Mark 9 month Jpouch Update
Posted by mark on August 8, 2008
9 months after my “takedown” surgery, here is an update on my status. My life 9 months with my jpouch now is completely normal, I don’t think about being sick. I don’t worry about what I eat (like UC days) like pizza, in my UC days I would eat pizza but I do it knowing I was going to feel awful afterward, now I can eat and I don’t worry. Of course, I don’t eat pizza much – I do try to eat healthier than not, but I do splurge for some good junk every now and again.
BMs in 24 hour: Going to the bathroom 6-8 times a day has just become part of my routine, because I don’t feel sick, there is no urgency so when I have to go thats it, I have to go. I don’t have any urgency, and no leaking. The consistency of my movements is pretty normal, a lot like before I had UC, basically formed and looks the same. Here is my BM schedule for those of you interested:
2 BMs when I get up and start my day (don’t eat breakfast)
1 BM after eat Lunch
1 BM before dinner
2 BMs after dinner before bedtime
1 time in the middle of night between 3-4 am
Gas: Simply put, I am pretty gassy. My gas may be from metamucil or what I’ve eaten. I have found that the gas is a lot of what I realse during the daytime when I go to the bathroom, sometimes the gas puts pressure hurts in my abdomen but when I pass that I feel fine.
BM noise in the bathroom: Sometimes it is quiet but sometimes it does sound pretty splatter like.
Weight Gain & Body Changes: My stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo http://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay 
Megan likes to tease me about my “middle-age bulge” – she thinks its funny.
Sexuality: I have some again, thank goodness! UC days it seemed sex wasn’t a huge interest. Now, I feel healthy and normal, and I have full function – no physical problems, all my parts seem to be working well. And my interest or libido is back, maybe not like before UC days but I’m also not a youngin’ these days.
Medicines: 2 imodium in the morning, spoonful of metamucil in the morning. And then the same at dinner time. What I think is that when I don’t take the immodium or metamucil my BMs just become more liquid, and more liquid means more butt burn. Therefore, the goal for me is to keep the BMs more solid. The immodium and metamucil do not seem to cut down on the # of BMs, just the consistency.
Drinking Alcohol: The big question asked is can drink with my jpouch? And the answer is YES, I do. Here is what I’ve learned for myself (of course everyone is different), but for me, light domestic beers don’t bother stomach, things with high hops (microbrews, etc..) seem to be too heavy and I feel bloated and I feel hungover from drinkinng even 1 beer. Red wine and thats been fine. Crown Royal and Coke doesn’t bother me either. Other than that I haven’t tried many drinks. Also, I don’t tend to drink so much that I’m drunk, just more causal.
Hemorrhoids: Mild
Butt burn: Don’t really have it, if I eat or drink poorly and that makes my BMs more liquidy then I will have some burn, but overall this isn’t an issue for me at all. And if I see the burn coming then I do whatever is needed to get my BMs thicker.
I LOVE MY J-POUCH – I HAVE ZERO REGRETS! Mark
Brenda said
Mark,
Do you find yourself more hungry now, with the J-Pouch, than before? (I’m worried about excessive weight gain that I read about on J-pouch.org). What is your appetite like now?
Do you find, looking at yourself, that you look any different post j-pouch surgery than before? Your surgeon looks like he did a great job.
Is it safe to take Imodium every day?
I’ve also heard that rice is good to help with consistency and to avoid blockage. You probably know that though.
mark said
Good question, I meant to cover this in my update. I’m not sure if I’m more hungry than before, but unlike when I had UC, I want to eat now and now I eat when I’m hungry. So, I think I actually eat like a normal healthy person, and not that I eat more because I have a jpouch.
Yes, as far as I understand from my doctors it is safe to Imodium every day. Of course, you’ll want to talk with your drs. about their thougths on if it is safe or not for you. Here is a great post about how stuff like imodium works in our body, pay close attention to the multiple posts by Jan Dollar, she explains it pretty well.
