Monday, February 6, 2012

The Daily Life of a J-Pouch

It's been a while since my last post and I have been thinking that this is perhaps a good sign. Whenever I run into health hurdles, I turn to my blog for self-therapy. As my friend Jen put it in a FB post, "Writing: a profession for introverts who want to tell you a story but don't want to make eye contact while telling it." Therefore, a lack of posts is a good indication of my well-being since there is, effectively, no "story" to tell about a lack of good health. But I thought that for those of you out there that are faced with J-Pouch surgery, it would probably be helpful for me to describe "J-Pouch life at it's best."

It has been almost 11 months since my first surgery, which included a total colectomy, creation of J-Pouch (ileo-anal pouch anastamosis) and creation of an ileostomy. For those of you that follow my blog or know me personally, you know that I had a second surgery in June 2011 to reverse the ileostomy and a third surgery in November 2011 due to a high-grade small bowel obstruction that required an exploratory laparotomy and an eleven-day hospital stay. Now, you might think that running into very serious complications from J-Pouch surgery (extensive Portal Vein Thrombosis, several paralytic ileus, intra-abdominal abscess, several infections and a high-grade small bowel obstruction) might make me quite skeptical about the benefits of this life-changing surgery. That couldn't be further from the truth.

Every morning I wake up and every night I go to bed, I still smile at the fact that I am no longer on ANY medications. I no longer worry about flares, about becoming debilitatingly ill or whether or not I'll be able to go on that trip I booked for the Summer. Of course, I now worry about small bowel obstructions, the chance of J-Pouch failure and permanent ileostomy, global warming and the scary, although unlikely, prospect of Newt Gingrich becoming President of the US of A. I'm learning how to control these anxieties, though, and realizing that life tends to take it's own course of which I have no control. For now, I just feel downright lucky to be living a healthy life.

Daily life with a J-Pouch? I have to empty my pouch around 5-10 times/day. It is highly dependent on what I eat or how convenient it is to access a  bathroom. I say empty my pouch because that is what it feels like. It's a different sensation than before and I'd actually like to describe it as almost sensation-less. You learn how to build your muscles around the area to be able to hold the stool in. The longer you hold it, the more uncomfortable it becomes but I have NEVER had a problem with incontinence, pain, blood, tenesmus (the urge to defecate when there is nothing there, this happened to me often with UC), or extreme frequency (with a bad UC flare I used the bathroom anywhere from 25-40 times/day).

One issue I have had is with gas. I no longer have the ability to pass gas without passing stool. This can cause some discomfort as I try to hold gas in for long periods of time as to not be running to the bathroom too frequently. Overall, though, I see it as a non-issue as the benefits of no longer living with UC and the extreme pain and anxiety that come along with the disease (not to mention the frequent need to take a "time-out" from life and all its acitivites over the past ten years) far outweigh any of the small inconveniences of living with a J-Pouch.

If you are faced with J-Pouch surgery and have any questions at all, please ask! It's a daunting surgery and it's a long road to recovery, but once you're there you will never want to turn back.

35 comments:

  1. Dear Katie,

    I will be seeing my surgeon this Wednesday about scheduling my J-Pouch surgery.

    Of course I am scared because I consider myself a big baby even at the age of 60. But most, and certainly not all, of the comments that I read from J-pouchers are that they are glad that they did it.

    I am lucky to have a wonderful spouse to help along the way and I am getting very close to retirement which will hopefully reduce the stress in my life. So here we go!

    Thanks for your post. It was reassuring.

    Steve B.

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  2. Steve B.,

    You will not regret it! It's a very liberating feeling to not be living your life with a very unpredictable disease.

    I wish you the best of luck with your surgery, and please feel free to reach out to me at any point!

    Katie

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    1. Thanks Katie. I am pretty good right now because its been over 4 months since I had the colectomy and ileostomy. I have a bag which is a drag but hoping that the J-pouch is better.

      Again yours,
      Steve B.

