New to ostomy.....preparing for it....many questions...

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pain-in-the-butt
Regular Member


Date Joined Apr 2011
Total Posts : 52
   Posted 6/20/2011 7:58 PM (GMT -6)   
Hi everybody im a 35 year old male. i have had severe crohns colitis for about a year and my doc is finally recomending a permanent ileostomy. my rectum is severly strictured and remicade is not doing the desired job. my stomach has never had any pain, I am on my 2nd perinanal abcess and already had a fistula with seton put in. that was the worst...my diareaha has stopped and im having great improvements in going only 1 to 5 times a day. My questions for all you ostomy folks out there is......
 
 How has your quality of life changed?
 Has there been any discomfort with the bag?
 How long does it take to get used to it there?
 How quik does the bag fill?
 Any leakage issues?
 
I know ill be on here more and more but these were just some of the Qs that were running through my head. Thanks...

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/20/2011 8:14 PM (GMT -6)   
my quality of life has changed tons! Its so much better! i get to go places and do things whenever and wherever, just got back from disney actually.

there isnt really any discomfort, it hurts after surgery of course, but it doesnt hurt for long.

it took me a few weeks to get used to it, and then after a while i started to forget about it at times. half the time now i don't even remember its there.

how quick it fills will depend on what you eat and how much you eat.

you will probably have some leaks at first, it's a big learning curve. but once you get your system down, you should be good!

Good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 6/20/2011 8:15 PM (GMT -6)   
H p-i-b, sorry you're having such a hard time, although it sounds like you've been getting better. I also had a crohn's colitis diagnosis going into surgery, although the docs were never sure, now it looks like it might be UC .... but I've had abscesses and other skin complications (not fistulas, though), definitely no fun at all.

Here are some thoughts on your questions:

How has your quality of life changed?

It's a lot better. I was so, so sick, and now I have more energy, can do more things, eat more things etc. I didn't realize just how sick I was, as the last four years have just gotten worse and worse.... been so long since I felt good (and I'm not even healed all the way yet, have a complication in the butt wound) Everyone who sees me thinks I look so much better than I did, and I'm reconnecting with old friends that I was too tired to see, going on trips, etc.

Has there been any discomfort with the bag?

Not too much. I've had a few little skin issues that haven't been too bad, and there's definitely a learning curve for learning to change it, finding products that work, etc.

How long does it take to get used to it there?

I think this varies between people, but it didn't take me that long, maybe a week or two.

How quik does the bag fill?

Depends on what I eat, how much I drink etc. At the beginning it fills more quickly, but I'm told that the small intestine eventually learns to absorb more fluid and function more like a colon. At the beginning you have to eat only low residue food, and that fills more quickly for me than some of the higher fiber food I'm starting to eat now.

I generally empty once in the night, then once or twice in the morning, then it's quiet til mid or late afternoon .... in the evening I need to empty several times. This is different for different people... you can also get more control of it with immodium or lomotil if you're doing something where you don't want to have to empty.

Any leakage issues?

Yes, a few. I had some trouble for a while because my belly was getting a little rounder, and the pouch didn't stick as well. My nurse helped me find a better pouch. There are some things called sure seals that I learned about from this list -- they are kind of like the tegaderm they use on IVs.... clear sticky material that goes around the wafer, and can help hold it down.... if there is a leak, they can keep it in so you don't get poop all over you.

Definitely a downside, I think most everyone has some leaking issues at least at first.... but it's nothing compared to being so sick and having to run to the bathroom all the time. It's so amazing to be out and about and realize that the bag is filling, but I can actually wait until I get home to empty it.

Feel free to ask more questions -- this list is an amazing resource.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 6/20/2011 8:37 PM (GMT -6)   
I have UC and not Crohn's, but I am completely happy with my permanent ileostomy. My quality of life is so much better. I had a lot of pain and fatigue with my UC, which is now completely gone. I have so much energy now. Not to mention no more bleeding, urgency or frequency. I was so sick and weak after my final flare and had such painful side effects from Remicade that I was excited for my surgery.

There is a learning curve with the appliance. It took me about 8 weeks to get used to it and get the hang of the changes down. Now I forget it is there most of the time. There is no discomfort. I can feel when my stoma is outputting which takes some getting used to, but it is not uncomfortable. My pouch and stoma has not stopped me from doing anything yet... except that I have had to wait to do certain sports until my body is healed up and ready. You do have to prepare with your supplies (for instance if you are traveling) which takes some planning. But you get used to this and learn what you need to bring along.

