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Thanks for all of your support.  My son will have the first part of the J-Pouch surgery on March 3rd.  He is 19 years old and has dealt with UC for many years now. I think we are all getting a little nervous.  The hospital is about 4 hours from our home, so we will be away for about one week.  If anyone has any more advice or can think of anything he/we should take along for before or after the surgery.  We would greatly appreciate any words of advice or encouragement. 

Thanks so much.
lfinn

 Reply posted for lfinn.

My mom saw your post and though that I should leave a post since I have been through a very similar situation.  I am an 18-year-old tennis player that was diagnosed with UC during the summer of 2008.  After trying asacol, imuran, and my nemesis, prednisone (I have stretch marks and chipmunk cheek senior pictures) I ended up having the ileostomy surgery in December of 2009.  Going into the surgery I knew that it would be a three stage process.  Now I am back out on the tennis court playing better than ever.  The hardest part of the surgery for me was not knowing how I was supposed to feel or how things would end up, so here are a few of the feelings that I experienced that hopefully will help you.  While in the hospital after surgery, I had the feeling that I had to go to the bathroom still.  This confused me for a while and I didn't know if it would go away.  To my surprise, I actually did go to the bathroom about two days after surgery and maybe two more times after that.  Mucous is still produced down there so it has to get out.  Also, I had problems standing up straight for a while.  That went away completely after about three weeks.  My most difficult challenge was finding a bag that worked for me.  I was using a Hollister one peice for a while that would always come off.  Now I am using a Hollister two peice (product #14602 and 18182) that is almost like cloth so it bends easily and is great for tennis.  I also found a site called Ostomy Secrets (http://ostomysecrets.com/) with great underwear that keeps the bag close to my body.  It's a life saver and I don't know how I would play tennis without it.

 Reply posted for lfinn.

Sorry to hear about the 3-step vs. 2-step.  As you said, at least the procedure can be done in the future, just not now.  Hopefully, with time, healing and perspective, your son will the positive news in that fact.  Until then, I can certainly sympathize with his wariness towards his new "addition".  If it's any help, I don't recall being such a good patient in that area either; I think it's just par for the proverbial course.

Take care and please keep-up the updates.  You both will remain in our prayers.

 Reply posted for lfinn.

Just wanted to write and let everyone know that the surgery is over. My son had his colon removed on March 3rd.  The surgeon tried to created the j-pouch, but his intestines were not ready due to damage from years of prednisone.  Now, he will have to experience the three-step process.  He wasn't too happy with the news of having two more surgeries, but at least the surgeon believes it can be done, so that is good news.  He is still in the hospital and just trying to get used the his new "addition".  It's making him quite anxious right now.  Hopefully, when we get home and have an ET nurse with us, he/she will give us more guidance.  Also, my son, is a little concerned with the fact that he feels as if he needs to use the restroom again.  He thought those days were going to be over.  Will this end soon?  I hope so!

I guess that's it for now.  If anyone has any tips, please send them our way.  We are definately in the learning process.

Thanks.

lfinn

 Reply posted for mbt.

the et nurse will be very helpful in preparing him for what to expect. he should have several home visits to assist with bag changes etc. the output will be more liquid at first and he may have to get up at night to empty-tell him not to get frustrated-it will get better. the stoma may bleed a bit if your too rough cleaning-thats normal- when he showers with the bag off-try not eating and doing first thing in the am-cold water helps too. the seal around the bag may leak in the beginning when the belly is swollen and due to incision-but it will get better- we had it happen twice. google-carefix stomasafe classic- its a wrap that you wear and the bag "hides" inside-very comfortable and makes the bag feel secure-also it conceals the bag- $17 for 3- my son loves these. keep bananas and snack size applesauce on hand-very good to help thicken output- also water, g2 gatorade a must. my son got his 1-26th. the et nurse will give samples of one or two piece bags and he'll figure out what he likes-we use hollister 2-pc- good luck

 Reply posted for lfinn.

