Crohn's with an ileostomy

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It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/1/2009 11:16 PM (GMT -7)   
Hi all just a question..or perhaps a few. I have Crohn's disease and recently had a bad flare that led to me having an ileostomy put in early in August. The hope is that while my colon is on "vacation" it will heal up and go into remission and then they can reattach everything and take my bag away. My main question is does anyone here have or know of anything specific I should or could eat to make digestion easier with the bag? What empties into the bag is not very runny or anything like that it just seems to go sort of non-stop. Are there certain foods or products I should eat or avoid that can maybe make it stop or help me know when I may be filling it up? Only had this thing for a month so I may not have worded that as intelligibly as I could have. Thanks for any help :) Also...I was very active before this flare and subsequent surgery. I'm a firefighter , worked out alot , swam , and practice martial arts. This is supposed to be temporary , as I mentioned above .But if not and I have this bag on me forever can I expect to be able to be swimming again , what about fighting? I know there are restrictions on straining and lifting weights and etc... but general activity-wise...what am I gonna be able to do if this thing has to stay?
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 9/2/2009 3:14 AM (GMT -7)   
Hi There and welcome,
I too have'nt been an ostomate for long I had an ileostomy done in early March and about 4 weeks ago had a proctocolectomy (rectal stump removed) so mine is now permanent. I have had crohns/colitis for over 21 years and believe me this is the best thing that has happened to me as the pain I endured with this lousy disease was too much to bare. There is absolutely nothing you cant do so I have been told and heard from other people with ileostomies. Although I have'nt been swimming yet apparently thats fine too. I was also told I could now eat anything but to make sure I chewed it well and so far have been doing that and had no problems with my ileostomy, but a couple of things they say are worth steering clear of are corn and popcorn as they can lead to a blockage. If you want to thicken your output try some benefibre or metamucil as well as those products things like rice, pasta, potatoes and those types of things will thicken it up and the amounts of times you need to empty over time decreases. I hope I was of some help. There will be others along to give their advice as well. Take care and keep us posted, I also hope it all works out for u

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 9/2/2009 8:31 AM (GMT -7)   
firemedic--I am also a Crohn's patient with an ileostomy. Like andorable, mine is permanent. I started with a temporary ileo 10 years ago and chose to have a proctocolectomy in Feb 2008.

As you can guess, I found life as a Crohnie more manageable with an ostomy! I haven't been restricted from doing anything I've wanted to do. I do workout, but don't do a lot of heavy abdominal exercises, swim (pool/ocean) and just about any other sport I feel like...as far as firefighting, that may have to be approved through your organization, not sure about that.

Ileostomies are pretty much active all the time (or can be). It depends on what and how much you eat. I don't restrict anything from my diet, but foods I might question are done in small quantities and I chew well...I even allowed myself two ears of corn this summer (different meals!) and enjoyed every kernel smilewinkgrin It can be individual but it is worth trying something once to see how your body responds.

You can use different foods to thicken or any of the fiber supplements...I prefer the psyllium capsules...and you could always use immodium. Sometimes I use all the above and sometimes I don't, I think it just depends on what I am doing. Just remember you don't have to take the recommended amounts and you may have to fool with the amounts until you know what your body needs.

Just remember to stay hydrated.

Let us know if you have more questions!!

It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/2/2009 12:50 PM (GMT -7)   
Cool that was pretty helpful thanks to both. I know I can't do the firefighting with this thing if it has to stay but I can move into HQ if it comes to that. not what I want to do but better then having to find a new job and what not. Anyone around with any knowledge of martial arts , specifically Brazilian Jiu-Jitsu , know if that sort of activity can be done safely with an ostomy? That's the art I train in and would really really hate to have top give it up. Thanks again for the help everyone :)
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