After surgery, I had to empty frequently... about 8 times a day and my output was very liquidy. Eventually, the small intestine adapts. For me, this made things more of an applesauce consistency and reduced my emptying frequency to about 6 times a day. This isn't always evenly spaced for me. My output tends to be most frequent from noon to 10 p.m. Lately I have been lucky and my pattern has allowed me to not have to empty overnight, but sometimes I will have to empty once or twice during the night. I kind of keep tabs on my pouch when I sleep. I will groggily wake up for a minute and feel it with my hand. I can tell if I need to empty it or not. If I do, I get up, take care of it and crawl back to bed and go to sleep. I am a good sleeper so it isn't an issue.

The bag fills at different rates depending on what I eat, but there is rarely urgency. I will notice it is filling up and can usually wait an hour to take care of it. Most people empty when the bag is 1/3 full, so it is never completely bursting at the seams. You have some leeway.

I am lucky in that I have no leakage issues. In 7 months, I have had only one leak where stool seeped all the way under my wafer, but this was because the adhesive was compromised due to incision wound drainage. I think the main reason I have no leaks is that my stoma is not flush and does not ever retract. It is 1.25 inches tall. One of the best pieces of advice my GI nurse gave me was to not let my surgeon give me a flush stoma. Flush stomas can more easily pump stool under the wafer. I actually checked in with my surgeon on this right before being wheeled off for surgery. He laughed and said he would not give me a flush stoma and that he made them all stick out some. And he did. I LOVE my stoma. Not only is it not flush, it points towards the bottom of the pouch a bit. Other leak issues are caused by creases or folds in the skin near the stoma. Make sure you get a good stoma placement with a stoma nurse.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 6/20/2011 8:41 PM (GMT -6)   
PITB
Someone else asked that question a while back. My answer was something like this....First you will forget where all the public rest rooms are. Second you will delight in passing rest stops on the expressway and car trips won't take as long without all the rest room stops. You will find that you can go wherever you want whenever you want. But it's not all peaches and cream. You will have leaks and blowouts. By trial and error and help from this forum you will figure out what to do. You will have ulcers around your stoma but with wocn's and this forum you will fix it. It may take some time to get everything working properly but it is worth it. Your "quality of life" will get back to before crohns.

Dan

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/21/2011 6:30 PM (GMT -6)   
I'm just going to 'ditto' the above!! And add:

I cannot believe I lived for more then 8 years with multiple fistulas AND setons:( I had an ileo during that time and while I didn't have to run to the bathroom I was miserable. Having a proctocolectomy was the best thing I ever did (besides having my daughter, lol!).

Keep the questions coming...it makes the transition A LOT easier:)
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/21/2011 7:36 PM (GMT -6)   
Welcome, Pain-in-the-butt, what a perfect name for what you're going through. I've been there with the Crohn's, fistulas, abscesses, and setons and can't believe I put up with it for 7 years before having surgery.
To answer your questions...

How has your quality of life changed? It's amazing now to have my health back 100%. I don't have active Crohn's anymore and don't have to take medicine or see doctors. Life with an ostomy is good. :-)

Has there been any discomfort with the bag? Sometimes my skin gets itchy under the wafer, but that only happens when it's time to change the wafer, which for me is only once a week. Once I have a new wafer on, it doesn't itch anymore. Otherwise, there's no discomfort at all.

How long does it take to get used to it there? The first couple of weeks is a learning curve, and then it becomes so natural that you'll forget it's there, except when it's time to empty, which is only after meals.

How quick does the bag fill? It depends on how much I eat. Mine always fills up at night while I'm sleeping, but isn't very active during the day.

Any leakage issues? I've been very fortunate that I've never had a leak in public. The only leak I've ever had was one time overnight, but that was my fault, because I tried to push one more day out of the wafer.

I'm glad you found us here and are asking questions. It sucks to have Crohn's, but thankfully, surgery will give you your life back. Good luck and keep us posted on how things are going.
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/22/2011 1:42 AM (GMT -6)   
DItto (LIKE) on the comments above. Do be sure to ask any questions you may have. We are a knowledgeable bunch of folks who have been thru it and know from experience. Welcome aboard HW!
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.
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