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Anyone help

Past Member
Posted by Past Member, on Thu Sep 02, 2010 5:15 am
I had my iliostomy 4 months ago, not by choice, emergency in hospital, 2 hours to live. Have now got over the shock of my new situation, coping most days. Has affected relationship with my hubby, only been married 2 years, i dont feel sexy any more. Tummy is still swollen and sore, i know take long time to heal, no one can really tell me how long it takes to get back to normal.  
Reply by weewee, on Thu Sep 02, 2010 6:07 am
um hummmmmm normal good one what is normal everyones normal isnt someone elses as far as time goes each person heals different and there are plenty of people on here that you can talk to for help and there is a nurse that gets on also oh and welcome to ostomy land
Past Member
Reply by Past Member, on Thu Sep 02, 2010 7:03 am
kitten wrote:
no one can really tell me how long it takes to get back to normal.  

while you will be over the surgery in about 6-8 weeks, i would allow about a year to get comfortable with the situation. my surgery also involved chemo and radiation and i had some nerve damage{nerves heal slowly} do the best you can confident in the fact that things will improve with positive and associate with others who are, avoid the "doom and gloom" attitude.............
Reply by beatrice, on Thu Sep 02, 2010 3:08 pm
Hi Kitten!

Don't despair - it does get better. But having an ileostomy is like most things in life ... there are good days and there are bad days. I've had mine since Dec 09.

It's really early days for you yet. 'Normal' for me was when I felt stronger physically and could actually go about my day without thinking 'ostomy' every five seconds. I still don't have my old energy back and I've come to accept that I may never. Some people bounce back and climb mountains ... I'm happy to be able to go for longer walks with my dog. Be happy with each improvement - a positive outlook is really very important and makes the world of difference.

Of the 2 of us, hubby was the one who had no problem with the look of the whole shebang and what it meant to our intimacy. He was right in there when the ET nurse was explaining things and I could see he wasn't grossed out or anything. That was my biggest concern (after realizing that I was gonna live - emerg surgery here too) ... what if hubby doesn't physically love me anymore? He's fine with it, so I am too now for the most part. Has it changed how I feel about my body - definitely.

Do you have an ostomy (ET) nurse advising you? I found mine very helpful - she made all the difference in the world as to how I coped with the ostomy. Most docs just work with the nuts and bolts of the operation ... we need someone who works with us as a person and can relate to the day to day issues that come up.

Eat well, keep hydrated, make sure you get out. Try to do some of the things you love to do and try not to obsess about things that you might not be able to do right now.

Keep in touch and all the best,

Past Member
Reply by Past Member, on Thu Sep 02, 2010 8:05 pm
hello kitten, It took me about a year to heal and feel comfortable with my ileostomy, try different barrier creams, etc, and keep the area as clean as possible, Im sure your stoma nurse will be more than happy to advise you on the best products that will help. In time you will feel more confident , and be able to enjoy your life as you did before, its just a matter of using the right products, and as they say time is a great healer.All the best   Rose Lee.
Reply by lexus1, on Fri Sep 03, 2010 8:47 pm
hiya kitten; please do not dispair, I had an ileostomy just over 2 years ago, some days I almost forget about it; Some days it burns, and the flippin' pouch wont stay adhered. You are alive and that is the main issue.  I hope your husband can cope with it...give yourselves both some more time. Its not that big of a deal when all the swelling goes get yourself and the routine down pat...All the good times will return for you both. I reccomend "NA'SCENT" a short squirt into pouch when dumping out and you stay odor-free...(unlike the non~pouched, lol!!) It isnt a deodorant, just clear odorless liquid. No, I dont get a commission, I just want to share this as  it changed my life. I hope to see you here more often. gentle hugs, lex/julie
Past Member
Reply by Past Member, on Sat Sep 04, 2010 5:46 am
Thank you beatrice for your reply, everything you wrote is excatly how im thinking and feeling at the moment. I do try to make the most of each day, do something me and hubby can enjoy, but i do have another medical problem that puts the blockers on alot of things i enjoy, dog walking, i have a Lurcher whos 11 years old now, called jed. I was dignoised november 08 with Fibromyalgia so recovery will take longer due to lack of energy, push myself to hard, try to run before i can walk, dont like doing nothing. Hope to hear from you again. Marjorie.
Reply by butterfly48, on Sat Sep 04, 2010 1:47 pm
Hi  I too had an ileoscopy as of May this year so we have a lot in common.    Married for 10 years (2nd time for both of us)  My problem is my stoma is always running, I have finally found
an answer for too much liquid.  I eat marsh mellows only 2, eat rice, banana's and I hate to
say foods with sugar, like ice cream, cakes etc, and have found I am not gaining any weight which still don't understand, these foods keep me sane without running to bathroom every 5-10 minutes to empty.  I have reduced doctors medication, still on Morphine time released and
an anti depressant.  I really have never been on doctors medications always taken vitamins, herbs, detox etc. Been fighting cancer on off for 20 years so proper diet was my answer.  Maybe your eating too much fiber and maybe you need  I hate to say  an anti depressant or try (herbal) passion flower or something to calm you down and relax you.  When your stressed
your body will rebel that is what I noticed.  What I miss is not able to eat salads or fruit
the good stuff.  So you may want to check your diet and do talk to a stoma nurse or your doctor.  My husband did have trouble adjusting,  he still is and so am I.  butterfly48
Reply by Marines1967, on Sun Sep 05, 2010 10:33 am
hi kitten,  i had to have an emergency operation in 2003, for diverticulitis. had to have most of decending colon removed.  also had a grapefruit size tumor removed op took 10hr's.  i am also disabled an can not walk or stand am confind to wheelchair an live alone. normal is a state of mind. you my friend are the same person you were before operation. kitten, if you felt sexy before then you are still sexy! i am a 60yr old male am sorry your hubby is not more understanding.  everyone heals differently. take care my friend.

