My J Pouch Journey Complete

me and my oldest daughter who just graduated from college

me and my oldest daughter who just graduated from college

Introduction:

20 year UCer that has just finished the j pouch journey and ready to get on with life!!! I am feeling great so far and hope it only continues to get better.

Some more about me:

From central Ohio and love to fish, hunt, coach basketball and just hang with the family. Oldest daughter just graduated from UT, youngest daughter is a freshman in college and playing soccer and my son is almost 14. I don’t think I am that interesting but my wife swears she has 4 kids with me around and my kids tell me the same thing. After going through what I have the last year I don’t get to uptight or worried about much anymore.

Symptoms:

I have ZERO UC symptoms!!!

My J Pouch Journey Complete

I have posted my first two surgery outcomes on this site earlier this year and it is time for the third and final one. Hopefully this will help those facing this same journey.

I came to this site when I first learned that I would have to have my colon removed after a colonoscopy in Oct. 2012. I was feeling absolutely terrible, trying to make it to the toilet 15 times a day and I say trying because I know there were time that I did not make it if you know what I mean and I was losing about a pound a day. This site not only gave me the information I was looking for but also some calm before the storm.

My colon was in such bad shape that my GI sent me to a surgeon at the Cleveland Clinic (God blessed this surgeon’s hands because he has done wonders for me) and told me not to wait much longer because my health was in serious decline. On top of the colon issue the UC had attacked my joints to the point that I had to have help standing up from a chair and getting out of bed in the mornings. At that point in time Vicodin was my only real relief in life.

My first surgery to remove my entire colon was in January of this year 2013. Needless to say I was scared shitless no pun intended but the crew at the clinic did an awesome job putting me at ease and when I realized I only needed a 4 inch cut to have it removed I felt a little better about it. The stay in the hospital only lasted 4 days but it was miserable now that I think about it again but nothing depresses you more than when you see your stoma for the first time and learn that you are now officially crapping from your belly instead of your butt. The recovery from this surgery really was not too bad because I had a 4 week supply of narcotics to get me through, again the only rough part was the learning curve on how to care for my stoma (sparky). I got a terrible skin rash around the stoma but nothing a visit to the stoma nurse couldn’t resolve. I did learn to get along pretty well with this end ileostomy and started to really feel good about it and all of a sudde n it was time for the next surgery. The joint pain got a little better but was still very painful at times.

The second surgery took place on June 5th and this was a doozy. It took the surgeon 7 hours to create my j pouch due to a few complications but he was able to work through it. I was in the hospital for 3 days this time but went home feeling like crap. Again, it was only a 4 inch cut but this time the recovery did not go so well. I was in a lot of pain a lot of the time and to top things off this new stoma I was sent home with was a loop ileostomy and leaked all the time. It took me a couple weeks and help from Hollister to find the right products to stop the leaking. I was also sent home with a JP drain to keep from getting an infection. This thing sucked bad!! It was always in the way and when the surgeon took it out it felt like a snake was trying to get out of my abdomen in a bad way. I wish to never think of that pain again. After a couple trips to see the surgeon and have my pouch scoped and 4 weeks prior to the third surgery I started to feel good again. The pain was gone butt now the mucous that is produced from the inactive pouch became a nuisance. About once a week I was on the toilet passing mucous all day long. The joint pain again got a little better which was awesome but I was really ready for the bag to be gone. I disliked this temp ileo so much I did not even bother to name it.

Again right when life was getting better again it was time for the third and final surgery on 9/11 of this year. This surgery was much less invasive and only took a couple hours rather than an entire work day like the last time. I woke up feeling great and really have never felt bad at any point since the final surgery which has only been 8 days from the time I am writing this. I was only in the hospital for 3 days again but could have gone home after day 1 but the Dr’s just like to make sure my food was settling well and the pouch was working well with no clogs before sending me home.

It was such a relief to wake up and realize that the bag was gone. I was going to post a gross picture of the opening my stoma left in my belly but just couldn’t do it. They left it partially open to heal from the inside out and to keep infection from brewing so needless to say it’s not a pretty thing but it looks better everyday and I only have to cover it with a gauze pad. I felt so good I did not want any narcotics this time but I did get a mild NSAID to help if needed.

