How old were you all when you got your J-pouch?

@Lauren Of Emerald City posted:

Totally understandable!!! I had to quit college quite a few times because of IBD and even having it in high school was brutal. I wish teachers and everyone in general can understand and be more empathetic towards people. A lot of people do not even try to understand things until they are going through it themselves; that needs to change!

So happy you got through everything! I love hearing how people do not let IBD or other situations beat them!

definitely! I'm happy to hear you are well now. its honestly such a mental strain too. cant focus on anything because its constant pain. did you also get a j pouch around the same age?

I was 22 years old

@edp posted:

definitely! I'm happy to hear you are well now. its honestly such a mental strain too. cant focus on anything because its constant pain. did you also get a j pouch around the same age?

I totally agree!!! And yeah, I did actually. I was 22 years old, one week after my birthday lol. I am 28 now, how old are you now???

@winter wish posted:

I was 22 years old

Same!

@Lauren Of Emerald City posted:

I totally agree!!! And yeah, I did actually. I was 22 years old, one week after my birthday lol. I am 28 now, how old are you now???

i am  20 now

@edp posted:

i am  20 now

Wow! You are the youngest person I have met on here!!! So cool to meet someone else in their twenties

@Lauren Of Emerald City posted:

Wow! You are the youngest person I have met on here!!! So cool to meet someone else in their twenties

yea! you are too. people find it v interesting when they hear I had ulcerative colitis at 17. ig genetics just weren't in my favor :/ lol

@edp posted:

yea! you are too. people find it v interesting when they hear I had ulcerative colitis at 17. ig genetics just weren't in my favor :/ lol

OMG! Same here!!! I was diagnosed at 17 too!!!! Did they give you Biologics like Remicade? I never did biologics. I tried Azathioprine, Mesalamine, Apriso, Prednisone, Lialda, and Uceris.

What have you tried???

@Lauren Of Emerald City posted:

OMG! Same here!!! I was diagnosed at 17 too!!!! Did they give you Biologics like Remicade? I never did biologics. I tried Azathioprine, Mesalamine, Apriso, Prednisone, Lialda, and Uceris.

What have you tried???

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

@edp posted:

omg haha. yea, i tried lialda and mesalamine first, then humira, and then remicade and prednisone while i was hospitalized. now i literally only have to take one pill of immodium a day and i'm all good!

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

Fwiw - my brother was 8 years old when he was diagnosed (he's 64 yo now).  And my nephew was 9 years old when he was diagnosed with both U/C and Chron's (he's 22 now).

@Lauren Of Emerald City posted:

Oh you tried a lot of stuff I see! Happy to hear that you are better

It must have been hard for you to make it to the remicade infusion centers during high school! That must have been a nightmare back then lol, epsecially 4 hour treatments!

You graduated high school still too!, You are a very determined person! I am soo proud of you

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

@Mary O posted:

Fwiw - my brother was 8 years old when he was diagnosed (he's 64 yo now).  And my nephew was 9 years old when he was diagnosed with both U/C and Chron's (he's 22 now).

Do they both have a J-pouch or ileostomy???

@edp posted:

aww thank you!! definitely not easy for any of us. proud of everyone who makes it through and those still fighting. have you had any issues since the takedown?

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

My brother had a precursor to a J pouch when he was 9 yo (diagnosed at 8 yo).  It was 55 years ago and was an experimental procedure at the time.

@Lauren Of Emerald City posted:

The first week of Takedown, I was not taking it easy like I should have. I did leg lifts and my stoma wound opened up resulting in wound separation. Water/soap got in there from the shower too and it infected the area. The infection spread to the whole small intestine including the pouch. I had to go back to the hospital for bowel rest and antibiotics for a couple of days. It was my fault though lol. Ever since then I have not gone back to the hospital for my pouchy.

I only had minor issues since then like if I eat the wrong thing or do not drink enough water I get constipated, but that is only a couple of times a year thank goodness. Nothing major.

How about you???

oh man that sucks. i never had any complications like that but i just found out i have pouchitis and cuffitis. its pretty common though and not as painful as UC.

@edp posted:

oh man that sucks. i never had any complications like that but i just found out i have pouchitis and cuffitis. its pretty common though and not as painful as UC.

Yeah it was my fault though, I did not know I had to take it easy after takedown lol, lesson learned! Lol.

And oh no!! Sorry to hear that! Yeah that is pretty common! Are you being treated for it???

@Mary O posted:

My brother had a precursor to a J pouch when he was 9 yo (diagnosed at 8 yo).  It was 55 years ago and was an experimental procedure at the time.

Oh my!! 9 years old???!!!?!! He is a trooper! The J-pouch surgery is only around 42 years old officially. I hope everything was okay at that time.

Is he a forum member too???

And is he okay???

@Lauren Of Emerald City posted:

Yeah it was my fault though, I did not know I had to take it easy after takedown lol, lesson learned! Lol.

And oh no!! Sorry to hear that! Yeah that is pretty common! Are you being treated for it???

yea,  its not that bad. im just taking antibiotics

@edp posted:

yea,  its not that bad. im just taking antibiotics

Oh good! A good medicine for cuffitis is Mesalamine suppositories. I think that will help you a lot.