J-Pouch or Permanent Bag?

Introduction:

Hi, I’m Marti. I am a happily married 30 year old with stubborn Ulcerative Colitis since 2005. There are no meds that work anymore except a high dose of prednisone which has made my face all puffy and I can hardly recognize myself in the mirror!
Because of this, I have a surgery scheduled for Feb. 6 to remove my colon. Trying to accept this… Luckily, I have a very loving and supportive husband who will be very important to my recovery. :)

Some more about me:

Having UC is terrible on your social and work life as you all know. I am a supervisor for a cleaning co. which means I drive a lot and when I’m not driving I am at a clients home (not the place you wanna do #2)…. So, I’m looking forward to not having to run to a bathroom at a gas station or worse, pooping my pants!!! I realize that having a bag will be life changing and I will have to schedule my work around my bag schedule but atleast I can schedule my poo! Can’t do that at this point in time :p

My struggle is that I love my job and will miss my work while away as well as worrying about my husband keeping up with the bills while I’m off work with no paycheck coming in…. but, I’m sure we’ll get by.

Symptoms:

Since September have had BM’s anywhere from 10-20 times per day depending on what dose of prednisone I was on.
Stomach pain, colon spasms, weight loss, weight gain (from prednisone)

J-Pouch or Permanent Bag

Here is my big predicament! Before I went to see the surgeon, I did plenty of research on colon removal, j-pouch, Brooke ileostomy, internal reservoir and so on so i had tons of questions! I had decided before I saw the surgeon that I did not want to have a J pouch because it seemed as if having a J pouch is almost like having colitis! Going to the bathroom 6-8 times per day, pooping your pants at night, getting up at-least once per night to poo, having all that rectum pain, pouchitis (which to me seems like it would be like having ulcerative colitis), and then you have to learn to control your bowel movements. After telling my doc that I did not want the J pouch, he talked me into getting the first surgery and then if I never wanted the second, take down surgery, I wouldn’t have to get it. But ateast then I still have the option of getting the take down surgery or not.

I guess, my question to all of you is how is life with the J pouch BETTER than having your ileostomy bag? Is it better? From everything I’ve seen and all the stories I’ve read the ileostomy bag seems better than the J pouch. I’m just so completely nervous and am not looking forward to looking down and seeing my bowel sticking out of my tummy! But, I’m so confused about which surgery I want to get. At this point, I want to get full colon removal including removing my rectum and just sewing everything up but I don’t want to make a decision that I will regret but I also don’t want to poo mucus while I have a bag if I never decide to go get the take down surgery! Help!

written by Marti S

submitted in the colitis venting area

Tags: bag, j-pouch





49 Responses to “J-Pouch or Permanent Bag?”

  1. KatherineJanuary 7, 2013 at 1:03 pm #

    Hello! I am 24 and just had my third and final surgery to get the JPouch. Like you, I read lots of negative information on the internet before and during all the stages of my surgeries, and although some of it was semi-true, the majority of it I have not experienced. I have had a WONDERFUL experience with my JPouch so far, and it has only been three weeks since my final surgery. Of course, it takes some getting used to, but I am only going to the bathroom about 5-6 times a day, and maybe once at night. I have not had any accidents or anything. It is such a relief, especially after having UC and going on average 25-30 times a day. I will say that surgeries are difficult. I had pretty tough recoveries after the first and second surgeries, but I would do it all over again in a heartbeat knowing that the end result would be so great. And with the pouch, even if I have to go #2, I can hold it for hours if I need to. I think it is good to do the surgeries at a relatively young age, I think it’s easier to bounce back. I had a difficult time getting used to the ileostomy bag, but that varies for each person. The only way I got through those months was knowing it was temporary. Let me know if you have any questions, I’d be happy to email you. I think the JPouch is great!

    • FahadJanuary 11, 2013 at 8:59 pm #

      Hello katherine i had my first surgery they removed my colon ending up with a bag 2 more are to go so can u plz tell when the pouch is made do they remove the rectum and does it effects the sexual life after the pouch can u eat anything u want to.

      • Jennifer HugillFebruary 17, 2014 at 4:39 am #

        If you are having a 3 step surgery with the hope of ending up with a Jpouch, they will leave maybe 10cm of you rectum (maybe less maybe more). I had uc flares in the leftover rectum before the 1st and second surgery. The second surgery (takedown). Is when they create the Jpouch, remove the remainder of the rectum (but not the rectal cuff as this is what they need to attach your Jpouch to.)

        You’ll have a 6 week period that you’ll only be able to eat things that you can cut with a fork. After that you can have just about anything. My stomach is not as string as it used to be and certain foods bother me. You’ll have to learn to really chew your food, because with an illeostomy blockages are possible and horrible I might add. Just chew, chew, chew. And don’t eat too many nuts, mushrooms or popcorn etc. at any one particular time. This is where you may have had issu.
        Drink a lot, it’s easy to get dehydrated. If you are a female sex should be fine afterward. Go slow as there has been a lot going on down ther and it may hurt a little during at first but the next day is when you’ll really feel it. Kind of like working out. This is only temporary. Men have more serious issues with complications as their equipment is very close to where they operate and if mistakes are made, sadly it can lead to impotency. Make sure you have a really good surgeon who does them all the time. I even recommend waiting a longer period of time between the 1st and second surgery if you can. You’re body has likely been through a lot and if you were on a lot of immunosuppressants like I was. It will enable you to be stronger internally for your surgery.

        My name is Jenny by the way. I’ve had two steps done. I ended up with a leak in my pouch wich resulted in and abscess and fistula. That was nine months ago. But it’s staring to heal now. In my case I feel as though I may have not been ready for the second surgery. I also have indeterminate colitis which makes it trickier. I’m staying positive though.
        I had a great surgeon initially and now I have one of, if not the best surgeons in the whole world that deals with pouch problems.