Now the really good news!! I know it has only been 8 days and I know I will eventually have a bout with pouchitis or maybe even the dreaded C-diff but at just 8 days post op I actually feel normal again. I read many posts about the dreaded butt burn and butt rash and also of the gas that comes with the new pouch and the many trips to the bathroom and leakage I will have until my body gets used to the pouch.

Again, I know it has only been 8 days but I have yet to have the slightest hint of the butt burn or rash and I think I know why. For some reason my doctor told me to take 2 prevacid a day once I got home even though I do not have indigestion and haven’t since my colon was removed. I think the Prevacid not only prevents the acid from coming back up but I think it prevents the acid from going back down into my stools that would in turn cause the butt burn. Only hours after the j pouch was hooked up I started having my first small bowel movements and major farting from the pouch. I think all of this initial farting released all of the gas from my body so in turn I have yet to have the slightest gas pain that came with the first two surgeries. Now comes the part that I love the most. I was worried about all of the trips to the bathroom that I would have and leakage just because most everyone else was having them too after having the pouch connected. The first two da ys home I was probably going to the toilet every three hours but it has gotten better everyday and today it is just after dinner and I have only had to go to the bathroom 3 times and so far no time leakage and no sharting of the pants has occurred.

My new pouch is working great, I am sticking to the GI soft diet and probably will forever as long as I have the results I have now. I eat 3 smaller meals a day, avoid the sugars and snacks before bed time and so far so good. I wake myself up at 3am just to empty the pouch and it takes maybe 30 seconds to empty, put on a little butt cream to help avoid rashes and butt burn and back to bed for a couple more hours. It is hard to describe but I do know when the pouch needs to be emptied but it is easy to hold until it is convenient for me to go. The sudden urges of having to run to toilet just aren’t there. On top of everything else the joint pain is now at a manageable level. I still have a some minor issues with my joints but nothing like it was pre-surgery. Knock on wood and I do not know if there is any connection but since having my colon removed I have yet to even get a case of the sniffles even after the worse flu season my house has suffered in a long time earlier this year.

I feel truly blessed right now but also know that my journey with this new pouch has just begun. I thank God everyday now for the Cleveland Clinic and for most importantly how my friends and family that have helped me mentally and physically this past year. My wife has been a trooper through all of this and the company I work for was more than helpful and understanding. I know there are many details I could have added but I am more than willing to help answer any questions anyone ever has about UC or the j pouch procedures that I went through. One last little important thing to all j pouchers and future j pouchers. Make sure you wear a medical bracelet letting everyone know that you have a j pouch. In the case that you ever need something shoved up that back end again due to an emergency and you are not coherent they need to know because the typical colon hose will not fit and could cause major j pouch ending damage if forced in. God bless all UCer’s (and everyone else as well) and I hope my story helps someone.

Medications:

No meds really worked for me. I just learned over the years how to deal with the flares.
Remecade is the devil’s potion that actually made things worse.

submitted by Mike in the colitis venting area





26 Responses to “My J Pouch Journey Complete”

  1. bevSeptember 24, 2013 at 6:11 pm #

    Beautiful, Mike…just beautiful. Thank you SO much for sharing. It makes me feel a lot better about what may come someday.

    Cheers, and start living again!!

    Bev

  2. NatalieSeptember 24, 2013 at 10:09 pm #

    Hi Mike!

    Thanks for the very encouraging story. I’m sure it will help some people in their decision to have the J pouch procedure. I do, however, have a couple of questions. You said that you have to clean out the J pouch. Is the cleaning out just temporary until everything heals? Sorry to sound so dumb, but I have no idea what happens after the J pouch surgery. I thought you would just move your bowels normally and that was it. Also, you said that nothing should be shoved in the butt in cases of emergencies. I can understand that, but what about future colonoscopies. Will you still hve to have them or is there a different procedure for J pouchers? BTW, so glad to hear that you are doing so well. :)

    • Mike from Ohio
      Mike HSeptember 25, 2013 at 8:18 am #

      Hi Natalie,
      When I say clean or empty my pouch I do mean sitting on the toilet and doing the good ole #2, lol. Sorry I should have been more clear. The colonoscopy procedure is kind of the same for J pouchers but not as invasive because the pouch is much smaller and they do not put you under since they only go in about a foot at most. You must tell the GI, Dr or the tech doing the scope that you have a j pouch because it does call for a mch smaller probe. I went in for a CT Scan and the tech had no clue what a j pouch was and tried to use the regular size probe that is used for colonoscopies. I would not let him use it so he went and got the Dr and she got the proper size probe and all went well. Had I not stopped that tech he could have forced the wrong size in and cause damage to the j pouch. Unfortunatly, I am hearing that this is more common than people think. My GI said that an infant size probe should be used and not an adult size. I will have my pouch scoped yearly from here on out now. Thanks for the questions and I hope all is well.

