These are stories of happenings and feelings about the Jpouch surgery, preliminary surgeries, and life without a colon. Please explore the postings, and we'd love to hear from you in the comments, via email, or heck you might as well join this blog and click here to contribute yourself!
Our Message Board
March 20th, 2010 at 11:36 amYeah, the surgery is a shock to the body so fatigue goes with the recovery process for sure. Just respect what your body is asking for, if body says it is tired after making a sandwich then let it rest. Mark used Convetex and those worked fine for him for the 3 months he had his temp ileo. I think he was so happy to be free of UC that he never put much thought into the maintenance of the bag. But his bags fit under his clothes fine. Have you looking into a phoenix belt? Mark got one but he didn’t use it much b/c he didn’t feel he needed to trap his bag in http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/ And yes, his BMs with the temp ileo and the jpouch constantly fluctuate between more liquid to semi-solid. It all depends on if he takes maintenance meds like immodium and fiber, and of course what he eats.
Our Message Board
March 20th, 2010 at 11:31 amKristine, in our 3 years of being online jpouch related we haven’t encountered anyone who went in for step 2 and came out with the bag still due to unexpected complications. The surgeons just tell everyone that to cover themselves in case something unexpected were to occur. But in reality they would know long before step 2 if you weren’t a jpouch candidate. This is not something you should worry about.
"You're Fired."
March 20th, 2010 at 11:27 amTim, Yes of course feel free to post relevant links to help others access information. I know trying to understand disability is really challenging so I’m sure Lizz appreciates any help you can offer.
"You're Fired."
March 15th, 2010 at 3:46 pmHi Lizz, You write so well about how it is a bittersweet moment this is for you and I appreciate what you mean. I was talking with a friend today about how it seems many jobs are really pointless for us other than money. And I thought that was a such a great point she made. I do think finding your way into paid work to do advocacy with your lived experience will give you an incredible purpose and the energy to go on. I’m an asst. professor and I always thought this job would fulfill me and it does pretty well, but my work building jpouch.net is the real work I’m most proud of out of everything I’ve achieved. I guess, I’m just saying that I think pursuing your goal of advocacy as a living is definitely the blessing in this situation and I I know you will find the right path on this direction regardless of the reality of needing work to live.
University Research on Jpouch Social Support Sites
March 6th, 2010 at 10:00 amJackie, Yes of course we plan to share the results with jpouchers and the medical community as well.
Our Message Board
February 24th, 2010 at 6:04 amCynthia, If you want to sign up for a profile picture you just need to open a free wordpress account, takes like 2 seconds. Then you can upload a custom “avatar” photo. If you want to be able to upload photos on this website, you should write us at mdhilton@gmail.com and we’ll talk to you about blogging. We can’t upload photos on comments but we can if we are writing blog posts.
Photos 1: Colectomy
February 22nd, 2010 at 7:16 amHi Scottie, It was scary for Mark and us as well. It seems like a really daunting and drastic surgery. Turns out once he was in it and all was said and done, it wasn’t that huge of a deal. Listen, you and your doctors will know when surgery is the best for you, but we can assure that in Mark’s case he did get his life back and he lives a wonderfully healthy happy life now, a life that was impossible with UC. Also, think for yourself and family that each year after 15 years will UC substantively increases your risk of colon cancer. I know for us that was the icing on the cake – no colon meant no fear of colon cancer.
Take a walk in my shoes
February 15th, 2010 at 5:52 pmLorrie, if you want to read how the jpouch works and the process of surgery Mark went through you may benefit from reading through this sites:
Colectomy:
http://www.jpouch.net/photos/surgery-1/
Life with temp ileostomy:
http://www.jpouch.net/photos/surgery-2-inbetween-surgeries/
Takedown surgery for jpouch:
http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/
Take a walk in my shoes
February 15th, 2010 at 5:50 pmHi Lorrie, Oh he is so young to have so much pain and struggle. Unfortunately, UC does not discriminate by age and hits all ages! To help you feel informed about the decision you are making you may want to listen to the two following webcasts. Here are links to two EXCELLENT webcasts on UC and surgery decision. The more info you have, the more informed and secure ya’ll will feel with the decision you make. Empowerment is key in having a healthy surgery and recovery.