        I truly hope all goes well for you with no complications. Good luck

    • JordanJuly 8, 2014 at 3:43 pm #

      hi, im 17 and have had UC since the age of 8, at 15 my UC developed into toxic megacolon and my large intestine was going to burst so the hospital removed it and i had a temporary bag for 2 years now i do remember the horrible times like it leaking in the night but i also remember i had no flare ups and i wasnt in pain, now i dont have a bag anymore as i had a reversal and im about 4 months into a j pouch and i have had tremendous stomach pains along with needing to go toilet alot between 6-8 times during day and about 3-4 times at night, its really a big pain to go through it as i cant get up and walk around for any more than 20-30 minutes before needing toilet yet when im sitting down its like i dont need toilet. is this normal ish for a jpouch i also have to push my stomach in really hard for relief when in pain.

  2. KatherineJanuary 7, 2013 at 1:05 pm #

    I would atleast try having the Jpouch, and if you hate it or it doesn’t work out for you (which it should, I am pretty sure the success rate is like 95% but I am not completely sure), then you can always go back to the bag. I wish I had had more people to talk to during the time before my surgery and during it, so I would have known that there was light at the end of the tunnel.

  3. RicoJanuary 7, 2013 at 1:15 pm #

    Hey marti,I’m going on 4 months now from takedown,and I could tell you this,the bag was only good cause you will never have cramps blood,pain or any colitis crap,but it also gets to be a stinky mess too I’m in the bathroom 5 to 10 times but with pretty good control,and things are getting better over time,the doc said 6 to12 months until the pouch adapts to your body,the surgery was hell but every day after just gets better,I think I made the right choice,so good luck with everything,ps…life for me is so much better than what is was with uc,cause you know you just can’t go anywhere,and if you eat pretty good then that’s even better…lol..take care let me know if I can help in anyway.

  4. Lisa OH
    LisaJanuary 7, 2013 at 3:16 pm #

    Hi Marti. I would at least try the J pouch for a while to see how you like it. I’m 2 1/2 weeks from my takedown surgery and the J pouch is WAY better than the bag (which I had for about 10 mos). The surgeries are rough, but the end result is totally worth it. When you go poo with the J pouch, it is nothing like having UC at all, unless you have C diff or pouchitis, both of which are treatable. There is no pain, urgency, colon spasms, nausea, cramping, blood, fatigue, light headedness from anemia. The poo just slides right out and you go on with your day.

    Best of luck to you,

    Lisa

  5. MelissaJanuary 7, 2013 at 4:42 pm #

    I love my bag. I had my surgery at age 30 (I am now 53). My colitis was so severe my entire colon and rectum were involved and had to be removed so no J pouch for me. It took me a long time (several years) to really adjust to my bag but the trade off is no UC symptoms. The bag gave me a new life. It is hard to put into words what that really means. I was 30 years old thinking I would live maybe 5 more years. I was so sick I couldn’t envision living to old age. Seriously! I love life now and have loved life since my surgery. I’ve only had one surgery and no complications…knock on wood…and I’m looking forward to old age. Well, older age! I just thought you should hear from a happy “bag” lady.

  6. NatalieJanuary 7, 2013 at 8:15 pm #

    Hi Marti –

    I found the following web link and thought you would like to read about it (and anyone else who wants to read it). Hope this will help in your decision. Good Luck.

    Copy and paste this link into your browser:
    http://www.nytimes.com/1982/05/03/style/ostomies-no-longer-the-secret-surgery.html?pagewanted=all

    • LisaJuly 5, 2014 at 5:25 pm #

      Thanks Natalie! This is a good source to read. Our 18 year old daughter just had her j pouch surgery and will do second take down part during Christmas break. It can be scary! It’s nice to know others have endured and things can get better.

      • LucilleJuly 6, 2014 at 1:02 pm #

        Just make sure your urologist/surgeons are open to criticism and can accept failure of their technique after all surgeries. After J-pouch and take-down, I apparently had a family of fistula that formed from a microscopic leak at the anastomosis site that was misdiagnosed as an unrelated “boil” and was over-dosed with non-effective antibiotics. After four months of deteriorating health – losing almost forty pounds – and still not responding to the antibiotics – I consulted another surgeon who reluctantly took my case from his colleague – and immediate surgery revealed massive fistula where the small intestine had been connected to the rectum. The site was necrotic and almost led to gangrene. Fortunately, my youth, the massive doses of antibiotics to treat the “boil,” and otherwise “good health” saved my life. After ANY intestinal surgery and fistula occur – the very FIRST thing a surgeon should suspect is an improper anastomosis (joining) of the intestines. Good luck!

  7. blakeJanuary 7, 2013 at 11:05 pm #

    Hey Marti,
    I was in the exact same predicament you’re facing not too long ago. Even when I had the bag, a big part of me wanted to stay with the bag because it was easy and I had grown to like it. I had my ostomy bag for 9 months. I decided to go with the 3 part J pouch surgery, knowing that I didnt have to go through with it if I liked wearing the ostomy bag. As time got near for the second surgery, I had to make the choice. Like you, I was 30 and happily married. I decided I needed to give the J pouch a shot. So I did. Everything you’re scared of, I was also scared of and much of it is true. I’ve had my fair share of night time accidents. I go to the bathroom 5 to 8 times a day. I havent had any rectal pain or pouchitis yet, but do get butt burn every once in a while. But even with all that, I would still do it again in an instant… and I even really liked the bag. Ive had my J pouch since August 2012, so about 4 and a half months now. I hated it the first two weeks, but you have to go through some rough patches before things start getting better. Life is really good for me right now. I dont think much about my J pouch anymore, I feel back to normal again and do not miss my colon one bit. I would atleast leave the door open for yourself to get the J pouch. If you fall in love with the bag, then you can stay with it. If you decide you want to go with the J pouch, then you can go that route as well. I wish you luck, sending positive thoughts your way. You’re going to feel much better without that crappy colon.

