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blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 5/29/2011 3:23 PM (GMT -6)   
I had my surgery 3 months ago. My butt wound is still not all the way healed, had an abscess there, but it's not too bad, and a lot of things are going well. I thought I'd post to share a few things I am now able to do and couldn't before.... those of you just going into or out of surgery will hopefully have your own lists soon enough.

1) I got up early, thought it'd be nice to go for a walk, like I used to do almost every morning way back when. I "remembered" that I couldn't walk in the a.m., might have to go to the bathroom.... and then big smile, I can do that now. Went to an arboretum near my house, it was lovely (weird how I both never got fully used to being sick yet still have trouble remembering that I'm better).

2) I started taking baths again. Just got permission a bit ago, so nice. Can't wait til I can swim in pools, not there yet.

3) My partner had a big life event with out of town family staying with us. I cooked both lunch and dinner for six people then went to the evening event and barely thought about the bag at all -- no checking to see if it was full, leaking etc. Those of you who are worrying if it's selfish to have surgery, well, one of the best things I'm finding is that I can just help out. Before I would have been way to tired to do a quarter of the work I did when the guests were here.

4) A good friend of mine who lives an hour and a half plane ride away is kind of bummed about her upcoming birthday. She's been wanting me to visit for three years to see her new house, but I've been too tired and traveling has been too hard. I spontaneously said I'd come for her birthday -- weekend after next. Haven't been able to do anything like that. We're both very excited.

5) It got hot out and I'm drinking smoothies. I couldn't deal with the fruit before, created urgency and accidents. I'm also eating ravioli, beans, cheese, bread, and a bunch of other things I like and haven't been able to eat for years (I ate chocolate even when I was sick, well, just because.....)

6) Practically everyone I see tells me how good I look, that they haven't seen me look this good in years, sometimes since they've known me. I just ran into a guy I used to work with who'd read my blog some but hadn't seen me for a long time.... he wasn't sure it was me because I looked so healthy! And I'm not even healed yet. So if you're worried about whether you'll be able to find a girl/boy friend with a stoma etc, I get it, but good health looks way better than regular plumbing.

Feel free to add your own. I am so glad I had the surgery, even though it's been hard.... it feels almost miraculous to get this much health back, and I have more healing to go!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 5/29/2011 6:20 PM (GMT -6)   
thats a great story blueglass - as you say it is almost miraculous, maybe even actually miraculous - i hope life continues on an upward track for you

i find its the simple things which make the whole process worthwhile - this afternoon it was beautiful May weather so i walked with my niece aged 9 & nephew aged 5 a mile to the shop for ice cream then on to the playground where they ran, climbed, slid, jumped, fell, laughed & screamed for 2 hours then strolled back home where they fell asleep on the couch - its great to be able to be a proper uncle for a change
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/29/2011 7:27 PM (GMT -6)   
Blueglass and Villager,
It's so wonderful to hear positive stories like yours! This surgery gave me my health and life back, too. I have so much energy, don't have any dietary or physical limitations, and couldn't be happier with the results. :-)
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.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/30/2011 2:45 AM (GMT -6)   
so happy for you blueglass and villager. i feel the same. i can do a lot more than i've been able to in so many yrs and i agree, it's a miracle.

first, as you said, being able to go out of the house bright early in the morning, something i couldnt do before.

be able to eat 3 meals a day and still feel good.

be able to attent family and friend's occasions - i've missed so many weddings and other occasions, cuz i felt too sick to go.

being able to do household work and not feel like i'm a burden on everyone.

the list can go on and on from the simplest thing to bigger things. i'm happy and thankful i had surgery.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/30/2011 7:28 AM (GMT -6)   
Ditto to all the above. Hubby can now go out shopping with me and we are not on constant "bathroom alert". We go out to eat now and it is a calm relaxing event. Taking walks which were a thing of the past we can now do and enjoy.

He will try golfing tomorrow with his friends. 9 holes and may not get through it but they are prepared and willing to play whatever he can sustain.

We have had several social parties to go to and have had a great time. He is up dancing, socializing and is back to his old self.

Insofar as myself goes...........what a stress reliever! Every waking moment now is not consumed with his UC problems and my heart is a lot lighter now and I know I am more fun to be around too.
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) and no longer in pain.

Shaz032
Veteran Member


Date Joined Feb 2003
Total Posts : 1251
   Posted 5/30/2011 8:32 AM (GMT -6)   
Having had my ileostomy for 35 years since I was 10 years old, there's so many things that I've done that I wouldn't have been able to do if I hadn't had surgery: get through school, work fulltime, travel the world (Hong Kong, Singapore, Thailand, USA and UK and most of Australia), etc

Before surgery, I missed so much school and was constantly in hospital having blood transfusions, IV meds, blood tests, etc not to mention swallowing 21 pills a day. I was on a very restrictive diet (I can eat anything now... and it shows! to the extent that I'm in the process of losing weight - have lost 30 pounds so far, still have a lot more to lose though!), I was tired all the time and didn't have the energy to play with my friends, or do anything that kids are meant to do.

