Surgery update

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lifeinterrupted
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Date Joined Mar 2011
Total Posts : 103
   Posted 6/3/2011 10:30 AM (GMT -6)   
K had it done by lapro up and walking right now feel so swollen can't imagine I'll ever fit back into my clothes will swelling subside right behind stoma soon?


Thanks everyone for your thoughts and well wishes!!
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

Post Edited (lifeinterrupted) : 6/3/2011 1:59:50 PM (GMT-6)


lifeinterrupted
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Date Joined Mar 2011
Total Posts : 103
   Posted 6/3/2011 3:02 PM (GMT -6)   
Also I have to drive 8 hrs for my sister in laws wedding in 3 1/2 weeks my daughter is the flower girl, do u think I can manage that? My husband will be doing the driving and all the heavy lifting....
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/3/2011 7:41 PM (GMT -6)   
If in 3 1/2 weeks you are not up to an 8 hr drive can you break it up with an overnight stay and just do 4 hrs in 2 installments? If you have that option then it will take a little pressure off you. If you find when you hit the road you can do it in one trip then go for it. I'm just more concerned about your placing this kind of pressure on you so soon after the surgery.

It is such an important occasion I know you don't want to opt out of it. 4 days after discharge I had a 3 hour drive back home with my husband and he did very well. Any longer drive would have been a bit much...3 1/2 weeks after surgery I think is do able but I would have an overnight stay in the mix as a plan B just to be on the safe side.

Good Luck. I'm sure your little girl will be a fantastic flower girl.

Post Edited (Another UC wife) : 6/5/2011 11:20:50 AM (GMT-6)


andorable
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Date Joined Jun 2005
Total Posts : 981
   Posted 6/4/2011 10:26 AM (GMT -6)   
Hi Dee,
So glad its all over with for you and you will start to feel great in no time. The swelling will subside in time, can't remember how long it took for mine to go down but I think it was a few weeks. I had to travel home from the hospital which was over an hour from where I live and I know its not nearly as far as your 8 hour trip but one thing I found that made me comfortable was a small pillow on my tummy with the seatbelt around that rather than having it directly on your tummy to protect the stoma, I did that for a while after surgery cause I was scared of anything hurting my stoma. Keep up the walking and make sure you rest up. Don't push yourself too hard. Take care and keep us posted on your progress
(((((((((HUGS))))))))

Doreen

Trigirl
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Date Joined Jan 2006
Total Posts : 768
   Posted 6/4/2011 11:17 AM (GMT -6)   
I'd lay down in the back seat and take it as easy as possible. (With the seat belt on of course.)
Those things we keep trying to do get easier not because the feat gets easier but our ability to "do" gets better.
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
6 Grown kids, grandkids and a great husband to keep me busy

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/5/2011 10:52 AM (GMT -6)   
Please someone tell that this will get easier that this is just a hump that I have to get over physically I'm doing good so far but I'm having a bit of emotional issues, I feel overwhelmed a bit and I did this so that I would be able to take care of my family but it's bringing me to tears right now :-(
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/5/2011 12:20 PM (GMT -6)   
Of course you are overwhelmed right now. Absolutely normal. We are "old people" lol in comparison to you with no responsibilities being retired. You have a lot more on your plate so of course you are nervous about all of this.

That is why I want to see you think about a plan B for that wedding you are fretting over. Due to your age I think you will heal even faster than you think from a lot of what I have read from others. Just don't place too much on yourself these first few weeks. Please accept (or ask) for as much help as possible to make it easier on yourself. It will make a difference.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/5/2011 12:29 PM (GMT -6)   
Oh thank you uc wife I need some encouraging words right now to know that I made the right decision, things always look bleak I guess at first I really am trying to stay up beat and keep reminding myself in month how much better then so on and so forth I have to get past this hump ;-) you are such a compassionate person! Bless you for being here ;-) I'm already stressing about fitting into my clothes straight away silly I know but I don't want to have to change much if u know what I mean.....
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/5/2011 4:36 PM (GMT -6)   
Dee,

The swelling went down fairly soon, I also can't remember exactly how long it took, a few weeks.

It will get a lot better. But it's not good to stress over the wedding. Make plan B and maybe plan C and be realistic but know that there's a good chance they will work, but they might not, and if that happens, you'll figure out how to handle the disappointment (not like we don't have plenty of that already w/these diseases). The best you can do to make it more likely to have things work out is to take as good care of yourself as you can today, and worrying does not help you heal. Things will change a lot in the next few weeks.