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    2. Dear Katie,

      After having UC for twenty plus years with severe flares and a family history of colon cancer, I needed and had the j-pouch surgery. In my last severe flare, I did a fair bit of research on any new UC treatments, ileostomies and the j-pouch. I just wanted to add that many other j pouchers with blogs seemed to present the surgery and recovery as a breeze, claiming to return to normal bowel movements, eating whatever they wanted, and climbing mountains within days or weeks of surgery.

      I'd like to add to your experience by saying I think the surgery is a decision of last resort, or no choice and is
      life changing, both extremely freeing and debilitating in the short term and has unknown consequences in the future.

      Those who have it need to realize they will have a new normal life in more ways than one.
      Take good care, JP

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  3. Hi Katie, I am about to get step #2 done in 3 surgeries for my jpouch. (They are doing it in 3 steps because I was not planning on the surgery but was perforated and rushed into a total colectomy). My surgery is Thursday. Thanks for sharing your journey, it helps those of us that have to face this very scary and unknown journey. If you are interested in learning about my journey thus far, I'd love for you to read my story: myucjourney.wordpress.com. I'm so glad to see you have gotten your life back and I am trusting the same thing for myself:)

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  4. I have been suffering with UC for 8 years. I was under control with Immuran for 4 years. That was good, but I still hated the fact that I had to be on such a strong med with so many serious side effects and still even in remission, never quite felt like myself(very low energy). I also got malignant melanoma, which all my Drs agree could be related to my high dose of Immuran. I now relapsed 7 months ago. Immuran no longer works for me. I am on remicade now and it has not worked. I am suffering from chronic C. Diff infections and arthritis related to colitis. I am 42 years old and can honestly say that this illness is ruining my life. I have become depressed and can no longer function a normal life. My Dr. wants me to keep trying new/trial meds. I am ready for surgery, but a little scared. I don't want to keep putting poison(meds) into my body and worry about these flare-ups occuring again even if I am able to find a med that works for now. I want my life back. These stories here encourage me. I am trying to convince my Doctor that I am ready for surgery. Any advice?

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    1. Hi There,

      I am so sorry to hear about your situation. I do know exactly how you feel and the disease was running my life as well until I had surgery. I have found in my experience that GI doctors NEVER want to recommend surgery, and they often wait until toxic megacolon or another emergency situation sets in before their patients take the plunge. I love my GI, but even he did not recommend surgery for me until it was direly needed (even at that point, he tried to offer other unpromising options). Surgery comes with its own set of risks and complications, but it can also offer you a medicine-free, pain-free life. As someone who is 1.5 years out of J-Pouch surgery, my feelings about having the surgery have waxed and waned, but overall I have no regrets. First of all, you don't necessarily need your GI's "permission" to have surgery. Meet with a reputable colorectal surgeon who has plenty of experience with J-Pouch surgery (or even more than one) and get their opinions of your situation. Beware of surgeons, too though, some can be quick to jump at surgery. Before meeting with a surgeon, consider these things:

      1. Are you OK with the permanency of the surgery? You will never again have a "normal" digestive system and will likely still use the bathroom 6-8 times/day (keep in mind this is PAIN-FREE and you WILL have control of your bowels, so it is VERY different).

      2. Know that you will not be completely disease-free. I have had pouchitis two times and have had colitis-like symptoms and needed long courses of antibiotics to clear the infection. THAT SAID, pouchitis is NOT as bad as colitis in that it is not painful. You will have urgency and less control or your bowels and frequency is similar to UC. It is not guaranteed that you will get pouchitis, though, but it is possible and can be discouraging.

      3. Be prepared for a long recovery and possible complications.

      I know that sounds negative, I just think they are important things to consider. As another J-Poucher said to me before my surgeries, "you have to be in a really bad place to be happy that you went through with surgery." I tend to agree with him. On the positive, I am DEFINITELY happy I had the surgeries. I do not have normal bowel movements, I use the restroom frequently, but I have been more or less medication-free, I do not have the anxiety UC caused, I do not have side effects from the horrible medications, and I am no longer in pain, AT ALL. It is a big surgery and a huge decision, but it is one that I have not regretted once (though at times I do feel frustrated).