justjenjen
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Date Joined Nov 2003
Total Posts : 518
   Posted 9/2/2009 1:06 PM (GMT -7)   
I was told if I wanted to be in any type of contact sport that I need to use a special kind of protector. I've never been in any type of sport like that so I don't have any more info to go on. Truly though, it should not hinder you in any way.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/2/2009 5:14 PM (GMT -7)   
i dont think it would keep you from doing the martial arts. They make things sort of like cups or you could just put some padding on your stomach there.
I know its not the same, but i do some really rough wrestling with my guy friends and they dont treat me like a girl, lol. And I have a 4 year old too and two other little boys running around here and have taken some blows to that area, and so far ive survived.
Although i know its not the same thing.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 9/2/2009 5:25 PM (GMT -7)   
I had a friend with an ileostomy who was part of the San Diego Fire Department and was part of the Urban Search and Rescue team deployed to look after the Olympic Games in Atlanta so there's no reason to give up your job. Unfortunately, I've lost touch with him over the years. Mike also won Convatec's Great Comeback Award in 1998 and you can read his story at http://www.greatcomebacks.com/en/stories/nash.shtml

I also have an ileostomate friend who's just one belt away from her black belt in Tai Kwon Do. She wears a stoma protector while participating.

You CAN do it :)


Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/2/2009 10:23 PM (GMT -7)   
Holy crap Shaz that is about the best news I've heard yet. I mean naturally I want this thing reversed but I'm just trying to prepare myself for the worst just in case. Thanks alot for the link and the examples...you too summerstorm. I didn't really realize there were "cups" or whatever sort of protective things made to wear during contact sports for these things. I also was concerned about straining and having it tear or something but I suppose maybe the body builds up to compensate that area or something. I was wondering something else about the ostomy or , more specifically , the "vacationing colon" . When I go there is just the mucus normally but sometimes there's a bit of blood...not runny like before the surgery but just maybe a bit in the mucus and on the toilet paper. Is this normal or no? I get kind of discouraged at seeing that and the very very slight discomfort I feel when I do have to go that maybe it's not healing. It by no means really hurts when I feel the need it's more just like a forceful pressure . But does anyone think that coupled with the small amounts of blood coming with the mucus might mean I'm not healing? or is that just normal standard one month post ostomy stuff? And again..thanks for all the help and the answers this thing just freaks me out about having to change and drop all the stuff I like doing. I appreciate all the help alot...sorry if I'm beating the dead horse too much. :)
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 9/3/2009 5:48 AM (GMT -7)   
Normal...It changes sometimes and can even have stool in it since you have a temporary loop ileo.

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 9/3/2009 6:58 AM (GMT -7)   
I actually visited Mike and his wife, Michelle and their 3 kids when I went to the USA approx 9 years ago - they showed me all around San Diego and I got to ride in his firetruck lol My fav pic of San Diego is a pic of me and Mike in a roller coaster.
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 9/3/2009 10:09 AM (GMT -7)   
Hi Firemedic like yourself i have a temp stoma since Jan 09 due to crohns (getting it reversed in Nov ) mine also seems to be going non stop  the most important advise i can give you is to make sure you drink plenty to keep you hydrated i have ended up in hossy on IV fluids because of dehydration. As for sport i swim now 3 times a week i empty the bag first and swim for about an hour with no probs of leaking or bag coming off  i don't even change it so you should be fine swimming take care Bev x  smilewinkgrin   smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 9/3/2009 6:09 PM (GMT -7)   
Hi Firemedic and welcome,

I have had an ileostomy for 3 years and can do so much more now than I could when I was sick, because I'm healthy and have tons of energy. I live in Florida, so I swim a lot (in the ocean, the pool, and at water parks) and have never had a problem.

It's normal for your ostomy to be active in the beginning, but it does slow down. In addition to eating foods that bulk (bread, pasta, potatoes, rice, bananas, and peanut butter), you can also to take a few Imodium before each meal to see if that helps.

I've also heard about hard protective stoma caps, but have never used one. It seems like it would protect it while doing martial arts, sort of like a mini sports cup! :-)

I also started with a temporary ileostomy to let my colon rest and possibly heal, but after 8 months, I started bleeding, so I decided to have a proctocolectomy and make my ileo permanent. I've been very happy with the results and love not being sick anymore!

Good luck to you!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/3/2009 10:09 PM (GMT -7)   
You guys are making me feel way better about this thing thanks. I'm relieved to hear it's normal to have the going pains and mucus/blood business. And the "cup" thing I had never heard of that's really cool. Also shaz...is there anyway you could possibly give me that Mike guy's email? I know that's personal info and totally understand if not. But maybe , if you're still in contact with him you could ask him about it because I'm sure there's stuff I could ask him specific to our job. I had kind of become resigned to having to move into HQ if this thing had to be permanent. In addition to missing the job itself I'd really hate going from 24/48 to a 9-5 schedule lol..spoiled as I have become y'know? :) Again I understand if not but thought I'd check. Thanks alot you guys..really this stuff is great to hear...er see
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/3/2009 10:15 PM (GMT -7)   
One more thing...sorry but I just seem to keep coming up with more stuff as I read more of your replies. Mainly to crohnielass and flchurchlady since you two said you swim alot. I saw on a website where I ordered some of those bands for exercising they also had a swim-belt thing. Is that all you wear? It says it's made of swimsuit material but it seems to me water would get right in under it and soak my ostomy and bag and what not. Is there something else you to do keep it dry or no? Again , I know this is inexperince , but I was swimming alot before all this and can't imagine the skin prep or paste not just totally disintegrating in the pool.
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 9/4/2009 7:42 PM (GMT -7)   
Firemedic, I've lost touch with him now but I'll put a general call out to all my ostomate friends on Facebook and hopefully, one of them will know how to contact him for us :)
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/4/2009 9:18 PM (GMT -7)   
Very cool thanks :)
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


Chasblah
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Date Joined Feb 2007
Total Posts : 788
   Posted 9/4/2009 9:32 PM (GMT -7)   
Firemedic,

I swim all the time. I don't wear anything over my appliance, except the suit of course.
It gets wet, but then it dries. The wafer will still stay on wet. I usually wait until I'm dry to leave anyway, so my car seat doesn't get soaked, and then the bag is mostly dry too. If you want, you could just change the bag after you are done.

The only thing I would recommend to wear over the wafer is a sure seal. They are small, but mighty. They keep the wafer dry.

I was soooo worried about swimming. I love to swim and love water parks, so i just couldn't imagine giving it up. I didn't have to. Nobody can tell I have the bag. My swim suit has a bright pattern on it. Men are lucky to be able to wear shorts.
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/5/2009 8:53 AM (GMT -7)   
Firemedic,

I don't cover my wafer or pouch while showering or swimming, and in 3+ years, it has never come loose. I wear the Coloplast Assura Extended Wear wafer (item #2833) with matching EasiClose cloth covered pouch (item #13986). It's like the Energizer Bunny, because it lasts and lasts and lasts!! I change my wafer only once a week. smilewinkgrin

I've tried others, but they do not stick nearly as well for me. I also exercise and sweat, and it still stays on! The wafer has a built-in skin barrier, so I don't put anything on my skin except a little bit of Stomahesive Paste around the stoma.

I'm glad we're making you feel better about this, because it shouldn't slow you down one bit! :-)

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


It's in the bag
Regular Member


Date Joined Aug 2007
Total Posts : 122
   Posted 9/5/2009 11:42 PM (GMT -7)   
Wow thanks..I'm really suprised to hear that it stands up to water and sweat so well. I just got a bike today and am starting to ride and , of course , in Florida merely walking outside can make you drenched so I'm glad to hear that. And ya'll are helping tremendously...I go on the 29th of this month for my scope to see if things have healed enough to reverse but I'm trying to prepare myself for the possibility otherwise just in case. The information I've gotten just from this one thread series has been really positive so thanks all again.
Asacol 400mg x 8 dly , 50 mg Mercaptapurine x 2 dly , 20 mg Omeprazole x1 dly , Remicade every 8 weeks , Multivitamin , Fish Oil , Currently living ileostomy bag-style , Align


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 9/6/2009 5:55 AM (GMT -7)   
Hi i don't wear a belt or anything if i have really watery output i will put a couple of safe seals round the flange for extra sercurity but never had a problem enjoy your swimming again. once you have done it once and it goes all ok that will build your confidence and you won't worry as much good luck Bev x

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 9/6/2009 2:44 PM (GMT -7)   
I'll never forget the first time I went swimming. I was in the pool with my nieces and nephews for about 2 hours and thought for sure that the wafer was gonna fall right off when I took my bathing suit off. I couldn't believe that it stayed on and had a good seal for the rest of the week. I was so happy!! turn
Dx'd Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

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