my 6 yr old son was diagnosed at 18 months old with UC. we have tried it all. Currently in hospital and not responding to anything. 40 mg steroids, humira (we tried remicade and he had a bad reaction). He was hospitalized in december for 3 weeks, he started to do better, but he must hsve gotten cdif then and is causing him to have severe colitis now, They can't capture the colon and they are having us start to think about surgery because of his age and being never fully off of steroids. Anyone out there who's child has gone thru this, who can let us know info on getting thru this or if we can talk please email me at wykpisz@aol.com. Thanks Eleanor

My son developed UC at age 8 and had what was supposed to be a one-step surgery during his second flare eight months later, two weeks after his 9th birthday. He had post surgical complications--required two more surgeries and months in the hospital, plus take down of the unplanned emergency ostomy a year later. He is 18 now and doing fine with his j-pouch.

Back then I did not have computer access in the hospital; so if you are online, you have a great advantage as far being able to learn as much as possible. This site was a great resource to me when we got home from our first long stay and has continued to be one for the nine years since.

Six is very young. If there is any doubt about your son's diagnosis (i.e., if there is any chance of Crohn's) or if he is on high-dose steroids at the time of surgery, I would consider having only the colectomy and ostomy first and seeing how he does.

It's very rough, but you will make it. Hang in there.

Hi Eleanor,
I too am a jpouch mom, but mine was in her teens when she went through surgery. It's very hard emotionally to watch your child go through all of this. I just wanted to reach out and tell you how sorry I am for you and George. My best advice is to do what you're doing, reach out and talk to other people so you don't feel so alone in this, and read and research as much as you can. But also, keep a journal.

When you're sitting in his room and he's sleeping, write it down...get your thoughts and feelings out of your head and on to paper. You may want that to look back on some day. Also, you may already do this, but request copies of all records/tests/etc. You're entitled to have them and they may prove to be helpful in remembering information for future reference.

Feel free to email me if you'd like just to have another mom to talk to. Click on my name drop down public profile and my address is there.

Don't forget to take care of you. You can't be strong for George if Mom's worn down. I know...easier said than done. Take care,
Elise

I am so sorry that you are going through this. I have just completed this process and have a 6 year old boy. I can't imagine what you are going through. My heart aches for you and your little one. Please know that my thoughts and prayers go out to you.

Only advice...please make sure that you get a VERY good surgeon for him. That will insure his success.

God bless...
Susan

I have no advice for you but I can relate. My daughter "Rachel" has had UC since age 4(she is now 7 1/2). She was the youngest case I had heard of until I read about George. Our Dr. is suggesting Remicade as the next treatment but I have heard horror stories about that drug! This j-pouch surgery sounds scary but it sounds like a better quality of life in the long run. What do you think?

Big Jim, With George he tried Remicade( he had a bad reaction to it) and now Humira and doesnt seem to work, but we just started. George has not responded to anything except large doses of steroids, but the side effects are horrible. He is currently in hospital with cdif which he can't get rid of and his colitis is severe. They are recommending to remove his colon. The move research I do on the subject the less it scares me. Definitely sounds like it could offer my son the best quality of life. The current meds side effects are horrendous and being in and out of the hospital are no way for a kid to live. We are just trying to exhaust all options and praying for a miracle, which may be surgery. Email me if you want to talk. Eleanor

Eleanor...I had a really bad case of c diff that Humira made 10x worse. The only thing that helped me was stopping the Humira treatments and going on vancomycin. That really cleared it up, but as soon as I started on the Humira again...the c diff was back.

I'm so sorry that he's going through this. I know how devastating the disease is and the c diff is just that much more impossible. It really adds insult to injury.

I hope they can find something to help him. I just wanted to mention what finally helped me. I was bedridden and not able to eat until the vancomycin. After 4 days of that I was sitting up and begging for food. I felt SO much better.

