I made it through surgery

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MACGIRL
Regular Member


Date Joined Jul 2009
Total Posts : 90
   Posted 11/6/2010 10:53 AM (GMT -6)   
Well, I'm up and about after surgery and will probably go home tomorrow. Surgery went well. Dr. Mathew removed most of my colon and I have a beautiful incision that everyone keeps bragging on. One RN even commented you couldn't tell that I had one. The pain, staples and slit gave it away for me. Anyway no redness or swelling.

I am eating solids now but just a little at a time. Food seems to burn a little going now and since I started eating solids my pouch is putting out a lot really quickly. I don't know if this is normal or not.

I am still very tired but seem to be getting stronger every day.

I had a bad day yesterday. Very depressed. Cryed alot. I just felt really down and alone. Little better today. Stoma and pouch are a real adjustment. I just felt unattractive and like a freak.

Also the surgeon said that he wasn't sure that we would be able to do the second surgery. He pulled my small intestine down and he said it just barely reached. I didn't know intestines came in different sizes. LOL. Anyway he said he might send me somewhere else that does even more surgeries for that one. Don't know yet. But it is somewhat discouraging.

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 11/6/2010 12:33 PM (GMT -6)   
     Macgirl...I am soooo happy to hear you made it through surgery and are doing well.  Don't expect too much too soon.  This takes time.  Are you going to have a j-pouch or a permanent ileo?  I have a permanent ileo because my surgeon refused to do a j-pouch on me because of my age (63 at the time) and my extended use of prednisone (dependent on it for the better part of two years).  I still have issues, I think I may have another hematoma in the anus, and am going back to the surgeon on Tuesday.  I just hope and pray it isn't an r/v fistula.  But, I won't worry about that now.
     I must say I was never depressed after the surgery, maybe because I was soooo sick for so long and knew it was my only alternative, but today while taking a bath, I glanced down at my stoma with the bag attached and said to it..."well, I guess I am stuck with you for the rest of my life."  LOL!  Oh well, better than suffering with that pain, bleeding and urgency.
     You just take one day at a time and take it slow with the eating.  Don't do what I did...eat too much too soon and had to have that nasty ng tube stuck down my throat about the forth day post op..ugh.  My surgeon said to listen to your own body and it gives the best advice.  God bless.  I will keep praying for you!!!

MACGIRL
Regular Member


Date Joined Jul 2009
Total Posts : 90
   Posted 11/7/2010 5:05 PM (GMT -6)   
Thanks for the kind words Christine. I was gonna have the jpouch but it looks like the is a chance they will not be able to do it. I am just overwhelmed. The pouch And stoma are just so different. I guess I will get used to it as time goes on. I just feel like I am deformed. I'll just have to take it day by day. I don't like not being able to do everything for myself either. That's hard.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 11/7/2010 6:27 PM (GMT -6)   
Glad things went well for you!

I know that's not what you were hoping for ultimately, but you will get used to it and it won't seem so bad. Especially when you start really feeling better.
Chassity
29y. married with one beautiful daughter born 11/20/07
-2002 dx with severe pancolitis u/c; 12/19/08 had total colectomy; 12/25/08 emergency surgery due to abscess-had to redo ileostomy and switch to left side; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
Feeling Fabulous Now with my ileostomy!!!!!
Pregnant with second baby due 5/26/11

MACGIRL
Regular Member


Date Joined Jul 2009
Total Posts : 90
   Posted 11/7/2010 7:37 PM (GMT -6)   
I'm just having problems dealing with the pouch and stoma. I thought I could deal with it and I know I ultimately will. It just bothers me sometimes and I have felt really alone not being able to talk to people that are going through the same thing. (I just didn't feel like getting my macbook out at the hospital until yesterday. I'm home now and on my son's computer.) I just want to feel better and not cramping all the time; and bleeding; and going to the bathroom every time I eat or smell something, listen to music or get excited is great. I know I will start feeling better now that I am at home.

I just don't know how I'm gonna sleep. I know if I lay down I will not be able to get up. I haven't mastered that yet. The only good thing about hospital beds is that they go up and down. Can't roll on my side either.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/7/2010 8:13 PM (GMT -6)   
Tina,
I'm so glad your surgery went well and that you were able to eat solids and go home so quickly. That's amazing! The first couple of days are the worst, but it will get so much better, and we are here to help you every step of the way!