  3. NatalieSeptember 25, 2013 at 11:08 am #

    Hi Mike!

    Thank you so much for the explanations Mike. I now understand. It’s nice to know these things. You never know if I will need the surgery in the future. I hope not, but you never know. I was diagnosed with UC later in life. I am now 67 years old but was diagned 2 years ago (October, 2011). I do worry about colon cancer as I age. I already had thyroid cancer so I guess I am even more concerned. Right now my UC is in remission with only occasional slight bleeding which could be as a result of internal hemorrhoids. Isn’t this site the greatest? As per Bev, I weaned myself off of Lialda and started taking Ultimate Flora Probiotic, L-Glutamine and Astaxanthin and have really been doing quite well…..thanks to Dr. Bev….LOL!! God Bless you Mike and continued good health to you!

    • bevSeptember 25, 2013 at 2:35 pm #

      Oh Natalie! Your continued success just thrills my heart!!

      :)

  4. kSeptember 25, 2013 at 4:36 pm #

    Congratulations, Mike. It is nice to have such a happy ending for such a horrible disease.

    • Mike from Ohio
      Mike HSeptember 25, 2013 at 5:51 pm #

      Thanks, you have no clue how nice it is to have the bag off.

  5. NatalieSeptember 25, 2013 at 4:39 pm #

    Thank you so very much Bev. You are such a sweetheart!!! :-)

  6. Diana HindleySeptember 29, 2013 at 4:47 pm #

    Hi Mike,
    Congratulations! Don’t know if you remember reaching out to me before your takedown. I went in the next day 9/12 for my first of 2 steps. I am so happy to hear that things are going so well with this final step. Your story is amazing, and I think you deserve to be happy and live life to the fullest now. I will refer back to your testimony as I get closer to my next surgery and remember the details and pointers about what to do. My surgery went well- there were a few hiccups in my pain management- the epidural came loose a bit- so I had numbing on only one side of my body- so I was in ALOT of pain that first day- trying to lay me on my side to get the epidural to work better on the other side- apparently this is a common thing that can happen. They also hooked me up to the pump or button thing to make up for what the epidural wasn’t covering- so I had double duty…but those first few days were REALLY HARD. I had to stay for 7 days. Like everyone says it gets a little better everyday. I am SO thrilled to have this evil disease out of my body. It was worth every minute of pain. I’ve been home just a little over a week. Still a little sore- but I’m eating and gaining weight. Amazing how easily I’m gaining weight and I tried so hard for 3 years to just gain 1 pound. I can already see how this is going to be life changing for me and my family. My girls are gonna get their mom back. I don’t really like the ileostomy bag- but I can deal with it for now- I know it is temp. All of your stories on this site gave me the courage to do this. I’m not even through the entire process yet and I’m already so excited and feel great I just want to shout out to everyone…don’t be afraid…I KNOW it is scary….I’m a 5ft 3″ 102lb little thing and I did it…so can you…..I’m so glad I didn’t let this disease have one more day…It already took so many days from me.
    My surgeon is truly my hero. I can feel my “old self” emerging already.
    So happy for you, Mike….wish you all the best with your J-Pouch.
    Diana Hindley-
    South Lyon, Michigan

    • Mike from Ohio
      Mike HOctober 1, 2013 at 10:44 am #

      Hi Diana,
      Yep I remember. Just be very careful in bewteen surgeries omn the weight gain. Once you start feeling better it is so easy to put on weight. I know some people that actally put on 50-60 lbs in between surgeries and because of that had to have the next surgery post poned until they thinned down a little but it sounds like you don’t have anything to worry about since you are a 102lb “little thing”

      Mike

  7. RicoOctober 3, 2013 at 6:18 pm #

    Good luck mike!!mine was done on 9-11-12,felling great no leaks ever going about 5 times a day no but burn?1 time in the middle of the night,if I eat small good meals my day is better,but I love food??lol and I’m drinking coffee again..haha I gained 25 lbs in a year,well hang in there buddy!!life gets better again!!