      I don't mean to scare you. I had a lot of complications and can still say I am very happy I had surgery. These surgeries CAN give you your life back, and there is nothing that is more important than that.

      Please feel free to reach out to me with any other questions. Also, if you'd like to reach out to me about any personal questions that you don't want to publicize on the blog, please feel free to email me at kboccard@gmail.com.

      Best of luck with your decision making and I wish you much health and happiness in the New Year.

      Katie

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    2. i myself have had a j- pouch for the past ten years and I will say it was the best decision I ever made! I feel like it gave me my life back! and have had very few problems ,

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  6. I am going in for my J pouch "activiation" on April 23rd, 2013. Can't wait. Have not been a fan of the bag but I know a necessary evil. So happy to have the UC pains gone! Looking forward to somewhat of a normal life again. I too fear the failure of the J pouch but I will be vigiliant in my eating habits! good luck to all past and future patients!

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  7. How long does the recovery take from the step 2 operation (creation of the jpouch) and what about the final operation???

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  8. Well, that depends on many factors. For example, how healthy are you going into surgery? That will be a major factor in your recovery time. Also, are you having steps 1 and 2 in a single operation, or are you having 3 surgeries. I had steps 1 and 2 done in one single operation and had step 3 done three months later. It took me 6-8 weeks after the first surgery to really be able to resume my life normally, but never felt totally back to normal before my next surgery which took place three months after the first. My final operation (takedown) was less intense. I would say I felt fairly well after 2-3 weeks. Totally recovery time (amount of time it took me to feel TOTALLY back to myself) was probably 5-6 months. That said, I had major complications from both surgeries (see earlier blog posts) and was also very ill going into the initial surgery. I had a third surgery in November of that year from a complete small bowel obstruction caused by scar tissue from the surgeries. This was a major operation as well, reopening my old scar for a laparotomy. I was in the hospital for two weeks. Because I went into that surgery healthy (it was an emergency surgery after a very acute onset), I recovered MUCH more quickly and was completely back to myself in two months….

    Hope that helps!

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  9. My 17 year old daughter had her J pouch surgery Octber 23, 2012 following 1.5 yrs of unresponsive UC. The only medication that help was 80mg prednisone. My husband had J-pocuh surgery following 20 years of UC 12 years ago. My daughter's response to the Jpouch is different from my husband. She does not eat well and doesn't always take her vitamins. I seem to scold her daily. She is still going about 10-12 x a day. She looks very run down and has lost a lot of weight. I don't think she's drinking enough water either. She says she's fine. I think she may just want time not to DO anything. She is taking 8-10 immodiums a day. Is all of this normal?

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    1. Hi Christine,

      I am sorry to hear your young daughter has had to go through all of those terribly difficult things. I was diagnosed at the age of 17 (I am now 28) and I can attest that I was very unwilling to help myself for a very long time. That, I can attest, is a normal thing for a 17 year-old to do. It was years before I was willing to try alternative medications/therapies, to be vigilant about my diet and medications and to do anything I could to stay healthy. 17 year-olds have a knack for being difficult. I am certainly not a doctor so I do not want to offer any medical advice, but from the standpoint of being a patient, I can tell you that I went 10-12 times a day for about 18 months after my takedown surgery. I still go about 6-8 times/day. I lost a ton of weight and only gained it back after getting pregnant 1 year after my takedown. I never took immodium. I find that I am still VERY thirsty all the time and constantly guzzle water. This has lessened over time. For the first few months out of surgery I needed to drink at least 15 glasses of water each day to stay hydrated. Now I probably need around 10-12. Certainly more than your average person. However, everyone is different and everyone's body is different and will react differently to their pouch.

