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hi all! i'm a long time "follower" of this webforum but i've never posted or registered till now.  i'll try to not make this topic/post toooo long.  i'm a now 26 year old male that was in college.

it started when i noticed blood in my stool & naturally i went to the dr. after a few vists i was diagnosed with U. C.  i tried asacol & that didn't work so well. then my doctor tried Mercaptopurine (i HATED that drug as i had to go to a clinic to get my blood work every 1-2 weeks & don't like getting stuck lol) along with colazal (balsalazide).  that worked for a little while (1 year or so) but my U. C. eventually came back.

right at that time i started with bad headaches, but i just took 2 advil & didn't pay attention to it.  well apparently i should have because one morning out of the blue i felt really bad & my lip was kinda numb.  i went to school & rushed home to take a nap. my mom fixed me some soup & i laid back down, well not to long afterward my entire arm went numb & i started to go into a seizure.  luckly my mom was there to catch me as i fell.  i was rushed to the hospital & i don't remember a whole lot after that because i was sedated. the doctors didn't weren't sure if i would make it.  as it happened i had a stroke/seizure & caused by blood clot in my brain.  my surgeon had to perform emergency surgery on my brain.  as a result i lost movement in my whole right side & have broca's aphasia.

at first none of the doctors knew what was wrong, they kept thinking it was some type of infection.  as it turned out i have/had a rare type of blood clotting disorder known as "factor V (five) leiden."  well i couldn't take coumadin, which is a blood thinner, when i was in danger of a flare because as we all well know, flares can cause bleeding.  i had to take prednisone to make sure my flares were under control.  so my G. I. doctor recommended having colon surgery. 

the first sugery was around the end of january & my surgeon was able to do it in 2 stages.  obviously the 1st was by far the worst one.  it took him 7-8 hours in all to complete.  it didn't take long & i was on my back to the hospital due to a blockage, luckily it was a short stay (overnight).  but i quickly lerarned to dislike my new friend (the bag), i named it mr. crowley.....yes after the ozzy osboune song lol .  mr. crowley always smelled, leaked & was a pain to change every 3-4 days.  luckily my parents took good care of it & i didn't get any infections.  my 2nd (the take-down) surgery went a little better, my only issue was that i had gas pains for a few days straght when i was in the hospital & i could not pass any gas.  i assume it was my whole system was wondering what the hell happened lol.

when i was finally home for good was worried about how many times i would have to go, just the unknown of it.  i started out having to go to the bathroom 7-8 times every 24 hours (that was including once or twice at night).  but that quickly got better.  now i can go 3-4 times & not have to get up in the middle of the night which was a big concern for me as i can't get around as quickly due to my other issues.  usually i cut off my eating at 7:30-8pm, i have found that works best for me & i make sure to go right before bed.  really the only time that i have to get up in the middle of the night is when i don't obey my rules & i had eaten at 9-9:30 or i went out with a group.  gas is an issue, so i try to stay away from carbonated drinks.  another thing, try to stay away from fast food (again, not a bad thing to do anyways lol), eating fast food makes me wake up in the night too.  a really good thing is i don't have problems with my control at all whereas with U. C. when i was in a flare, it felt like all of a sudden i had mere seconds to get to a bathroom. 

so all in all, i am quite pleased with the results given the consiquences of going another route for me.  i would recommend considering the option if you can't get your U. C. under control & feel like you've tried everything.  obviously don't do anything without talking to your personal doctor.  i'm not saying it's all lollipops & candycanes or anything like that lol.  the surgery is long & you'll be out of commision for at 9-12 months & nothing is better than what you were born with.  but my surgeon recrated the best he could & it it's working for me.  just wanted to share my experience & thoughts with everyone :)

ok....i know.....i my post made toooo long

Welcome Fordfan83! That was the longest post I've ever taken the time to read on here, but it was worth it. I'm glad you had a successful outcome after your surgeries and no longer have to deal with UC. That isn't my path yet, but if it happens one day then I at least know your experience was positive. (A good thing to know from a fellow 20-something). So, welcome again and feel free to post away or reply to other posts!

Ashley O

Yes, we like it when others who have had surgery come back here to let us know how it went and what their life is like now. Some of us are or may be facing surgery in our future and the more stories we here, good or bad, makes us better prepared to face it.

Welcome to Healingwell and I'm glad you made the time to share your story.

Fordfan--welcome, and thank you SO much for sharing! It's hard to find first-hand information about successful surgery.......your post is very helpful, hopeful and SO worthwhile to read--not too long at all! I hope all continues to go so well for you.

Fordfan,
Thanks for your post, it's great to hear you came out of it well. One question - did they clearly say taking cumudin would cause flares or worsen your UC? My brother has a situation which is somewhat similar to yours. He was diagnosed with UC about 10 years ago. It's mild. He then had a stroke the following year due to a congenital defect in the brain which caused a stroke. Now, he's just found that he has clots in his lungs (pulmunary embolism) and has been put on cumudin. I'm worried about the effect of this on his UC (he only takes asacol sometimes during flares for this, no maintenance meds). Could you shed any light on what you were told, this would be very helpful.
Wishingtohelp, check out the ostomy forum on this site or jpouch.net for more positive stories re: surgery.

Dr-A: i was talking about myself more when i wrote that line, i'm sorry for not clarifying. for a normal person that only has U. C., they probably could have a little better results. but because i also had the stroke/seizeure & paralysis, my normal routine is i'm sure very different than most & i can't say, everyone is different. if your talking about working & all, you would have to talk to your dr. & your employer about what you can & can't do. soreness wise, i was very sore after both surgeries obviously & that limited the amount of stretching i was doing, but personally i have to stretch everyday (or there about) or i get a lot of tone. hope that helps :)

killcolitis: it's not that the coumadin causes or worsens uc/flares (that i know of)...coumadin thins your blood and when you have a flare a lot of the time you may bleed....so the coumadin could cause problems with blood loss or increase bleeding during a flare. my dr. didn't want to take any chances with me being on coumadin, flaring, having factor v lieden, and already having had a stroke.

     Your post was very interesting.  Glad you are doing better.  I am a 63 yr old woman who wasn't diagnosed with UC (actually ulcerative proctitis..UP) until I was 52.  Right now I am on Remicade but if it doesn't work, I am looking at surgery.  I already have seven years of 6MP under my belt...it didn't keep me out of flares and the side effects weren't too great....loss of hair, tiredness, extremely low WBC.  I don't mind blood tests.  I fought my doctor tooth and nail before finally biting the bullet and agreeing to Remicade.  I am fighting some kind of bug right now.  My third infusion was Dec 31st.  I spoke with my GI doctor's associate over the weekend when my temperature was 101.  He said it could be serum sickness from the Remicade and if I get sick after my next infusion (Feb 26th), they will have to stop the Remicade.  I said..."Oh joy, then that will mean removal of my colon and I am an OLD lady."  He said that 63 wasn't that old to have the colon removed and that with modern technology I wouldn't even have to have a bag.  That was news to me!  Oh well, I just want to think positively that Remicade will help me.

     Hope you continue to do well.  You sure had more than your share of health issues at such a young age.