Hey all, I thought I would check in and say, "Hi." I have been infrequent to non-existent on this site within the last year and don't really know why. I think I have posted responses a few times, but not often. To those who care:

  • I am in year 13 with my j-pouch and no complaints to speak of. Those who have known me for these 13 years know that was not always the case, and that I tried new things often until a) I found some things that really help me (Prilosec - 1x / day and Metamucil Wafers), and b) my body healed, adjusted to things, and settled down
  • My j-poucher daughter is 14 1/2 years old now and is in the 8th year with her j-pouch. She has gotten better over time and really manages her own health without complaints. She had acute, chronic pouchitis the first couple years with her pouch but things really settled down for her and the last couple years her blood counts, inflammatory markers, and absorption have all looked really good. She takes Vitamin D and Zinc still, and may have to do that the rest of her life. She has also started eating Metamucil Wafers as she has gotten older and more self-conscious. She has gone to the same small school since Kindergarten, but we still have to talk with teachers each year about giving her latitude to use the restroom more frequently than others. Besides that, no complaints
  • Camp Oasis has been a wonderful thing for my daughter - she has gone the last two years. She doesn't want to miss it at this point. Kids from all walks of life, without their usual cliques and with IBD make it a fun, safe, friendship-building experience for her. I highly recommend it for any of your IBD kids

Other than that, not much to speak about. I will try to check in more frequently. Take care, fellow pouchers!

Steve

Original Post

Hey Steve. Good to hear that you and your daughter have settled into a reasonable routine. I too have tapered off in my visits here, but after more than 22 years with a j-pouch I need to focus on living life. I try to pop in when I can, other than admin stuff.

I can’t say I am happy about being on Remicade, as it is much more of an imposition into my life compared to home injections. But, pouchitis has been under control, so I just plan travel and activities around it. Thank goodness for health care coverage. Even with my high deductible plan, it is a bargain compared to what it would cost without it.

Jan

Hi Steve!

Good to hear from you, and great as well to hear your daughter is doing so well. My 13 year old cousin was  diagnosed with Crohn's 4 months ago and is having a hard time with it. She was recently started on Remicade, which - and I did not know this until now - is apparently still in clinical trials for children.  It's hard enough dealing with this disease as an adult; having it has a child or being a parent of a child with IBD is so hard to imagine. But it's wonderful to hear your daughter has been managing well in recent years! 

I have also been a pretty infrequent visitor the past year or so, just popping in here and there and responding to a few posts. I'm nearing the 10 year anniversary of having my pouch. Generally I'm doing very well - apart from a recent flare up of hemorrhoids which actually prompted my visit today.    Otherwise the pouch is just background noise in my life right now. I really can't complain.

Hi folks! The last few years I usually check in around my pouch anniversary to see how people are doing and to learn of any new changes in treatments. I am doing pretty well with things but find if I eat restaurant or preprepared food that I can have night issues. I guess i’m just a simple meat and potatoes guy that seems to do better with my wife’s cooking although I know she likes to eat out once in a while. I am finding as I get older I also can have minor accidents so I use a hospital pad on the bed and when I feel I might have an issue I just wear a depends. This saves a major cleanup issue and makes it easier for me.

i see Jan and Sharon and a number of others are still on here helping others so forum members are obviously in  good hands!

Hello folks.  I must say I haven't been on the site for at least a couple of years.  I am post surgery now 8 1/2 years.  Today, I had my Medicare wellness check and was quizzed about j-pouches by the RN.  It made me realize how blessed I am that I am healthy and have learned to just live with the minor inconveniences.  It was totally worth it!  

Had mine 31/08/09, have checkups and scope every 2 years since, everything seems to be working fine. Had some relatively minor issues but over time in general they seemed to have resolved. So far so good! I check in about once a year, used to be a regular but other things seemed to make more demands on my time as the years have gone by. Happy to hear you are doing well!

Lew

 

 

HEy Valli- I've had a great experience since my surgery about 15 years ago. It was all done in one surgery and was in and out of the hospital in 1 week. The doctor I ended up using told me he's done the most j-pouch surgeries than any other doctor and would recommend having it done (those were the 2 questions I asked all the surgeons I met with before making my decision). You'd be surprised some of the answers I got. Anyhow, good luck, and if you want any other info or names or the doctors I used you can email me at jcascio@rtiresearch.com and put something in the subject line so I don't delete it. John

Hi Steve, 

What wonderful news...on all fronts...how wonderful for your daughter that she has found a safe environment to feel free and be herself. It is essential for her healthy development.

I come and go on the site but mostly I try to pop in on a regular basis to see what everyone is doing and how I can help (if possible).

Things are stable here, pouch-wise... I try hard to maintain some sort of balance in my life, both food and exercise but I have had 2 broken arms (1 is healing the other one, not so much!)  since Nov and a pissy Achilles tendon so I am sort of a victim of my body at the moment.

With all of that, I am still working part/full-time and trying hard to accept my new normal ( what is normal?).

I'll be speaking at the QLA in Florida this coming Sept and hope to meet some of you in person if you are going to be there.

Stay healthy 

Sharon

 

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