And yes, you did this for yourself and your family, but I am quite sure that NO ONE expects you to be taking care of them a few days after surgery (OK, I mean no adult.... the kids might, but then that's because they're kids....).

It is really normal to be emotionally off balance... you just went through a major trauma, are full of drugs, etc. Wear something baggy and comfortable for now.... give yourself permission to be a recovering person ..... won't be this way forever.

I cannot believe how much better I am after 3 months. I can't even remember when I last felt this good, and I'm not even all the way healed yet from the complication I had.

Hang in.
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

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 6/5/2011 4:52 PM (GMT -6)   
There are so many cute summer things out there you probably already have in your closet. If you think dressy pants/capri type will make you feel more secure just make sure if you can to have an elastic waist with a dressy top to go over it. Or... If you can wear some kind of nylon/jersey type summer dress (I just got 3 in Kohls) that will easily lift up and you can scrunch under your neck while you tend to things that might be easy clothing to wear for the wedding. The gals recommend the microfiber type panties to support and hold the pouch in place versus regular panties that might not feel supportive enough if you wear a dress. Once you are home and doing a little better you can experiment what you think will work best for you. Have a large enough purse with you so you can have an extra wafer and pouch on you as a security blanket that you will not need in all likelihood. And use the handicapped stall...hubby still does.

Is your hotel or place you're staying at near the reception? After the ceremony (assuming it is in church in a separate location) if there is quite a lag maybe you can go there before the reception just to freshen up and check things out or even a power nap before the reception? Just some additional things to think about to take some angst out of this.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/5/2011 6:29 PM (GMT -6)   
Blueglass, uc wife you guys are great!! I think your both right about the plan b and we will be driving down a whole extra day earlier and yes the dresses I will be checking those out as well as the panties and the hotel is right by the reception so another good thing! You guys are right about the taking time I'm trying to know from what everyone has posted that after some time it gets so much better hard to bear in mind at the moment I will be trying!

Can someone tell me if it is normal to be burping so much I mean I have been burping non stop the last 2 days and my stoma is sputtering away thicker to liquidy depends on what or how much I've eaten?
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 6/5/2011 7:15 PM (GMT -6)   
Dee,
The wind is normal and will ease up soon. You have every right to be feeling down as the others have said your body has been through major surgery and your on pain killers. You have to allow yourself some grieving time as well. You have just lost a major organ in your body and the way your feeling is completely normal. My surgery was done as an emergency and I remember the first time I laid eyes on my stoma, I burst into tears and was very depressed for a while, I kept telling myself how much better off I would be but It still took me a while to get my head around it all. But now I love it and love life, there are some days where I think how nice it would be to just have one day without wearing a pouch, but its all good. It won't be long before you will be able to do anything you please and be able to have wonderful quality time with your family. Anytime you want a chat we are here. As for clothes it also won't be long before you will be able to wear pretty much anything you want. I have made some adjustments to my wardrobe but nothing too major. There are lots of cute clothes that are a little looser fitting that are ideal, I'm in Australia and we are in winter now and I can comfortably wear firm fitting jeans. Take care and allow yourself time .
((((((((((((((((((((BIG HUGS))))))))))))))))))))))))

Doreen

lifeinterrupted
Regular Member


Date Joined Mar 2011
Total Posts : 103
   Posted 6/5/2011 9:22 PM (GMT -6)   
Thank you Doreen for being so encouraging the positive words are so helpful!
I know I need to relax it's hard when sitting in the hospital itching to go home!! Yes and the burping ugh!! Lots of burping and ucky clear hospital pouches with the clip I don't get!!! :-/
Dee stay at home mom of my 2 beautiful children
dx with uc July '10
Current on going undiagnosed bowel disorder

Prov3:5,6

Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 6/5/2011 9:46 PM (GMT -6)   
Dee, everything you are describing is perfectly normal. I was so overwhelmed after surgery and cried just about every day... and I was very excited for my surgery to begin with! It is just so much to learn you have to deal with so many ups and downs right away. I had some serious anxiety issues as I had some healing hiccups and everything started to worry me. I kept wondering if this or that was normal. My husband kept reminding me that everyday my body was healing is some small way. I may not have been able to feel it in the day-to-day, but as I started to look back over the weeks I knew it was true. Then, all of a sudden, four months had gone by and I was doing great again. Now it feels like those hard times went by in the blink of an eye.

