UC - ileostomy questions

I have been reading over all the posts but still have some questions.  I am sure they are all covered but I can't read all the posts :)  Here are my questions for those of you who have had an iliostomy due to ulcerative colitis:

How long did you deal with UC symptoms before haveing surgery?

Are you glad you did it? If so, how soon after surgery did you know you did the right thing?

Can you control your BMs or do they just go in the bag anytime?  Do you know your going?

Can you put a "cap" on the end or do you have to have a bag on all the time?  Since your colon is gone do you really feel good all the time?  ( I cant imagine!)

Ive had UC for 16 yrs, but the last 8 months have been the worste.  I just started imuran and am hoping it works but want to be educated in case it doesnt.  Thanks  :)

 

TheLori, i answered your questions in yoru thread on the UC board, before i read this, and also suggested you come over here, sorry about that, i didnt' know you already had, lol.
You can sometimes feel gas come out into the bag, not from the stoma, just because it moves the bag around i guess, and soemtimes you will feel like a pinch behind your stoma, we all think it might be food forcing itself through, but it's not painful or anything, just alittle werid at first, but then you get used to it.
I answered on the other post that i feel great all the time, and i guess i shoudl have said, like Shaz did, that I feel great on the UC front, but of course i get the odd headache or whatever, but i do notice that i don't get them as much, they aren't as bad, and colds and stuff go away much faster!

Im so sick today all i can do is cry. The bleeding, pain and throwing up is bad today. Im sick of this. This morning i announced to my family that if the dr thinks i should have surgery I am ok with it. I do have a mesg in to the drs office this morning elling them things are getting worse...The last 8 months have been rough.. Thank you guys so much.. But, I havent heard ne negative thing abot an iliostomy, surely there is a negative side?

so if there is constantly "stuff" draining in to the bag does it smell? Does anyone have a reason to NOT get this surgery?

I had UC for 4 years or so before having the surgery and it was absolutely the best decision I ever made in my life.   Before the surgery I wasn't living, the disease was in 100% control of my life.  I was in the bathroom all the time in severe pain.  I couldn't go anywhere and eat for fear I would poo myself.  

The first 3 days after surgery were very painful for me, but I still felt better after the surgery than I did before.  I am a little over 6 months post op now and I feel great.  No pain, no fear, no long list of meds.  Life is good. I can go to work, out to eat, on vacation, everywhere I want and I have no fear or hesitation.  There will always be some days when you just feel bad (colds, flu, aches and pains)  but as far as the UC pain its totally gone.

I do not know when I go in the bag, thats why its worn all the time.  I do get a sensation when its full thats when I go empty ( or when I go to pee I just empty then).

I am just sorry that I waited as long as I did to have the surgery.  If I could do it over again I would have done it within the first year of the dx, instead of suffering and trying all of those medications which didn't work.  Good luck to you in your decision making. 

Blue85

I am 41 years old and had my colon removed in August after battling Crohn's/Ulcerative Colitis (I have undetermined colitis) for 16 years. I have done everything from total bowel rest for 6 weeks to prednisone, sulfasalazine, imuran, cyclosporine, enemas, remicade, over the years and in the end, no medication was working. My surgery however was more emergent than an actual thought out decision as my colon almost perforated. I can't imagine how difficult this decision is for you, and I will be honest, it's not easy in the beginning. I didn't want to look at the ileostomy or change the appliance (mostly looking at the staples), but it really does get easier over time and once you find the right appliance that you are comfortable with makes a big difference. Also finding the right pair of jeans makes you feel like you won the lottery getting out of sweat pants! I was finally comfortable and had to go in for my second surgery to form a j-pouch with a loop ileostomy and am going thru the same difficulties as I did after my first surgery. Since my first surgery I have had pneumonia, tailbone pain and rectal spasms, significant hair loss so it's not like I've felt great since the original surgery, but I was not running to the bathroom 20-30 times a day and making a mess all over myself and my bathroom! I was able to finally gain back 20 pounds of the 30 that I lost with the last flare up and eat more foods than I ever could with a diseased colon. My point is, it's not easy and we have to be patient, but once you have the surgery, you will heal and hopefully without all the nasty medicines that you've been taking. I sincerely hope that you find the support that you need to help you through this difficult time and if there are any questions that you have, feel free to ask. Good luck to you and keep us posted as to how you are doing.
Theresa

I have a bag and the surgery saved my life. I do not have UC so I cannot comment on that topic; however, a good friend of mine has an ileostomy for UC and she said she would not trade her bag for a million bucks! I hope this helps.

Lori,

I just wanted to drop in and say welcome to HW.com!  I am so glad that you found this forum and are asking the questions that you are.  What a great place to be a part of - as you have seen, we are an open and caring group of folks here.  Please feel free to ask any questions or express any of your fears.  Someone here will be able to help you sort through everything.

I have had an ileostomy for 23 years due to Crohn's Disease.  As you can see from my signature below, I have been very fortunate that my CD has been in remission since my surgery.   My symptoms in the end prior to my surgery were very much like UC symptoms, so I can say that I do know what you are going through.  Unlike you, I had to have an emergency surgery and had no clue that I would end up with a permanent ileostomy.  This was pre computer age, so no internet to research or explore options, etc.  You are so lucky to be able to find this support at your fingertips.

