Questions about surgery

[crohnie2]

:ybatty:


Went into doctor and have some questions for those of you who have had surgery. I was diagnosed with Crohns a few months ago. I had a colonoscopy and dr found that colon was ulcerated and inflamed. Barium xray and CT scan confirmed a large amount of inflammation in the small intestine, and possibly also scar tissue, which I understand can only be identified as scar tissue during surgery. I was on prednisone, which dr stated did not improve my disease. I'm taking Humira now, but also may not be responding to this properly. I have to wait a few weeks and if no improvement, will have to get surgery.

My question is regarding the surgery and the use of a bag. The dr stated that the surgery will remove the 7-8 inches of diseased small intestine (and I believe a connecting area of the intestine). The dr stated that if the two parts can be connected during surgery, then it will be connected. But if there is too much scar tissue, then I will need to wear a bag for a couple-few months until the scar tissue heals and the two parts (sorry don't know all the terminology) can be connected.

I'm really worried about this surgery and how you live with a bag? Can you swim with it? Can you exercise/live a normal life with a bag? How do you actually use it? For those that had to use a bag, how long did you have it for?

Also, is it correct that the only time you would have a bag for life is if you had the entire colon removed? Is it true that you would only have the entire colon removed if you had ulcerative colitis?

I'm so glad that this forum exists! I just want my life to return to being somewhat normal soon.

 

[Nyx]

Hi! I have a permanent bag, just got it this past December. So far it hasn't impacted my life negatively at all. I swim with it, go in the hot tub, exercise...the only thing is you have to be careful to not bang it into anything (so if you have kids, tell them not to smash into it...lol). As to its use, well, you poop into it, empty it, repeat as necessary...lol

The reason mine's permanent is because everything from my stoma down to my anus is diseased. I have to go and get my rectum removed at some point in the future (they left it in just in case I wanted to resect it...which I don't). Oh, and I have Crohn's not UC. Anyone with the degree of disease I have can have their entire colon removed.

Good luck...having a bag isn't that bad I love mine!

 

[Keona]

WOW Nyx,

You have an amazing attitude! You even named it?...hehe

Wendy
________
275

 

[Claire617]

I was kinda in the same situation about a month ago as you c2, was scheduled for surgery but they wouldn't know if I'd wake up with a bag or not. Luckily I didn't and only had the part where the small and large intestine join taken out.Anyway my surgery went very straight forward out in 5 days, no infections, pain was under control quite well, I can eat quite normally now apart from a low fibre diet to help things. Was in the hospital crying the night before cus of how scared I was but you gotta do what you gotta do eh and now I don't know what I was so scared of. My friends before used to take the mick and call me the pretty little blonde princess now cus I've been through all this rubbish I tell them I'm bulletproof lol
But I gotta say it's amazing how much I'm not scared of a bag if that becomes a future prospect from reading Nyx's posts they really help, at first when they said it would be an option like a typical teenager I completely broke down and thought it was the end of the world, but i certainly have a more positive outlook on it all, so hopefully life for Nyx stays great with a stoma... no pressure there!lol
Good luck with the surgery and I hope you have the same luck that I did with it all

 

[CDDad]

I know it's all new to you but it would be good to find out the exact parts involved. Since he mentioned a "connecting area", I wonder if he is talking about your ileum. That is the part of the small bowel where it connects to the colon. Then it would make sense for a temp ileostomy if the "area" was too inflamed to reconnect to the colon right away.

As mentioned previously, some folks with Crohns get their colon removed too. (like me soon). Usually people with UC can choose an internal pouch, like a J pouch. Most times, people with Crohns will not get an internal pouch because of the high risk of Crohns inflamation moving into the pouch down the road.

Sorry this is happening to you! But hopefully they can reconnect right away if you end up needing surgery.

 

[Guest]

I'm really worried about this surgery and how you live with a bag? Can you swim with it? Can you exercise/live a normal life with a bag? How do you actually use it? For those that had to use a bag, how long did you have it for?