  8. HeatherJanuary 8, 2013 at 9:19 am #

    Hi Marti,

    Thanks for your post. I’m a 36 year old happily married mother of 2 very active boys who also deals with stubborn UC. I’ve opted for jpouch surgery and my first one is scheduled for January 15th. There are lots of questions and concerns about surgery but I know the result is worth it. I’m not looking forward to the bag but from talking to everyone else who had the surgery I know the future without UC is much better than the past. It is a personal decision and I wish you all the best in 2013. I’m going with the jpouch and can’t wait to be rid of my temperamental colon!

  9. KJanuary 8, 2013 at 6:50 pm #

    Hello Marti,
    Others have given good advice, so I don’t know if I really add much. But I have had a “bag” for 38 years, had emergency surgery 3 days after I was diagnosed with uc. The upside is no uc with all its terrible symptoms, and no need for meds. The downside is emptying it a number of times a day/night, and changing it (in my case) every 4th morning. You mention feelings about a stoma. With the bag on, I don’t really even focus on the stoma. Every 4th morning when I change the bag, I of course, work with/around the stoma. But when I do have feeling it is really about how remarkable it is, for I would have been gone decades ago now without it. Wishing you all the best as you go forward.

  10. KyleJanuary 8, 2013 at 11:15 pm #

    Hi Marti, my name is Kyle and I had UC that was in a very similar state as yours is now, for 3 years. I am 20 years old, and will be 21 on January 13th. On December 14th, I had my colon removed and the j pouch constructed. Just to share my experience so far and hopefully give you at least a little bit of help in influencing your decision, the bag is definitely taking some getting used to. Sure, it’s hard for a 20 year old to picture having an ostomy for life, but I can see how people manage and would get used to it over the years, while maintaining a lifetime of happiness. I am scheduled for take down surgery sometime in early February and I do have some concerns similar to what you’ve mentioned. I have also passed mucus through my anus, but in all honesty using the j pouch to do that felt so normal I didn’t even realize it was not my colon. However, I am aware of the complications with a j pouch and I believe they can be controlled if the patient is responsible. Keeping track of what you eat, when you eat and how much you eat is a huge factor as to when you will go (hopefully avoiding night time accidents) and exercise can do nothing but help. I’m sure that I made the right decision to get the j pouch, but if it doesn’t work, like many others have said it is not permanent.

  11. LisaSJanuary 9, 2013 at 6:06 am #

    Hello-
    My husband is looking at total colon removal after not responding to steroids and now having allergic reactions to remicade. The GI wants him to start humira as a last attempt at medical treatment, but after reading about the side effects we are having second thoughts. He was just diagnosed this last summer with severe IBD (doctors still don’t know if it is UC or Crohns) that is through his entire colon. He went from fine to hospitalized with 50 pound weight loss in 3 weeks (did not need to lose any weight). His only symptom prior to that 3 weeks of severe symptoms was loose stool for about a year, but only going once a day so something he didn’t pay much attention to. We went to the ER twice and a GI in that 3 week period and all 3 doctors felt he had a bad virus due to how fast the symptoms came on and how he didn’t have any of the other expected symptoms and not in the standard age group (he’s 40). After he was finally admitted and had a colonoscopy they said it was one of the most severe cases they had seen – “like a bomb went off in there” and so “non-textbook”. I had never heard of either IBD and felt 3 weeks was a long time to diagnose something so severe, but the GIs told me that people usually would have needed to go years with severe symptoms to get to where my husband is at and sometimes it takes years to get diagnosed. That didn’t make sense to me at all. Anyways, now that it seems that surgery and humira are the last 2 options I am doing a lot of research on diet modification and am wondering if anyone in this chain (or others) tried diet modification prior to surgery? All GIs have told us that diet has nothing to do with it, but common sense seems that diet would have something to do with your digestive system. Adam seems to have been in the same situation that my husband is in and was able to go into remission and I have met others who were at the surgery stage who went on a variety of diets that not only saved their colon, but also put them into permanent remission without medications – a homeopathic nutritionist we went to recommended a yeast diet (basically no gluten or dairy), a yoga instructor who is one of the people who saved his colon through diet modification recommended the Ayurvedic diet. The fear we have is that if diet modification doesn’t work he may end up back in the hospital in the critical state he was in this last summer. Any feedback would be appreciated.

    • EllenJanuary 13, 2013 at 8:26 am #

      Hi Lisa:
      I had a similar experience as your husband’s, except the part it took me about 6 months from my first dianosed until I almost required a surgery to remove the colon but I was saved by a medicine Tacrolimus and not Imuran since Imuran takes about 2-3 months until its effective (Tacro shows quicker effect and originally used for patient who received an organ transplant so his/her immune system would not attack the donor organ although the dosage for UC patient is much lower than those patients who get transplant.) I guess according to my doctor I was one of the classic case because I was steroid dependant because as soon as they reduced the dose of IV steroid I immediately became worse and flared. I also now take pre-biotics in powder form plus Sulfazine and I am in remission. I was also told by a doc that if I could not get adequate sleep for consecutive days the flare would occur/I could not go into remission. As far as the diet goes I eat yogurt, fish almost every other day (lucky me I live in a country where seafood is abundant) and fermented food and low residue/fat food to let my intestine heal initially. After I was in remission for 3-4 months, I can eat normally except non greasy nor spicy food (I know it was long time for my gut to heal because mine was so inflamed that they had to feed me via IV for 1 month, couldnt eat anything for 1 whole month…even water gave me diareah and lost a lot of weight like your husbands… I dont want to remeber those days…it was so bad…). I am sure your hospital dietician can advise what food to eat and avoid, but generally low reside and low fat food for me until my intestine healed. I also try not to get stressed out and Yoga or sports (like walking) is good I was told because its a stress reliever but extreme sports is not good unless if I can get enough rest to let my body heal so I would avoid exercise like marathon or hard sports/extremely stressful jobs. Ah another thing to mention I became infected with a Cytomegalovirus because my immne system was compromised due to the high dose of steroid they put me under to control the flare, and people who get infected with Cytomegalovirus gets really bad ulcers that are deep and bad…so you may want to ask the doctor to test him on certain virus infection so that they can give him antiviral medicine. I hope your husband can go into remission soon and find the medicine/lifestyle that works.

