Possible temp ileostomy

[KimchiiFiend]

Gonna do my best to explain my current situation. I'm typing with one hand since i'm at the hospital and the iv is in the crook of my left arm so i apologize for mistakes or the short statements.

Had a ileorectal anastamosis with no temporary ileostomy in novemer 28 last year. Healing went ok till January. Was having fevers every week and low abdominal pain. Finally went to ER at the end of Jan and had some tests done. Fistulas were found near rectum and a possible abscess was too. Given antibiotics for three days then went home. Felt good for a week...

Had a remicade treatment on Feb 14; did not feel any improvement. (i have a history with remi and i usually always felt improvement days after infusion)

My surgeon readmitted me to the hospital on the Feb 27th due to low abd. pains and reoccurring fever. CT, barium and contrast enema all confirmed multiple fistula tracts from rectum, and thickened area from a matured abscess in the area as well. Also major inflammation present, my doc said it looked like a bomb went off in my gut.

My gastro suggested a temporary ileostomy to help things cool down and heal. I'm just worried about more surgery and maybe I should consider a permanent ileostomy vs temporary. I'm kind of scared going back n forth and what damage the scarring could do on my insides whether it's done laprascopically or not. Tomorrow i'll get to talk with the my surgeon and find out the dealio.

Thanks for reading.:blush:

 

[bigtruck]

Would you be better with a colostomy ? Your situation is very similar to my own my trouble is all round the tail end, I've had an ileo then had it reversed and now I have a colostomy this is all since sept last year. I'm now recovering quite well and gradually getting my strength back and sort of becoming used to the bag, if I can be of any help please feel free to ask me anything.

 

[Goose]

Sorry you are having such a rotten time -

Had similar problems some years ago so agreed on temp ileostomy, it gave my insides time to rest and heal and I had it reversed some 2 months later. This worked very well but years later developed abscess and fistula at the site of the previous ileostomy. It's weighing up one thing against another constantly and I didn't realise at the time all the surgery I was having was storing up problems for later. I really don't think that the ileostomy was a bad decision at all though it was right for me at the time and it give me a crash course in stoma care too should I need one in the future.

My brother who has UC rather than crohns, opted for the bag and feels as though he has a new lease of life, gaining strength and positivity again. I remind him that with crohns a colostomy doesn't always mean remission!

I wish you lots of luck and positive outcome

 

[robbo87]

I had an anastomosis between my ileum and colon somewhere which didn't heal and eventually I had a temporary Ileostomy, Ive now had the temp ileostomy for about 7 months and hopefully going to be reversed in the summer.

I was told the same as you, have a temp ileostomy and give it all time to heal etc , so far things are going well for me, both times ive been operated on was open surgery and it will be the same for my reversal, I can understand why you're concerned, and it is a big decision but i'd be inclined to see what your surgeon thinks is best.

 

[2thFairy]

You have a good point about not wanting the risk of adhesions, etc., with additional surgeries, but I would opt for the temp ileostomy first and see how it goes. That way you might have the option of reversal at some point. You might end up needed a permanent ileostomy in the future, but you would know at that point that you had tried everything else first.

 

[KimchiiFiend]

Wow, it's been a long 3 days since the last post. Time passes more slowly in a hospital bed I guess.

BigTruck- I should have mentioned that my colon is gone so unfortunately a colostomy is out of the question.

Robbo87- A quick question for you, did your dr mention anything about having less control of your spinctre(sp?) muscles since your not using them for several months?

In any case, I talked with my surgeon and GI and we all agree that a diverting loop ileostomy is best/appropriate for my situation. I was going to see if they would release me to go home for a week since I've been going craaaazy here but now I'm thinking since I'm here and in pretty decent shape I should just schedule for it asap assuming he could even get me in. Well, I guess I'll be posting on this subforum more, so nice to meet cha!

 

[giftedbyadoption]

Wow, it's been a long 3 days since the last post. Time passes more slowly in a hospital bed I guess.

BigTruck- I should have mentioned that my colon is gone so unfortunately a colostomy is out of the question.

Robbo87- A quick question for you, did your dr mention anything about having less control of your spinctre(sp?) muscles since your not using them for several months?

In any case, I talked with my surgeon and GI and we all agree that a diverting loop ileostomy is best/appropriate for my situation. I was going to see if they would release me to go home for a week since I've been going craaaazy here but now I'm thinking since I'm here and in pretty decent shape I should just schedule for it asap assuming he could even get me in. Well, I guess I'll be posting on this subforum more, so nice to meet cha!

I have a ileostomy did they tell you that when its reversed you will go to the bath room 10-20 times a day?... once your colon is gone you are reconnected to the small intestines there for you will have LOTS of bath room trips with out a pouch I chose for a permanent one due to I lived my life in the bath room enough before my surgery..... I wont say its easy to get use to but I cant imagine going to the bath room all the time like that. I am curious IF you have no colon how do you not all ready have bath room trips all the time all ready are you reconnected to your small intestines now?

 

[KimchiiFiend]

YES!! The first few weeks after my ileorectal anastamosis (what a mouthful whew!)I was going to the bathroom like every hour! At night time I was having accidents and blaah it was horrible. It eventually slowed down for a little while to where I could hold it a few hours in between but I wasn't eating much food either. Then i started flaring and the frequency increased again.

