UC to J-Pouch Surgery
by Mark on Sunday, May 11, 2008 9:15
Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedown’ is 2nd surgery). Step 1 was done in early July 2007 and he was in the hospital for 5 days . Thankfully, he experienced no complications from this major surgery. Step 2 surgery will happen after step 1 recovery. See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal
Mark had Ulcerative Colitis (pan colitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to commit to the surgery. Many dietary and herbal options were tried as well. Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets. It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted. The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy. This has been the best decision for his health and quality of life. Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..
In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency. Then the related symptoms from those main symptoms were of both physical and emotional in nature. The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch). Go to this site here if you want more info: J-Pouch Illustrated. And Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.
JP Gardner says:
May 14th, 2008 at 4:12 am
Mark,
I have a bad case of colitis, been in the hospital twice in the last month. I am trying Humira but with little sucess. My next option is the J Pouch, I going to the bathrom over 20 time per day. By having this done howmuch of your have you gotten back?
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mdhilton says:
May 14th, 2008 at 6:38 pm
Hi JP,
Sorry to hear about your battle with UC. That is good that you have are trying Humira, lets hope that stimulates remission. Humira was my last try medicine (after trying everything else and then some).
Yes, I do have my life back 100%. I have been very fortunate to have an excellent surgery and recovery. I had good support and was ready for the jpouch and this all helped the recovery (that and sheer luck that my body wanted to work well with the pouch). Just talk with doctors, family, spend time on http://www.jpouch.org getting to know others in similiar situations and when the time is right for you (if that time comes) you will know.
Mark
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marsupial says:
May 17th, 2008 at 9:00 pm
I wish I had done a blog like this during my battle with UC. The colectomy and subsequent j-pouch gave me my life back, and I like connecting with others who feel the same!
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mdhilton says:
May 17th, 2008 at 9:41 pm
Marsupial,
Thanks for mentioning that you like connecting with others who feel the same way. This was one of the main reasons for starting the photo journal, was I didn’t have a “visual” of what it was like for others. And not being able to connect with others through real visuals made it all so much harder for me.
I would recommend for others to definately consider documenting the process and sharing it with others, there have been many incredible interactions with others because of this photo journal, and it has been very healing for me/us. And it has helped some others (I think).
The original photo journal before we moved it to this blogging site, had over 7,000 views: http://www.flickr.com/photos/markandmegan/sets
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Leo G says:
August 26th, 2008 at 4:03 pm
Mark, I’m in the same boat as you were, diagnosed with UC in 94, lived with it 11 years until my GI recommended taking my colon out, now I’m trying to decide if I want to go on with the final 2 surgeries. What made you decide? Love your blog too.
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mark says:
August 27th, 2008 at 3:55 am
Hi Leo,
That is a long time to live with UC. You know, that is the million dollar question -”how did you decide?” Everyone’s journey is so personalized that its still difficult to decide even when you hear others stories. But for me it was a long list factors. Mainly my life was 100% controlled by UC, I’d been flaring for 6 years with no break, was prednisone dependent, had tried all the drugs including some trial drugs. And I knew it was time for me based on these factors, but also my family supported the decision and together we all decided, prepared and informed ourselves about the reality of life with a jpouch.
You should DEFINATELY listen to the webcast that is in the following link. This is from a surgeon talking about your very question “How to make the decision” – this should really illuminate the issues for you.
http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/
Also, be sure to read Carter and Stephanie’s story on their pages:
http://ucstory.wordpress.com/carters-surgery-photos/
http://ucstory.wordpress.com/surgery-photos-stephanie-l/
They both explain their decision process. And on this page, under the section headed “About why Mark had this surgery and UC info” you will find links to pages of posts from people telling their story to your very question. I highly recommend you read these, you will likely hear lots of similiarities to your situation:
http://ucstory.wordpress.com/about/
Take care,
Mark
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Leo G says:
August 28th, 2008 at 3:23 am
Thanks Mark! I spoke with my surgeon today and have scheduled a date for the second procedure, next month. Your blog really explained a lot of questions I had and I’ve decided to make it happen. Also, thanks for the new info, I’ll have a look.