I am sorry you are in so much pain - I do understand and I feel for you.  Pain is so hard to deal with on a daily basis.  Please know that a lot of us here have been in your shoes.

The last thought I want to share is that each persons' experiences are individual.  I will have to admit that the first couple of weeks post surgery was quite hard for me --- emotionally as well as physically cuz I was so malnourished.  I didn't want to look at my stoma or participant in the care of it initially.  I really think that if I would have had the support of people, like on this forum, I would have done better more quickly post op.

With respect to the specific questions you have asked:

The ostomy does not smell except when you empty it. Think about it, even a normal person can have odors in the bathroom.  There are ways to minimize those smells... I personally use a product called Ostofresh and it is wonderful.  Others use Hydrogen Peroxide 2% .. even tic tacs dropped in the pouch after each empty. 

An ileostomy is active nearly all the time.  You do not have any control of it's output, like you do when you have a rectum and sphincter muscles.  Normally you don't usually even know when it is "active" except maybe right at first because it will be a new feeling to you.

The bag/pouch/appliance, whatever you wish to call it, is not noticeable under your clothing.  There are many here who wear some of the very same clothes post surgery as pre surgery.  Check out this website and actually see some of the folks you are communicating with:  photobucket.com       crohnsdisease /  6mp3asa      You will be amazed!! 

Whatever your decision is, whether it be considering surgery or continuing on the meds and treatment, I wish you the very best.  Sorry this has become such a long post --- hope I have helped you in some way.

 

Lori,
I'm so sorry you're in pain and are throwing up. I had left sided Crohn's, so I understand what you're going through, and my heart goes out to you.

I'm glad you called the doctor to tell them that you're throwing up. As you know, you can get dehydrated really fast, and you might have to go in and get some IV fluids. Do you have family nearby who can keep an eye on you?

My gastroenterologist told me that Imuran takes several months to start working. I wanted to let you know that, just in case the doctor who prescribed it to you never told you.

Please keep us posted on how you're doing.

Lori,

I'm so glad we're able to make you smile in the midst of feeling crummy. Summer is our resident comedian (even though she doesn't think she's funny). You've got to read her post about getting stoma paste all over everything while trying to change her wafer. It's hilarious!!

I'm also glad that you're open to the idea of having surgery. That's the most important first mental hurdle to overcome. Once you're there, you'll realize that there's light at the end of this dark tunnel and that you're in control of your health, not UC.

The main problem my niece had with her stoma is that the surgeon didn't pull it out far enough.  She then had to wear concave-topped bags, which meant she had to push deep around her stoma to get it to point into the bag!

So, what should have taken her pain away, actually swapped it for another pain.  She's had a year of this pain and has just had her J-pouch 'take down'. 

So - if you get to talk to your surgeon - you might like to tell him this tale (her surgeon admitted it wasn't his best work) so they take better care of how they do yours. 

Otherwise, having a bag was a far better option than the UC.

hi the lori!

iv had crohns since i was 14 i'm now25, i just had my surgery last month, so i think so far i'm the newest. Honestly, Healing Well and all the wonderful people like Shaz, Ash, SJ, Summer, Richard,Cecilia and many many more whom i cant name helped me decide to go ahead and get the surgery.

Mine is temporary, hopefully only 6months, but its no where near as bad as i thought it would be. I was like you, posting in constant pain to the point of tears. Hating my surgeon b/c he suggested that i get the surgery, i put it off for an entire year! My closet looks like a pharmacy with all the pain meds i have (good thing i dont have an addictive personality i guess).

N e way, all the steps everyone gave me were great. I havent gone back to work yet, but i'm considering going back early b/c im stir crazy. This does worry me alot, i havent had any leaks yet, and i'm afraid of the possibility of this happening at work, also i'm nervous about emptying in public. There are a few things that i wasn't prepared for b4 surgery but they were minor like:

Everyone says that you dont feel yourself going unless ur trying to pass food that was really thick or something. But its good to know that at first, right after surgery, u feel EVERYTHING. It doesnt hurt, just a really weird feeling lol.

I personally, thought i smelled myself all the time at first, but my mom has a very sensitive nose and she said she never smelled me. Sometimes (rarely) in the bathroom, if i dont spray when i empty, but thats like any one taking a poo.

Also, i'm still finding out about getting supplies. What the hospital sends u home with will not necessarily be what you need to use. Therefore, dressing in my case is still pretty much sweatsuits, b/c i just got my bags today with the air filters, hopefully this will help in the gas.

Lastly, the gas at first can be really loud. But it does go away, this was another thing i posted and asked about and everyone told me it would. You'll b expelling gas for days mayb weeks after having surgery, i guess this may depend on how u get it done. I got mine done laproscopically so there were no staples, just two tiny holes that they went in thru.

This site has been such a help to me. I hope i can be of similar help to you. Please keep us posted and let us know what u do.