Random post-surgery thoughts

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Blueheron
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Date Joined Feb 2010
Total Posts : 720
   Posted 11/30/2010 10:38 AM (GMT -6)   
Well- I am three weeks post permanent ileostomy surgery (and one week post-surgery to have my incision redone when it opened down through the muscle layer due to Prednisone) and have some random thoughts...
 
-It is hard to not be worried about every little pain.  I wish I had a camera inside me so I could see what was going on:)
 
-I am changing bags fine and have not had any major leakage issues (other than a few caused by incision drainage weakening the seal).  However, I can't help but worry about what is going on underneath the wafer in the three days I have between changes.  Did I get my barrier ring on correctly?  Did I cut the opening perfectly around my stoma?  Every time I peel off a bag I hope I don't fine a huge sore because I made a mistake.  So far so good, but still.  When do you get confindent with all of this?
 
-Sometimes when I eat I think, "do I really want to eat this because it is going to make my appliance fill up."  I am finding I have to empty my appliance a lot, but then again, I am eating quite a bit.  I lost weight during surgery and my surgeon also told me my protein reserves are quite low so I have been eating more tender meats, eggs and protein drinks than usual to aid in healing.  I also realize that output changes as the body adjusts to the surgery.  I still wonder though if someday I will just be able to eat normally without analyzing it so much.  Of course- I know I won't have to think about what I eat as much as when I had UC!
 
-I can't believe how much output changes in appearance throughout the day.  One minute it is liquid and one color, the next moment it is like toothpaste and a completely different color. I had no idea it would vary so much.  It is very strange getting so up-close-and personal with your wastes:)
 
-I felt I was completely ready for this surgery psychologically... even excited since I was so tired of feeling so sick from Ulcerative Colitis and medication side effects.  I researched extensively and really wanted the permanent ileostomy.  I am still completely satisfied with my decision and have no regrets.  Still, I have found myself getting a little depressed and teary-eyed which has caught me by surprised since I am normally a really positive and happy person.  Mornings are the hardest.  I wake up and realize my appliance is permanent and that I am going to have to deal with this the rest of my life.  I am hoping as time goes on and I see I can do everything I did before that this feeling will go away.  Right now though it seems like life revolves around pain medication schedules, dressing changes, appliance changes, eating and emptying.  I can't wait until I can get back to my normal routines.
 
 
 
-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 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 11/30/2010 11:04 AM (GMT -6)   
This is recovery...our bodies and minds have to grieve for the part that is gone sad

I am sure that everyone of us has experienced one of those feelings and from my experience time does help!

On a side note regarding the 'analyzing' don't be alarmed if you eat something, say Red Velvet Cake, and you think you are dying....it's the food coloring shocked I'm 10+ years into life w/an ileo and I still get a shock!!!

Take everyday as it comes and before you know it you'll be out living and it won't be on your mind as much...

(((HUGS)))
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!

killcolitis
Veteran Member


Date Joined Dec 2009
Total Posts : 2396
   Posted 11/30/2010 11:05 AM (GMT -6)   
I haven't been through this (my daughter has UC and surgery may be in our future) but I know what you mean about the wild mood swings. Sometimes I think of surgery as an out and feel incredible relief and other times I wonder how I can feel that way when she will have to worry about all of the things you mentioned above (if she's lucky and doesn't have more problems). I think one of the major oversights in IBD treatment is the massive psychological toll this takes on even the most positive of patients. You in essence lose control of the basics in life and it is shattering. I know many feel they have PTSD after surgery (my husband and I feel we have it now). If/when you are able, it might be worth talking to someone just to be able to have some help integrating everything that has happened to you in a healthy way and moving forward.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/30/2010 11:25 PM (GMT -6)   
when you lose a body part, you go through the stages of grief, just like losing a loved one. Not to the same extreme of course though.

its normal to be paranoid and obsessed with it at first, you will stop doing that after a while.
as for the depression, when you wake up upset about it, think about the fact that you don't have to spend two hours in the bathroom, that you can jump up and grab whatever you want to eat, that you don't have to take 20 pills a day, just remember WHY you had the surgery. everytime i get depressed i look at my shower walls where my kid colored with what was supposed to be washable crayon when he had to play in the bathroom when i was sick, and that gets me through. i remember why i did it, and that its so worth it!
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!