      As a mother, I am sure it is impossible not to worry. I am a new mother myself and can only imagine. I can also attest that despite the fact that I am married and in my late twenties, my mother still worries sick about me and my health. As a fairly young J-Poucher, though, I can tell you that your daughter will be fine and live a very healthy and fulfilling life. She'll figure out a routine that is best for her! it is very normal to be run down and to have lost a lot of weight. I was very run down for a very long time. I still don't have the energy that I did prior to UC and surgery, but I am able to live a very full and healthy life. :)

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    2. As a mom, I would say that it is important to do what you can to support your daughter without smothering her with un-wanted monitoring. Remember that she is 17 not 7... soon her medical decisions will be all hers, unless she invites your input.
      I know from experience how hard that can be. My 17 year old daughter had really rough senior year of high school. She had her total colectomy in December 2013. Healing from that was extremely slow, in part because of all the steroids she was given in hopes of avoiding the colectomy. She managed to graduate in June and the next week got her j-pouch built. On August 1st she got the take-down and 3 weeks later left for college. She did lose a lot of weight during all of this. But, what I am getting at, is that THERE IS HOPE!

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  10. Hi katie
    I have been in hospital for 10 days .... they are trying steroids and maintenance meds
    the other option is surgery
    i am concerned that we wait to long and i wont be strong enough
    i am scared but cant live like this

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    1. Hi There!

      I am so sorry to hear that you are so sick. I have been there and I know how horrible it is. I think it is totally natural to be scared of J-Pouch surgery, I can't imagine anyone that wouldn't be. I can tell you though that it will make your life so, so much better. Just today I was thinking about how I could take my daughter to the doctor and not have to worry about where the bathroom was and whether it was occupied every step of the way there. I am two years out of J-Pouch surgery and am still thankful every day for the quality of life it has given me.

      You shouldn't have to live with UC. And you don't have to. Surgery is a scary and not ideal, but wonderful option for UC patients.

      Please feel free to email me if you have any other questions! kboccard@gmail.com

      I very much hope you are feeling better.

      Katie

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  11. Hi. it's been enlightening to read some of the comments here. I'm 44 year old male, have had UC for 20 years. Unfortunately my latest colonscopy revealed low grade dysplasia in several areas of my colon. I've been asymptomatic with UC for the last 4-5 years with Immuran as the only medication. My Dr's have recommended surgery and I have it scheduled for July 24th.

    While not taking medication with such serious side effec will be welcome, it's hard for me to wrap my head around what I'm getting myself into here. I've been extremely healthy with regard to the UC for so long I almost forget the symptoms and what it felt like (I do remember how awful it was I suppose I'll never really forget).

    I feel like I'm going to be going backward here. From a completely regular situation where I can go where I want and do what I please to life with a bag and then j pouch. Seems so weird, like I'm getting surgery I don't need.

    I know i'm a hight colon cancer risk with the dysplasia and lengnth of time i've had the disease, but this is troubling me greatly. i have 2 young children and another on the way.

    wondering if there are others out there in a similar situation. feeling great but needing this surgery.

    Thanks....and here's to everyone's health!

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    1. Hi There!!!

      I know someone who went through exactly what you describe just last year. I met him through my blog and he said he would be happy to talk to you. Please feel free to email me directly at kboccard@gmail.com and I will pass along his email. I thought of him immediately when I read your post. Of course, please feel free to ask me any questions via email as well!

