How better are you after ostomy? Other symtoms gone?

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Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/2/2009 9:00 AM (GMT -6)   
Have a question for anyone who had aches and pains along with Crohn's. Sore feet and sensitive skin. Or any thing else oh, like forgetting yout head if it weren't screwed on. After you got your surgery did other symptoms go away too, besides no more stomach pain?

jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/2/2009 9:12 AM (GMT -6)   
I don't have Crohn's but I have UC and I recently had a total colectomy. Before the colectomy I had a lot of mouth sores and sores on my tongue etc...

I am still getting those.

I am also having sore knees- but I think that is from the pred I took for so long- I just recently tapered off of it, thank goodness.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


jblue65
Regular Member


Date Joined Jan 2008
Total Posts : 381
   Posted 5/2/2009 9:12 AM (GMT -6)   
I don't have Crohn's but I have UC and I recently had a total colectomy. Before the colectomy I had a lot of mouth sores and sores on my tongue etc...

I am still getting those.

I am also having sore knees- but I think that is from the pred I took for so long- I just recently tapered off of it, thank goodness.
Jackie, 43
Pancolitis, DX October 06

Lexapro, Synthroid, Protonix,
Tapering prednisone down to 10 mg

Surgery March 13th- Total Colectomy
Jpouch surgery to be done in 3 steps


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/2/2009 12:01 PM (GMT -6)   
i had UC too, and most of my other symptoms are either gone or have gotten much better. Like i had this rash like thing on my hands and it started teh same time my UC started. It used to be so bad that it bled and cracked and all. After i had surgery, the first year it was a little better, then this year it was even better.
So alot of times your symptoms might take a while to go away.
the sore joints are probably from the pred and some of the side effects are from the meds. I had constant naseua and headaches and heartburn from my meds. And of course all that went away when the meds went away!

Kaycie
Regular Member


Date Joined Jan 2006
Total Posts : 449
   Posted 5/2/2009 2:38 PM (GMT -6)   
I was wondering the same things. I guess like steroids, the disease takes a while to really get out of your system. But, I know a lot of my other issues, like rashes on my shins, disappear while I'm in remission, so I know surgery will be tough, but I realize that once the surgery is done and I am healing, it won't be long before those issues are more permanently gone.

My surgery is May 7th... they are removing my entire colon and rectum and I'm getting a permanent ileostomy
Kaycie - Age: 26
Crohn's - Dx Nov 05
Failed Remicade, Failed Clinical Trial ABT-874/Aisle 12, Failed Humira. Onto Tsyabri. If I fail that, total colectomy.
IVF #1 (In-Vitro Fertilization) - Failed
IVF #2 - IVIg, Heparin, Baby Aspirin - TWIN GIRLS!!!
Reagan Dawn - 8/2/07 - Lived 1 hour 27 minutes due to Cloaca, NOT affiliated with my Crohn's
Addison Maria - 8/2/07 - 20 months old


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/2/2009 5:32 PM (GMT -6)   
Thanks for the comments. Kaycie I will be thinking of you and praying for you on May 7th. My GI wants me to have the same surgery right away but I am still wavering. I don't want to do it before fall if I can last that long. I'm in remission from much pain and many accidents and can walk outside and ride my bike now that it's getting nice, and why would I want to mess up the summer?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/2/2009 8:53 PM (GMT -6)   
trigirl-i had my surgery april 17, 2007 and it didnt mess up my summer AT all!!! In fact it was one of the best summers i have ever had. But June i was in the pool and by July i was pudding wrestling, lol.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/2/2009 9:54 PM (GMT -6)   
Hey Trigirl, I have crohns disease and since my ileostomy surgery on march 4th this year I feel so much better all over. I have had crohns for 21 years and had right side hemicolectomy done in 06 and still felt bad after that surgery but this time around I feel terrific. I to have been on prednisone for several years and still on it but weaning down and have got a couple of aches but nothing compared to how I used to be. Before I couldnt get through a day without morphine, but all the other drugs are now gone and I couldnt be happier

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 5/3/2009 2:41 AM (GMT -6)   
WOW I love swimming!! You were swimming after 2 months?? That would make me one happy girl. I thought there was a 3 month recovery for this surgery.