Take Care
Susan

Hi Eleanor- My son is 13 (just turned), and was diagnosed at 10 with U/C. After 27 months of him being sick and in and out of the hospital, he never really was able to get into remission. He was on pretty much every medication out there, beginning with Asacol, and Pentasa, Azulfadine, 6MP, Lialda,of course Prednisone, and finally a year on Remicade with 8 week intervals too long, so every 6 weeks. Each drug eventually failed and none was able to put him in remission and keep him there...even Prednisone...it helped with his symptoms, but as soon as we began to taper, he got sick again. Surgery seemed to be the only choice left for him to be able to have a life out of the bed and out of the hospital. He is now 6 weeks post op from the 1st of 2 surgeries that will eventually give him a j-pouch. He has a temp. ileostomy and although we have had some minor issues since the 1st surgery, I can tell you that his life has greatly improved. We are still weaning off the steroids. He was on them for so long, it takes a while to get completely off. So far, the decision for him to have surgery has been a good one. He is a totally different kid now, almost like he was before he got sick. It's a hard decision to make regarding the surgery, but for him, it was all there was left. When his Dr. suggested the only option left was surgery, we did seek out a 2nd opinion at The Cleveland Clinic...as it turned out, the opinion was the same as his Pediatric GI.
It is a tough road, and it is so very difficult to watch your child be so sick, but, I have found the support here and at our Children's Hospital in an IBD Kids support group to be an awesome encouragement...there is hope, and many others have walked this road before us and are here to help in any way they can.
Hang in there...you can get thru this!!!

-Sue
Caleb's Mom
This disease

Sue, that is great to hear, the more research I do, comes to the same conclusion as you , although you have seen it first hand. Where did your son have his surgery. If it were to come to that, I would like to get the most experienced pediatric surgeon. Please respond anyone else on where best place for this surgery is and what surgeon. Thanks so much for everyone's help. It helps more than anyone knows.
Eleanor

Hi Eleanor- My son is a patient at Nemours Childrens Clinic which is attached to Wolfson Children's Hospital here in Jacksonville....His surgeon was Dr. Robie (Chief of Pediatric Surgery)...he has done lots of these surgeries...however most were not done due to U/C, but some other disease which name escapes me now, but, I did look it up on the internet after we had our initial consult with the surgeon. I will let you know how the next part goes, but, so far, we are totally satisfied with Dr. Robie. He is very informative, took time to answer the pages of questions I had when we went for the initial consult. He spoke directly to my son, and just generally took his time and in no way seemed rushed. Of course his GI Dr. at Nemours and for the matter the entire GI department are AWESOME!!! All the Drs. there have been on the list of top 100 Drs. as has Dr. Robie, my son's surgeon. I am very happy with the care and treatment my son has received not only at Nemours, but in Wolfson Children's Hospital.

My son developed UC at 4 years old. We went through all the meds plus remicade. Lots of predisone and side affects. In and out of hospital every six months with bleeding. At age 7 years old we were told the best thing for him would be the J-Pouch. So we set up a date for the surgery. We got cold feet and called it off and went for 2 more opions. They told us to try remicade if that didn't work than we should have the surgery. It didn't work. So he got the J-Pouch. We were told before the operation that when younger kids have a J-Pouch that they will have troubles at night with controlling stools. My son had troubles every night. He also had trouble gaining weight from the age of 7 to the age of 13 he only gain 5lbs and didn't grow in height. There is more things that happen to my son and I don't want to scare you away from the J-Pouch because it does work for a lot of people. My only advise that I would give to someone with a young child is to get a couple of opinions and when you do decide that he needs the operation don't be in a hurry to have the 2nd operation to be reconnected. You have lots of time for that. We were told by John Hopkins to what a year to be reconnected. Our Doctor said 3 months which is the right amount of time. We wish we would had listen to Johns Hopkins.
My son is now 14 years old and has a ileostomy which he will live with. He is now stronger than he has ever been and has gain weight and he loving life. He just started playing pony league baseball.
I know what you are going through and I know it hard for you son to go through this and it is also very hard on the parents. We will keep your family in our prayers.

Connie is right about making sure it not crohns. Eleanor if you do want to see what happen to my son. Look under General discussions forum and look for UC now Crohns about a few weeks ago.

My daughter had the j pouch surgery at 15, with the top surgeon for this procedure, with many many complications, you can never truly determine how the body will react to such a drastic surgery, she escalated out of control with this disease in 3 short years which left us no choice but surgery. there are good days and not good days, we are still trying to get weight on her as she is loosing 3-4 lbs a week. Just make sure you seek a second opinion and are comfortable with your decision as this is a long process and a long heal time.

My son was diagnosed with UC at age 18 mos. He failed all treatments (except humira b/c it was not available), was steroid depend, wasting away, not gaining height, transfusions etc....so at age 3 he had his colectomy. he had some complications but as sick as he was that was expected. It too a long time to regain his strength after being in bed so long and being so little. He is 5 1/2 now and loving life. He has an ileostomy that he will probably keep and thats' ok. e-mail me if you want.