      Best,

      Katie

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  12. Katie,

    I had steps 1-2 completed on August 21, 2013, and anticipate having step 3 surgery in early November. Right now I'm trying focus on the long-term benefits because I have been having a really hard time with my ileostomy. The skin surrounding my stoma has been infected since surgery and it is extremely painful. Nothing seems to work. I just keep trying to keep my eyes on the prize. I am so so glad that I don't need to map out every single bathroom and worry about it being occupied, just for a routine trip to grocery store. I was first diagnosed with UC when I was 19 (I am now 37). The first couple of years struggled to get into remission. However, once in remission, I was fine for several years. I had a baby when I was 29 and after giving birth, my UC came back with a vengence (I was also diagnosed with MS). I have not been able to get the UC under control since (almost 8 years). It has been an absolute nightmare. I have been fed up for so long and just waiting to be able to get the colon removed and be done with all of this. During the Summer my latest colonoscopy showed dysplasia in many different areas. With the length of time I've had the disease, and a history of colon cancer in my family, the surgery was a slam dunk. There was no option. I think this made it easier for me to deal with. However, the first surgery really REALLY kicked my butt. It was brutal. That's the only way I can describe it. But I'm preaching to the choir here, you already know. I'm still healing, and about a month away from the reversal surgery, but I already feel like a different person. After surgery the surgeon said that my colon was far more diseased than they even thought and that no amount of medication would have ever put me back into remission. Knowing all of this has also helped my mental healing process. I picture myself a few months from now and hope to feel as good as I think I will. I don't know why I'm ramblng so much. HA! I've thought about blogging about this for a long time, but once I start writing, I just can't seem to get it out. How do you tell complete strangers about having no bowel control for years? About having a bag? It's a very intimate thing to discuss so openly. So thank you for giving me a sounding board.

    Jennifer

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    1. Jennifer,

      So sorry to hear you've had to deal with all of that. And to answer your question about blogging, you just do it! I've found that talking about bowel control and other shit-related topics, I've helped more people than I've grossed out. And those that I've grossed out, well, they probably just don't read my blog! It's not easy to put yourself out there, but writing has been cathartic for me and helped me pull through my bad times, plus knowing that I've supported other people going through the same thing outweighs the sheer mortification of it all. ;).

      Hope you're feeling better. Please reach out to me anytime! kboccard@gmail.com

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  13. Hi Katie--I'm 57, and I had UC from age 20 until surgery in Jan. 2013. 36 yrs. of UC was rough. I had so many meds, and until I almost bled to death, I struggled. I had stage 3 colon cancer when they finally did the J-pouch on me. I am still waiting for the take down stage. I don't miss the problems of UC.. I had to take early retirement from my career as a librarian
    The financial loss for me has been very large. But at least the UC is gone. After 6 months of chemo, I'm in remission for now. wish me luck on my take down. How long does it take for you to have normal movements once that is done? Michael

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    1. Michael,

      So sorry to hear about all of this. Colon cancer on top of UC- I can't even imagine it.

      It took me 6 months- 1 year to have maximum control of my pouch. That said, you will be feeling fairly well with decent control within about 2 weeks. And keep in mind that you will never have "normal movements." I still go to the bathroom 6-8 times/day and I am more than 2 years post-takedown.

      Please feel free to email me if you have any other questions! And best of luck to you.

      Katie

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  14. Hi Katie,
    I had my first surgery on May 15th and take down on August 21st 2013 at the Mayo Clinic in Minnesota. Currently I'm experiencing frequent trips to the bathroom, about 17 times per 24 hour period, with the urge to go again about 5 - 15 mins later. About 75% of the time my stool is fairly thick. I read your last post and you stated that it took 6 months to a year to gain control of your pouch. Can you explain how you were feeling before gaining control? Were you going as frequently and feeling the urge as often as what I'm feeling?
    Thank you for taking the time in writing your posts, they are very helpful and appreciated.
    Jim

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    1. Hi Jim,

      So sorry to hear you aren't feeling well. I think you are most likely experiencing pouchitis. I have had several bouts of pouchitis (one very recently) and it is very much like dealing with a bad UC flare, but the very important distinction being you will not feel pain and should not see as much bleeding. With pouchitis you will definitely experience very frequent trips to the bathroom- I have definitely felt the need to basically sit on the toilet all day and night while dealing with a bout of it. You will need antibiotics to treat pouchitis, as it is a bacterial infection. Cipro or Flagyl are generally used, sometimes for several months to get the infection under control. While pregnant, I was on antibiotics for an entire trimester to deal with pouchitis.