Being off pain meds!! I can hardly imagine it. It seems pretty normal to hurt, you know?!?

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 5/3/2009 6:52 AM (GMT -6)   
I've had crohn's for almost 25 years and had ileostomy/proctocolectomy surgery on Feb 24--so almost 9 weeks ago. The answer to your question is--I don't really know yet. I was in really bad shape before the surgery and definitely feel a number of improvements already. Last night, I went to a dinner/dance and danced without getting tired or winded--last October, I could barely stand up on the dance floor. Last summer, I had issues with my eyes, mouth sores, and skin--all gone as my nutrition improves (I was very malnourished prior to the surgery). Prior to the surgery, I had charlie horses, back spasms, and muscle cramps. Just the back spasms reamain. I am dealing with some bad cramping under my sternum (going on 2 weeks) but it's so much less pain than before the surgery. For me, I was out of options --either surgery or massive steroids and goodness knows whatever else. I haven't been on steroids in several years (maybe 6 or 8?). Good luck making your decision.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


TheBag
Regular Member


Date Joined Apr 2009
Total Posts : 37
   Posted 5/3/2009 2:11 PM (GMT -6)   
trigirl what are you waiting for? im one of real lucky ones to get slammed w/ both uc/ crohns. i had the 3 step op for uc back in 92-93 it was reversed in 11 months but ive just become a lifetime memeber as of 3-27-09 i dont regret either one of them. life afterwards was rough for a bit but het youve gotta go thru hell to get to heaven.
the three step op is rough like i said youre in and out of the hospital but its well worth it in the long run. let them take the infection out its just gonna be there when you least expect it.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/3/2009 2:12 PM (GMT -6)   
All my additional pains/problems went away within 6 months after my proctocolectomy. I had had an ileo for many years before that and my Crohn's was still active in my colon/rectum and it wasn't until those were removed that I started to really feel healthy!!

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 5/3/2009 4:20 PM (GMT -6)   
I was diagnosed Crohn's when I was 16 (but they figured I had it since I was very young) and I am 50 now. I had a terrible go of it through the years. I didn't get my ostomy because of my Crohn's but because I had cancer so they did a colostomy so I still have quite a bit of bowel. Yes, I still have issues (absceses, cramping, sore joints) but it's not as bad. I still go all the time but I don't have to RACE to the bathroom (one HUGE thing!) any more. My friend calls it my personal 'Porta-pooper! I just started back on Humira which seems to be helping.

I am just being honest BUT I have done more traveling/camping/fishing in the last 2 years than I have in 20 some years. I have been afraid to go out for long periods of time (I have been known to poop in plastic bags in a cars while waiting for road construction - the most humiliating thing to go through. Now I still poop in plastic bags, but people don't notice it, (it isn't pretty to do it the 'old fashioned way') it doesn't smell and I can take care of it when I choose to!!!!! THAT'S worth it right there!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/3/2009 4:51 PM (GMT -6)   
I was diagnosed with Crohn's at 17, went thru a lot of surgeries, resections and temp. ileo.  Perm ileo changed my life and it's been wonderful.  Yea, there is a lot to learn, and some trial and error to go thru but you will do it and feel so much better getting the disease out of you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Fruitcake
Regular Member


Date Joined Aug 2006
Total Posts : 112
   Posted 5/4/2009 6:52 PM (GMT -6)   
Hi Tri girl,
I was diagnosed with crohn's and colitis several years ago. I did every medical treatment
available remicade,humira pred. I had lots of side effects from the drugs and my life sucked.
July 2007 I had a total coloectomy and have never looked back. My aches and pain are gone
I do everything I want. I teach water exercise,sail and I am training for a half marathon for
the Crohn's Colitis foundation in july in napa, ca. I feel blessed that I not only got my life back
but I am thankful everyday that I survived and my life can be what ever I want it to be. It is
not easy at first to deal with a bag and you worry that you will leak or someone will notice. But
you learn to live with it and when you are down or having problems you have all the great people
on this site to help. I just wish I had done it sooner. Good luck! Fruitcake
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