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 12/1/2010 8:39 AM (GMT -6)   
Everything u mentioned I felt very much the same way you did, and it took me over a year to really start to get my head around it all. But now I'm about 19 months post op and life with an ileostomy is so much better than the pain and suffering I was going through with crohns/ colitis. Also changing my appliance takes a matter of 5 minutes for me now, its a breeze. I was worried about anyone seeing my pouch but now I really dont concern myself about it at all, but it is also unlikely anyone is gonna notice it, not one person has noticed mine. I was paranoid over the smell as well but I use peroxide 3% you can find it in the medicine section of you supermarket and its been fantastic to neutralize the odor. Life is so much better and you will get to that point. Just give yourself time to grieve as well. Keep posting and any questions we are only too happy to help. Emptying decreases with time too so eat what you want but remember to chew everything well.
take care
Doreen

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/1/2010 9:08 AM (GMT -6)   
    Guess I am one of the lucky, rare birds who never became depressed following surgery.  My anus is still intact and I STILL have problems with discomfort in the anus and mucus leakage.  I have to wear a kotex pad.  The surgeon has sent me for Ct scans of the pelvic area which turned up nothing, and two weeks ago an MRI.  I have to call him today to find out if they received the report yet.  I think I have a fissure, but he couldn't find it with the anuscope.  I also had a hematoma in the anus which had to be drained shocked   in his office in Sept....OUCH.   All this aside, my family doctor sent me for a myriad of blood tests last week because my hair has been falling out.  I started taking extra B12 pills on my own for the last several weeks.
     I want to give you this much encouragement.  Although, I still have some hurdles to jump over, it is far better than my living with the UP (my problem was the rectum, colon only had mild diverticulosis but still had to have total colectomy with perm. ileo).  When I was on ALL that medication for the UP...prednisone, colazal, rectal meds, 6MP..then tried the Remicade (failed), then Humira (failed), my blood tests were whacko....high blood glucose (doc put me on oral med for that), low white count, low red blood cell count, abnormal diff, increased liver enzyme levels....it goes on.  My blood work results were also sent to my house and I received them yesterday.  Everything is smack dab in the middle of normal yeah .  The only med I now take is 25 mgm of Toprol for my blood pressure.  When on prednisone, my pressure was so high, I was on three different blood pressure meds.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 12/1/2010 10:58 AM (GMT -6)   
Thanks for the encouragement everyone.  I is very reassuring to hear that others have had the same thoughts.  I think mornings are also the toughest because that seems to be when I am in the most pain.  When I sit up in bed after a long night's rest, it seems like everything in my belly shifts around, muscles tighten and spasm etc.  Ouch!  I can't wait until the one morning I wake up pain-free.  I have to remember too that I am only one week out from having to get my incision re-closed, in which the surgeon also had to restitch the muscle layer.  Though this was a much shorter, simpler surgery, it still hurt like heck so even though I am 3-weeks post-permanent ileostomy surgery, I still have quite a bit of pain. 
 
It is easy to forget with the pain of surgery how awful UC and the related medications were.  I have to remind myself that in September I had lost over 22 pounds and was so sick I could barely walk.  Now I am eating and walking around again and gaining strength every day.  I also have to remember how Remicade had me writhing around on the floor in tears from horriendous joint pain.  I couldn't even walk or hold a pencil.  None of the pain I have experienced from this surgery was even close to that!  Fortunately whenever I get down, my wonderful, supportive hubby reminds me of these things too and how much better off I am now.
 
Christine- hope your issues resolve soon and that they find out what is going on.  Hopefully the B12 will help.  I found out that I am low on protein which certainly didn't help with my incision reopening either (though it was mainly caused by Prednisone).  Did they test your protein (albumin) levels?  I was shocked to find this out because between my hospitalization for UC in September and my surgery in November, I ate sooooo much protein.  I guess my body wasn't absorbing it because of the UC or something. 
-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 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 12/1/2010 5:43 PM (GMT -6)   
     Yes, they tested for protein and it is within normal limits.
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