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/5601080242?r=5601080242#5601080242
Yes, my stomach around that stoma site does look a bit different, you can see it is in these photos I think that I look a little bulged around the stoma site and belly button area. If you look at my stomach before the surgery like in this photo http://ucstory.files.wordpress.com/2008/05/step-1-1.jpg and then compare it to the couple in this update post, I look different some. I’ve gained about 15-20 pounds since the surgery 1 and I’m back to the exact weight I was before UC. It feels so good to be healthy that my body could look like anything and I don’t think I’d care – it is just incredible to feel healthy so much of my adult life was wasted by UC a small belly bulge is now a small price to pay
Megan likes to tease me about my “middle-age bulge” – she thinks its funny.
Mark
Kyel said
Hey man,
It’s pretty inspiring to see someone around my age (20) that has had success with the J-pouch, I have been reading on the J-pouch site of all the problems and making me kind of depressed lol. I am suppose have my 2nd surgery at the end of the month to reform the bowel into a J-shape. Then 3 months from that date actually get the J-pouch. You seem to have done pretty well since then and I am very happy for you. So will you have to take immodium/metamucil for the rest of your life or is that still temporary? Just curious as to what your doctor said about the future? I know everyones different, and I am hoping I don’t have problems but I WILL be prepared hah.
Thanks in advance man,
Kyel
Eric Mills said
hi there,
Writing from the hospital after step 2 of 3: I had toxic mega colon. Just wanted to agree with previous commentor’s feelings. Keep it positive; everyone’s different. I feel great, have to wait 6 weeks for pouch to heal and then it’s reanastamosis time. (sp?).
mark said
Hi Kyel,
Good to hear from you, sounds like you’ve still got some surgeries and healing ahead? You know, I don’t know if I’ll take the metamucil and imodium forever. I know there are people who live completely free of taking anything, and others like me who do need some help getting better results. My doctors have said long term use of both products is fine. As for now they have just become part of my routine, almost like taking a vitamin or something. For me it seems a small price for being able to live as normally as I do now. I’ll keep trying to get off of them, I’ll try again at a year anniversary of using the jpouch. I’ve heard that takes the pouch about a year to get settled.
Did you have UC? How are you living now with the ostomy?
Mark
mark said
Eric,
Good to hear from you. HOw is the recovery going? 6 weeks isn’t too long inbetween your surgeries, and that last surgery shouldn’t have a super long recovery and hopefully you’ll be back to full speed quickly.
Are there other physical repercussions from Toxic Megacolon? What is T. Megacolon – I know but I don’t really know.
Karen said
Hi Mark,
I just saw your comment on my blog and wanted to thank you for taking the time to comment and for linking your site to Healthtalk. I had stumbled across your site a while ago, and loved how informative it was and the pictures. I know if I have to have surgery again (fingers crossed that I won’t!) that this will be one of the first places I come so that I know what to expect.
I’m glad everything seems to be going well for you now!
Karen
JM said
Kyel, Mark,
I’m one of those lucky people who have no need of meds or fibre supplements any more. If it’s any use to you I took psyllium husk (we don’t get Metamucil this side of the pond) for about the first 18 months. I simply found quite gradually that I needed it less and less and eventually cut it out altogether, hopefully you will find the same happens to you as your pouch expands and adapts over the first couple of years. I’ve never had any need of loperamide so can’t offer much there.
Megan said
Hi Karen,
Mark and I agree that the Colitis resources, webcasts and blogs are some of the BEST resources available. I wish everyone with UC knew about Health Talk: Colitis. And the quality of the webcasts are incredible – we are always raving about it on our blog. I think one of the best recent webcasts was about when to make the “elective” surgery decision and a surgeon talked about the complexity of the decision – really excellent information – here was our post on the webcast http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/
And for other readers do check out Karen’s blog and other resources on http://www2.healthtalk.com/go/colitis
Take care!
Megan
bellyluv0sofine said
Megan,
I don’t even know if I can adequately express how enormously helpful you and Mark’s blog was for me. Then I was able to connect with Brenda and Lottie who offered so much support. God! I just can’t imagine having going through this with all of you. I am so grateful. Thanks for the Health Talk link. I will check it out. Now I am looking forward to my pull down surgery on October 20. I am anxious about what that will bring for me.
Carmen
bellyluv0sofine said
oops! I meant to say ” just can’t imagine having going through this with OUT all of you.”
~D
Megan said
Carmen,
Sounds like your recovery is going really well! That is great to hear
We are so glad that the blog and other contacts you’ve made were helpful – that is what we had wanted to provide for others. It was great timing that you, Brenda and Lottie all found each other – such a great support system.