    • TiiniTete
      TiinityJanuary 14, 2013 at 9:25 am #

      I am a tough case and had surgery only one month after diagnosis. They left me with a bit of colon ,10 cm, which is still getting inflamed and so I am having flares and quite bad ones. And I never responded well to medicine…

      Now during my last flare I started with the SCD/GAPS and it has helped. I believe that most of us could get our life back with diet, supplements (vitamins, minerals, aminoacids, hormones,HCL betaine), herbs and relaxation (like yoga or exercise). BUT the problem is that we are all different and that the diet needs to be customized to fit the person and this means that it can take time.

      For me it has taken 6 months to stop the bleeding with the diet and still I have sometimes a small amount. But I would say it is worth to try (once you get used to the food you realize it is food for kings and queens). But if I would give an advice it is to not assume that just cos it’s on the allowed list you can tolerate it. Also try from the very beginning to look at what you feel tolerate today. For me I knew I couldn’t tolerate fruits but I was in a bit of denial and constantly overeat fruit. Also beans and peas are really good for me and I cut them out until very recently since the protocols says you should be close to fully healed before trying these. For me however these are “healing”. Now when I am on them I feel much better, UC wise, even though you get a bit of gas from them. For some people going on a full meat diet is good and others not…

      I hope you husband will recover in one way or another! All the best for you.

    • Mike from Ohio
      Mike HJanuary 20, 2013 at 6:23 pm #

      Lisa if it is Crohns then the colon removal is permanent and will probably be stuck with a bag forever because the Crohns will attack any type of pouch that is created to replace te colon. If it si UC then the colon removal will cure it 100% just as it has it has for me and the J pouch will work. You should ask your GI to do the Promitheus blood test on him, it will tell you if it is UC or Crohns but is costs $1200 for just one test. I to chose to skip Humira because I have heard nothing good about it for UC patients is Remicade failed as it did for me.

    • ChristianNovember 24, 2013 at 10:48 am #

      I’m a 32 yr old, former UC patient. Tried diet. It absolutely does not work. I tried everything on the market. It was hard to accept, but I had my whole colon removed and J pouch constructed. About to have take down surgery next week. Often feel like giving up. No support system. But I know it will get better- for me and your husband. Stop playing around with diet. It might jeapordize the success of the surgeries. Best GI on the market is Dr. Remzie at the Cleveland Clinic in Ohio. Do whatever you can to get there. Praying for you.

    • ImarilynMarch 4, 2014 at 3:31 pm #

      I had my colon removed two months ago at age 64. I suffered with symptoms for five years. Apparently I am on the older side to have this problem. My Gastroenteroligists tried every medicine possible. I am positive that diet has nothing to do with UC. Don’t waste much more time trying the diet theory. It will only get worse and make the surgery more risky. The risk of infection can be high after surgery depending on how sick the patient is.

  12. SondraJanuary 9, 2013 at 9:22 am #

    Such a personal decision. As you’ve seen there are people who wouldn’t give up their ostomy and others who love their pouch. I was an early poucher; I have an S pouch, precurser to the J pouch. When I had my surgery in 1982 I was told that my ostomy was specifically designed to be temporary and I hated it. I was nauseous all the time and only had i7 6 weeks before they removed it. A few weeks later I ulcerated in my rectum and the surgeon mater of factly said OOPS, you don’t have UC; you have crohns and need a permanent iliostomy. It has been 31 years and I still have that S pouch. It’s not perfect. The first few years (yes years) were very rough and I still have issues but I have learned to live with my altered plumbing. I have seen doctors who want to take it out, but it’s MY CHOICE, not theirs. And this is YOUR CHOICE. Do what will make you and your spouse happy and know that neither solution is perfect. I wish you all the best and whatever you decide will be right for you.

  13. Baker
    BakerJanuary 13, 2013 at 6:21 pm #

    Marti,
    I’m 10 days out from takedown and like others here I’m very happy so far. Not that it’s all been easy but I think it’s a small price to pay for the long term functioning j-pouch. You’ve already made the hardest decision if you’ve committed to removing your colon, by comparison the takedown is much simpler. And while you might need to use the bathroom a lot it’s nothing like UC, no bleeding, no urgency, and hopefully no ugly meds either.

    I can’t imagine with the medical and surgical advancements anyone not trying the j-pouch route if its an option, granted each individual has a different scenario and I by no means think they are wrong. You know all the other arguments, bag maintenance, sleeping, intimacy, active lifestyle, etc.. Good luck to you and let us know how it goes. I’ll have another really detailed update on my takedown up shortly to share with you and others about my experience.

  14. Mike from Ohio
    Mike HJanuary 20, 2013 at 6:15 pm #

    Wait until your bag leaks or pops on you at night and you roll in your poo all night or have it bust on you while driving. These type of events will have you choose the J pouch surgery. I am 10 past my first surgery and so far the bag sucks, cant wait till the J pouch days.

