I'm interested in chatting with other New Yorkers who have had the Jpouch operations. I have had the first surgery, second step takedown hopefully March if all goes well. I live upstate near Rochester...my name is Becky

This message has been edited. Last edited by: rook3034,

I also live in upstate NY! Syracuse

Nice to meet you...you are at the same point I am I how cool! I had my colectomy and pouch created in Dec with a temp end ileo due to poor messenary (my intestines are pretty well stuck together and adhered to my abdominal wall - I have had many pelvic adhesions due to multiple GYN surgeries).

I had alot of trouble with my stoma the first month sometimes changing the wafer 5 times a day due to leakage and ended back up in the hospital with an abcess in my lower abdomen in January. My stoma is sunken into my abdomen and the outlet (I think that is what you call the hole that actually allows the stoma to drain) is pointed down so I would constantly drain underneath the wafers. I was in the hospital for a week and during that time the ostomy nurses tried several appliances and I refused to be discharged until they came up with something that would last at least a day.

I don't think my surgeon was happy with me being so bullheaded, but I told him I needed a better quality of life and with a leaking wafer - sometimes not even an hour after it was applied - I wasn't able to leave my house and I shouldn't have to live like that...besides the fact my skin was in terrible shape weeping and burning all the way into my belly button and down to my pubic hairline...it was awful.

They found a deep convex appliance that is lasting 4 to 5 days it is soooo much better. My only problem now is I am still very tired most of the time and lately my pouch seems to want to work (which may be a good thing LOL). I will pass a bunch of mucus, but it feels like I have something stuck..from reading posts it sounds like this is normal but from straining thinking I would finally pass a clump of tissue or staples or something my lower abdomen is really hurting again. I'm hoping it will feel better in a few more days and since I saw on here where others experienced the same sensation I've quit straining trying to make the feeling go away.

I have my pouchogram and see my surgeon the end of Feb. and if the pouch doesn't leak I will be reconnected mid-March. I'm kinda nervous since the last surgery and recovery was so hard (12 hours in OR, 4 in recovery, 4 transfusions along with experiencing respiratory distress and having to be on oxygen and of course they couldn't do it laproscopically as planned because my intestines wouldn't cooperate so they had to use a large incision along my public hair line).

It really took a toll on my husband as well, he hates to see me sick and it scared him to death when it didn't go as planned, took so much longer than told, when I finally got to my room I was on oxygen, needed transfusions that night and the next day (never needed blood before), they were pumping fluids in me like crazy cause my BP was extemely low so I had to stay laying down and I must have looked like hell LOL.

So as much as I am looking forward to not having the bag, I feel bad for hubby having to watch me go through another surgery, even though my doc and others say the reconnection is a breeze compared to the colectomy and pouch creation. I already know they have to open up the large incision on my pubic line again- laproscopic isn't even an option. I'm just hoping my body cooperates and I don't have as many complications this time around.

Well now that I've written you a book LOL, I'd be interested in your experience so far if you don't mind sharing. I don't know anyone locally who has had UC or the surgeries, would be very nice to have a pouch buddy

Becky

This message has been edited. Last edited by: rook3034,

Hi Becky,I just finished my last surgery,this month.I am so glad that it is over.I look forward to playing all my sports again.I am here in Syracuse.

Hi,My name is Brian.I'm from Schenectady,ny.
I had my surgeries down at Albany medical center
in Albany.

Hi...
I'm from Upstate NY, near Utica,I had my surgery done in Cooperstown. But now I see a surgeon in Syracuse NY.....
Char.....

I am also a New Yorker. I live near Albany. I had my surgeries at Albany Med.

I am a New Yorker.

I also live in New York. I had my surgeries with Dr. Milsom at New York Presbyterian Hospital.

janna

I live in Albany, NY. I had my J-pouch surgery in August 2007 and have not been reconnected as of yet. I'm headed to Cleveland in the next couple of weeks for a second opinion.

Hey My fellow New Yorkers..
I live in Westchester county...I was diagnosed w/uc 10yrs ago.On 7/28/09 I had a total colectomy,j-pouch was created and a loop ileostomy. On 10/27/09 I had the 2nd part of my surgery(revision).. I need some advice and suggestions please.. At times I feel so miserable going to the bathroom as many as 8-10 times a day,my rectum is in a lot of pain and I've had two episodes of really bad cramps.. There are times I miss my bag..... I am wondering when will all this get better.. So far I eat bland meals,drink plenty of water,I do the sitz bath,and put the ointment on....
One more question how long does it take for the wound where my stoma was closes more or less???

I live in the Adirondacks up near Gore Mountain. I had my surgeries at Albany Med like a lot of NYers have too - had Dr. Lee - great surgeon!

hey im a fellow new yorker, my name is denise im from the city. im 24 i had my 1st surgery when i was 18 and had my reversal when i was 19 im here if anyone wants to chat or has any questions.

I have the J-Pouch. I live in Brooklyn. I'm 30 - I had the surgery 15 years ago, when I was 15 - I think I was one of the first people to have it. I have familial polyposis. It took a long time for the doctors to find out what I had since it's pretty rare and almost always genetic - but in my case no one in my family had it - it was just a mutation. I only had one operation - had my colon removed and got the j-pouch all at once. This condition has caused me so much embarrassment, stress and pain (physical and emotional) over the years. I never even realized how upset I was until I went to my surgeon today to discuss it, and had a total breakdown, just started crying and couldn't stop. I guess it's something that I felt like I couldn't talk to about anyone because I just think it's a very private thing, and no one else can really understand. I also just find it a very embarrassing thing to live with. My surgeon told me about this discussion group today and I'm really looking forward to having people to talk to about living with a j-pouch.

Welcome Anna...glad you found the site. It has been a great resource to me as I go through the surgery and trials of many unexpected complications.

From reading others posts, I know there are quite a few people from downstate on the forum (as well as from all over the world!!).

If you want to chat privately feel free to use the "private messaging" option to contact me also.

Becky