One thing that helped me with the pain from the incision in my abdomen was to press a pillow against it any time I had to move around or get out of bed. Make sure you take the pain medicine, too. Just take it easy and try to get a lot of rest. Your body does most of its healing while you are sleeping.

Take care,
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.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 11/7/2010 8:19 PM (GMT -6)   
Cecilia beat me to it...pillows do help a lot! You really need to sleep, do you have a chair you can relax in until you can get in and out of bed?

Take your pain meds in the beginning! You won't need them for long, but they will help with the first few weeks:)
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!

MACGIRL
Regular Member


Date Joined Jul 2009
Total Posts : 90
   Posted 11/8/2010 3:29 AM (GMT -6)   
I will get my meds filled Monday. Really needing pain mess. Side hurts. The pillow really does help.
34 year old female, one 13 year old son
diagnosed 1995 age 20 (was pregnant with son)
Currently taking : Imuran 200 mg, Remicade, 40 mg Prednisone

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 11/8/2010 7:31 AM (GMT -6)   
I could have been the one writing those comments last year. Time flies. above advice all great.

I felt the stoma and pouch all the time at first. I am still rather sensitive to the output and the drag of the bag, but life goes forward. Pain gone, life much better.

Get that medicine and rest lots. This may seem opposite idea but take little walks each day too. That will help you get strong and help with good sleeps.

Will be praying for your speedy recovery.
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

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 11/8/2010 8:00 AM (GMT -6)   
Im so glad to hear the surgery went well for you too, and the way your feeling is completely normal. I can relate to it as it took me over 12 months to get to a happy place with my stoma. It freaked me out when I first saw it and really struggled for a long time but now I couldn't be happier with it and I am sure you too will reach that place. Don't expect too much from yourself and just take one day at a time. I still sleep with a body pillow and never have a problem getting comfortable now. I am still very protective of my stoma though too but life is great. Take it easy and keep posting to its great to chat with people who know exactly how you are feeling. Take those pain meds and keep taking small walks.
((((((((hugs)))))))))
Doreen

honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 11/8/2010 5:16 PM (GMT -6)   
MACGIRL
So happy that your doing well...surgery is always a biggie, so take your time and take care..
 
Leslie

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/8/2010 10:40 PM (GMT -6)   
its normal to have tons of output and gas at first, that will slow down pretty quickly though, and you will feel better about the bag and such once you get rid of that awful clear bag. Also, if it's pulling, tuck the bag up into your undies, and that help keeps the weight from pulling.
most important, DRINK ALOT!!!! You don't want to get dehyrdrated, that sucks, i think most of us ended up with that at least once shortly after surgery. If you think you are drinking enough, you aren't, lol
and glad to hear its going well!
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!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 11/8/2010 11:34 PM (GMT -6)   
I'm happy to hear you're doing well! i totally agree with summerstorm, its so much easier to get used to the stoma and pouch once you get an opaque bag. Also as it heals it looks less scary and becomes easier to deal with both physically and mentally. But don't be alarmed about how easily you get emotional. Its natural, all those hormones are rushing around after surgery, i cried every day for at least 3 weeks after surgery. But now I am already starting to forget I even have the stoma until i see it or i get some especially active output.

Tip for the bed, see if you can find a sleeping wedge pillow. I had one of those and it made getting in and out of bed a lot easier. I got mine from a catalog that also sells online for about $20. totally worth it.
-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
-Now IBD is indeterminate tests will be done after healing if still UC J-pouch surgery, if Chron's take down of colostomy

MACGIRL
Regular Member


Date Joined Jul 2009
Total Posts : 90
   Posted 11/10/2010 8:08 PM (GMT -6)   
I'm still really sore. It is hard to sit or stand for very long. I am also still having problems get up when I lie down. I cannot lay on my side yet either. I can walk and get out of a chair easily though.
34 year old female, one 13 year old son
diagnosed 1995 age 20 (was pregnant with son)
Currently taking : Imuran 200 mg, Remicade, 40 mg Prednisone

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/10/2010 8:45 PM (GMT -6)   
I remember feeling really weak after surgery, and it took a lot of energy just to get out of bed and stand or to walk from one room to the other. I'm glad the pillow is helping. Your strength will improve a little bit each day.

One thing that helped me was to put a chair in the shower, so I could sit while showering. You can also sit in the kitchen while making something to eat. Hang in there. You're doing really well! :-)

Hugs,
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.
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