    Mike

  15. Mike from Ohio
    Mike HJanuary 20, 2013 at 6:30 pm #

    Marti if you choose to do the 3 step surgery will you have time to decide pouch or bag after surgery number one. This will give you the chance to live with the bag before surgery two. If you choose the 2 step you will have to decide before surgery number one. I chose the three step because they can do the entire process laproscopic with the biggest cut only being 4 inches long compared to the slice and dice cut with the 2 step surgery. I have already had the first surgery which was total colon removal with only a 4 inch cut and I am scheduling 2nd surgery to build the J pouch in 3-4 months.

  16. CatherineJanuary 27, 2013 at 5:54 pm #

    My daughter had a bag for 4 months before her jpouch surgery. Her jpouch is working out well. She is down to 1 or 2 BMs a day. She liked her bag, and missed it after her jpouch surgery- she got over that. She is so happy with the jpouch, but knows if she had to go back to a bag it would be just fine!

  17. JennyMarch 1, 2013 at 3:06 pm #

    Hi, i’m 25 and was 21 when i had my jpouch formed. I have never looked back I hated having my bag and had 3 surgery removal of total lower colon & rectum, 2nd surgery of formation of pouch and then 6 weeks later my ileo takedown. I really haven’t looked back.
    In 4 years I’ve had 3 blockages and 2 full bouts of pouchitis, I manage what and when I eat and am just careful, I’ve learnt my triggers for blockages & pouchitis & the dreaded butt burn. I just avoid spicy food and if I can feel anything starting I go on a 3 day bland food diet so boiled rice/pasta and not a lot else. It works for me.
    J pouches aren’t for everyone and they do have issues but in my experience I gave it a go and it has worked for me with management, there are days i’ll use the toilet 3 times and days i go 10 times it all depends what i eat and even an ileo bag must be managed and you can still get blockages, burns and infections I just prefer to use a toilet rather than a bag. A pouch can always be reversed if it doesn’t work for you but I’d say give it a go. It’s changed my life and I have my confidence back! Best of luck to you all x

  18. EllenMarch 1, 2013 at 8:18 pm #

    Hi Marti:
    I am in a same position as you. I went to see a surgeon who specializes in J-pouch. After seeing the surgeon, my concern was the pouchitis and the number of bathroom I would be going, as well as a number of surgery I would have to go to resulting in increased risks of complications and the recovery time. Some people who had their rectum completely removed he said 23% of those would experience a leakage for life (not a lot but about an inch diageter so those have to wear a femine pad all the time and they need a cream to prevent butt burns). If the surgeon leaves 1.5 cm of the rectum so that the leakage is a lot less those would have to go through annual checkup for cancer developing in the 1.5 cm of the rectum left. So which ever the route of J-pouch surgeries UCers choose there seems to be certain risks of J-pouch. Aside from the surgery, there is always a risk of pouchitis. People told me before that its treatable but there is a chronic pouchitis, and if that happens I would have to get my J-pouch removed because I dont want to experience UC symptoms again (other chance to waste my time…and not being able to do things I want.)

    It seems like only sure way if I want to get rid of UC symptoms is the complete removal of colon including rectum, and going for a permanent illeostomy. I also found out that a permanent illeostomy and loop illeostomy are completely different in terms of care. Loop illeostomy is prone to leaking since its flush to the skin. But then illeostomy on its own comes with some challenges, body image issues, taking care of itself and leakage, but the right fitting and appliances with WOC nurse people live very happy and active life without issues. (there are lots of products out there to provide comfort as well now I was surprised.) There are lots of Youtube videos, people with ostomies filmed and I found they are pretty good.

    I am not married yet so I think dating may pause a challenge if I opt for illeostomy but there are ostomates out there who are much younger than me in their teens and they are very happy getting rid of their disease.

    A thought of getting UC after 2-3 surgeries supposedly a cure, is just not jellying with me, but this is a personal choice and I guess everyone is different.

    Have you decided which operation you would get?

  19. TammyJune 20, 2013 at 9:48 pm #

    Hello All, I was diagnosed with Colitis in 1999 at age 22, it was very sudden and extremely sick, it hit me like a brick with no warning. I was medicated with prednisone instantly and was never able to get off of it. I was lucky enough to have a wonderful loving boyfriend at the time who even proposed to me only 6 months after getting sick. (we’ve now been married for 13 years) I suffered a great deal in the first year of getting diagnosed and it went downhill from there. My first surgery was only 1.5 years after getting diagnosed and they could only do part of the surgery because i was so sick (on my death bed basically) (After less than 2 years, the surgeon said that my bowels were the worst they had ever seen… that is absolutly crazy that I went from 0-60 in such a short time. I elected to have the ileostomy for a year before getting my j-pouch because I had changed jobs and needed time to get my Surgery time off. I am now 36 years old, I’ve had my J-pouch reconnection now for 12 years. I have been a lucky one… no pouch infections (except post surgery infections which is very normal). over time my body has gotten used to going less and less. I sleep through the night without having to get up in the night. as for going #2, pretty much every time I pee, I go # 2 but it’s liquid so it’s no big deal anyway. Going every time you go pee seems like a lot but in the whole scheme of things it’s not, besides, your in there anyway. I never had any leaks until I had my daughter (naturally, she came too fast so couldn’t have a c-section) so now I know that I cannot eat much fruit at all or else I will leak at night (no thank you). I have gotten to know what my body likes and doesn’t like as everyone is different. I cannot have much fruit, raw veggies (they don’t digest well) chocolate bungs me up which is something I didn’t think was possible but I experience major bloating so I try to stay away from chocolate (keep in mind this is only recently too).

    I am very happy with my J-pouch and have never regretted making this decision. My only struggle now is losing weight, it’s not easy since I can’t eat all the fruits/veggies that Diets require. I love reading everyone’s posts as it’s exactly what I thought prior to going through my surgeries. ALl the scars are worth everyone of them otherwise I don’t think I would be here today if it wasn’t for the amazing medical procedures that they can do.

