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ileostomy rehook help

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Posted 4/4/2017 2:34 AM (GMT 0)
ok i had a ileostomy about 4 months ago. i went to the er with the worst gut pain ive ever experinced or should i say the worst pain ive ever experinced. my dr did a couple tests and said i needed emercency surgery my large intestine choked off and was dying inside me so two surgerys in two days and no more large intestine. the whole thing now gone my bag in place and alive after 16 days in the hospital. home for 4 months trying to get used to my new reality. i am 6 foot 7 was 225 and am now 195 dont want t eat much but im learning. now we are talking about a rehook in a month, i read all the posts and have t ask as watery as my stool in the bag is can someone explain after the surgery i here people say i lost wieght after the rehook. i cant afford to loose more wieght. so in genral if a guy is healthy with no colon or bowl problems when they rehook what do i really have to expect after. i understand right after ill have to adjust to it. but the one to two months in worrys me i was a very active guy and now nope. i dont want pie in the sky stuff i get that from the doc. i want your help cuz it seems like a good site with great advice. heck you guys taught me how to eat now. for me this whole thing sucks but i am alive. someone give me real advice on what to expect please . i also am limited on things to eat and drink due to kidney and liver dammage from the massive hard antibiotics the ones that save me. how ironic
Posted 4/4/2017 5:21 PM (GMT 0)
I'm guessing you have a J Pouch?
Posted 4/4/2017 6:23 PM (GMT 0)
I have all my colon and rectum it worked great the only thing removed was all my large intestine . so a good rehook is a real possibility am just worried about after, with no large intestine how it is after the first month or two has anyone had this type of procedure. I'm glad it was only my large intestine and the rest is healthybefore and after the intestine
Posted 4/5/2017 2:14 PM (GMT 0)
I'm still trying to understand, you said you have all of your colon and rectum but what was removed was all of your large intestine. The large intestine is the colon. The ascending, transverse, descending and sigmoid colon make up the large intestine. The small intestine connects to the large intestine / colon. I had my large intestine / colon removed, I had a J Pouch created out of my small intestine and surgically connected to what they left of rectum which was about 2cm. After a few months my bag was removed and the small intestine was connected to the J Pouch created during surgery.

This is a diagram of what a J Pouch is, there is no large intestine / colon...

https://sobadass.files.wordpress.com/2014/03/j-pouch.jpg?w=440&h=300&crop=1

Post Edited (blksteeda) : 4/5/2017 8:18:48 AM (GMT-6)

Posted 4/5/2017 3:13 PM (GMT 0)
your right my my bad lol. its a lot t fill my brain with in a short time . the large intestine is gone and ya its also called a colon. they removed it and gave me my very own stoma . then that part of the procedure ileostomy I think . the rectum is still there and fine. do they sew the thing shut. I guess theres enough to hook to because he said it should do well on the rehook . its a lot t deal with coming from out of the blue.however I see a lot of pros with a rehook I'm wondering with the bag it seems I have a lot more freedom of movement . from all accounts ill be using the bathroom maybe 6 times a day and it seems tied to noing the location of the nearest bathroom . with the bag its twice a day change and deal with the hanging bag. it just came to me I am almost positive he call mine a end ileostomy. anyway I'm just trying to find someone who may have info on after surgery life ,after the healing of course . I'm still a active guy and would like to remain so , in some form anyway . its a lot to process. and I'm thinking the removal process was called a total colectomy . ok there it is I hope it makes more scents now thanks.
Posted 4/5/2017 4:35 PM (GMT 0)
you'll have a couple options, you can opt for a permanent end Illeostomy or in order to connect to your rectum again you'll need a J Pouch created as many on this site have. It's shown in the diagram in my post above. I've not heard of a J Pouch connected to a full rectum before, that would be a question for your surgeon exactly how they intend to connect if you go that route. Since you have no colon to store stool anymore, the J Pouch acts as a "holding" area for stool until you can empty the pouch through your rectum. Some people opt to keep the bag and have their rectum sewn shut. I wanted things to be as "normal" as possible so I went with a J Pouch, having a life long ostomy wasn't for me. When I had my bag I could go 5-7 days without changing the appliance but I didn't want to have to keep worrying about supplies etc. I also had horrendous itching / burning on occasion below the wafer that drove me nuts. During my whole surgical process I had lost 40 pounds and I was down to 130. My surgery was due to Ulcerative Colitis. Now currently, I'm the heaviest I have ever been in my life at 180. The majority of your nutrition is absorbed through the small intestine, by having no colon that's where most fluids were absorbed back into your body so you have to stay on top of hydration. I'm very active since I've healed from surgery

Post Edited (blksteeda) : 4/5/2017 10:42:06 AM (GMT-6)

