Support For My Husband

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Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 4/30/2010 12:13 AM (GMT -6)   
Hi, I just found this site and it seems really good, hopefully you'll be able to help me with some stuff!

My husband had an emergency ileostomy yesterday. (Yeah, I can't sleep so I turned to the internet!!)

They thought he had a small bowel obstruction, turned out to be a big one in the large intestine. They've sent it off for analysis - it *could* be cancer, but then again it could not be (the surgeon said they really couldn't tell one way or another) and it was very contained so even if it is they've probably got it all. He's had UC for 9 years (he's 27) which was very, very mild and controlled so it was a bit of a shock, and we only had 3 1/2 hours to process it before the surgery. Slightly overwhelming!!

The only thing that seems to be helping me not panic is thinking about practical things - so far I've got this list

- a machine washable mattress protector
- RADAR key for disabled toilets to help with changing bags out and about
- sew him some stretchy belly bands to wear if he feels self-conscious at first, as obviously I can't get/make covers until he's decided which size bags he's most comfortable with.
- a really awesome 'man-bag' because he won't be able to carry things in his right pocket and he'll need spare kit with him.
- get the Prescription exemption form filled in & return his pre-payment certificate for the partial refund (won't be needing that any more!!)
- bigger bathroom bin!

I've been researching foods etc - it actually sounds like it'll be less restrictive than when he had UC (it's so weird that he doesn't have that any more!) but I will put together printed lists of bad food, gassy food, 'make it watery' food and 'make it thicker' food.

What else do I need to do to make things easier for him when he comes home? Apart from lots of TLC and acceptance of course!! Thank you :)

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/30/2010 4:51 AM (GMT -6)   
Lots of things to drink because dehydration may be an issue. My surgeon always recommended things with electrolytes, like gatorade and pedialyte. Some people say that's not good because of all the sugar, but they do have low sugar gatorade and powerade.
Other than that, I can't think of anything at the moment, but I just wanted to say how awesome it is that you are researching this and being there for him
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (2/day), TPN 12 hours/day, Prednisone 7.5 mg (1/day), Florinef .05mg (1/day)


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/30/2010 6:24 AM (GMT -6)   
Wow how lucky he is to have you and all the time you are putting into taking care of him. Thats what I call real love. Anyway I am a little like him as in I didn't have long to process having an ileostomy either as mine was emergency surgery so I had a hard time dealing with it. It looks to me like you pretty much have it covered, your support is going to go a long way in his speedy recovery. This is an extremely good site and any questions you may have we are all only too happy to help answer you as best as we possibly can. Anyway glad you found us, welcome and please keep us posted on your husbands progress.
Take care
Doreen

Liveandlearn
Regular Member


Date Joined Aug 2009
Total Posts : 27
   Posted 4/30/2010 6:36 AM (GMT -6)   
Wow - how lucky is he to have such a supportive and proactive spouse!!
 
I'll answer more later from my experience - also zero notice for ileo!   I have to tell you one thing asap: don't freak about the vile smell of the output at first!  It will change after several days and won't be so horrible - I had almost no odor at all!  The early stuff is just bile and it is like green pond scum in every way.  Just my experience.  I told my surgeon that is the ONE thing to tell patients with new ileos.  There is enough to deal with without wondering if how to cope with the smell.   Oh, and as others will surely tell you - the hospital supplies are crappola compared to what is out there.
 
Connie
June 09  - hysterectomy due to pre-C cells on Cvx.  Complications during surgery due to adhesions....resulted in nicked bowel
July 09 - massive infection due to nick. Hospitalized 3 weeks, all antibiotics and drains failed.  Temp Ileostomy placed as last resort.
Jan 4/10 - bowel resection to remove damaged section
Feb /10 - flexible sigmoidoscopy confirmed resection healed perfectly
Feb 5/10 - first follow up to screen for evil pre-C cells, results in 4 weeks
Mar 1/10 - scheduled ileostomy reversal !!!  Yahoo :)
 
June/09 - present...forever grateful for this forum and all members !!
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/30/2010 6:48 AM (GMT -6)   
Big (((HUG))) to your hubby...once he gets through the initial adjustment he'll be out enjoying life.

As far as foods go~I have no restrictions:) but he will need to be careful, with a low residue diet, for the first few weeks. We are all different, so keeping track of how foods make him feel in the beginning will be helpful, and he will be able to pick and choose when he wants to eat questionable foods. There are items on 'lists' that say they cause a certain reaction but don't let that stop him from trying it...that reaction may not hold true for him!

Did he have a Total Colectomy? Is he a J-Pouch candidate?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2010 12:16 PM (GMT -6)   
liveandlearn made a great point about the green stuff, that is one thing i always tell people who are going in!
Also, the bag that he is wearing now, the clear thing, he can wear one that is opaque when he gets home, you wont need to make covers, unless you just want to. they just use the clear ones in the hostpial because they are cheap and they can see in them to see what the output looks like
I dont know what a radar key, but unless he has another health problem, you dont need to use a handicapped stall for an ostomy, its really easy to empty, he'll just have to get the hang of it.