  8. DianaOctober 4, 2013 at 6:24 am #

    Hi Mike,
    I know you addressed this a bit in your comments from your previous article….but I’m wondering about the “rectal urgencies”. I’m just 3 weeks post-op (1st step of 2) and I’m feeling urgencies at several different times throughout the day and just a bit of rectal pressure or soreness. I’m assuming this is normal, but wonder how long it will last…or is it just something you have to deal with until takedown. Also, it seemed like different people have mention passing the “mucous” maybe once a week, but it seems like I do small amounts maybe 4-5 x a day. Maybe less some days. No blood. I wasn’t expecting daily passing…or daily urgencies…in some ways it is reminding of that old feeling from the colitis days and it makes me not want to go out and about. How long will this all last. Hesitant to bring up to my Dr or nurse because I really don’t want to be scoped invasively only to find out it is ok. If I start thinking something is wrong then my anxiety kicks in about stuff.
    Thanks-
    Diana Hindley
    South Lyon, MI

    • Mike from Ohio
      Mike HOctober 5, 2013 at 6:55 pm #

      Hi Dianna,

      Sounds like my experreince when they created the pouch. The rectal pain and pressure lasted I think about 4-6 weeks and it got pretty bad at times. I was scoped only to find out nothing was wrong. It turned out to be normal healing and gas. I would sit even though I had no urgencies and would pass some gas and felt better. Everyone is different on the mucous, just depends on the person I think. Don’t be afraid to visit the surgeon if you get to concerned. After I made my visit and found out everything was OK I was mentally healed if that makes any sense.

      Mike

  9. Emie
    EmieOctober 4, 2013 at 5:36 pm #

    Mike! I thought of you the entire month of September! Your story brought tears to my eyes because I know exactly how you feel. I am so happy for you and your family. You have gotten a second chance at life! I’m sure you will embrace every moment and appreciate feeling good so much more than the average person. I just had my first experience with the dreaded c-diff, and with everything I have been through, it really wasn’t that bad. I am now taking a good probiotic just to keep things in balance. Go out and enjoy your life! Take your wife on a nice relaxing vacation, you both deserve it. The j-pouch surgery has truly been a blessing for so many of us, I am so happy for you! Let me know where/if you purchased your medical bracelet, I know I need to get one too. I realized when I was in the hospital in my small town, not where I had my surgery, that many people even in the medical field, really don’t fully understand what a j-pouch is. So so happy for you……………..in a way sad that this is probably the last story we will see from you, but also very happy for it to be.

  10. Mike from Ohio
    Mike HOctober 5, 2013 at 10:00 pm #

    Hi Emie,
    It is great to hear from you again. I really cannot believe how well I feel. Other than the day here and there that I just feel run down and tired I cannot complain at all, buy my Dr said that it may take up to a year for my body to get used to not having a large intestine so the tires days are normal. I am getting my medical bracelet from a website called creaativemedicalid.com but there are a few others to choose from. I hope the only posts I make on this site in the future are just comments like this one. Her’s to your great recovery as well. I hope all of us J Pouchers can continue to stay in touch.