Posted 4/5/2017 4:40 PM (GMT 0)
also, I no longer need to know where the nearest bathrooms are anymore, I can hold my pouch for quite some time before I need to empty. Usually when I urinate I empty it anyway. I'm a guy and I can no longer urinate standing up, it seems the same muscles that control urination control the emptying of the pouch. It hasn't been a big deal at all
Posted 4/5/2017 6:03 PM (GMT 0)
thank you I to to hate the itching and stuff that goes along with wafers and bag. id like t find a new normal whatever that is and I'm more leaning to rehook .its funny "ironic" that I had a bowl resection due to diverticulitus 2 years ago it went flawless and had two great years with not one problem. then this . the cause is still not none may be a small blood clot but they could not tell they did say it had nothing to due with the resection. anyway I'm going to think, read , and take advise, then decide . I don't like the bag I no this my wife of 27 years passed away 5 months before this she was my sounding board. and I have time but is it better to rehook sooner rather then later I wonder. and the j pouch and rehook is that one or two surgerys I don't no this . truthfully I would like to use the toilet and get the bag gone. and my self conscious nature dosnt help either . I welcome any advice from any member on this and do thank you for yours. I was going to move to belize in 1 1/2 years and would like to still, but now its all up in the air for me. and supplies in belize might be hard to come by. just in case belize is next to gutamala and mexico on the Yucatan. thanks for the response once again
Posted 4/5/2017 11:08 PM (GMT 0)
you have to look at your quality of life to help make your decision, mine was terrible so it was easy for me to decide to have surgery to remove my colon. I did mine in a two step surgery. The first surgery they removed my colon and created my J Pouch and gave me a temporary loop Ileostomy. After about 4 months giving the J Pouch time to heal I had my take-down surgery and the bag was gone. If you get a J Pouch you will more than likely have your bag another 3-4 months. I have heard of the Pouch being created and connected at the same time but not sure how often that is done.
Posted 4/6/2017 12:10 AM (GMT 0)
well I'm talking to my doc tomorrow . because mine was a emergency surgery they took almost all except near the rectum and sigmoid I don't no if any part of that can be used in place of a j pouch or not and I guess it will be two surgeries in my future then unless it can be used. wow this thing for me will be a 4 surgery total. 1 colon died, 2 stoma turned black, 3 and 4 still to come I'm a upbeat guy but this crap can where on ya. ill get threw it got a great doc #1 in our area and I'm glad for that. think about this in less then 2 years ive had a resection, colectomy, ileostomy stoma redo, and still 2 to come. in the last 2 months since returning home pills don't agree with me so I went got a recommendation for marijuana and it helps more then any of the prescribed narcotics. it just never appealed to me until this,so I think I'm going to smoke some and enjoy the side effects. unlike the pills. and by the end I hope to quit. but it works so well with the appetite and to me this is the worst part. when its done, all done does that part correct with time too . thanks for your incite in all this it helps people like myself a lot.
Posted 4/6/2017 1:32 AM (GMT 0)
and I just found out if you have a in tact healthy rectum that the j pouch is not needed. most symptoms after are the same after surgery and I hope that with some of my sigmoid still viable it makes it even better. ill find out from the doc tomorrow but if it is so one surgery instead of two yaa. not looking forward to after but that's a small price to pay. and I already practice all the eating habits now so that will help after too. and I can prepare for this, unlike the emergency that started all this for me .
Posted 4/6/2017 1:36 AM (GMT 0)
if you ultimately go for a J Pouch, a good bit of advice is find a surgeon that has done many of them, the procedure is quite involved and a good colorectal surgeon experienced in J Pouches will be your best friend.
I've been through quite a lot, a large bowel resection, open surgery for colon removal / j pouch surgery, infected abscess after surgery, blood clot in my neck due to a PICC line, re infected abscess, open surgery again to find a leak in my J Pouch causing the infected abscess and finally my takedown surgery. It can be a bumpy road but wouldn't of changed my mind about doing it again
Posted 4/6/2017 4:01 AM (GMT 0)
You should do great with your original rectum and sigmoid. You shouldn't have too many problems eating as you like and keeping weight on I don't think. I do quite well with my jpouch and that's much bigger change than keeping your rectum - since the rectum has always been a stool container. With a jpouch, they have made the end of your small intestine, into a rectum. You will do great. Best of luck smile
Posted 4/6/2017 6:54 PM (GMT 0)
just got back from the dr visit. he said because all the circulation loss was from the top of the sigmoid colon on back to the small intestine and the circulation and health of the rectum and sigmoid left was very good a rehook for me will work great. and the sigmoid that's left I guess is my pouch as it were, and its all there so yaa for me I guess. hurry up june-july. this sounds so much ezer then a j pouch. and hopefully the recovery is better to. I wonder if anyone has had this type of rehook . my first good news since this happened.
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