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Teenagers with pancolitis

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Ulcerative Colitis
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Posted 5/14/2010 12:01 PM (GMT 0)
Hi I am wondering how many on the forum are or were teenagers who were diagnosed with pancolitis from the beginning?

Because of the range of ages/degree of colon affected on the forum I am trying to locate which members are closest to my daughter's situation and then perhaps a pattern of what treatments are offered and which work best may be easier to see.

Thanks

Sue

 

Posted 5/14/2010 2:41 PM (GMT 0)
I wish I could go back to when I was first diagnosed and just go ahead and have the surgery done. Would have saved alot of worry, pain, anxiety, anger and money.
Posted 5/14/2010 2:50 PM (GMT 0)
Hi Sue,

My son was 15 when he was diagnosed with ulcerative proctitis. Within a year it had progressed to pancolitis. We very quickly, over three major flares, went through almost the whole gammet of drugs.

They usually start you on 5-ASA drugs and most GIs will want you to use a steroid (or 5ASA) enema. My son did not like the idea of this at first but quickly learned it was not such a big issue and he had no problem inserting it himself. At one time he was also using a "foam" that you squirt up our butt(sorry a little graphic but it is what it is). He found this much easier, but it does not reach as far up the colon as an enema.

Prednisone can be a wonder drug but at some point it becomes your enemy and the trick is to stop using it before this happens. You do not want to take it any longer than absolutely necessary.

We also tried Remicade which is an infustion (IV) that you get at a hospital or clinic, usually every couple of months. It takes a couple of hours to get. It is extremely expensive but a lot of drug plans cover it. Unfortunately my son made antibodies to this drug.

We never did the 6-mp or humera route for different reasons that I am happy to discuss with you if you want.

Any one or combination of these drugs have worked miracles for a lot of people. Again, unfortunately we were not in that group. After finding the very best colorectal surgeon that we had access to, my son had his colon removed this past year and a J pouch built. When we started this journey none of us would even mention the word surgery and it was a terrifying thought. Now that it is all over, truly, our only regret is that we did not do it sooner. He is now completely healthy, off all medications, living life exactly the was a teenager should and getting ready to head off to university in the fall.

I have been in your shoes and I know exactly how difficult this is for you. I am happy to discuss any aspect of our journey and give you any insight that I can.
Posted 5/14/2010 3:30 PM (GMT 0)
i was diagnosed with pancolitis and UC but everything was better then, but it kinda seems all the same to me uc ibd pancolitis.
Posted 5/14/2010 3:36 PM (GMT 0)

David-M said...
i was diagnosed with pancolitis and UC but everything was better then, but it kinda seems all the same to me uc ibd pancolitis.

They are the same thing wink

UC is an irritable bowel disease and pancolitis means that the UC affects the whole colon
Posted 5/14/2010 3:41 PM (GMT 0)
lol alright thanks i guess thats why there gonna remove the entire colon except a small part at my bottom.
Posted 5/14/2010 4:41 PM (GMT 0)
they generally have to with UC anyway, because it could move to another part of the colon if left
I hope your surgery goes well!
Posted 5/14/2010 9:35 PM (GMT 0)
i was 19 when diagnosed just about a foot or so of my colon was inolved within 3 years it developed into pancolitis
Posted 5/15/2010 3:16 AM (GMT 0)
I was diagnosed at 15 with pancolitis.

They started treatment with two (or three, can't remember all of a sudden) Asacol 1xday, which helped immediately (but not enough) and 40mg prednisone. I ended up going on pred like three or four times, but only for a few weeks at a time, which was good. They had offered surgery as an option when they diagnosed me but I said no.

Asacol wasn't cutting it so now I'm on 125mg Imuran 1xday.

