hi leslie my son had three stage j pouch surgery at Mt Sinai in NYC to save him from a runaway case of UC that started out of the blue in July of 2008. He zipped through all the meds, even Remicade...
I am wondering if any j-pouchers have been advised about the safely of Advil after the surgeries. My grown son who has a j=pouch that is now 6 months old, occasionally gets very bad headaches and...
I would like to chime in here that might help ease your fears some - my son had a runaway case of UC for only 10 months and he opted for the surgery. he was sick beyond belief, in and out of the...
My son who took Accutane in his late teens recently had the three stage jpouch due to UC. One day, he was perfectly healthy, on no meds at all and suddenly the next day he work up with terrible UC....
there is a great organization in Kentucky that collects unused suppiles and distributes them all over the world. if you google donate ostomy supplies and use kentucky as a keyword, you should be able...
thanks - i didn't know the probiotic could help with gas. i will pass that on to him. thanks for all your knowledge that you share with us....
Hi Everyone My son is almost four months past his reveral. He had the three step jpouch surgery. Lately he has been having pretty significant gas pains and I am wondering if anyone else here...
Collicat - Anthony's surgery was three stages as well and his surgeon insisted from the start to do it this way. He was emphatic about his experiences between two and three stage, stating that down...
Hi there just checking in to wish Dillon all the best. Anthony is now 8 weeks post op from the third and final j pouch surgery. It has been a slippery slope but it seems as though he is beginning to...
absolutely apply to the hospital for charity care - it might be a struggle at the beginning, but they will almost surely give you some kind of relief...
i think many people do get relief from Remicade, although it seems that for many, the relief is temporary. My son had an infusion in the hospital and it worked immediately and we were thrilled....
I feel compelled to write after seeing all these posts. My son has had two hospital stays at Mt Sinai in NYC and the nursing staff was unbelievable. I would say that we encountered close to a dozen...
Collicat - so happy you posted to let us know that Dillon did so well. We have been checking frequently to see if you had had a chance to post. The thirst is amazing, but soon he will be able to get...
my son, who just had 2nd stage of 3 stage jpouch surgery to cure his UC, was on Accutane in high school. he was diagnosed with UC about 7 yrs later...
To answer your first question, YES, he was feeling very good going into the 2nd surgery. His energy was back, as was his weight and his nuitrition. I won't lie and tell you that the 2nd one isn't...
Hi Collicat Sorry to see you back on this forum - I was beginning to hope that things were looking up for you. My son Anthony finished stage two of the 3 stage j pouch almost two weeks ago. There is...
it IS nice to hear about your positive attitude. My son, also 24, had the 1st stage of the (3-step) j pouch surgery and he has done very well, too. He had his surgery May 7th and is having his 2nd...
My advice would be to avoid mentioning UC at all costs, SINCE YOU NO LONGER HAVE IT!!!. You have a far greater chance of getting life insurance with a jpouch than you do with UC, so that's another...
Hi Collicat and others I was actually feeling happy to not see you on the forum because I figured that meant that things were going well for you. As far as the surgery goes, Anthony has done quite...
Eva Lou I'm wondering.........have you ever even considered the option of surgery? My son was terribly sick with UC, the meds seemed to make him sicker and he was overcome with anxiety all the time....
I want to make this very clear. For most the benefits of remicade are very short lived. It worked like a charm for me for the first three infusions and then even after doubling my dose it all of a...
To second what my mother said I will briefly elaborate on my experience with 6mp. To begin it will take 6-8 weeks before you see any real benefit from the drug. I was on the drug for about 10 months...
6mp works for most, though for me its effectiveness was short lived. Please be careful with your dosage as it can cause people to become immuno compromised....
hi there my son, who is 24, had the first stage surgery almost four weeks ago. and even though he went into the surgery very sick because of the UC, he did great and was out of the hospital 5 days...
THANKS TO EVERYONE - VERY HELPFUL. AS YOU CAN PROBABLY GUESS, WE ARE PRETTY NEW TO THIS!...