    I hope my story helps others out as there are alot of positive outcomes with the j-pouch surgery… oh not to mention… I don’t have to worry about the Public “Passing Gas” I can no longer pass gas normally since my surgery (some people can, I can’t for some reason)… only when my bowels empty in the bathroom… yay, no embarrassing situations…only a bit musical in the washroom when the time comes. lol I explain the gas as this. You have a balloon of water.. the air is at the top.. the only way the air will come out is if you drain the water… that’s how it seams with my j-pouch. lol

    Good Luck with your decisions… and hope everyone has a chance to be healthy and pain free soon.

    Tammy

  20. lineJuly 7, 2013 at 12:14 am #

    Definitly do the j pouch! give it a chance. I Had severe case of UC for 4 years before i got the pouch. at first i was stuck with the ileostomy, which was terrible experience for me!…. i had my j pouch for 2 years now and its life changing!!! i cant say im totally back to how i was before my diagnosis. But im completely surprise of how great it is… i can control bowel movement. No more pain and worries…No more terrible side effect from steriods.. I do experience more movement but thats totally depend on what you eat! so at least your in control!

  21. DebJuly 13, 2013 at 9:01 pm #

    Just wondering what option Marti went for?
    I was a sufferer of UC and had a J pouch op 24 years ago (wow time flies).
    At the time I was 29 years old with 2 young active children.
    I personally have no regrets about the surgery. I now have a life!!
    The operations did take a good 12 months to recover from. I still have the frequent visits to the loo but at least there is no pain. I now suffer from iron deficiency but that is fixable

  22. MikeJAugust 11, 2013 at 8:53 am #

    I am 36yrs old had UC tried meds: melasalimine, prednisone, remicade, naturopaths and probiotics. nothing worked for me. Chose to do surgery doing it in 3 stages was going to do J pouch but small intestine too short so had to do S pouch. I have done 2 out of 3 surgeries so far. Hospitalized 4 times after 2 surgeries due to 2 infections and dehydration twice. My only regret is not trying FECEL TRANSPLANT before surgery. Anybody thinking of surgery should at least research this before deciding to remove your colon since you will have to live with your descision the rest of your life. Removing your colon and creating a internal pouch or Ostomy should be your very last option. Also realize doing this will be a rough 2 years minimum including setbacks like infection, getting use to ileostomy or ostomy, dehydration, healing times,and getting use to new bowel movements I know when you feel very ill with UC you get desperate for solutions but my advice would be try or at least research FECEL TRANSPLANTS before opting for surgery. Also for the topic of permanent ostomy or J pouch , I would try J pouch first because if it doesn’t work out then you have an option for permanent J pouch but if I could go back in time I would try fecel transplant before any surgery. Hope you are doing well Marti/

  23. MikeJAugust 11, 2013 at 8:56 am #

    * correction in final statement: option for permanent ostomy

  24. Mia SanchezAugust 15, 2013 at 4:59 am #

    W-R-O-N-G. J- Pouch surgery is NOT a cure. Many surgerons either lie deliberately or are grossly misinformed. At least honest scientists admit that it is NO cure here:

    http://www.ncbi.nlm.nih.gov/pubmed/22876035

    Confront your surgeons immediately!

    Severe ulcerative colitis is systemtic and very serious. Surgery does NOT normalize the immune system.

    Yes, this surgery saves the lives of people who are seriously and extremely sick, but it does NOT “cure” anything. It manages it. I also think it is likely
    this surgery has been forced on people who did not truly need it.

    All extraterrestrial symptoms are in full place ( joint aches, potential liver scarring , iritis, skin lesions, light fevers at night are more) Inflammation of the pouch can be present. The exact type of pain, blood loss etc is still there in many- but far less intense. Not all of this is pouchitis In fact, treatment is necessary- hydrocortisone enemas. These will work far better than when you had the full blast disease.

    The microflora from our large intestines is critical to good health and crucial and central weight regulation. Significant weight gain in the following years after surgery is not surprising at all given this fact. Surgery gives you a whole new set of new problems. However, some people have no choice and must get it done. People in 1800 were not so lucky and died.

  25. GraceAugust 31, 2013 at 3:46 pm #

    Hi Marti,
    I had my colon removed October 2012 age 24 for sudden onset severe UC (after 5 years old very mild and limited UC). Tried all the drugs etc but in the end I had no life, couldn’t leave the house and was up all nigth every night on the toilet, plus all day. Couldn’t work, could barely brush my teeth because of the nausea.
    I decided to have the jpouch surgery (2step) so I could get my life back. The first surgery was very painful, but I had a full laparotomy. Even still, two days in and I felt so much better. No nausea, no toilet – it was great. I found the loop ileostomy very weird, but got used to it pretty quickly. I named her Miss Greg, which I found helpful to make it less of an alien. She mostly behaved, but not always. I would still have to empty my bag 6+ times/day, but didnt have to take my pants down to go to the toilet which was weird. I have pretty sensitive skin which did not like the adhesive of the bag. I had some pretty bad rashes which drove me crazy – even more so than the itchy butt I get now every now and again.
    I had my stoma reversed Jan 2013, which was a quick nip/tuck, only in hospital 3 days. The adjustment was hard, oh the burn. But all the right creams and wet wipes got me through. I slowly transitioned into eating whatever I like, learned to ignore when my pouch sends false alarms for needing to go to the toilet, and went back to work in less than a month. I’m a Physio in a hospital, so I’m on my feet all day running around. Good days I only go 3times, but I can choose when and where, and can hold on for hours and hours until its convenient. Had a few little accidents, but nothing major. While I liked the convenience of the stoma, I love my pouch. In some ways it’s just as convenient, but without the lump under my tshirt.
    It’s a big decision, but I think it’s definitely worth a shot. You cant believe half of what you read online. People mostly post there when they are having problems and not out living life. If you don’t like it, you can always go back to the stoma!