My son had surgery for UC last friday. He is 12, he looks great after surgery but hasn't said a thing about the "bag" It is supposed to be temporary but for a 12 yr old, that is a long time. Any ideas for when we take him home?

 Reply posted for lfinn.

No problem whatsoever; I’m glad I can be of assistance.  I came upon this forum by happenstance and, after reading through some of the postings, realized I had 20+ years of experience to share; I still find it comforting to communicate with those who truly understand these diseases.

But enough of my ruminations and on with your questions:

1. Scar tissue – no external scar issues.  Internally, though, there is scar tissue where the pouch was attached to the muscles.  The scar tissue constricts over time and requires periodic manual ‘dilation’ (it entails nothing more than my index finger and a tube of KY jelly).  I have no idea whether this is ‘typical’ or not, but my surgeon indicated that he had a difficult time connecting everything because I’m relatively tall

2. Pouchitis – I did experience pouchitis a couple of times over the first 2 or 3 years; something my surgeon indicated was not unusual with new pouches.  I haven’t had any diagnosed cases since because I found the ‘cure’ (e.g. flagyl) worse than the pouchitis and started taking care of it myself via Immodium, fluids, and foods that gum me up (oatmeal is the best for that).  Another thing that I believe has helped over the years is yogurt; I eat a cup most every day for lunch.

3. Blockage – the only time I experienced it came from eating mushrooms when I had my temporary ileostomy.  I have not eaten a mushroom since.  I do try to make sure I chew everything thoroughly (I’m a slow eater as a result) but have no food restrictions; other than the mushrooms. ;-)

Speaking of foods, I’d recommend having the following on hand when you return from the surgery: Gatorade (or other sports drinks), bananas, oatmeal and yogurt.  The doctors and nurses will also be able to provide you with a list.  Best wishes and please let us know how it goes when you get back and have a moment to breathe again. 

 Reply posted for stephenbsmith50.

Thanks - I will keep in touch and let  you know how the surgery goes. I am very interested in how you are doing long term.  Do you have any issues with scar tissue, pouchitis, or blocking of certain food?  Thanks for keeping up the this discussion board.  It's very helpful.

 Reply posted for wildcat.

Thanks so much.  It would be great if our son's would email and have another person to "chat" with regarding their situation.  I will encourage him to do that after his surgery.  I hope your son is feeling better.  They are so young to go through this much in their lives.  Please keep in touch.

 Reply posted for rifles96.

Great advice - thanks so much!!  We are going out this weekend to buy a few things for the hospital stay.  Thanks for the reminders about walking.  When you are in the hospital with UC flares, it seems as if that's the last this you want to do, so I will make sure he's aware that this is different and he needs to walk to feel better. Did you have any problems with blocking or infections?  Thanks for your help and advice. 

 Reply posted for stp26jc.

I see that you recommend eating a lot.  Of course, most of you do not eat very much or a variety of foods with UC.  What sort of foods do you eat after your surgery?  Also, what do you recommend that he stay away from for awhile?

 Reply posted for bonjoe.

What a wonderful story.  How was she feeling before her surgery?  It's so great that she is living a "normal" life now.  That is the hope and dream I think of everyone who has this surgery.  Thanks for sharing your story with me.  It's great to hear success stories, and makes us realize that surgery  truly can be the best option.

surgery in 9 daysMy 9 yr old granddaughter just got the takedown (took the bag away) It is the final surgery. It is like a MIRACLE. She looks, feels, and IS great. No more pain at all. She unlike many, has been pooping normally since the last surgery. The advice to get walking quickly is important. Also drink a lot. Easily can become dehydrated.  The surgeries are tough but if you just keep thinking you are back to a normal life in the end it is so much worth it. She was operated on at a Childrens Hospital  and the surgeon was unbelievable. Her first surgery was 13 hours long. She had two other things happen to her before her last surgery. Last surgery was 8 hours long. I hope he does as good as my granddaughter when all is said and done. When I see how good she is I think to myself I wish everyone would opt for the surgery.