I’m sure your takedown will be great, Mark recovered so quickly from that and has been so good with his jpouch, you’ll soon forget you ever had UC.
Megan
Lisa said
Mark,
Thanx for all your pics and commtents it really is helpful to see what you have gone through.
I had my 1st procedure 1 month ago so i now have the ileo.
I was diagnosted with cavernous hemangioma of the rectum which is extremly rare.
Im only 28 so hopefully i can put this all behind me and live a normal life.
I will have the takedown in mid october.
i was wondering if there was any special foods you ate when you had the ileo, i’m getting sick of eating the same things.
Best wishes,
Lisa
mark said
Hi Lisa,
You should definately have a normal life now, not being sick is HUGE, just be sure to keep your atitude positive, that is the best thing for getting back to a good way. As for foods, I ate whatever I wanted with the ileo after week 4. I am not very good about following tight rules for food – my advice to you would be to introduce 1 new food slowly that you like and if that works, then try something else.
On http://www.j-pouch.org/diet.html this is a link to diet suggestions you may want to check there. And also at the http://www.jpouch.org there is a forum section for Ostomy & Skin and you could also seek advice there if you are having concerns.
Overall, as long as your stoma is still pooping, then keep eating, FEED THE STOMA
Mark
Ken said
Hello, Mark
I have a couple questions.
First THANKS for the blog, VERY infomative,cool and positive.
Next… How active were you with the “Stoma” bag.
Im a singer in a bar band…(just for fun).Maybe wanna bowl or something.Just was wondering what and what not they told you to do.I know everyones different,just looking for some first hand examples.
Thanks!
Ken
mark said
Hey Ken,
Oh yeah, I was active with the ostomy (stoma bag). It took me about 5 weeks after the first surgery to feel fit again, that first surgery took some downtime physcially to recover. I was approved to lift heavy things and such after 6 weeks. You will be able to social and out after probably 4-6 weeks, and signing and such should happen around the same time. I found my life with the ostomy was really normal, it was great and I didn’t have any limitations. Plus, taken care of it, emptying it and such is easy to do and doesn’t require much change to your life and definately doesn’t get in the way of being active. In fact, if you have UC you’ll be suprised by how much better the ostomy life is than having UC – then the jpouch is just icing the cake.
Good luck and heal well, be sure to keep your attitude positive that will make this process “active” and successful for you.
Mark
Ken said
Thanks again Mark, I cannot tell you how helpfull this site/page has been.I have scheduled my 1st surgery for Oct 8th.
My wife and I are expecting our first child(a boy) in late January. I decided I cant be worried about CRAPPING my pants with a child depending on me(LOL)
Im hoping for the best…and trying not to even think (but willing to prepare) for the worst.
Ill keep the site informed of my progress, as EVERYONES comments and posts have been VERY helpfull for me. Just hoping I can “Share the love”
HOLLA !!!
Ken
mark said
Hi Ken,
Wow. new baby, surgery, you’ll have a crazy few months. But that is good because all the changes in your life are positive changes. You should feel a lot better after you have the surgery and can be healthy with the new baby. We look forward to hearing your story, and sharing the love…every story helps.
Mark
Jewels said
Wow Mark, Your story is inspiring!! My husband just had his 3rd surgery, the pull down. We are constantly checking out what you and Megan have to say. It’s so great to see how well you’re doing. Hopefully my husband will be there soon!!
mark said
Jewels,
Great to hear from you and thanks for the kind words. Glad that your husband has had his takedown, how has he been adjusting to his jpouch? I will continue to post updates on mine but hopefully I wont’ have much to report other than doing well
Mark
Michael said
Mark,
I wanted to take a few minutes to say thanks for this site. I have been trying to read up on this surgery and this was a God send. I am 33 and was diagnosed with colon cancer in June. The chemo and radiation were awful and now I have to look forward to this. I am glad to have a better understanding of what to expect. I hope you don’t mind if I reach out to you again in case I have more questions? My main concern now is how quickly I will be able to work out etc. That is my hobby and stress relief from the office. Should I safely assume about 6 weeks before I can do anything active like going to the gym?