    Mike

  11. MariaOctober 11, 2013 at 11:05 am #

    great to hear that you are doing well Mike. Just curious, for a j-pouch surgery, once it’s done, do j-pouchers generally live a normal eating lifestyle? (by normal, I mean, can you eat whatever you want and not be affected by it?) Im having a very hard time fighting my temptations when it comes to eating. I love food. Im a tiny person, and although I love food, I’m one of those who can eat and eat and not gain any weight (unfortunately this has been a downer for me because Ive lost 20 lbs in a couple of months due to my UC. I cut out dairy and sugar to try and minimize my UC symptoms and my weight went down instantly). I cannot eat alot of foods that I used to be able to pre-UC. Im trying so hard to gain my weight back because to be honest, I like to have some meat on my bones and while the UC makes me feel crappy, IVe been feeling crappy when it comes to my physical appearance..I know it might sound superficial especially because I really should be think ing more about getting healthy and not thinking so much about how I look, but it’s just how I feel right now. Im a single mother, Im still young, Im a full time college student, and I still feel like my life has yet to begin. Honestly, I miss living. Before UC, I was out-going, enjoyed life as it came.. and now today, Im so tired and overwhelmed with everything, Im depressed, and just dont see any joy in my life anymore other than my son. Im tired of having to worry about everything I have to face each day, from raising my child alone, to dealing with his health conditions, to school and homework, to the daily responsibilities at home (cleaning, cooking etc.) all while having UC on my mind constantly, 24 hours a day. I can no longer just make a quick meal for my son and I. My son is an extremely picky eater and havign to make two seperate meals to accomodate both of us is extremely tiring for me. :( Im exhausted, and I just cant help but feel sorry for myself right now. Ive been really thinking abotu the J-pouch surgery, but at the same time am absolutely terrified abotu the idea of it all.

    • kOctober 12, 2013 at 4:25 pm #

      Hello Maria,
      Mike and other j-pouchers will have to address j pouches and diet/eating. But if it any reassurance, I have had an ileostomy since 1975 and I eat whatever I want, whenever I want, in whatever amounts I want. I have had only a few blockages, and they all relaxed themselves before I had to seek any medical attention.
      It has been almost 40 years now since emergency surgery cured me of uc, but I still remember how horrible that flare was. I hope you go into remission soon, for you have a very busy life and don’t need health problems on top of it.

  12. Mike from Ohio
    Mike HOctober 14, 2013 at 11:09 am #

    Hi Maria,
    I am sure everyone is different but I can pretty much eat whatever I want but not whenever. I do try to avoid corn, raw veggies and especially mushrooms. If I am going to experience a blockage it will be one of these foods. As far as when I eat, I can eat whenver but I try to avoid eatng after 7pm. This way I can go to the bathroom at bedtime and do not have to worry about getting up in the middle of the night, but If I do eat late I for sure will have the 3am bathroom trip.
    It sounds like we were in the same boat. With severe UC i felt like the end was near at times and now with my J pouch I feel pretty good.

    Mike

  13. KevinApril 11, 2014 at 8:05 pm #

    Mike,

    Thanks for your story. I have had UC for some 28 years (now 59). A good deal of remission during that period, but not of late. Been on steroids for years and four trials: humira, infleximab, vedilisimab and tacrolimus ointment as well as all other usual suspect. I went into complete remission with the vedilisimab (cancelled surgery), but that stopped 12 months later. I am steriod refactory, ie. they no longer work. I have had all the bad side effects of steroids with none of the benefits. At least after stopping steroids I lost 25kg (55lb) and actually eat more.

    Now I have symptoms constantly. They are not life threatening, but life altering as in I don’t have a life.

    The surgeon says I’m well over due as does my GI doctor. I have surgery booked for early July and, like you, am scared shitless (sic). I have resisted surgery for a long time and a number of reasons:

    1. Obviously it’s surgery
    2. Keep waiting for the miracle cure (that will be available the day after my surgery)
    3. The inflamed part of the colon is at worst 45 cm, but usually 25-35 cm which seems so little to loose so much
    4. I view a colostomy like removing the brain to fix a brain tumor. Yes it’s a cure, it just seems overkill (although my surgeon says that if they removed the diseased part of the colon a similar amount would become diseased within about 12 months and they have no idea why, it just does)
    5. Once it’s done it’s done, there’s no going back
    6. My symptoms are such that the inconvenience issue is far worse than the actual disease (yes, I’ve had some ‘interesting’ accidents that are both embarrassing and degrading)

    The surgeon says people with UC give a 4/10 on average score for their life score, ie. how they feel about, well, everything. He states that (regardless of whether you have a pouch or bag) the score on average goes up to 9.5/10. Hard to argue with that.

    Anyway, good luck with your recovery, it all sounds promising.

    Kevin

    • kApril 13, 2014 at 4:47 pm #

      Kevin, if you have already scheduled surgery please think of reasons to have it rather than scare yourself thinking of reasons not to have it.

