UC to J-Pouch Story

UC to J-Pouch Surgery

Posted by mark on May 11, 2008

                                 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 (‘takedodwn’ 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 (pancolitis) 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 committ 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.     

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31 Responses to “UC to J-Pouch Surgery”

  1. JP Gardner said

    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?

  2. mdhilton said

    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

  3. marsupial said

    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!

  4. mdhilton said

    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

  5. Leo G said

    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.

  6. mark said

    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.

    https://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:

    https://ucstory.wordpress.com/carters-surgery-photos/

    https://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:

    https://ucstory.wordpress.com/about/

    Take care,
    Mark

  7. Leo G said

    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.

  8. Alex P said

    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?

    • andre said

      dont need surgery follow the makers diet by DR Jordan rubin eliminate toxins from your colon drink aloe vera powder buy hso natural probiotics and hso natural soil dirt you will be healed eat flax seed oil wheat grass barley shakes youwill not need any surgery trust me your colon will heal also buy mps gold powder by dr wheeler mps gold powder it will clean out all the colitis you wil beat your doctors diagnosis he will be very mad do this and you will live well beyond your years

    • andre said

      eat lots of green veggies spinach raw carrots buy a juicer juice beets carrots apples carrots and eat them cooked as well you will be fine it will take,like 2 months youll be healed by the power of God use his natural healing tools green foods fruits beets dont drink milk or eat non organic eggs leave milk alone till you are well drink goats milk or soy powedered goats milk is golden if you want to save your life you will do this you dont need that stupid surgery also drink lots of mangosteen juice thou shall be healed bless you

  9. mark said

    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:

    https://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:

    https://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

  10. sharon said

    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

  11. mark said

    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

  12. dudewhereismylife said

    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

    • andre said

      you do not need a j pouch Buy Dr JORDAN RUBNINS BOOK THE MAKERS DIET IT WILL SAVE YOR LIFE CHANGE YOUR DIET AND YOU SHALL BE MADE WHOLE, DONT DRINK COWS MILK EAT FROM THE BIBLE FISH NO RED MEAT SPINACH CARROTS RAW AND COOKED SPINACH BEANS LETTUCE NO NON ORGANIC EGGS NO COWS MILK ALOE VERA POWDER MPS GOLD I HAVE SAVED LOTS OF LIVES BUY THAT BOOK THE MAKERS DIET YOU DONT NEED ANY DUMB SURGERY YOU WILL BE MADE WHOLE IN JESUS NAME , USE FLAXX SEEDS BARLEY JUICE POWDER MANGOSTEEN YOU WILL BE MADE WHOLE Make SHAKES EAT YOGURT LOTS OF GREEN FOODS BROCCOLI RABE RABBINNI WATER CRESS RADISHES YOULL THANK ME WITH YOUR WHOLE LIFE YOU WLL BE BRAND NEW oatmeal always keep ypur colon clean all the time toxon freefollow the mnu in the book the nakers diet

      • Bryan P said

        We are people of strong faith and from your posts you appear to be as well. However, the Lord may be glorified in many ways including a surgery to restore ones physical body so that she (my wife in this case) may be able to continue to carry the message of hope.

        Please let us all know that you have been cured of Pan-colitis using soley the diet above. Please I need to hear more about your story. Thank you

  13. mark said

    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

  14. dudewhereismylife said

    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

  15. dudewhereismylife said

    The forums are soooo helpful thanks again mark !!!

    Jae

  16. Rahul said

    Hi,

    I was diagnosed with UC at 19 yrs of age. I am 25 now. Initially, I had been steroid dependent for over 3 yrs with unsuccessful attempts to taper off steroids. My GI doc then tried a medicine called mercaptopurine. This did not work either. I had some special lab-work done to figure out how the mercaptopurine was being broken down by my liver and it turned out that I metabolized it differently than most people. Then, I was started on Allopurinol, to shift the biochemical pathway, along with Mercaptopurine and Lialda (long acting Mesalamine) and thank god and my GI doc I have been in remission for 3+ yrs (with ~1 flare / yr). This may work for anyone reading this blog. Ask your GI doc about this. This therapy is usually prescribed to patients at large academic centers.

    • rose said

      Iam better now after surgery but when i was younger and had flare ups they tried me on mercaptopurine and i had steroids i think they worked for a short period but i would flare up again then i had one big flare up that wouldnt get better with any treatment so i had surgery

  17. Rose said

    Hi i have been looking at your pictures mainly because i wanted to know if my scar was normal. I had my colon removed 1 year and a half ago and then 3 months later had an internal pouch made. My scar where my bag was matches yours but i must admit im a little jealous of your other scar as mine runs vertical down my stomach where as urs is horizontal hidden under the trouser line. I am so glad that i had it done tho it saved my life. I live a happy and normal life. i mean its a pain sometimes i still go the loo about 10 times a day but then i do like eating a lot of food. Are you glad that you had it done?

    Rose UK

  18. Carrie said

    Hi! I was diagnosed with Crohn’s 17 years ago. Back then I was told that a colostomy was my only option since the disease is at the rectum for about 10 centimeters (who would have thought that 10cm could cause soooo much pain). I was on TPN, methrotrexate, cyclosporine, remicade (which worked for over 10yrs), humira (had numbness on my right side so had to stop), and my latest 6 weeks ago – cimzia. Well, that’s not working too great and tomorrow I go to the GI Dr.to give a not so glowing report. I thought I should check ostomies as this very well be the way I’m headed. Honestly, I’m weeping stool, have a recto-vaginal fistula, can’t eat, go to bed after work, so what kind of quality of life is that???? A “bag” is looking like a god-sent. I want to live. Can a person with the rectum diseased get an internal pouch? Has anyone done the irrigation? This is a whole different world and as all of you know its a “big secret.” Any advice would be great!

    • Sharon said

      Carrie, as you’ve probably learned by now, the answer is “no.” Crohn’s is a contraindication for any surgery OTHER than the traditional ileostomy. My son is scheduled to have that done in a couple of weeks. After almost three years of dealing with this disease and being prednisone dependent (and only marginally helping, at that) he’s gotten to the point where he’s looking forward to it. The problem with Crohn’s is that it’s a disease of the entire gastrointestinal system. Even if your disease is currently located only in the colon (like his) there is too great a likelihood that it would just migrate to the ileum and beyond. Believe me, if they ever come up with a way to do an internal pouch with something OTHER than intestine, that would be fabulous.

  19. morolyn said

    iam 73 yeqrs old i have been dianosed with colitis for almost 2 years after a bout of pnuemonia. my family is no support they don,t try to understand. i feel so alone in this battle. i was on llialda my movements were freqent and i felt worse. i stop taking it and i feel much better. i am going to report this to my gi doctor on monday thank God for sites like yours.

    • andre said

      eat lota of green veggies buy the makers diet book by dr jordan rubin eat fresh vegetables fish carrots organic greens and veggies no cows milk aloe vera powder and you will be golden well again beets mangosteen powder you shall be fine goat milk powder lots of fruits and figs and apples dr wheelers mps gold powder flaxx seed oil wheat grass juice apricots cherrys fish boiled not fried you will livw way past your years

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  21. bani said

    Thanku Mark u r a hero in my eyes
    Because u r a true human being, and i cant tell u
    How great i felt about u when i read that I LOVE MY JPOUCH
    Being diseased physically is no doubt a big problem
    But being strong and stable with that disease is true faith in existence of almighty.

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