  26. LucilleSeptember 22, 2013 at 12:01 pm #

    I was diagnosed with uc at age 34 while living in Philadelphia. Prednisone, blood transfusions, remicade – nothing helped – but, gastroenterologist wanted to remain conservative. Moved to Boston while symptoms increased. Consulted GI surgeon who recommended colon removal, ostomy procedure, take-down, and j pouch – all over the course of 18 months. Four months after j pouch, a massive colony of fistula manifested in right buttocks. My surgeon, after examining me and performing a colonscopy up through what intestine was still left, said to keep fistula area clean and it would clear up. Well – I dropped from 159 pounds to 87 and almost died. I didn’t listen to reason and continued seeing my Harvard professor physician. My parents bullied me into seeking another opinion. The verdict: incomplete anastamosis (intestine that was re-attached to rectum had pinpoint holes at the surgical joint and the leaking feces created the tubular fistula that wound their way through muscles and tissue and ended up rotting their way to the surface of my buttocks. I was lucky that I did not die of sepsis. I am again with the permanent ostomy bag, have regained weight and strength, and am back to “normal.” The original surgeon should have used a “biologic sealant” to ensure that the anastamosis was air tight. Now – I don’t have enough intestine to try any more pouch remedies. Ulcerative colitis and Crohn’s are awful and finding a physician who is totally qualified is impossible. No one knows what causes these diseases and treatments are hit and miss. Good luck to all of us!

  27. EllenSeptember 22, 2013 at 10:37 pm #

    Lucille, you should put this comment on the main forum (Post Surgery?) with full story, so people can see it. I have heard similar stories when J-pouch surgery was done by not so experienced surgeon but with good brand name hospital. Harvard may be top university but not for J-pouch, this could have been done by Cleveland Clinic where there were many surgeons who have done countless J-pouch surgeries…increasing success rate. You can visit Cleveland Clinic for second opinion for J-pouch if you wanted.

    • Mike from Ohio
      Mike HSeptember 23, 2013 at 3:17 pm #

      Well Put Ellen,
      I just finished my surgeries at The Cleveland Clinic and my J pouch is working great and I have my life back. I feel like I did 20 years ago.

      Mike

      • EllenSeptember 25, 2013 at 12:23 am #

        Great Mike!! Its always nice to hear someone is doing well!

  28. LucilleSeptember 23, 2013 at 6:26 pm #

    Thank you, Ellen, for your comment. In retrospect, what really troubles me is the cavalier attitude of my physician while the fistula colony was leaking feces and creating an almost gangrenous condition at the anastomosis site. Surely, at Mass General and Harvard Medical School – I was not the only j-pouch patient to manifest a fistula post surgery . My surgeon did not suggest referrals or consultations while my body weight decreased and the fistula colony increased. I’m Monday morning quarterbacking but grateful to be alive – and still wondering why I allowed my condition to persist before insisting that something was very wrong with my post-surgery healing. At the first sign of a festering fistula – I should have SCREAMED at the top of my lungs and sought immediate re-examination of the j-pouch! That was a sign that feces was tunneling from an incomplete anastomosis! This has been an education, to say the least. I could write a thesis on j-pouch and fistula. During the ordeal, I was also prescribed an ineffective high-spectrum antibiotic – so, I’m probably antibiotic-resistant now. I’m lucky that the buttocks wound has now closed without skin grafts.

  29. Mike from Ohio
    Mike HSeptember 23, 2013 at 6:44 pm #

    Lucille You are right. At the first sign of any issue your surgeon should have done a scope and a CT scan. I had some pain between my second and third J pouch surgeries and my surgeon at the Cleveland Clinic immediately performed a scope and a CT scan to rule out any and all issues. Thankfully everything was fine and it was just post op healing getting in the way. I am now 2 weeks post takedown and feeling awesome again.

  30. MagOctober 24, 2013 at 3:40 pm #

    Hi, my husband had chronic uc for about 3 years. Then he had a bag for about a year then j-pouch surgery and the third one was to join it all up. He recovered from hospital quite well but one thing was still not right. It’s now about 2 months since last surgery and since then he is having bright red blood in his stool and going to toilet about 10 times in 24 hours and also has got some pain in his urine track and sometimes even can’t control his urine. He went to hospital and had endoscopic examination of pouch and was discharged the same day with mild inflammation of pouch. He got some antibiotic and rectum foam but didn’t work again. We are so worried that things are getting wrong again and just don’t know what to do……..please any advise?

  31. SammyOctober 24, 2013 at 5:09 pm #

    It has been 20 years since my total colectomy and J Pouch surgery. I have never regretted the J Pouch; it has been a miracle for me. I am 49 now and am starting to experience pain and blood only when I go to the bathroom and only every couple weeks or so. I have been to the doctor and they have ruled out pouchitis so I’m not sure what to do to prevent it or make it better. It’s always worse at night. Has anyone else had their J Pouch this long and are experiencing these symptoms?