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Alex P says:
September 12th, 2008 at 2:10 am
Mark,
Im 15 years old and i got dianosed with UC at the start of June and have been in the hospital for a most of the summer but going to school know. Ive tried most of the medicine on remicade know and hasnt been working the best. GI doctor said that i dont have tones of drugs left and i might have to get surgery. So i was just wondering how u feelt after the surgery and if it helped at all?
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mark says:
September 12th, 2008 at 5:01 pm
Hi Alex,
sorry you are dealing with this at such a young age. To answer your question, yes, my life is improved, you can see that my 9 month jpouch update indcates things are going well:
http://ucstory.wordpress.com/2008/08/08/mark-9-month-jpouch-update/
For you though you’ll probably want to talk with some other doctors, getting 2nd opinions is good before getting surgery (I did). And you’ll want to join that chat room discussion on Healing Well for Ulcerative Colitis, I think this will be a great place for you and family to get more UC info.
http://www.healingwell.com/community/default.aspx?f=38
Then if surgery becomes more a reality then you’ll want to join the community at http://www.jpouch.com.
There are great resources that you and your family should use, like listening to this webcast:
http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/
Having this surgery is a huge deal so make sure you and family are 100% clear about all your options now, and what exactly the surgery means.
keep us posted,
mark
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sharon says:
October 19th, 2008 at 9:11 pm
thankyou for your webpage story. my son is 19. he was diagnosed with uc at 15. he had the jpouch surgery this year. the final surgery was this june. (he had 3 steps) he was doing sooo great up until 3 weeks ago. he has had a bout with small obstructions. just had one last night. this time he didnt have to go to the hospital. theyve passed on their own. Have you had any? If so, have you had more than one and so close together? or do you know anyone that has had a similiar episode? Im affraid he had an area of narrowing or something, that may need surgery. please email if you have any similiar stories. I thought I was done worrying……
sharon
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mark says:
October 19th, 2008 at 11:10 pm
Hi Sharon,
Sorry to hear about your son’s obstructions with his jpouch. Unfortunately, I don’t have any good info for you on those, but I can send you to the right place to get the info you need. You should really visit http://www.jpouch.org and on post your concern on the forum board. You’ll find quick responses from others who have more knowledge and experience with jpouch blockages.
Wish I could have been of more help, but do visit jpouch.org that forum has been so helpful for me.
Mark
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dudewhereismylife says:
December 16th, 2008 at 4:00 pm
Hi mark,
I am 21 years old and I have been diagnosed with UC just 2 months ago after not knowning what i had for a whole year putting up with a flare up.(I thought I had cancer!) I am currently on Asacol and Hydrocortizone enemas. I been on the medications for the past 2 months and while the enemas seem to help for the first bowl movement I have after putting it in( usually the first one in the morning, I put the enema before sleeping), it feels as if its back to watery and the bowl movements are frequent and painful like dry heaving through my butt by the time my second one comes. Anyhow I read your blogs and you seem to have a very good outlook and good spirit. It makes me feel better to know that this is something that others deal with and I am really glad I stumbled upon your posts. I actually made this screen name because I wanted to comment after reading your blogs. I have not had the thought to consider the J-pouch yet. However, I think its a valid option down the line. I was wondering if you have any words of advice for someone just trying to figure out how to live with the disease. Thanks for your time.
Jae
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mark says:
December 17th, 2008 at 1:03 pm
Hi Jae,
UC is a difficult disease to live with for sure. Advice for you is hard, but the first thing is for you not to think/worry about surgery until your doctor starts talking with you about it as an option. Everyone has a different medicine routine and flare pattern and your GI will be your voice of reason when/if the surgery talk comes. And keep in mind only 20-40% of UC sufferers need surgery – that number is pretty low.
You should definately join the Ulcerative Colitis support forum at http://www.healingwell.com/community/ Here you’ll find people like yourself just trying to live with UC, you can ask anything there and you can also help others with your experience. I know the idea of a “online support group” may not seem cool but the tricky part of UC is that not many people have it so likely your family/friends don’t really understand what you are dealing with. Here you’ll find people just like you.