For the matress, i already had one of thoes plastic ones, i had a pottytraining child, so those are needed,lol.
But i also snaked the pads from the hopstial, the ones that he is laying on now, they are waterproof and sturdy. When i camehome, i sewed a sheet on top, so they are soft, of course its always white, i cant change the cover, although ifyou are a good sewer (i only sew by hand) you could make a type of pillow case thing for them. And i sleep directly on it, that way if i have a leak, which once he gets the hang of it wont happen much, i just have to clean me and that pad.
he can use his right pocket, just has to be careful what he puts in it, lol. I personally started using my left pocket, cause i stuck some earrings in my right pocket one day and i was like, OMG that could have been a disaster!
He can just keep his spare kit in his car, or at his work in his locker/desk/cubby whatever.
Pants-once his stomach heals and the swelling goes down, about 4-6 weeks, he will be able to wear regular pants, unitl then sweat pants and such would be good.
-about your bathroom bin, i leave my extras in a cardboard box, but i make up six boxes (i use the pouch boxes) with the pouch ready, the wafer cut, each one has paste, tape, a sure seal and some rags in it. And they are ready, that way if i have a laek and need to change quick all i have to do is just grab it out!
As for food, the diet will be kind of restrictive at first, nothing hard to digest, ie fresh fruit, veggies, stringy meats, after that dont worry about it!

You are a good wife to do all this for him, and its good that he has this help
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!


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 4/30/2010 12:35 PM (GMT -6)   
I already had a plastic mattress cover, too, since my baby sometimes sleeps with us. I agree with summer about the pads at the hospital, though. I didn't even have to sneak mine. They told me I could take a couple
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (2/day), TPN 12 hours/day, Prednisone 7.5 mg (1/day), Florinef .05mg (1/day)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/30/2010 9:13 PM (GMT -6)   
well i didnt think to ask, im just a thief! LOL!!!
actually what made me think of it was i had taken the one home from when i had my son to sit on in the car ride, its gross but i was bleeding SOOO much and it was an hour long ride, i was afraid it would get everywhre, and i sat on it for about a month after that, until my bleeding finally slowed down. So when i found out i was getting an ileo i was like, imma take those!

Oh something else i do to help with mess, i went to babies r us and bought the pads that babies sleep on, i dont like to sleep on them they are smaller, but when i change my bag i put it under me on the floor so that it will fall on there and i wont have to scrub the grout and the floor!
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!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/1/2010 6:14 AM (GMT -6)   
Welcome, Sesberry, and a (((BIG HUG))) to you both. I'm so glad you found us! Your TLC and support is really going to help your hubby get through this with flying colors! :-)

I was sick with Crohn's for 7 years before having surgery to remove my colon and rectum. I've had an ileostomy for over 4 years. My hubby knew me the whole time I was sick and has been very loving and supportive through it all, which has helped me so much. Over time, having an ostomy has become my new normal, and most of the time, I honestly forget it's there. Nobody will be able to tell that he has one. The pouch is completely hidden under clothes.

Some things that you can get for him are: Eakin Seals to put around the hole in the wafer to prevent leaks, adhesive remover wipes to use when removing the wafer, Dove soap for sensitive skin to use when cleaning the area around the stoma, and Hollister M9 drops to put in the pouch. That product is the best at eliminating any odor when emptying.

You can order free samples online from the ostomy product manufacturers, like Coloplast, Convatec, and Hollister. Also, ask your insurance company which company they have a contract with when it comes to ordering products. I order from Sterling Medical, and they have been great.

If he gets a rash in the beginning, ask his doctor to call in some Nystatin powder to the pharmacy and put on the skin around the stoma. It's an antifungal. Also, Calmoseptine Ointment is a great product to put on the skin right around the stoma to protect it from leaks. It can be purchased at the pharmacy, too, and called in by the doctor.

Best of luck to you both, and stop back often with any questions you may have!

Cecilia
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.


Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 5/1/2010 11:29 PM (GMT -6)   
Thank you everyone, there is some really great advice here, thank you.

It was an emergency and his small intestine was so swollen (his stoma is currently 55mm - it looks like a tomato!) from 2 weeks of being blocked up that they couldn't consider a j-pouch then, however his rectum etc is all fine so it's something he could have in the future if he wants, it's great that he has that choice!

I'm in the UK so we get pretty much everything on prescription, and he no longer has to pay the prescription fee so it's all free basically, which is great. I'd seen the Hollister drops and will definitely order some, thank you for that advice Cecilia.

Once I get the certificate from his doctor I can ring up the different companies and create the account with them, and our stoma nurse will help us make the 'shopping list' so I should be able to have most things ready by the time he gets home. And we can even get swimming trunks on prescription, which will be great as he's lost so much weight and swimming is great therapy!

