I wasent improving. A week in the hospital,2 weeks in a rehab home and then back into the hospital where the colorectal surgeon ( yes he did save my life ok) butchered me. Didnt bother asking me wich side i wanted the possible stoma on ( i thought the pro would have my intrests in mind,wrong) I'm right sided so youd think stoma on right side would be best,woke up with a terrible extremely flush ( I mean ileo hole nearly level w the skin flush!) loop ostomy( at he did loop and didnt remove my j-pouch,sphincter and rectum without my permission !).He didnt even come by to see his patient in the days after. kept me about
a week longer and sent me home with 4bags( not convex wich i later through my own investigation was much better). With such a flush terrible awkward shaped stoma he intestine juices constantly leak draining towards skin before the bag and bleeds constantly as well ( a combo of intestinal moisture and ooze,your digestie juices and blood not even eakin seals wich are so far the best and most comfortable,can stop that combo.I wear a convex pouch with tight ostomy belt,use eakin barrier plus ring and reinforce with pink and clear tape around.Still leaks after a cpl of days! So frustrating! I had the bag before ( better less flush stomas back then by the way) so I'm living this nightmare again. Id much rather endure the broken heart I suffered by being abandoned by ex than to go one day with this disgusting filthy ugly horrible uncomfortable bag. I live in constant fear of leaks wich do happen no matter the instructions I follow.Due to the bag I cant wear my pants up higher or tuck in a shirt,I cant wear a seatbelt when I drive since it smashes the bag thereby putting my life at a huge risk everyday. I have to sleep on the uncomfortable right side since my bags on the left side. I dont have my girl here with me( shes in another country and for now pending the outcome of all this i wont travel by plane due to extreme uncomfort,petrified of leaking bag on the plane and passing through airport security with the bag and having ostomy supplies lost,stolen or confiscated) so intimacy isnt an issue right now but if Im forced to remain this way it will be an issue ( shes on top,bag gets squished.Im on top,bag gets squished and who wants to do doggy w a warm bag of juices resting on their ass?? not visually pleasing anyways,my sex drive is 0.She says she loves me and accepts me like this but I dont accept me like this!) One can learn to live this way,but one dont have to like it. The surgeon in my 2nd follow up about
3mo back said ' maybe youll get used to having the bag,like it so much that you wont want to be operated on again' haha doc are u serious? Let me tell you. Im not a ignorant little kid. I could have this bag and live for 1 million yrs and Id hate every day of 1 million yrs with the bag'. He didnt like that. Do I have a life and a job? Yes I do. I work,I go out to eat,but theres so much I loved to do that I cant no longer with this thing. They say I can be hooked up but inflammation needs to be brought under control so I take prednisone and pentasa ( as I always have ) and some enemas ( mesalamine i believe) to control that. This surgeon ( supposedly one of houstons finest ) says I can be hooked up but he dont seem to be in a hurry at all. He did a lower GI on me 6weeks ago then told me I have inflammation still in the j-pouch from crohns and a stricture where the small bowel enters the j-pouch,referred me back to my gastro doc who prescribed the enemas. I followed up with the surgeon 6weeks later and he says ' Ok stoma looks healthy.Well see you for another lower GI in 6mo...' Are you serious? 6mo? Am I in that terrible of shape that I need to wait 6mo before you can see me?' 'Ok then 3 mo?' Doctor! Will it kill me or you to look up inside me again sooner?' " Ok 8 weeks? Its all arbitrary.' Makes me feel hes lazy and severely questions my confidence in his ability or belief or even desire to make me better. Also said ' When I
open you up again and I see that I can hook you up Ill emove the j-pouch,sphincter,and rectum and sew your anus up.....' Wait doc.No you wont,I wont sign up for that. If you
open me up and see I cant be hooked up,you will close me back up without removing anything! What happens if a cure or medicine that really controls crohns symptoms comes up down the road?Oh too late for you seanray!haha! So the surgeon says ' Ok i can leave your j-pouch inside to wait for 'your cure'. I gues as a surgeon its better for him there isnt a cure or good medicine for crohns or UC so he can just keep operating.
Well sorry for making it so long but so long as theres hope i will never give up on being hooked up normal again. All you out there and be honest, if all of you with the bag could magically or miraculously be given a normal healthy functioning disease free or at least disease neutralized digestive tract would you forgoe the bag? Youd be crazy not to. Im saying this from experience. Im not in any way knocking those with the bag because I have the bag but I dont want the bag for even a sec longer than neccesary:(( Im not blind to teh possibilty of this being permenant but Im not giving up on being hooked up. Id gladly have occasioanal pain,crohns flareups, and be skinny again to nothave my intestine hanging out and being a slave to filthy leaky costly bags and supplies.Sorry all but thats how I feel:((
Post Edited (seanray) : 4/27/2013 4:41:10 PM (GMT-6)