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iluvreece
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/24/2007 1:04 PM (GMT -6)   
Hi everyone, my name is Trudi and I am a recent recipient of an ileostomy after total colectomy for severe UC. I am now 5 weeks post op and after a 42 day hospital stay home now for 5 days. I feel terrrible. The smallest amount of activity has me completely fatigued to the point of sitting or lying down, short of breath with my heart beating out of my chest. I am drinking Gatorade and drinking liquid nutrition (Boost) but I feel worse with each passing day.

Did anyone else feel like this? I don' know if I am just expecting too much of myself or if a call to the Surgeon before my follow up appointment this week is in order. Thanks in advance for any pearls of wisdom on this one. Trudi

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/24/2007 1:19 PM (GMT -6)   
After a 42 day stay at the hospital, I'd say you're expecting too much from yourself. You really need to take it slow, take one day at a time, do what you feel up to doing, but be aware you may pay for it the next day.

I had surgery almost 3 months ago, and while I was only in the hospital for 10 days, I had wound care for 2 months. I'm still trying to regain my strength and yes, I'm still out of breath if I take the stairs too quickly. I'm getting stronger each day, but once in a while I do too much and I'm down again for a couple days.

Go a little easier on yourself, there's nothing that won't wait ;0)
Judy
49 years old, CD since I was a child.    
Six resection surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 9/24/2007 1:48 PM (GMT -6)   
Hi Judy,
Sorry to hear that you are having such a hard time with your recovery. I was in the hospital for a total of 3 weeks, only 1 after my surgery. I was severely dehydrated and had lost 30 lbs and yes could only get off the couch to use the bathroom. I was never really in pain, but had slight fevers up until last week and tired easily. It has been six weeks now and every day should be getting better for you, I look back and can do a lot more than I could when I first came home from the hospital. Are you eating at all? Are you sure you are getting enough water? It sounds like you could be dehydrated. Just remember to rest when you need to and don't be afraid to call your surgeon/doctor with any concerns.
CD diagnosed in 1991
Only one serious flare up in 1998 and again in July 2007
Total colectomy August 2007 now saying UC
J-pouch surgery to be scheduled in 08


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 9/26/2007 6:33 PM (GMT -6)   
Hi Judy,

It sounds like deja vu to me! I was in the hospital and rehab for 8 months. I could barely walk with a walker and could go only 100 ft. when I got home (and my heart was pounding!). I am 6' 3" and my weight dropped from 210lbs. to 118lbs. I was barely able to choke down the boost (could take only chocolate) and drank gatorade to try and keep hydrated. I could barely get off the couch. I have had a PICC line to help with hydration and I get 2 liters of fluid a day.

With time and PT I now am back driving. I can go to Dr. appts. myself and even do the shopping. I ride the bike at PT and do weights. I no longer need a cane. Life is slowly returning to normal. It has taken me about eight months to get to this point. Someone told me it takes twice the time of your hospitalization to fully recover (for me 16 months). That seems about right to me. I am really sorry you have to go through this but I can tell you that patience and physical therapy have worked for me. Rest when you feel tired and when your heart rate goes too fast. Good luck & keep tuning in to this forum, it's the best!

Richard

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 9/26/2007 7:10 PM (GMT -6)   
Trudi,

I had a TC several years ago and it did not improve my symptoms. I was still very ill for years. Then in 2005, I had a revised colectomy which was not very helpful either. In 2006, I had another revised colectomy which again, was unsuccessful. I had 3 surgeries and my health kept deteriorating. Finally, about 6 months ago my symptoms got A LOT worse...I had shortness of breath like I was running a marathon when I was just walking around the house, I had heart palpatations constantly, I felt dizzy, winded, weak, and I thought I was going to faint all of the time. I could not walk around my house...I had to crawl to get to the kitchen or bathroom because I felt so weak. I could not stand in the shower, I had to sit in the tub and let the shower pour on me. I went to the ER and they said I was dehydrated and to drink more water. However, I was already drinking 80-100 ounces of water a day. Finally, a Dr did some blood work showing that my eletrolytes were extremely low and and I was rushed to the hospital and placed in the ICU unit. I spent 9 days in that hospital and was sent home. They told me that I was very malnutritian because I did not eat. I explained to the DR that I did not eat because the TC was not successful and I still could not have a BM on my own. This happened to me this past July 2007. Anyway...to make a very long story short..in Aug 07, I was rushed to another hospital were they performed an Ileostomy. My life has increasingly gotten better because I am no longer dehydrated or unable to eat.

Please if your symptoms sound like mine, get some blood work done right away. You sound like your eletrolytes are very low and that is not something Gatorade can fix. Please, get this done right away. When my symptoms were bad, I ignored going to the Dr because I did not think it was going to kill me...it turns out that it nearly did and I almost died. I was in the ICU for a while because I was so close to being dead.

Call your Dr right away and tell them all of your symptoms!
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