UC - ileostomy questions

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/24/2008 8:23 PM (GMT -6)   
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  :)
 
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1245
   Posted 1/24/2008 10:28 PM (GMT -6)   
TheLori said...
How long did you deal with UC symptoms before haveing surgery?
I had UC for 5 years before surgery.
 
TheLori also said...
Are you glad you did it? If so, how soon after surgery did you know you did the right thing?
Most definitely!  It was the best decision my parents ever made for me (I was 10 years old at the time). We all knew a few days after surgery when I was up and about, eating and on no meds with no UC pain (of course there was post-surgical pain, but that's expected) that it was the right thing to do.
 
TheLori said...
Can you control your BMs or do they just go in the bag anytime?  Do you know your going?
 
No, you can't control your BM's and you can't feel that you're going which is why you need to wear a bag 100% of the time with an ileostomy.
 
TheLori also said...
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!)
 
Ileostomates can't wear stoma caps since an ileo will 'go' 95% of the time (colostomates tend to have less bowel movements and so a stoma cap could be an option for them).
 
No one feels good 100% of the time (not even healthy people) but I can say I don't feel as though I have UC anymore which is wonderful. You could not pay me enough money to get me to go back to 'bowel intact' days.  I can say I haven't been back to my surgeon or doctor regarding my ileostomy in 25 years as I've never had a problem with it or anything related to it. No meds, no pain, I eat anything I want (and it shows!) and no running to the loo every 5 minutes.  Life is great!
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/24/2008 10:38 PM (GMT -6)   
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!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/25/2008 6:47 AM (GMT -6)   
Lori,
I had Crohn's for 7 years before having surgery for an ileostomy. We did that first to see if my colon and rectum would heal, but they didn't, so I had them removed 8 months after getting the ileostomy. I'm glad I did it that way, because I got to "try it out" before committing to it.

I have to say, I really like having the ileostomy. I am not sick anymore, I don't take any medicine, and I feel great all the time. I don't ever have to run to the bathroom anymore and can sleep 8 hours through the night without waking up once. I have no regrets and am really glad that I had these surgeries. They saved my life and gave me a new lease on life.

When I was sick, nobody ever told me that surgery would make me feel better, so that's why I was scared to do it. I thought I would still be sick, so I kept putting it off and trying different meds to achieve long term remission. Remicade worked for a few years, but then stopped working, and that's when I developed fistulas and abscesses and things went downhill fast.

With an ileostomy, you do not control the output, and I do not feel when it is happening. I keep a bag on all the time and have worn a stoma cap during intimate times with my husband, even though the bag doesn't bother him in the least.

Another good thing for you to know is that the bag is very flat under your clothes, so nobody can tell that you have one, unless you choose to tell them. I wear clothes all the time, except in the shower, so it's not even noticeable to me that I have an ostomy. All I notice is how wonderful I feel now!

By the way, surgery is a cure for UC. So if you're ready to be disease-free, I highly recommend it. Please ask any more questions as they come up! :-)
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/25/2008 7:51 AM (GMT -6)   
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?
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5691
   Posted 1/25/2008 8:23 AM (GMT -6)   
Sure, there are negative sides to each of the surgical options for UC. First and foremost is that life will be different but we all adapt. You will never have a healthy colon again and you will have increased frequency because of it. Is it worth it you ask? Yes, for me surgery has given me my life back. I have not had any GI problems nor seen my GI since I had jpouch surgery 8 years ago. It's hard to imagine but when you awake from surgery you will instantly know what non-IBD people feel like.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/25/2008 9:00 AM (GMT -6)   
so if there is constantly "stuff" draining in to the bag does it smell? Does anyone have a reason to NOT get this surgery?
Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08)