We've experienced the smell... it was foul!! Stunk out half the ICU & he's in a closed room!!! I got him some Oust which helped as the hospital air freshener is rubbish, I'm glad you posted that Connie or I'd be freaking out right now!!

He's had a really good couple of days, he managed to sit up by himself today, which is great because it means the catheter can come out tomorrow. His appetite has also returned with a vengeance and hopefully in the morning the doctor will let them take the NG tube out so he can have yoghurt or a milkshake. This is really typical of him - the doctors say it'll take a couple of weeks for his appetite to come back and it takes him 2 days! How soon were other people eating after the op?

I've got some stuff to keep me busy over the next few weeks at least - I need to cobble something together to fit round the seat belt in the car to keep the pressure off his stoma... I see a blue peter project coming on!! And he needs loose 'mooching round the house' shorts made too.

Thanks for all the advice, I will be back with questions and experiences.

We've decided to blog about this whole thing - the address is ileostomy.wordpress.com if you want to check it out.

Thanks, Ses

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/2/2010 12:55 AM (GMT -6)   
you dont have to have anything on the seatbelt, unless he just wants it, it wont hurt it
At first it may be uncomfortable, but at first everythign is going to hurt touching his stomach.
Its easy to think that you can hurt the stoma, but its pretty resillent. I dont know if they tell you this , but it bleeds very easily, so if you scrape it changing the bag, its not uncommon for it to bleed, ALOT, dont freak, thats ok!
oh and also, red foods (red jello, red gatorade, red velvet cake, some purple foods, and certain red fruits) cause the output to turn blood red!!! Its ok, thats normal! Dont do like i did and plan a trip to the hosptial, lol. Noone told me that and i ate some redvelvet cake and my bag was filled wtih what i thought was blood, and i was terrified!
He wont need special swimming shorts either,but if you can get them free then thats great.
Honestly, the ET nurse will probably tell you to order a lot of stuff you dont actually need, less is more when it comes to putting the bag on!
As for eating i ate food food the third day, although not much, then the fourth day they put me on oral pain meds, which made my tummy feel sick so i wasnt eating anything, but i could have.
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!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/2/2010 8:03 AM (GMT -6)   
Ses,
Just checked out your blog and am happy to see that Andy is improving every day! You are an adorable couple, and I love the elephant you made for him! :-)

It's a good thing he had surgery, because a full blockage is so dangerous. Glad to hear that he's a candidate for a j-pouch in the future. I'm praying that his recovery continues to be a smooth one!

Hugs,
Cecilia

P.S. - I was diagnosed with Crohn's only a year and a half into my marriage, and this experience has brought us so much closer than I could have ever imagined. His love and support "in sickness and in health" have only made me love him more! It has also strengthened my faith in God. So much good has come out of this experience that I wouldn't change a thing even if I could! smilewinkgrin
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.


SocalJohn
Regular Member


Date Joined Oct 2008
Total Posts : 160
   Posted 5/3/2010 4:42 PM (GMT -6)   
Hi there. Its awesome that you are being so helpful for you husband. I know I couldnt have gone through my colectomy without my wifes help.

One thing I do want to mention, is please make sure your husband listens to all the help that is given to him from his wound nurse, surgeon, and all other medical professionals. Right now is a very difficult time, and he may be inclined to ignore them. It does take a while to get used to an ostomy, and it will make things much easier with their help.

Good luck.

Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 5/17/2010 4:23 PM (GMT -6)   
Hi, I'm sorry I never updated this... everything went really well, he came home, healing well and it was looking great.

Until they told us today that he has cancer.

They think they got it all out, but it's an aggressive little bugger so they can't be sure, so a few more healing and putting on weight weeks then chemotherapy. They hope that will zap it.

This is bloody terrifying!

Anyone else had colon cancer? What can we expect? The surgeon told us that most chemo drugs they use for colon cancer don't usually cause hair loss, that's nice I suppose!! He did say to think about freezing sperm though. Sucky.

Andy's amazing though, he's so positive and confident he's going to beat it. Or maybe we're both still totally shocked!

Thanks, Ses

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/17/2010 8:33 PM (GMT -6)   
Oh my goodness!! It's a good thing he had the surgery when he did. Hopefully, it was contained to the colon, and they got it all. There are several people on here who have had colon cancer and are doing well now. Please keep us posted on how Andy's doing, and I'll check your blog, too. You are both in my thoughts and prayers.

((Big Hug))
Cece
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.


cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/19/2010 4:11 PM (GMT -6)   
summerstorm: hospital sent me home with pads but they can also be ordered through Edgepark if you get supplies from them. You change on the floor in the bathroom???? I just put one of the pads underneath me on the sofa and since I change first thing in the morning on the days I change, things are pretty calm. I've had no problems doing it that way in 4 years. However, when we have company I'm in the bathroom on the floor right with ya. Can't imagine stumbling into the kitchen for a cup of coffee and looing into the family room to be greeted by the sight of me in the middle of that routine! :)
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