Eric said
Hi Michael,
6 weeks is the time after which your tissue, under a microscope, has completely healed to its former state (think internal goodness) and the time the Doctors say you can lift more than 10 lbs. I wouldn’t go straight to the gym on the 42nd day of recovery; instead, try some very light weights while watching TV or start with a few minutes on a stationary bike. You’ll see that even though you’re after the 6 week mark, you’ll still have some healing to do.
–Eric
May 2008 Emergency Surgery for Toxic Megacolon
August 2008 Jpouch created (with a complication that led to a 2nd emergency surgery)
Nov 2008 what I like to call “hooking back up the plumbing”
mark said
Hi Michael,
Yes, Eric stated it pretty clear. I was told at the 6 week mark my surgeon would approve me to lift more than 10pounds. Assuming your recovery goes as planned you should think about 6 wks. Although, like Eric I wasn’t ready yet at 6 wks to lift huge amounts so be patient and listen to your body.
Mark
Davus said
Hey Mark,
Congrats on your stellar recovery – everything seems to be going great for you. I had severe UC myself from 2002-2006 until I got extremely ill and then I got an ostomy. Smartest decision of my life. I went from a very sick 130 lbs to 200 lbs (and most of that is muscle from working out haha) and I feel amazing. Still have the ostomy, but I’m getting the J-Pouch surgery in a week. A question – how long did it take for you to be able to do “athletic” things, i.e. things where your abs are under considerable stress? I’m looking forward to this year’s ski season but I figure I’ll miss a good portion of it due to recovery…
mark said
Hi Davus,
Glad to hear you are recovering so well and feeling amazing – isn’t it great to not be sick.
Well considering I’m a contractor and do a lot of manual labor myself that is a good question. My surgeon wanted me to wait 4 weeks after takedown before lifting 10pounds or more. At three weeks in the photos on the below page, I’m stacking wood. I felt fine, but probably could have used another week before I did anything too body oriented.
http://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/
Overall I was ready to go at 3-4 weeks but would tire easily, but around wk 10 I was feeling excellent, not feeling tired and that stuff.
Keep us posted and send in a picture of yourself skiing when you hit the mountain!
Mark
Shellee said
Hi Mark,
I just wanted to thank you. My son, who will be 24 this month, had his first surgery in March of 2008 and his take-down in June. We followed your progress as you had documented in the photos and it gave us the hope that we needed to get through. I can’t begin to tell you what a huge thing you have done by sharing your story. Knowing that others have gone through what you are facing, makes all the difference in the world. You have done a great job with this website. Thank-you so much again. My son, Nick has his life back and is doing very, very well too.
Shellee
Becky said
Mark and Megan,
I can’t tell you how much I find peace and hope in reading your post. My husband will be having his having his first surgery at the end of this month and the take down in June. I actually banned myself from reading blogs about J-Pouch surgery because so many were negative… and I was getting depressed. I am glad I broke my own rule and found the two of you. I have been a bag of nerves and can’t wait for this to be over. I do have a question for you, Mark… I am trying to prepare for my hubby to need emotional support, but don’t want to overwhelm him or make him feel isolated. What things can I do (small or big) to make the first two weeks at home easier on him? Did you want to be alone? Sit in a recliner? Sleep by yourself (I am afraid of bumping him), did you want company? Ok, so I lied… I have a million questions!
Thank you for sharing something SOOO personal and giving me hope!
Becky
mark said
Hi Becky,
So glad that the site was able to ease some of those nerves. I think that was a huge reason we made the blog, see, Megan is a visual person and it was driving her nuts before my surgery not knowing what things were going to look like – so she documented it all.
About the emotional support for your husband, I think the big thing is that he needs to be willing to accept your support 100%. Instead of the attitude of “you don’t understand because you aren’t the sick one” he needs to let you in completely. The big thing for me was how much Megan normalized my rather abnormal situation. She did a wonderful job of educating herself and then me on things like the stoma, bags, etc…So by the time the stoma arrived Megan actually knew more than I did in a sense. That type of stuff made it easy for her to be involved in my early ostomy bag changes and such. For us there wasn’t anything about my recovery that she wasn’t in the know about. This made it easier for me to just figure things otu with her help, and ultimately, it brought us really close.