The best advice I can give you is to take it day by day and try not to worry about the things that are far off on the horizon. Yes, there are things you have to deal with right away such as making sure your pouches stick or that you are taking care of your skin... but other things like worrying about whether or not your clothing will fit can wait. I was so bad about this. I was worried about what systems I would be using on the trail for hiking when I was no where near that point in my healing. Why was I wasting my thoughts and energy on that? It did me no good. Finally I realized that I needed to be more patient. There would be plenty of time to figure things out... to try different systems... to experiment with food... to see if all my clothes fit... to learn how to go swimming with my ostomy.... all that kind of stuff. I really began to take things day by day and I tried to live more in the moment. It worked to ease my stress. Now, 6 months out , when I have the basics figured out, I can move on to the more advanced stuff like figuring out how to manage my ostomy on the trail etc. I still have to constantly remind myself to be patient and that it takes time to figure this stuff out. I am going to have my ostomy for the rest of my life and have oodles of time for trial and error.

Regarding some of your other questions, gas was one of my major worries in the beginning too. I didn't have Lapro, so I don't know if that bloats you up more, but I definitely had a ton of gas pain. I took gas-x all the time. Around 8 weeks, all of that started to go away. Now, I hardly take the Gas-X anymore. I still burp my pouch once in a while, but it is no big deal. I eat all the gassy foods (beans, carbonated beverages, beer, chew gum etc.) now too, though I couldn't until after the first 2 months because they gave me gas pains for a while. Especially right after surgery, your digestive system is trying to adapt, so don't worry too much about how off things are now. It will change a lot for the better as the weeks go on.

It also took me a while to get into my normal pants. I had to start off with very baggy things for the first 2 months. I still had incision woes after that, but the bloating had gone away enough that slowly I eased back into my regular wardrobe. By the time I had my wound vac off my abdominal incision at 4 months, I could wear all my clothes again.

Don't be too hard on yourself. I know it is easy to want to return to normal immediately, but this is major surgery and it takes a lot of time to emotionally and physically heal.
-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

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 6/5/2011 9:52 PM (GMT -6)   
Its totally ok to be all weepy and freaked out right now! i was a mess right at first, esp since i didnt see my son the whole time i was in the hospital! Once you get off the pain meds it will help too, they mess with your mind. If you were on pred, do the taper like they say, i didn't and that was awful.
But anyway, the gas is normal and its really the worst part, at least to me. I think that 8 hours might be a bit much, but if you can sleep or rest on the way it might not be too bad.Like they said you can always leave a day early and stop somewhere if needed. I have traveled a long way with a small child anyway, and a break is a really good thing.
Your clothes will fit in a while, i think i wore shorts with elastic bands for about a month, the swelling had gone down, but it hurt to have the pants rubbing on my stomach. And at first i wore really loose shorts, like literally 2 or 3 sizes too big, so they didn't touch my stomach.
I like the flirtitude brand of panties from JcPenneys, the hipster kind, that's the only thing i have changed wardrobe wise.
Those summer dresses would be good for early after surgery, i wish i could wear them without looking 9 months pregnant!
You saw my pics so you know i just wear regular clothes. One other wardrobe item that you might want is a belly band from a maternity section, it will help hold the bag up so it wont flop around and keep it flatter, i wear it with skirts

Get some gasx and take it in the morning then mid day, that will help keep the gas at bay.
And yes it will get better!
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!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/6/2011 8:05 AM (GMT -6)   
Whatever system the hospital has you using right now and if the wafer is sticking and not causing you any skin problems that is the most important thing. The pouch....I bet they have the opaque ones and in all likelihood the velcro closures you can order that will be compatible with the wafer. The hospitals don't have a large selection - you kind of have to take what they give you and then get samples to try if you don't really like the hospital stuff or if you develop a reaction to it down the road. (Hubby used the Hollister New Image from the hospital for almost 3 months and his skin decided it did not like the adhesive so we switched brands.)

Hubby was given the clip in the hospital and didn't much care for it. He uses the velcro ones and much prefers those. Insofar as clear pouches or not. In the beginning he preferred them only so he could monitor and see how much was in there and if it was thick and needed to be moved away from the stoma area down into the bag. The opaque ones definitely camouflage things and is a matter of personal preference.

With the velcro enclosure the most important thing is once you roll up the bottom the times needed, when you snap the velcro start from the middle with firm pressure and go to the left and again from the middle to the right so you get a tight seal. The pouches my husband is using also has a 2nd velcro closure after you button up the first one.

He has had NO leaking whatsoever by making sure he firmly closes the velcro. He does carry a clip in his pocket when he is out just for insurance if anything screwy happened to the velcro when he needs to empty. Just paranoia but it makes him feel more secure.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free
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