My ileostomy gave me my life back - I wouldn't trade it back for UC for all the money in the world!
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

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

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 5/30/2011 10:14 PM (GMT -6)   
Nice to hear all the good stories....

Honestly, it hasn't been all roses; at the same time, being just under seven weeks from surgery, I've noticed more energy in myself.....

Still getting used to the bag, especially changing everything.....

Hopefully, starting back to work next week part-time, and working into full-time in a couple of weeks...I don't know how a lot of you went back to work so quick! That is amazing to me! yeah

I did manage to walk to the top of a newly built bridge where I live..didn't get to the other side, but that will be for another day....

God Bless all!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 5/30/2011 11:27 PM (GMT -6)   
I can finally sit through a movie at the theater without missing 5-10min in the middle!

I'm healthy enough to actually workout and am now losing weight the healthy way instead of from pooping and throwing up all the time.

I can go to work all day (I still don't want to though!)

I can eat corn and peas again.

I haven't missed a social event since I recovered from my first surgery.

Go Go Ostomy powers!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/31/2011 8:26 PM (GMT -6)   
:)

My recovery wasn't without challenges, but EVERY minute was well worth how I feel now...quality of life IS important<3
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 5/31/2011 9:53 PM (GMT -6)   
Hubby did play his 9 hole executive course today and went out to eat with the guys afterward. He is hosting a card game tonight in our house (I just got in from a movie and dinner with the gals).

I can say that this was a GREAT day for him and the start of many more to come. He is getting back in the swing of things. YAY!
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) and no longer in pain.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/31/2011 9:59 PM (GMT -6)   
heres my good stuff for right now

1. fitting into cute clothes i bought today cause the steroid weight is gone, and i don't look like death.

2. getting to be at my kids school all day tomorrow

and my big one

3. taking my kid to disney for his bday!!! And eating those mickey ice cream things. Last time i went i was still sick and it was miserable. And i ate one mickey ice cream thing and was sick for two hours, this time imma eat 20!
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!

Newone
Regular Member


Date Joined Apr 2011
Total Posts : 58
   Posted 6/1/2011 12:58 AM (GMT -6)   
Wow reading all these stories brings tears to my eyes. When i got my surgery 6 weeks ago it was unplanned and I only had about 4 days to mentally prepare myself for what i was going to face. I couldnt do any research because i was in the hospital on the emergency surgery list just waiting for them to have time to do the surgery. And mentally i was not ready. I'm 27 years old and i litterally bawled my eyes out when they wheeled me down to the OR. Once inawhile i still break down and cry when i stop and think about my ileo. It has been challanging altho i havent had any accidents yet *knock on wood* and hopefully i wont ever. Im really hoping that my ileostomy is only tempoary because truthfully i dont think im strong enough as a person to have this forever. Not to mention they put it in the WORST spot ever. I didnt have the luxury of having a stoma nurse come talk to me and decide where a good spot would be and wouldnt you know they put it in the Exact spot where i wear my pants. Sigh. It's a total pain. It's really awesome that all of you are happy that you had the surgery. Ive had crohn's disease for 15 years so i can totally understand about getting your life back. My disease for the most part was semi under control but the reason i had to get the ileo was because i had a blockage in my colon and i felt constipated and could barely go to the bathroom for 2 months. The colonoscopy camera wouldnt even fit through it and that thing is about the size of a finger :/.


But the ileostomy hasnt been all bad. I go to the bathroom less. its weird only having to go to the bathroom to pee haha. And empty the bag of course but i do that when i pee so its basically the same thing. Im starting to eat things i couldnt really before... like ice cream and drinking milk without having really bad stomach pain. I'm still worried about some foods though. LIke can people with Ileostomy eat corn? Or pickles? Or fruit with seeds? (strawberries/raspberries etc) I bought a huge thing of strawberries the other day so blend with frozen yogurt to make a smoothie cuz my doctor said because i have no adhesions i can have those but im a little bit nervous about eating them not blended.

Anyway getting off topic here. I'm really glad that I got to read these stories because it's really great to know that if I do have this Ileo permanently that my life isn't over and things do get better with time. Thank you so much for sharing these stories. And i really look forward to reading more in the future.

~ Desaray

Post Edited (Newone) : 6/1/2011 11:18:31 AM (GMT-6)


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/1/2011 8:20 AM (GMT -6)   
Dear Luv - when it is an emergency situation like yours with no time to prepare it is completely natural to have these feelings. Same thing happened to my sister unexpectedly 2 weeks before my husband's scheduled surgery that we had a lot of time to prepare for. Apples and oranges in this case....here she is feeling so sorry and supportive to me and him and she has her surgery before him. That was a wallop not only for her but me too. I was so focused on my husband and when that happened to her and I could not really be there to help her (fortunately she has a great guy that was a big help).

I totally understand as do many others on this board. There are so many different reasons for this surgery occurring and acceptance of it comes in many different forms.

I hope for you it is temporary if that is your wish too. (That was also my husband's wish but not meant to be for many good reasons.) If for some reason it is not please don't let it over power and consume you. As you can see from so many posts and so many experiences there is definitely life to be lived with an ileostomy. Good luck and all the best!
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) and no longer in pain.
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