Reply by crazycatlady, on Sun Sep 05, 2010 11:55 am
Hey, I was in a very similar situation - I had my ileostomy surgery as an emergency, about 3 hours from being too late so I understand how hard it is to adapt to it. Surgery was never mentioned to me while I was ill, so when I woke up with a bag it was kind of like - what the hell!?

I had my surgery when I was 16. I'm now 26. I met my boyfriend 7 years ago. To make sure he was comfortable with my bag I made him wear one for a day. I used one of my spares and put a couple of spoons of yogurt into it to make him realise what it was like for me. Now he thinks its funny if my bag makes trumping noises or squeaks or any of the other noises it  makes! I don't think he even sees it any more.

I hope this helps.
Reply by J.J, on Sun Sep 05, 2010 12:06 pm
Wow what an awesome make people understand what it is like to have a pouch!!..great thinking!!!

Reply by cee, on Sun Sep 05, 2010 8:13 pm
    Had to respond to your response.  Totally insanely brilliant to have your bf try your shoes on for size!  Wonderful.  Should you ever have a child together I wonder if he will wear the belly bag as well?!  Hope so!  How smart and lucky you are.
Reply by wookie2005, on Mon Sep 06, 2010 10:24 am
Hi Kitten,

I too had emergency Surgery on 30th June this year! i only had few hours to live as i was bleeding internally and the large bowel was about to perfirate. Wasnt the best thing in the world. But i remember being told by my Gastro Dr that i have Bowel Cancer. Within a month of finding out i met with my surgeon and the Stoma nurse, surgery was booked for the 14th July and then i just got worse and worse in a very short period! I had no colour to my face at all, my eyes looked like someone had pnched me they where just black circles i couldnt walk around a shopping centre my fiance had to push me in a wheelchair. I didnt know how i would cope with having the Ileostomy, i thought it was going to be so noticeable and i would feel gross and not find myself attractive anymore. But my Fiance told me when i was still in hospital that he doesnt love me for what i look like, he loves me for who i am and the type of person i will be when im better. he has been by my side the entire time. After my surgery i was in hospital for 12 days and i got use to things pretty quick, quicker than i thought to be honest...... It's now slowly getting towards 3 months post op, and i am feeling GREAT! i have spent most of my life dependant on a toilet always being around not anymore, i have been given the chance of another life one i can live and enjoy and be a young adult..... I have another surgery Booked in for Early december to remove the rectum, i am already starting to loose sleep from me stressing about it, but this happened before so in a way i am glad i had it done emergency it didnt give me time to sit there and do more reading about it all. The first time i saw what the stoma would look like i balled my eyes out. I really didnt think my man would cope he wouldnt love me and i didnt think i would like it either. I didnt think i would be comfortable showing anyone what has happened but im the opposite everyone had now seen my scar and knows about the ileostomy bag, and to this day my life with my fiance has never been better. the entire time we have been together i have been so unwell and now he cant seem to keep up with me, i am having more than enough energy. I still have naps now and then in the afternoon just to buck me up a bit if we going out somewhere ect...

I really hope you start to improve and if you ever need someone to talk with i am all ears....

Take Care
Brooke Smile
Reply by Tammy R Walker, on Tue Sep 07, 2010 10:03 am
my mom had to have a illeostomy done in january 2010 because of blockage and escemia  she lost alot of weight and had a hard time too gaining.  everything she ate or drink would not absorb in her body it would go straight to the bag  so with that happening dehydration was always an issue.  in and out of hospital with iv boost  finially in june it was really bad and she went back in hospital had it reversed and has not had good results but thats because her inner stomach lining is thin and fistculas are evolving on her incision line so they just put a bag over it to catch the drainage  she will be on the TPN for a long time after 5 surgeries shes left with only 4 feet of small intestines so nothing will absorb they are giving her shots 3 x"s daily to stop drainage   she hasnt really had a meal since june 2 and now she can only have ice chips  its been a long journey in a short time (long story short..lot more has happened)  anyway stay hydrated, you can have blood test to check your levels of nutrition to make sure you are getting what you need.  keep your head up and just remember what works for someone else may not work for you but keep trying because you find whats right for you  mom wanted to give up after the 1st couple months because they didnt give her the right bag that would fit good she got yeast around it tried plenty of creams powders the works  it got bad we took her to hospital so they could give her pain meds to finish taking the bag off that was leaking she finially found one that fit and stoma started healing and not hurting so much but then had probs with the dehydration   im glad there is a site like this cause i didnt realize how many people had this kind of stuff
take care
Past Member
Reply by Past Member, on Wed Sep 08, 2010 9:22 am
Hello Tammy, give your mum and yourself a big hug  from me and my hubby, reallly upset us both to hear what she has gone through,and still going through.My husband felt he had to draw all his emotional strength to come to terms with what was happening to me,even with the reasurance of the doctors and surgeons letting him know i was pulling through.I can only imagine what your mum is going through and the emotional strain it must be putting on you both! thinking of you both , kitten.
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