 

[giftedbyadoption]

YES!! The first few weeks after my ileorectal anastamosis (what a mouthful whew!)I was going to the bathroom like every hour! At night time I was having accidents and blaah it was horrible. It eventually slowed down for a little while to where I could hold it a few hours in between but I wasn't eating much food either. Then i started flaring and the frequency increased again.

But did they tell you it will STAY this way with out a pouch??... read up on it talk to others who have it reversed, my one aunt had hers reversed my granny only lost part of her colon and she never could go out to eat EVER again she ran to the bathroom AS SOON as she ate it was so awful

Just want you to have whats best for quality of life its crazy to keep operating over and over

 

[2thFairy]

I have not yet had my reversal, but I have been told by a few who have a J-pouch that after about a year the trips to the bathroom go down to about 4-5 a day...and with no urgency.

 

[moogie]

I had temporary Ileostomy too a few years back. Needed to let my stiches heal on my colon before I let anything in there.,

I had it for 6 months and I went back to normal after wards. Personally I want to stay away from the bag for as long as possible. So personally I would go for the temporary one. If your not loosing your entire colon I don't see why a permanent one would be necessary.

But that's just my opinion.

Good luck to you

 

[giftedbyadoption]

I had temporary Ileostomy too a few years back. Needed to let my stiches heal on my colon before I let anything in there.,

I had it for 6 months and I went back to normal after wards. Personally I want to stay away from the bag for as long as possible. So personally I would go for the temporary one. If your not loosing your entire colon I don't see why a permanent one would be necessary.

But that's just my opinion.

Good luck to you

This is TRUE with people WITH a colon NOT with ones like us who lose theirs though

 

[giftedbyadoption]

I have not yet had my reversal, but I have been told by a few who have a J-pouch that after about a year the trips to the bathroom go down to about 4-5 a day...and with no urgency.

I hope it works for you!!!
My poor granny had only lost a foot of her colon and went every hour and had terrible urgency's and accidents and never ate well again.

This is why I chose to keep my new friends Road Runner for life....
Do you have a colon left at all? Or did you lose yours as well?

Good luck on your reversal. I would be curious to see a post/study on how many people are HAPPY and eat well and have little bath room rips with the reversal?

 

[Nyx]

Just wanted to add that I have 2/3 of my colon and have a permanent colostomy. So, a permanent stoma is not just for people who lose their entire colon.

 

[2thFairy]

I have had my entire colon removed and J-pouch formed out of small intestine and connected to the rectum, though still healing from surgery and currently have an ileostomy.

 

[2thFairy]

I would be curious to see a post/study on how many people are HAPPY and eat well and have little bath room rips with the reversal?

http://www.j-pouch.org/

Here is a whole group of people either waiting for reversal or have had reversal with a J-pouch. Good, bad, eating tips, all sorts of advice and support.

 

[giftedbyadoption]

http://www.j-pouch.org/

Here is a whole group of people either waiting for reversal or have had reversal with a J-pouch. Good, bad, eating tips, all sorts of advice and support.

OH I know there are people WAITING and who have them.... I am just saying its not what you think after you do thats all. With OUT your colon. Just make sure the people you compare with do NOT have a colon like your self. You can not be reconnected to the small intestines or rectum and expect to have a large wait time after you eat meals and such until time to got to the bath room.
As my surgeon said just make sure there is a bath room close buy where ever you go and if you are comfortable with that its FINE

 

[robbo87]

Robbo87- A quick question for you, did your dr mention anything about having less control of your spinctre(sp?) muscles since your not using them for several months?

In any case, I talked with my surgeon and GI and we all agree that a diverting loop ileostomy is best/appropriate for my situation. I was going to see if they would release me to go home for a week since I've been going craaaazy here but now I'm thinking since I'm here and in pretty decent shape I should just schedule for it asap assuming he could even get me in. Well, I guess I'll be posting on this subforum more, so nice to meet cha!

sorry for my late reply!... My surgeon didn't discuss this with me tbh but I would imagine at first things may be a little hard but as i understand it, When mine is reversed there'll be a good bit of colon left so I would have thought i'd be in a different situation to people who have no colon and have a j pouch etc

 

[KimchiiFiend]

But did they tell you it will STAY this way with out a pouch??... read up on it talk to others who have it reversed, my one aunt had hers reversed my granny only lost part of her colon and she never could go out to eat EVER again she ran to the bathroom AS SOON as she ate it was so awful

Just want you to have whats best for quality of life its crazy to keep operating over and over

Sorry to hear bout your grams troubles. How long has it been since her reversal? Has she found any medications or supplements that will help slow her output?

The comments on this site I've read regarding peoples BM after partial or total colectomys with re-sectioning seem to vary from 4 -13 more or less. But for some people it's a vast improvement from having to go 20 times a day! I'm fortunate that I wasn't going that frequent pre-op.

Thank you for your concern tho. I too want a better quality of life with the minimum amount of surgery needed. It's kinda scary not knowing if your really making the right decision.