Any questions, please ask =)
Posted 5/15/2010 4:44 AM (GMT 0)
I want to say when I was diagnosed at 15 I had pancolitis too, but it was a long time ago...
Posted 5/15/2010 10:47 PM (GMT 0)
Hi! My name is Heather and I was diagnosed about a year and half ago with UC. I am 18 years old, and would love to get in contact with some people my age who are dealing with the same thing.
Posted 9/18/2013 12:28 AM (GMT 0)
Hi there, All these posts are from so long ago..not sure my information will even matter anymore....but perhaps someone new stumbling on the forum, as I have, will find my information useful.
Quick story: my daughter, 14, started having occasional constipation backed with diarrhea...not abnormal. In time..there would be a little blood on the toilet paper...blamed it on the constipation..again..normal...fast forward a year....she ended up, after a series of drs appts...flex scopes and then colonoscopy...diagnosed with severe ulcerative pancolitis and hospitalized, not just with the hope of saving her colon but her life. She was having up to 30 bloody movements a day...missed 2 months of school..it was terrible.
Her Dr never once asked about diet....medication, medication, medication. (which, by the way, caused her face to bloat and her hair to fall out and took allll the energy out of a kid who once played volleyball on her highschool team and was elected homecoming princess)
We experimented with food...fired her Dr and she now maintains remission with food. She eats PURE. no gluten, corn or dairy...I try to buy organic if budget allows...but not always...everything is from scratch...absolutely nothing processed...I grow aloe and puree it with organic chamomile teas with raw honey (it seems to help with discomfort). We still keep medication and suppositories (prescribed by her Dr) on hand in case a flare hits that we can't control by diet...but usually she only needs to take them for about 1 week out of 2 months...and flares consists of 1 normal bm with a drop or two of blood. On a rare occasion there will be blood in the toilet bowl and that is when she will start her medication for a week and re-establish her diet (as usually that type of flare occurs when she has gotten lazy (aka becomes a normal teenager) and eats pizza or something she knows her body cant handle.
My daughter is amazing. She is 17 and a senior in highschool. She is a HUGE advocate of eating pure. She knows she can never have children...she knows that colon cancer is a risk...she knows she has to remain vigilant and has really persevered. Don't give up. Don't accept "we don't know" as an answer...experiment with food. At least BEFORE you decide to remove major organs from your kid. My daughter's Dr had her scheduled for full-colon removal at 15 until I discovered gluten was a major irritant. Within 24 hrs of removing gluten from her diet..everything stopped...the bleeding, the pain...she had a scope 2 months later and even her Dr was shocked to find a colon she had wanted to remove was pink and healthy..no signs of inflammation or ulcers. I hope my, or I should say, my daughter's story, can be of help to someone!
Best of luck!
Posted 9/18/2013 1:14 AM (GMT 0)
Great post but i dont understand why she cant have kids, lots of pg women ob the boards!
Posted 9/18/2013 1:22 AM (GMT 0)
Yeah, I also don't understand the no kids thing. My UC started after my son was born, but my daughter is 6 months old and I was in remission all through pregnancy and still am.
Posted 9/18/2013 2:14 AM (GMT 0)
That's ridiculous about not having kids. I assume that the train of thought is that she could pass on a genetic mutation that would give her kids UC. While that is not impossible, it is highly improbable. In almost all cases UC is an autoimmune disease, not an inherited disease. If you think about it, every human being out there has genetic mutations which could pass on some disease to their kids. I bet just about everyone passes on several cancer genes. It just a matter of luck weather the child will ever come down with cancer or not. I bet that almost every single human being, if they lived long enough, would eventually come down with some kind of cancer. If we all decided not to take the chance of passing on a genetic mutation to our children there would be no children left in the world and the human race would die out. Her chances of having a "normal" child are very high.
Posted 9/18/2013 3:10 AM (GMT 0)
someone please tell gary in lewis ville that he's a dumbass for me - unless everyone is gone by the time you reads this - LOL ! dude, where are ya ?

thanks -
Posted 9/18/2013 3:59 AM (GMT 0)
This time I am not with you, stoy stud. Most UC childlessness is self selected, and often after Jpouch surgery. Some unknowns here. There must be something the original poster hasn't shared,or doesn't yet know. There might be a genetic component, but the environmental turn-on is not known. Someone who elects not to have a child just because it might happen to their offspring...is not well informed on genetics. If you choose not to because of fear of your own symptoms, I understand and respect that decision. Motherhood should not be squashed in advance of scientific knowledge.
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