 Reply posted for lfinn.

Please remember that many thoughts, prayers and best wishes will go with you both next week.    Let me throw my email address into the ring too (its stephenbsmith50@gmail.com).  It looks like others have you covered in terms of recent surgical experience and advice; I can offer a longer-term perspective (it's been over 20 years for me).  Please don't hesitate to ask if you have any long-term life with j-pouch questions; I'd be happy to share.  God Bless.

 Reply posted for lfinn.

I wish you and your son a lot of luck and will keep you in my thoughts.  I am currently well past surgery #2 and am waiting on surgery #3.  The first surgery was hardest on me mostly because I had lost 40 pounds and was quite ill at the time.  I can compare it to my second surgery which was a whole lot easier to manage as I was healthier (and heavier) going into it.  The advice to walk, walk, and walk some more is fantastic as the gas pain is probably the worst part.  I found that having my IPOD with me during those walks was very helpful.  Surgeries are no fun, but I felt better almost immediately afterwards because most of the disease had been removed.  The one thing that I learned when I got home was that you need to eat constantly as your energy levels crash quickly.  This may have been due to my weight loss, but probably was not the only factor.  Please email me at tony@lonelysmallintestine.com if you have any further questions..

www.lonelysmallintestine.com

 Reply posted for lfinn.

I had my first surgery for my jpouch on May 20th, 2009. I am not going lie and say it was easy. This is a major surgery and your son is going to need you to be strong.      Here are a few things he should have:                               1- For sure bring a robe, he will need to be up walking a lot  ( especially to get the gas/air out from the surgery, this pressure will make him feel like his collar bones are breaking - At least that's how I felt). Walk , walk and walk some more even if you don't want to. This will help him a lot. 2-loose fitting pajama pants & warm comfortable socks (I hated the hospital gowns)  3- Reading material to help pass the time. I also brought a lap top.  4-I really wish I would of had a heating blanket because I was always asking for a warm blanket. I was really sore and the warmth seemed to really help.  

 Let him know that he is doing the right thing. I am doing so much better now than I was prior to having my jpouch. I am currently fighting pouchitis but the antibiotics are working and I am feeling much better. If you have any questions or would like to talk please feel free to email me at rifles96@yahoo.com

Good Luck!                                             

 Reply posted for lfinn.

I had my first surgery for my jpouch on May 20th, 2009. I am not going lie and say it was easy. This is a major surgery and your son is going to need you to be strong.      Here are a few things he should have:                               1- For sure bring a robe, he will need to be up walking a lot  ( especially to get the gas/air out from the surgery, this pressure will make him feel like his collar bones are breaking - At least that's how I felt). Walk , walk and walk some more even if you don't want to. This will help him a lot. 2-loose fitting pajama pants & warm comfortable socks (I hated the hospital gowns)  3- Reading material to help pass the time. I also brought a lap top.  4-I really wish I would of had a heating blanket because I was always asking for a warm blanket. I was really sore and the warmth seemed to really help.  

 Let him know that he is doing the right thing. I am doing so much better now than I was prior to having my jpouch. I am currently fighting pouchitis but the antibiotics are working and I am feeling much better. If you have any questions or would like to talk please feel free to email me at rifles96@yahoo.com

Good Luck!                                             

 Reply posted for lfinn.

my 21yr son got his ileostomy 4 wks ago for CD in his rectum. Hopefully it can be "reversed" in 6mos+. We have learned a ton in the past few weeks and would be happy to share what we know in terms of output, bag types etc. Your son will have his ostomy for a much shorter period but it will still be an adjustment. We were very resistant-but honestly-he is feeling sooo much better. Feel free to email me- and if your son needs someone to talk to-or email-that can be arranged. sulzers@sbcglobal.net. Sue