My son is new to a bag (three weeks in) and until he finally gets the pouch in Nov or Dec, he seems to be having a hard time about showering. He says the bag comes loose when it is in contact with...
Just wanted to bring to everyone's attention the importance of really really keeping on top of your blood work if you are taking 6mp and Remicade at the same time. My son was on both and he ended up...
Hi again He is definitely getting better about the bag - the activity of the bag is very closely linked to the quantity of food he eats. If he eats late at night, he is up once (maybe twice) to empty...
Hi there - we were advised against immodium as well - toxic megacolon was the reason. however, if it's just a one or two day thing, maybe your doc would ok it. I have been wondering about that prom -...
our experience with Remi is as follows- the first dose worked like a charm almost immediately. the second and third does were also charms but then by the fifth treatment, it noticeably lasted for...
I would have to agree with seconder. I believe that any good doc at the very least makes you aware of the surgery option. For my son (who had step one of the jpouch surgery three weeks ago), at least...
thanks for the re-inforcement - so far the healing is going very well - his regular doc saw him yesterday for the first time since post-op and she was amazed that the surgery was able to be done...
Cathy You have been in our thought as well. How are things going on your end? Please let me know and never hesitate to ask me anything - I am happy to share with any parent who might need to vent!...
Hello out there Well, we are almost 3 weeks past the first surgery and my son is definitely feeling better. The pain from the surgery is pretty much a memory, the terrible pain from the prednisone is...
Hi there Yes, we are home and it had been a bit of a roller coaster. His health is greatly improved, but the emotional toll of the "bag" has been significant. It's a little more than we were prepared...
the truth is, your doc is right - the only way to cure UC is to remove your colon. My son got run over by the UC train 10 months ago and finally this week, had his colon removed and we are on track...
Hi Cathy His surgeon opted for the 3 step process based on his health at the time of the operation - his nutrition levels were very low and his inflammation was very high. While he was quite...
Hello Cathy Three days post-op and we are beginning to see some light of day. The surgery was successful and the surgeon walked out and looked us in the eyes and said............you absolutely made...
Hi I am the mother of a 24 yr old son who got run over by the UC train ten months ago. We have watched him suffer, get depressed, miss work and basically be sick all the time. We treid every drug out...
my son was on REmicade for about three or 4 months until it stopped working but the whole time, he had terrible headaches and constant back pain. even though the symptoms of the UC subsided for a...
my son is getting the cyclosporin as i write this post - i hope it does some miracle work on him just to give him time to think - i'm glad that you were given the same opportunity. i really do wish...
thanks so much for those responses - they help a lot. oddly enough we are waiting for the cyclosporin medicine to come up from the pharmacy at Mt Sinai - i hope it gives him some relief from this...
I will keep you posted on how he does - it's all but decided that he will do it and i believe you are right - sooner better than later. the risks of these drugs, their side effects and the fickle...
My son was diagnosed 10 months ago and we are already looking at surgery - he has failed with steroids, 6mp and after 4 Remicade treatments, that is failing, too. We have tried diet, acupuncture,...
thanks - anything positive is welcomed. our one doc from Mt Sinai made it seem like it was the best thing since white bread, and yet our other GI doc immediately warmed of so many possible...
My son has been totally sick since his rapid onset of UC and is seriously considering the 2 step surgery to stop this disease once and for all. Has anyone out there had it and been happy about their...
Hi Lee I have a 24 yr old son who is suffering a lot with UC and none of the meds seem to help, most seem to make him sicker. I would be so happy to hear anything you have to say about LDN. I want to...
Hi Eveyone I have been doing some reading and have come ascross LDN as a possible treatment for controlling the symptoms of UC. Does anyone out there have any experience of info with this? We are...
thanks so much for your response - i will do all the reading you suggest and pass it on to my son. I can't help but question the feasibility of doing the raw food diet while he's in a flare like you...
thanks for the internet etiquette - i am new to this. I'm happy to hear that you are finding success with Remicade. I wonder if you are experiencing any difficult side effects from it. I get so upset...