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Ulcerative Colitis
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sevodreams
Regular Member
Joined : Jan 2020
Posts : 73
Posted 8/2/2020 9:12 AM (GMT -7)
hey everybody, not sure if anyone cares or not but I just wanted to say hi. I was in remission for five years med-free (couldn't stay on mesalamine since it damaged my kidneys) and went into a bad flare while deployed to afghanistan in january. I tried budesonide, PO steroids, high dose IV steroids, and remicade x2 with no relief. I lost over 40 pounds within a matter of weeks and needed several blood transfusions. in march, I needed emergent surgery. thankfully by then I made my way from the military hospital to Cleveland Clinic. my colon was basically falling apart as they removed it, but thankfully my surgeon is awesome and was able to do it all laparoscopically. I completed step 2 of 3 for a j-pouch about 7 weeks ago and have my final surgery scheduled for september 17th. I just wanted to let anyone know that if meds are failing, surgery is not that scary of an option. I know there are those for whom it didn't work, but in a majority of cases those who receive j-pouches live very happy and problem-free lives. i'm hoping to be one of those, so far so good! the ileo isn't too bad, I just miss farting out my butthole haha. I wanted to thank those of you who gave me words of encouragement earlier this year when I was going through the worse flare of my life. I was diagnosed in 2006 and had only minor flares, so always considered myself lucky. until this happened. this is a very fickle disease, please take care of yourselves! all the best!
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quincy
Elite Member
Joined : May 2003
Posts : 32555
Posted 8/2/2020 10:12 AM (GMT -7)
Awesome news to hear you're doing so well!
q
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 921
Posted 8/2/2020 10:31 AM (GMT -7)
Hi sevodreams I remember you! We were worried about you because you went off the radar just before surgery. I'm glad to hear it's been successful so far. Any of us could end up in surgery at any time, and it's really reassuring when people report back. Thank you. Wish all the best for step 3 too.
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momto2boys
Veteran Member
Joined : Jun 2013
Posts : 2357
Posted 8/2/2020 12:13 PM (GMT -7)
Glad you are doing well!
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The_Swan
Regular Member
Joined : Jan 2019
Posts : 128
Posted 8/2/2020 2:45 PM (GMT -7)
Good luck with your final surgery!
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 8/2/2020 8:46 PM (GMT -7)
Thanks for updating! You will pass wind again in time. Do not worry 😁 it's always great to hear about people being in good spirits. It sounds like you're looking forward to a life without uc. I had surgery a few years ago and I haven't looked back.
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sevodreams
Regular Member
Joined : Jan 2020
Posts : 73
Posted 8/3/2020 8:26 AM (GMT -7)
thanks everyone! I will stick around to hopefully help others who are going through/about to go through surgery.
notsosicklygirl -- out of curiosity where did you get yours done, and did they remove all of your rectum or leave a cuff? sounds so weird to ask strangers about their rectums haha. thank you all again for your support, this site really does make a difference!
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straydog
Forum Moderator
Joined : Feb 2003
Posts : 18315
Posted 8/3/2020 10:10 AM (GMT -7)
So good to hear from you. A while back I did post on your old thread asking for an update. I see now why you didn't respond, you've been busy with these surgeries.

Keep everyone updated because this is encouraging for anyone to see that is in need of surgery.
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notsosicklygirl
Forum Moderator
Joined : Dec 2008
Posts : 17750
Posted 8/9/2020 6:15 AM (GMT -7)
I think they always leave a cuff to connect to. My cuff was scraped of cells though and I have not had any issues with cuffitis thankfully. I had surgery in Los Angeles.
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sevodreams
Regular Member
Joined : Jan 2020
Posts : 73
Posted 8/9/2020 9:13 AM (GMT -7)
Yeah I thought they always left 1-2cm I’d cuff as well. I took a poll on FB and about 35-40% of people had cuff removed (if they actually understood the extent of their procedure). Some people on there said no cuff should be left in order to avoid possibility of cuffitis. Studies seemed equivocal on which route to take, but my surgeon said it’s best to leave cuff for better chances of maintaining continence. I went ahead and just left FB anyways. Mostly bad stories (surprise surprise) on the j-pouch page, and a lot of my FB ā€œfriendsā€ are ardent Trump supporters, so I had to escape that as well haha
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