For me I was lucky because I didn’t have any surgery related complications so when I got home I feeling pretty good, and I wanted company from Megan. I was hungry and wanted comfort food. Meg did sleep in the other room the first few nights b/c I was sleeping mainly on back, but I really liked her company. She helped with my first bag change outs. Right after we got home Megan was actually more tired than me, she slept two full days practically. Make sure your husband understands that he isn’t the only one recovering. You’ve been living with UC too and you are just as involved in this surgery as he is. As much support that you give him, he needs to give back to you.
Please let us know how things are going and contact us with anything.
Mark
Megan said
Hi Becky,
Welcome to the world of the colonless men in our lives
First, your husband is so fortunate to have you in his life, you sound so loving and understanding!
I’ve said this before on the blog but in our family Mark’s disease became so dominant thatafter a while it became the family disease not Mark’s disease. I think as long as your husband knows that this surgery is about your family as much as it is about his health, he’ll heal well. He needs to be willing to accept your support, but he also has to give you support in return, this is just as huge and scary for you as it is for him.
During Mark’s jpouch recovery I wrote during this time this little rant, but now the words really showcase what I was experiencing, and how important the emotional recovery is for both you and your husband at this time:
http://ucstory.wordpress.com/surgery-3-jpouch-or-takedown-surgery/
“Photo 13: No Suture Day 7 Full shot- Grumpy Moods
Mark is tired and a little grumpy. He isn’t sleeping at night due to BM frequency, and it seems the emotional of reverting backward to some familiar UC ways is challenging.
We were prepared for this as much as coud be but the emotional aspect of seeing symptoms like UC, is hard. It has made Mark quiet (an old habit), and it has made me (Megan) irritable and I feel like screaming at times. I know this disease is about Mark and his recovery, but it does take it toll on immediate loved ones who provide the emotional support. I just want to preach to anyone who is dealing withdisease like this that the sick person must always treat their loved ones with respect, you can be grumpy, scared, quiet, remove affection, etc…but you must do it in a way that doesn’t punish your carers or make it harder on us than it already is, and please know we aren’t sick like you are but we do ache inside because we love someone who we watch struggle to be healthy. Okay, I’m done preaching now.
Nevertheless, recovery takes time, time, and time. And we were prepared that this recovery would take time and have many ups and downs. But it is one thing to be prepared and then it is another to experience it.”
Stay in touch, Becky!
Megan
Becky said
Mark and Megan,
Thank you so much for responding (and quickly!!!). I am really not good at letting things out of my control and this disease has certainly tested me! We have a 2 1/2 year old son and I know that my husband wants so badly to move forward and focus on our family. We are at almost a week and counting and I am getting excited (sounds strange, I know). He is having surgery @ Mayo… can I ask where you, Mark, had yours done?
Jake and I are both teachers and I know he is anxious to get back to work quickly after surgery(he loves his job), I know that every person is so different, but when Mark did you feel like you could be back at work if you didn’t have to do any heavy lifting? He can a lot of the day if he needs to, he works one on one with students that are struggling.
Ok.. my last question of this batch, where did you get your ostomy supplies? I need to check on all of that with our insurance company and don’t even know where to begin. Does the doctor write a prescription?
Thank you again (a million times over) for this blog. I appreciate even more that you are willing to answer questions.
Thank you, thank you…
Becky
Megan said
Hi Becky,
We were both excited too before his surgery b/c it meant the possibility of a healthy future. Your husband should expect to have a good life ahead and get back to living instead of living sick. Just keep your feet grounded that for many people the first year after surgeries can have ups and downs adjusting, so realism in the outcome is helpful.
Ostomy supplies were bought from a local medical supply store – we just paid out of pocket and then the store would bill the insurance company. It was pretty easy to get the supplies and you won’t need many if he only has the temp ileo.
Don’t buy any ostomy stuff before the surgery b/c the nurses will figure out after surgery what appliance will be best for his stoma, body, etc…
Also, on http://www.jpouch.org you can ask around for further ostomy advice as need (or use uoaa forum).
I’ll answer for Mark and work since he is super busy right now managing our move – after the 1st surgery he was back to office work around wk 4-6ish. He was still uncomfortable and would tire after half day, but was totally working around wk 11ish. After surgery 2 he was up and working full steam around wk 3. Now keep in mind, Mark had a flawless recovery with no complications.
Is your husband increases his cardio and protein intake to help speed that recovery?
Megan