Making the UC surgery decision (interview with a surgeon)
http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/
UC Meds versus Surgery
http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/
The webcasts will help you realize that once the meds are tapped the colon is probably at “burn out” where it can no longer repair from drugs. That was Mark’s (my husband) situation and that was when he knew surgery was right for him. And just so you know, Mark has an excellent, happy and healthy life 2 years with his jpouch. He has regained a normal life that UC had taken from him for 7 long years.
Also, be sure to visit http://www.jpouch.org and post on that discussion board because there are parents of youngin’s over there that can help you.
Take a walk in my shoes
February 14th, 2010 at 5:39 pmLindsey, it is great you are supporting your friend/family Sara. I am the wife of someone who went through similiar stuff as Sara and it is so important that we always keep in mind that their life will be “normal”, but that it is “normal” for a jpoucher. Jpouchers have maintenance of their health – and may have complications as the years go on. Always feel comfortable to ask Sara how she is doing? How is her jpouch? And always know that although she is no longer sick with her UC disease, she is a person living with a jpouch. My husband’s jpouch is excellent after 2 years, but he did recently have a blockage that caused a setback, and when I say normal that is normal for a jpoucher in that they have “normal maintenance”.
Our Message Board
February 13th, 2010 at 11:20 amHannah, One more thing, you may want to also post your situation over at jpouch.org and see if any readers there have had similiar expeirence to you.
Our Message Board
February 13th, 2010 at 11:17 amopps I sent before I was done…..All I’m saying is that you need answers and there are answers out there. And if it were me, I would be curious as to why my surgeon or GI never talked with me about VSL 3 when obvsioulsy other jpouchers and research supports the concept. I’m not saying you are getting bad care, but I do think as patients we have the option to seek answers for our health concerns and if one health provider isn’t answering me, there is NO reason I can’t find someone who will answer me.
Yes, some insurnace covers VSL3 especially if the doctor approves it as part of the treatment.
Our Message Board
February 13th, 2010 at 11:12 amHannah, I tend to sit on the side of caution but your surgeon’s response seems to be a bit dismissive to your situation. Have you thought of seeing another surgeon/GI for a 2nd opinion? Because you shouldn’t be told it just looks bad and not be told about natural and medical interventions shown to work, plus, you should be given full information regarding your situation. For instance, has your doctor done the steps to rule out Chron’s for you (I’m not saying you have it, but if it isn’t pouchitis – which you can have b/c your pouch is very much alive and function
Our Message Board
December 1st, 2009 at 10:00 pmSorry about writing that post out of Mark’s account, I was using his laptop when I responding and didn’t change to my account Rob’s Email – Robbyitalguy@aol.com
Our Message Board
October 24th, 2009 at 9:35 pmHi ML,
Yes, the first step is called a total proctocolectomy – there should be some mention of the IPAA or ileoanal reconstruction part. Even though you are having 2 steps you will have your colon remove first and during that surgery they will form the jpouch. I know with Mark’s paperwork it always said IPAA and then a bunch of jargon we didn’t understand. Sounds like your paperwork is fine, just call on Monday to ease your mind. Oh yeah, insurance only approved step 1 first, then when it was time for takedown they approved that surgery.
Jessalynn
July 22nd, 2009 at 2:44 amHey Nathan, Wow. Quite a journey you’ve been on, but luckily sounds like you found “love” with a nurse out of it all. Which is a pretty good reward! The stoma is a real shock for most people and something we talk about a lot on this site. You will probably appreciate this recent post from Brevin for Elise who just found out she likely won’t get a jpouch and will need a permanent ileostomy. Coping is tough but with humor and family/ friend support (which you have) you’ll get through this http://www.jpouch.net/2009/06/29/much-needed-fashion-sense/
Our Message Board
July 22nd, 2009 at 2:37 amGreat to hear from you and glad you reached out to ML. It is great to find others who are in the same situation as yourself. Please stay in touch – we’d like to follow your story if you’d like to share.