      So, in response, yes, it will take 6 months - 1 year to get full control of your pouch. The pouch itself will slowly stretch out to accommodate more stool (which will lessen frequency of visits to the bathroom), plus your anal muscles will get stronger. You will also just get more used to your pouch. It takes quite a while to adjust to a pouch from having a colon. I believe I used the bathroom anywhere from 8-12 times/day in the first few months after surgery. I would say that 17 seems like quite a bit though, and the most likely culprit is an infection. Very treatable. Clearly, you'll need to call your surgeon or GI.

      If you have any other questions at all, feel free to email me: kboccard@gmail.com

      Katie

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  15. sorry to hear about those of you who are struggling with the process. I had my take down on Oct 2, 2013, I had posted inituially here on June 7th. Went through the ileostomy process without much fanfare. It was a minor struggle as I'm quite squeamish and was very reliant on my wife for changing ostomy appliance and what not. Also experienced some skin irritation around te stoma but nothing too serious,

    Take down was harder than I hasd antcipated initially, particularly the first week, which i had numerous bm's each day and the irritation that goes along with that. also a fair amount of surgical pain. I am however, happy to report that a lot has turned around since the Doc ok'd the use of up to 4 immodium a day. This has dramaiticaly changed my days and lessened bm's to around 6 a day, and maybe 1 or 2 overnight.

    I would hope that those who might be struggling with takedown have at least gotten this advice at this point from their dr. I've also paid great attention to diet and tried not to get too nuts too quick. not necessarily too bland, but a lot of bread, rice, cereal (not wole grain of course), pasta etc and am avoiding the usual culprits that generally cause problems (greasy, fatty foods, alcohol etc).

    Feel better than I thought I would, and am hopeful the rest of you will feel better soon too. (Calmoseptine and baby wipes have aslo helped witht he bm's)

    Regards

    Tom

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  16. Hello, I am 45 years old and its been 1.5 years i had my J-pouch surgery. I use bathroom for 10-15 times in a day. My problem is dat i feel EXCESSIVE PRESSURE AND PAIN WHILE PASSING STOOL . I m facing problem of excess gas also. I am eating velgut tablet 100mg since 4 months, daily once in a morning. Please suggest what should i do or eat to avoid this problem. earlier i was taking lomotil , but doctor advised to stop as i did not have problem of too liquidy stool , so I am taking velgut now fr excessive gas which is not showing any signs of improvement.

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  17. Please reply as soon as possible. it would be a great help. Thank you.

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  18. Hi,
    my 17 year old sister currently has an illeoscopy bag following a nightmare year with UC. She is considering the J pouch surgery at the minute and is terrified - specifically, if I may be so precise, of 'leakage' generally and during specific activities. Can you offer your experience so that we have a clearer understanding of how likely and or frequent that would be?
    Thank you,

    Emma

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    1. Hi Emma!

      So sorry to hear your sister is going through all of that. It sounds like you're an amazing sister, and rightfully concerned. I'm sure she appreciates all of the research you are doing for her!

      To answer your question, she may have leakage directly after the surgery, but it should NOT be a long-term issue. I had leakage for a couple of weeks after surgery, but have had very, very minimal issues with that since. I just completed my first triathlon, swimming, running and biking! and I did not have an issue at all. That said, many people (including myself) have limited abilities to pass gas without passing some stool. You just get used to not passing gas unless you're on the toilet and it becomes second nature very quickly. Not a big deal. The only other issue I have personally run into is if I get a stomach bug, the fly, pouchitis, or some other issue that gives me bad diarrhea, I will have pretty significant leakage, but you are home in bed during times like those anyhow. So, in short, in her day-to-day life she should be able to do anything and everything without having to worry about leakage. Her anal muscles will still be intact and they are the major thing responsible for keeping everything in. And she'll quickly get very good and getting used to the pouch. It can be discouraging at first, but within a few weeks she should be up and running normally and will continue to gain better and better control and less frequent trips to the bathroom for 6 months - 1 year after surgery.

      Feel free to shoot me any more questions on here, or feel free to email me at kboccard@gmail.com

      Best of luck to your sister, Emma! I promise she will not regret J-Pouch… and going back to ileostomy is ALWAYS an option!

