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

@Former Member 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!

@Former Member 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

@Former Member 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???

@Former Member 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).

@Former Member 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.

@Former Member 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???

@Former Member 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.

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

@3Cutedogs posted:

I was 17...  Senior in high school. 1990.  Even with the issues many of us have had since the surgery, I feel so very lucky.  Abscessed fistulas and two more  runs with  temp ilieostomies after the fistula repairs.   Blockage surgery, strictures, dilatations...  These complications were nothing compared to what life was like prior to getting my J-Pouch.  I was 5' 9" and weighed 88 pounds,   blood transfusions and spent a month at the hospital before I was healthy enough to have the surgery. I am hoping and praying my J-Pouch holds out many more years.   I gained my weight back quickly (lol) and can eat most foods.  I do have "accidents" and wear pads all day/every day.  But, life is good.  So many have gone through much, much more.  

I am sorry to hear hon!!! I hope things get better!! Have you tried loperamide to help with the accidents???

I was 15 with ileostomy and jpouch next year at 16.  I'm now in my mid to late 40s.

@Lu31 posted:

I was 15 with ileostomy and jpouch next year at 16.  I'm now in my mid to late 40s.

Wow!!! You are a warrior getting that done in high school!!! I know that must have been hard work, especially since teachers can give you a hard time about everything nowadays, so unfair! But you made it through!!! You should be soo proud! I am proud of you!!!

Thank you.  Yes wasn't easy as we all know.  I had the 2nd and 3rd surgeries in the summer but last one done right before returning to school. Ended up missing a bit anyways as my system took time to get used to it. Still, happy to get rid of the bag.

@Lu31 posted:

Thank you.  Yes wasn't easy as we all know.  I had the 2nd and 3rd surgeries in the summer but last one done right before returning to school. Ended up missing a bit anyways as my system took time to get used to it. Still, happy to get rid of the bag.

You are welcome! And wow that is amazing!! Soo cool how you overcame that and still graduated Graduated not letting stuff defeat you

Colostomy age 2. Closed age 3

K pouch at 18.

It's been 41yrs.

@skn69 posted:

Colostomy age 2. Closed age 3

K pouch at 18.

It's been 41yrs.

Why did you need k pouch at 18??

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

@skn69 posted:

I had anal atresia at birth, part of a group of birth defects that appear together called VATERS syndrome. I also have Ehlers Danlos syndrome which is a connective tissue disease that impacts the creation of collagen (the glue that holds things together in your body). The result was that every time that they tried to surgically fix the anal atresia they made it worse until I no longer had a functioning sphincter. I also had IBD (or IBS, I can never remember) but I had bloody stools and horrific cramping for years.

Add that to no sphincter and you have the picture. Life was hell. 2 failed Gracillis muscle transplant surgeries to try to create a functional sphincter and I was done. I had already had a colostomy that wrought havoc on my skin (collagen again) and I had to find an alternate solution.

The Kpouch was the miracle that saved my life and gave me a life.

It has been 41 yrs and I am still thrilled.

Sharon

AMAZING!!!! Glad your better