And last I would suggest that you do really be honest with your family about this and make sure they can support you 100%. This disease is hard to handle alone so make sure you don’t do it alone. And if ever you find yourself real negative, blue or even depressed definately seek some professional therapy because those people are trained to work with the effects of living with chronic disease – I’ve done it a couple times when things got to heavy.
take care and feel free to stay in contact,
mark
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dudewhereismylife says:
December 19th, 2008 at 1:10 am
hello mark,
I know my family and friends, specially my girlfriend, try so hard to understand but sometimes it is hard to share the gritty details of how UC makes me feel, or how exactly it is bothering me. I really feel like it does make me feel so much better to just even read about what others go though. I think it will be really good to share my experience with others and visa versa. Thank you! I really appreciate you takeing the time out of your day. I think its a great idea to join the online support group. I will keep you posted
P.S. My doctor started me on a different med called Predisone yesterday. I think I already feel it working, but it might just be me anticipating the new med
Jae
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dudewhereismylife says:
December 19th, 2008 at 1:58 am
The forums are soooo helpful thanks again mark !!!
Jae
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rich says:
August 6th, 2009 at 5:55 pm
hey there
im currently going throw my operations mines in tree stages im now at the 2nd they have removed all of the uc and have formed my pouch im having my 3rd op on 11th september 09 and i had my 1st on november 08 i only fell ill with uc september 08 and it got so bad i had no choice none of the meds work on me and i was in severer pain and discomfort it has all bean done so fast that i have really gone in to a depression and i was just wondering was having the op the right thing for you and how different was things before you feel ill with uc? my mum also has uc she was diagnosed with it at 15 and meds have worked for her im now 23 and im finding it hard that they have worked on her and not me (i know that sounds selfish) do you have them days still or are thing that much better after op that there is no need ? cos at the mo its still scared at whats to come (sorry to go on but there is no one i can chat to here who has gone throw it)
thanks rich
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Mark Reply:
August 7th, 2009 at 8:06 am
Some people get sick really quickly with UC like you and require surgery right away, others are like me where I was sick for many years and finally decided for surgery to not be sick any more. And any way that the surgery happens I think almost everyone hits some type of depression (or coping process). LIke Merry Lynn, she is having the surgery because of dysplaysia and not living sick with UC
http://road2singledigitjeans.blogspot.com/
I can only speak for myself but the surgery gave me my life back and I’m not longer living in a UC prison, I definitely made the right decision for my life, you can read my 9 month and 15 month post surgery follow up here to find out more about my outcomes in detail:
http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/ And here is Brevin just 10 days after his takedown surgery hiking and feeling great without UC http://www.jpouch.net/2009/07/23/happy-thoughts-101/
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Jmanlife Reply:
August 9th, 2009 at 1:21 am
Hey Rich, Ihave had a J-pouch since 1993 and I am still wondering what the future holds for me. You are not alone and like others on this site we each have our own story to tell. I have to agree with Mark and many others, once you have this surgery you will have your life back. Being patient is a challege in itself, just keep a positive attitude and take it one day at a time. It is a blessing to have a resource like this to keep in touch with other people who are either going through what you are going through at the moment or with others who have been there. I like to tell people: “It takes guts to have a surgery like this!” Stay strong and positive.
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rich Reply:
August 10th, 2009 at 2:42 pm
thank guys
hiring this from other people who are going through the same thing is so reassuring and has really helping me go trough a low point that im going through and i thank you for taking the time to respond cos sometimes i fill like im on my own cos no one really knows what im going through and i find that finding info is quite hard and when i do find it its so text book and hard to relate to so thank for shearing your stories they really have helped
caterlyn says:
January 25th, 2010 at 3:07 pm
i am 11 and just got diagnosed with uc. i am on alot of medication and hopefully wont have to get a j pouch. all those stories are pretty inspiring and i hope everything with everyone turns out ok. thnks
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Jo Gibson says:
January 25th, 2010 at 4:10 pm
It’s nice 2 have sum where 2 rite bout UC.
I had UC wen I was 9, n had my 1st operation wen I was 16, n my 2nd wen I was 17. It was the best ting I had done. I’m now 42 & a mum of 2 boys.
Hopefully 1day they will find a cure.
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