      Katie

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  19. To anybody that reads this let me offer some hope...I'm 37 years old and was diagnosed with UC at age 14. The year was 1992. I knew nothing about the disease and knew nobody who had it. I was an exceptional athlete was in the middle of my freshman year of HS. It was brutal. I was put on massive doses of prednisone and sulpha drugs. They caused scoliosis within a year. A played HS baseball and basketball all 4 years while on the meds, although I was an all-state player and made several all-star teams I obviously never reached my full potential. I felt robbed. Upon graduating from HS I had the j-pouch surgery. Nothing could prepare me for how I felt immediately following stage one when I awoke with the bag attached and incredible pain from the surgery. But it will pass. I didn't mind life with the bag, it was so much better than life with UC . I could live with it forever if need be. When I did stage 2 and began using my built in pouch it took some time to get used to. But I did. I served a 2 year church mission just 4 months after surgery. Could not have done this with UC. I have now lived just about 20 years with my J-pouch. I have not been on any medication in 20 years. In fact I have not seen a doctor in 20 years. I do not recommend this but just stating the facts. I have not needed to see one. I am married have a son and have enjoyed my life. I have eaten anything I wanted but not without some setbacks. Diet is everything. Find what works. Be sure to check your vitamin levels, mineral levels, Hydration levels. These were things I was not told back in 1995. You will be at risk for low B12, potassium, dehydration. It's important to stay on top of those things. I did develop Rheumatoid Arthritis 2 years after my surgery. It lasted about 3 years and I have not had any flare ups since. I'm convinced it was a side affect to the prednisone. Again, diet is key. I wish I would have known in 1992 about diet and tried some diet changes before I had the surgery. Once you lose your colon you don't get it back. But having said that I have had 20 years of life with the pouch that I might not have had without it. I have achieved most everything I wanted in life. My j-pouch prevented me from nothing. Were there challenges? Yes. Did I have to plan my days according to my new J pouch? Yes. But just remember that nobody is perfectly healthy. Every person you see who you think has it made there is most likely a challenge they are facing. Physical or mental. Life is life. The body betrays us. Lastly, and I'll say it again. Diet is everything. Lose everything man made and watch the body respond in your favor. Focus every day on your diet. Diet is the key. I have 20 years of experience with a J-pouch. There is no one rule. My advice is to lose everything that is man made and go natural. Go organic, avoid the pesticides. I mainly eat eggs, fruits, vegetables, meats, red and white. Rice. I drink water with a pinch of sea salt in every glass. I juice carrots, beets, apples, and celery. I can eat anything I want, but don't feel as well when I do. I have eaten really well for the past 10 years. I attribute my diet to my better health. Anyway, hope this helps anybody out there. Being sick sucks. I know. But do your best. Don't think the surgery will just fix everything. You have an auto-immune disease and if you do not take care of your diet you will get trouble with other parts of the body as well. Your body will find something else to attack if your colon is gone. The Doctors won't tell you everything. Research on your own. Listen to people like me when the share advice. It can't hurt. Good luck. You are not alone.

    Sincerely,

    A Friend

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  21. Hi Katie,

    I had my illeostomy after total resection of the colon and rectum(except muscle) acute UC flare up since 3 months now. and I am considering the J-pouch option. I am 39 years old and I can't survive if I didn't work. I am so worried that in addition to my fears from the second surgery, and I dont know if there will be a third one or only they will create the J-pouch. I wonder how long time it would take me to go back to work which is currently a housekeeper work.. ;(

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    1. Hi There!

      So sorry it has taken this long to get back to you. I am sorry to hear about your situation. J-Pouch surgery is always a little unpredictable and every situation is different, but I would think you would be able to be back at work 1 month. Every surgery and every situation is different though. Please let me know if I can answer any other questions!

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  22. Hi There!

    So sorry it has taken me so long to respond. I am sorry to hear about your situation. Every j-pouch surgery is different and every surgeon operates differently, but if all goes well you should be able to return to work within 1 month or so. Please let me know if I can answer any other questions!

    Wishing all the best to you.

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