About Jpouch dot net
July 22nd, 2009 at 2:35 amHi, Oh yes, Harry wrote on the site, here you can see his post, and my response:
http://www.jpouch.net/surgery-photos-your-story/#comment-4834
About Jpouch dot net
July 10th, 2009 at 7:45 amBonnie, what a wonderful post! You sound great these days even though your surgeries were not easy, it seems so hit and miss for good vs. difficult recoveries. As for children and your question, Jamie is pregnant just 6 months after her takedown, her post is here and good for you to read http://www.jpouch.net/2009/07/02/jpouch-happenins/
Jpouch Happenins'
July 3rd, 2009 at 9:28 amErin, both Mark and I went to UNR, he still has a sister in Reno out in the Saddlehorn area.
update: on Ricardo and his J-pouch
June 22nd, 2009 at 8:01 pmHi Christine, Thanks so much for the update. Sorry to hear he is having some issues but unfortunately issues are sorta to be expected. I wish you had known Mark and I many years ago when I sounded like you in this post. I used to do all the research, pass the info on to Mark, etc….Well, it was a long few years in that routine but what came out of it, was I became emotional exhausted and literally became sick myself with the stress of trying to help him when he wasn’t ready to care for himself. When Mark FINALLY realized that his disease was NOT just about him, and he was done feeling sorry for himself, done feeling SCARED, done pushing me and others away – he opened up and everything changed. I wish it hadn’t taken him to realize the breakdown in my health but it did. My best reecommendation to you guys is to get into couples therapy (I know expensive, but even 4 session could really help him) – he needs to understand the grieving process he is going through and a therapist can quickly help teach him how to better cope with such a traumatic and life changing health condition. Remember there is nothing common about his experience and so you need experts to help. I know it is probably a long shot to get him to therapy, but he needs to know he is allowed to have a period of emotional shutdown, but that he HAS to come back to life. Although he is the “sick” one in this, there are lots of people affected by it. I used to tell Mark, “this is not your disease, this is our family disease” . A good example of that is Chaz his disease definately affects his family just like you and your kids. But unlike Chaz and Mark, they both had been sick for years and prepared somewhat for surgery, whereas, you and Ricardo were “normal” one day and not “normal” the next. Please feel free to send me a private email or anything if needed, meganlee76(at)gmail(dot)com
Keepin' it Real in the Real World with IBD.
June 21st, 2009 at 5:17 pmHey Elise, Aren’t you heading inot surgery soon, like June 24th, right?
Keepin' it Real in the Real World with IBD.
June 18th, 2009 at 8:44 amAs an EX-workaholic, I greatly appreciate this post Lizz. First, congrats on the position it sounds wondeful. The reason I appreciate your post is because my old habits of being type A, perfectionist, work all the time was truly tested during the sick times with Mark. Now, he was the sick one with UC but that process of him being sick and trying to get him healthy really weighed on me. I found tyring to get my Ph.D. while being perfect and dealing with his disease was too much and it forced me to re-evaluate how I handled work. It was one of the benefits of his illness was me learning how to let go of work perfection. Now, I work just as well but have totally new habits that are life friendly. My first mantra for survival is “Don’t take yourself too seriously” – these words are so key for me. I also have learned that work and accomplishments are NEVER DONE. In other words, I was once worried about passing my phd exam, then I passed the exam, then I was worried about proposing my dissertation, and it goes on and on…..And seeing that it just goes from finishing one thing to starting another has helped me learn so much my second life saving mantra, “Life is in the journey.” I am very thankful that I had to learn how to balance my workaholic traits during the height of Mark’s disease, I feel it has made me a much happier and effective person today.
Hospital Stay and Fundraising Success
June 9th, 2009 at 10:50 amGlad you clarified the typo Brevin about no kicking in the face – this is a good rule since we only promote violence to defunct colons and subsequent complications but not the colon owners on this site
Hospital Stay and Fundraising Success
June 9th, 2009 at 10:47 amJenelle,
So glad to hear from you! We had been wondering if all was well, and I thought maybe you were just swamped with your dissertation. You sure have had a long ride with these surgeries and recovery, I figure at this point #3 has to go really smooth for you you’ve paid your dues. Although a rough tiem you are in sounds like your spirits are good, and that is great news about the walk, you raised a lot of money and that is wonderful how much support you have. It is at times like these when you realize what “community” means when you can see your colleagues, friends, family come out like that to support you. We’re sending all our healing vibes your way – take care!