Also, is it correct that the only time you would have a bag for life is if you had the entire colon removed? Is it true that you would only have the entire colon removed if you had ulcerative colitis?

hi Crohnie2

sorry to hear you may be facing surgery - i'll try to answer your questions as best i can, but there's a lot us here who may be able to shed more light on things than i can...

anyway, regarding the actual surgery, your surgeon is referring to a resection, where they cut away the affected part and rejoin the two ends together. sometimes he may feel the bowel needs a rest, or like you say, things need to heal before reconnecting, so yes this is a common scenario for a temporary stoma to be formed. temporary can mean any length of time to be honest, and i would think some of that is partly the patient's choice - it may be that you want a reversal as soon as possible, or alternatively you may find you're quite happy with the stoma and want a long break before reversal surgery.

the more length of your colon that is left intact, the better... as your colon's job is to absorb water & store feces until you're ready to expel it... however reversals are still completely possible with only a little colon or rectal stump left..

the colon can be removed partly or entirely for Crohn's too... as was in my case.

re actually living with a stoma.... yes you can live normally, and take part in almost every activity you did before. exercise should be built up gently and slowly, and only started when you've had the post-op assessment and been given the ok to start exercising or swimming. really, the rule is the same for any post-surgical stomach procedure, whether it's a resection, ileostomy, or hysterectomy.... taking things slowly and gently is the key.

there are different ways that people deal with the actual bag during swimming etc.. personally i wear a 'normal' swimsuit, which is black and ruched over the tummy area. i've never had a bag come off during swimming.. i make sure it's a freshly applied one and has adhered really well. some people change to a smaller appliance before swimming, and/or wear a special 'belt' which is a bit like an elastical boobtube, over their tummy area to flatten any telltale bulges (all these things can be obtained via your stoma nurse or on prescription from your gp).

you can also wear the belts under normal clothing if you wish.

i hope this helps a bit.. if i can help further, just shout

 

[DannyboyUK]

Hi Crohnie2, sorry to hear your meds are not working too well. I had surgery when I was 17 due to my meds not working. The surgery went well and I did not need a bag. It was a scary time for me because I was young and didn't know what to expect. Following the op my health improved and I gained weight. I did find that dairy gave me abit of grief following the op though.

I am now 30 and have never looked back. Apart from the odd niggley pain here and there, I have had no flare ups in 13 years (touch wood).

I'd like to second what Claire617 says. I too was worried about the prospect of having a bag in the future but after reading several posts by Nyx I can now say that she has put my mind at rest.

Wish you all the best Crohnie2.
Dan

 

[kenny]

I also had the "connecting organ between small and large intestine removed. This is known as the Caecum or Cecum. It is located in the lower right of your abdomen and it performs a few functions.

The Ileum joins into the Cecum from the side through the Ileocecal valve.

The Appendix hangs off the bottom of the Cecum and may help to repopulate intestinal flora.

The Ascending colon joins to the top of Cecum and passes everything UP to the Transverse colon. All the intestinal goo takes a 90deg turn from lateral to vertical in the Cecum.


I had my Cecum, marginal colon, marginal ilium, both valves and the appendix removed. It is a very common surgery for crohns called an ileoceacal resection. I also did not know if I was going to wake up with a bag or not. They may have needed to put one in to let the Resection site heal before putting it under load of having to pass stool, but that was not the case. I took asacol and a highly modified diet for several weeks prior to surgery to get my gut into the best possible condition ahead of time. It was in good enough condition to put back into use right away.

Good luck Crohny. Surgery helped me feel so much better and I did get my life back

http://en.wikipedia.org/wiki/Cecum

 

[bruscar]

Hey Crohnie2,

I have had the whole lot taken away and am left with a permanent bag.

It is a hell of a lot better than the pain and suffering that i went through over and over.

In a perfect world i would love to have it removed or reversed but that is out of the question and impossible too !!!

To be honest without it i would probably be extremely ill and possibly not here at all, so for my (GUCCI) bag, well thats what my children call it. . . . i am very grateful.

Good luck with everything !!

 

[alicia]

Hey Crohnie 2, glad you found the site. I just did too isnt it so nice to have like an online 24 hr support group?! So sorry to hear about your impending bowel resection/ I had mine when I was 23 , six months after I was diagnosed after all other treatments werent working and iwas in a LOT of pain and extremely ill! My doc told me the same thing that I could possibly wake up with a pouch. When I woke up I just had 2 feet less of intestines and no bag! So you never can really know. Once i recooped from the surgery it was so nice i wasnt in constant pain and just horribly sick all the time. Thank God I haven't had a surgery since9-2001. Now after teading Nyx osts she makes the bag sound like a breeze and FREEDOM! No more" Mam, Where's the restroom? or Could you please give me the key or code to unlock the restroom? WTF??<Excuse me< Who knew bathrooms were that important or top secret! Anyways best of luck to you what is your sugery date so I can put you in my prayers?