Hopeso
Regular Member


Date Joined Jun 2004
Total Posts : 231
   Posted 1/25/2008 11:09 AM (GMT -6)   
My friend, your post bring tears to my eyes!  I have been there, and now I am so much better, and able to live a normal life again.  My suggestions are the following: 1. Odor drops in the bag each time you empty.  A small bottle for your pocket for outings.  2.  A convex flange if you have problems with leaks. 3. Immodium if ok with doc, for slowing output when needed instead of high carb foods which are called thickening foods.  I ended up gaining so much weight on those foods, and the immodium works better for me.  3. Some of us girls have had our vaginas shift in there, when the rectum is removed.  Talk to your doc about the beforehand.  Most things are mechanical issues that can be controlled after you learn the ropes.  4.  Go find an ET nurse in your area and talk about this with her before hand.  I did that, and she told me that since I had the UC for 12 years I was in the area when the cancer can come, and it was better to get it out before that happened so you won't have chemo, etc.  She showed me a film, and I got to see my first stoma. That was a shock. She showed my pouches and flanges etc.  But when I asked about smell, she told me an ileostomy didn't smell. Ha Ha!   It definately smells.  So thank God for the odor drops.  I tried several and like the Ostofresh the best.
God Bless,
Leslie in KC
 
Les and DB from KC(Les is a member of UC and Ostomy forum also)
DB diagnosed 11-01-07
psa high for several years from 4 to 10, but last one before surgery was 8.6
Gleason 3+3
T1c
Da Vinci on 12-14-07


blue85
Regular Member


Date Joined Mar 2005
Total Posts : 62
   Posted 1/25/2008 11:21 AM (GMT -6)   

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


Dx: with Crohns in 10-2003 then changed to Ulcerative Colitis 1-2007
 
Proctocolectomy with Ileostomy June 19th 2007 - Doing great.
Prednisone 60 mg (currently tapering by 10 a week until zero), 6MP 125 mg po qd, Pentasa 500 mg 3 po tid, Calcium 400 mg with D tid, Iron po tid, Vit C po tid, Tylenol #3 prn, Multivitamin, Remicade - Quit working, Asacol, Colozal, Abatacept Study
 
 
 


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/25/2008 11:26 AM (GMT -6)   
One thing to remember about the smell -- it isn't like it smells ALL the time, there is odor when you empty the bag, but it's not like you're going to go around stinking up everywhere you go. To tell you the truth, the smell was so yucky for me in the beginning, but now, I hardly notice it. I use peroxide in my bag more for others' comfort than mine. Like if I am emptying in a public restroom or at work or whatever.
I will tell you one thing no one ever told me before I had surgery for UC. The beginning will be an adjustment. When I woke up, I could tell my UC was gone, and I felt better. But that doesn't mean it was easy, either. I went through quite a lot, and I hated my stoma for a few weeks. I really wish someone had warned me before hand that getting an ileostomy can trigger some very intense emotional reactions. I got lots of info about the physical - not so much about the emotional. It WILL be an emotional adjustment as well.
All that being said, life is waaaay better for me now. (I had surgery August 24, 2007.) I am doing things I haven't been able to do in 10 years. I am back at the gym, I ride about 80 miles a week on the bike. I can go places and not know where a bathroom is. Totally liberating!!!
So, while the surgery and recovery won't be the easiest thing you've ever done, it will be worth it in the end, and you WILL get over it. Some people heal fast, some take longer, but in the end, it's all good when you're going from that terrible disease to disease free. I'll bet you don't even know what "normal" feels like anymore - you've grown used to living with pain. It doesn't have to be that way.
And use this forum. We are all here to help, and we've ben through this. I would have been so lost without this board!
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 1/25/2008 11:42 AM (GMT -6)   
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
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/25/2008 1:14 PM (GMT -6)   
Lori,
SF's experience was almost word for word what I experienced. I suffered an almost non-stop UC "flare-up" for 3 1/2 years with a very short remission period in the summer of '05. Besides all the personal horrors and embarrassments I was experiencing, I felt a terrible guilt for holding my family back - from date nights with my husband, to missing my son's baseball games and my daughter's dance lessons, to family vacations. Everything! I finally had my colon removed in October '07 and life improved almost immediately. Taking care of the stoma and it's little idiosyncracies takes some learning, but it's still soooo much better than being sick. Sometimes I can't believe I can leave my house without thinking about the nearest bathroom! I also have a j-pouch, but I haven't scheduled the reversal yet. One reason is because I feel so good I'm afraid I'll ruin it! :) Do your research, but most everyone here who had their colons removed due to UC feels better and is med-free. Good luck and please keep us posted and don't be afraid to ask questions. -Laura