  32. AshleyFebruary 4, 2014 at 6:17 pm #

    My name is Ashley. I am 26 years old. I was diagnosed with UC when I was 17. When I was diagnosed, I was so sick that I was hospitalized and treated with Prednisone heavily. Once I was on the prednisone, there was no getting me off. One day I could eat one thing the next day I was sick from the same food. I was also a new mother and it was very difficult to take care of my son always having to run to the bathroom. My doctor told me when I was diagnosed that if I were to ever need surgery that it would be in the three stepsand all the details. There were times I was in a remission but not usuallyoff the prednisone. I was on the prednisone for a good 7 and a half years or better. I tried anti imflammatories ,immune supressors, iv infusions, enemas, self injections, anything they could throw at me. I suffered from anemia often, developed osteoporosis, eventually liver problems. My doctor referrred to me different specialists and eventually decided surgery was the only option left. The last specialists was a no bs kinda guy. He put me in my place and got me off of the meds minus still being on the predisone. But he tried to get me on a lower dose. I was fortunate to have my surgery at Lahey Clinic in Burlington, MA. I got to the point where I was having accidents at work, and wasn’t able to go down the street to pick my son up from the bus stop. Even being in the house, I couldn’t make it to the bathroom. The pain was too much, my body gave out. When I had my first surgery, I was begging for it. I was so sick, I just wanted to feel better. Sure it was weird having a stoma but I got very comfortable with it, I learned to like it and was good at taking care of it. I was able to live, take my son out. I even started dating. I kept my first stoma for just under a year. I met someone right before my second surgery and he has stood by me. I don’t think hes ever really had to deal with any health issues but he is a very good man and supports me. I look forward to being done with my surgeries so I can live and make many memories with him. I didn’t know as much about my second surgery. I researched a little but was distracted with life. Work was busy, my new relationship was going well. But I went through with it. It has been 2 weeks since my second surgery. My stay at the hospital was not great. I had an NGtube, they were worried about my urinating, and when they ripped out the surgical drain, it was by far the worst pain I have ever felt. That weekend, my best friend was going shopping for her wedding dress, I am one of her two maid of honors. And my boy friend had an event for work, dinner, awards, dressing up. I couldnt be there for either and it killed me! I was very emotional over the weekend. My life got so good right before my second surgery. I was going out and spending quality time with my boy friend, a very new relationship. I was eating anything I wanted. After I came home from the hospital I felt a lot better, I did more research. I have spent some time with my boy friend and feel good about us and life after i am recovered. I wasnt worried he was going anywhere but i felt that this is so much to go through at the beginning. But he is very supportive ad cares. He is a keeper, but I knew that already! I don’t like my new stoma, the way it looks and works. But I am having my next surgery which will be the take down as soon as possible. I was super worried about having to go to the bathroom all the time after the take down, not being able to go out, having accidents, spending time with my boy friend and having an accident, being limited to what I could do with him, having sex again. I have read a lot of peoples experiences and I thank you all for sharing your stories. For me it feels better just to write it down or talk to someone about it. I hope my story helps other people.

  33. Roert1February 10, 2014 at 2:30 am #

    Hi Marti, I have had a j pouch for 15 years, following uc, I had a permanent ostomy bag for 8 months before deciding to go for the j pouch, Following the surgery i was ok for about two years then i started with pouchitis which then led me to be on antibiotics for years which did me no good, this caused me to get C-diff which then took more severe antibiotics, my advice is if you get on with the ostomy bag, then stick with it, I had the best 8 months i had for years, it gave me my life back, believe me pouchitis is more severe than colitis, if you are ok with the bag then stay with it. Good luck Marti

  34. J-Pouch PersonFebruary 24, 2014 at 7:53 pm #

    Hi Marti, not sure if you’ve gone thorough the surgery yet I saw you posted 2/6 was the date. If so, hope you’re recovering well. If you didn’t, or there is someone else that may benefit from my advice… try changing your diet. Go all natural, gluten-free, lactose-free. Read about what herbs/vitamins/minerals your body may be missing and take them no matter how gross it might taste or inconvenient it is to prepare a smoothie. I followed my Dr’s advice with visits, pills, and direction. NEVER DID HE RECOMMEND I CHANGE MY DIET! I was young and took the Dr’s suggestions. After years of surgeries, extensive steroid use, along with other menacing concoctions, I am now looking for ways to stay healthy with my J-pouch. In search the internet for healthy foods for people with missing guts I mostly find advice to eat starches, stay away from fruits (except for bananas) and avoid vegetables. I disagree. Eat a well balanced diet, mainly green, with additional nutrients as the MIA colon makes it harder for your body to absorb these nutrients. Some ideas? Make kale chips with sea salt, a spinach-strawberry smoothie with coconut milk and kefir, or eat greek yogurt with fresh pineapple and red quino. May as well sprinkle some chia seeds on it too. Drink LOTS of water. Oh, and stay away from processed foods and sugars that do no come from the earth. Food for thought. Cheers.

  35. SherryFebruary 25, 2014 at 12:13 pm #

    I am 58 years old and have a Brooke ileostomy. I have had this for 26 years and done exceptionally well with it. When mine was done I wanted a koch pouch but was to sick. My colon fell apart when they were taking it out so I had no option but the Brooke ileostomy and bag. I do not have many problems with my bag at this time but did in the beginning but things have greatly improved since then. It is always horror stories with either one. Make the decision you feel comfortable with. Pray about it and research. I cannot say what I would do today I have had a lot of problems do to the prednisone and multiple hernias. It is not easy.

  36. Saurabh SamaOctober 11, 2014 at 8:20 am #

    Having jpouch since 10 years. Facing lots of bms. gas. leaks. burning nsevere acne. Life is Hell. is there any solution except bag.

    • EllenOctober 11, 2014 at 4:04 pm #

      Have you talked to doctor yet?
      It sounds like you have pouchitus. I heard people get this condition and go back to UC medications, but sometimes I heard the parts sawn together to a pouch has come apart/loose, which causes leak and everything bringing back bad old UC symptoms. If you can, find the best surgeon who is famous for reconstructing pouch and have him take a look at it. In the mean time you could be taking UC medications and 24hr yoghurt to calm down your intestine. Flare happens if good and bad bacteria is not in a right balance. Try eating homemade probiotic yoghurt, sour kraut…anything fermented will be good for both small and large intestine. Good luck!

Leave a Reply