      Here are some to start and you probably can add some more
      1. No more urgency and/or tenesmus
      2. No more pain
      3. Fewer “accidents”; and the ones you might have, if you have an ileostomy, relate to appliance seal leakage
      4. No more worry about colon cancer (but do discuss with your GI access to your prostate if you have a high PSA or a family history of prostate cancer).
      5. Few, if any, medications
      6. Few, if any, diet restrictions

      I was also in my early 30s when I had uc and was 32 when it was correctly diagnosed during a horrible flare. My colon perforated three days later and was taken out that afternoon. So I have had a Brooke ileostomy for 39 years now. It gave me my life back. And although there have been some challenges, I still consider it a miracle.

      I can only begin to imagine the courage it would take to live with uc for 10 or 20 or 30 or more years. Until the internet and the postings I have read, I never really realized how lucky I was to get through it so quickly.

      I hope surgery brings a wonderful change to your life also.

    • Mike from Ohio
      MikeApril 15, 2014 at 5:05 pm #

      Hi Kevin,
      Looking back now I can honestly say you should not be worried. I am 7 months post take down surgery and still doing very well. Most ofthe time now I even forget I have a J pouch unless someone says something to remind me. I would go with the J pouch surgery because I thought the bag was a terrible thing. It was OK to deal with but not OK to live with. I had a bag for about 8 months and that my friend was long enough. Good luck in July and come back and ask more questions if needed. Oh and if you have the choice go with the three step instead of the two step. They both work but the three step is very easy to recover from and they do not cut you open, normally only 3 or 4 inch incision in the lower abdomen.

  14. MichelleMay 17, 2014 at 2:26 pm #

    Hi Mike,
    Thank you for your story. My 6 year old was diagnosed with UC in 2013 and had his colon removed in June of ’13 so now has an ileostomy bag. Doctors would like to do the j-pouch surgery but I am very skeptical. I feel I don’t know enough about it to just say “do it”. Are there any websites you would recommend I go to for good reading about the surgery? I feel so overwhelmed (I’m a single parent and frustrated I have to make this decision for my little guy all by myself. Any advice would be appreciated!! God Bless!
    Michelle

    • Mike from Ohio
      Mike HMay 22, 2014 at 5:42 pm #

      Hi Michelle,
      I did not visit many websites but I did speak to as many people as possible that had the J Pouch procedure. The one good thing that I can tell you is that everyone I spoke to did not regret going to the J Pouch. In fact if you opt for the pouch and it does not work out you can always do the reversal surgery and go back to the bag. I am at 8 months now with my J Pouch and I honestly forget I have one most of the time now it is working so well. I wish you and your family all the best and remember that whatever decision you make is in the best interest of your son so there is no wrong decision.

    • kMay 22, 2014 at 7:20 pm #

      Michelle, I hope others respond with more relevant experiences, but when I think of a 6 year old with an ostomy bag I had to give some thoughts.

      I have had an ileostomy for almost 40 years, but I was through college and 10 years into my career when I had the emergency surgery. J pouches hadn’t been developed/invented yet. I had my life back, and things just went on from there with few problems.

      But if it were happening to me today, I would really consider the j pouch for convenience and body image. And the younger I was the more important these factors would be to me.

      I hope you have a good support system and are near a children’s hospital where you can interact with medical personnel, parents, and children who have information / experiences to help you make the decision. Your little guy has already gone through a lot. I wish you and him all the best moving forward.

  15. MichelleMay 22, 2014 at 9:32 pm #

    Hi make and k,
    I truly appreciate your responses. My son’s appointment for his checkup just got moved from June 17th to June 9th. It will be a year on June 12th since he had his colon removed. He passes mucus everyday (with a small amount of blood). Since I posted my first comment I have been seeing a lot of negativity towards the j-pouch (on several other sites) which scares me!!! His gastro dr. is about a 5 hour drive from where we live in California (in the middle of know where :) ), so k, to respond to your comment, I basically have no support here. Because we live in such a rural area not many are familiar with UC. I just keep praying God will guide me to make the right decision…. Thank you again so much.

    • kMay 26, 2014 at 12:56 pm #

      Hello Michelle, From across the country, I’ll be thinking of you two on June 9. I hope everyone you interact with is helpful in guiding you to a decision you are comfortable with. k

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