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/25/2008 1:20 PM (GMT -6)   
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.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 1/25/2008 4:25 PM (GMT -6)   
TheLori, I really feel for you as you make this decision about surgery. I am "lucky" in that my ileostomy is only temporary. I had diverticulitis and needed to have my sigmoid colon removed. I am 53 years old, so I have been through many other medical problems along the way...severe endometriosis, infertility, total hysterectomy at age 34 and now this. My poor abdomen looks like a battlefield...but that's why God gave use clothes! Although I am trying to be patient, waiting to have my ostomy reversed, I know that if the dr. said it had to be permanent to save my life or let me live without pain, I would be OK with it. Sure..it is pretty funny looking and pretty scary at first, but it really hasn't been that big of a deal...it is just one more life adjustment. Living with constant pain, and sickness.THAT is the big deal and thank God there is something you can do about it. Surgery is never an easy decision, but once you make the decsion, then you can get it done and get on with your life...the quality of your life will be sooooo much better.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/25/2008 4:47 PM (GMT -6)   

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.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/25/2008 10:05 PM (GMT -6)   
there are lots of tricks on this board about helpign with smell. If you do notice a smell when you are just walking around, that means you have a leak or something, but other than that, you will never smell it until you go to the bathroom. At first you will have to empty it probably once an hour, at least, but after you start eating real food it will slow down ALOT. It's been over four hours since i empited mine now, and i could go all night w/out emptying but i usually get up to pee so i do it then.
There are some negatvie ascpects, you have to carry aroudn a little bag with extra supplies in it, i had to switch to putting things in my left pocket, you have to be careful that animals with claws do not step on the bag, that coudl be a disaster! And i do sometimes get a little depressed about it, but that lasts only for about two seconds because then i get ready to do soemthing that i never could have done without the bag, because there wasn't much i could do before, and i am grateful for it!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2008 4:28 AM (GMT -6)   
Lori,
I'm so sorry you're in pain and are throwing up. sad 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.
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


TheLori
Regular Member


Date Joined Aug 2007
Total Posts : 277
   Posted 1/26/2008 2:28 PM (GMT -6)   
i  love reading all these posts  the one about the pets with claws cracked me up!!!!  Thank you for all the replys.  I was up sick all night last night.  I wish I could just call up the Dr and schedule surgery now HAHA.  Thanks again for all you replys!!

Lori
38/F
lower left UC diagnosed 1991
Asacal, zoloft, levoxyl, prednisone 40m 30m 25m 40m, 35m 30, multi vitamin, Azathioprine 100m (started 1/9/08) levsin,canasa


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 1/26/2008 8:33 PM (GMT -6)   
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!! tongue
 
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.
Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/26/2008 9:12 PM (GMT -6)   
yes, find my other paste stories also, if that one doesn't make you laugh enough!

Puddy
Regular Member


Date Joined Mar 2006
Total Posts : 32
   Posted 1/27/2008 11:54 AM (GMT -6)   
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.

tweet
New Member


Date Joined Feb 2008
Total Posts : 1
   Posted 2/24/2008 6:40 PM (GMT -6)   
Lori,
I suffered from UC for 18 years and they finally did surgery in 1986 so I have had my Ileostomy for 22 years and the minute I came to from surgery I loved mine, haha It was a complete cure so I was glad to never have those 15 bowel movements a day and all that predisone and sulfa drugs stopped.
Good to talk to you.
pabj
P.S. You ask about the pouch and all. I buy Convatec Durahesive skin barrier and the bag that matches it. It is only 10" long and soft and you can't see inside it. I made some little pouch covers to go over my bag and it is made from silk material like panties so its is real nice looking. I think you would feel so much better if you had the surgery. They have ET nurses that tell and teach you how to do every little step with changing, etc.

Post Edited (tweet) : 2/24/2008 6:47:37 PM (GMT-7)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 2/24/2008 7:13 PM (GMT -6)   
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.


25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 
Temp Ileostomy performed 1/29/08
Still Adusting
 
Healingwell.com has been my Godsend...Thank you

Post Edited (praying4healing) : 2/24/2008 6:23:02 PM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, September 24, 2017 8:04 AM (GMT -6)
There are a total of 2,872,486 posts in 315,224 threads.
View Active Threads


Who's Online
This forum has 156737 registered members. Please welcome our newest member, Deltalady.
339 Guest(s), 8 Registered Member(s) are currently online.  Details
Milenita, Tiger88, Loutucky, janetesfs, ChickenArise, scar1919, Stewvlle12, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer