Newbie with post-surgery questions

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redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 12/31/2007 6:15 AM (GMT -7)   
Hi everyone,
 
I've been reading through the posts with great interest since having my colectomy on Dec. 24.  I was hospitalized the week before that with another UC attack and nothing was working to get it under control - I was steroid dependent and Remicade wasn't working, so I agreed that it was just time to take the awful non-functioning colon out.  I'm really glad I had the surgery as quickly as I did - I wasn't scheduled to have it until a month later - but I know recovery will be harder because I was so sick going in to surgery. I'm still taking prednisone and it will be a month before I can wean off it totally. 
 
I just got home from hospital 2 days ago and I guess I'm recovering OK, but I do have some questions that I wonder if you all can help me with:
 
(1) I feel a lot of cramping and I guess the only way to explain it is like really bad indigestion and gas while I "feel" anything I eat, even really bland basic low fibre food, working its way through me.  Is this normal?  Does it subside over time?  I do have bag output, so I don't think it is a blockage or anything.  I just hope I'll stop feeling the disgestion so much.  The pain pills don't seem to help much with the cramping feelings.
 
(2) Hot flashes and body buzzes and light-headedness - I'm assuming this is from the prednisone and withdrawal from the super doses of IV prednisone steroids they were giving me in the hospital.  It just makes me feel so weak and all I can do is lie down - I was up and about walking two days ago and then all of a sudden I started getting these flashes yesterday and spent most of day 6 post-surgery in bed.  I'm worried I'm suffering a set-back. 
 
I've been reading all the posts on dehydration too and I'm trying to drink Gatorade, water, etc. all day to make sure I avoid ending up in hospital again.  It is hard when you have no appetitite to want to eat and drink, but I'm trying so hard to get some calories back on.
 
Any advice you guys can give me is much welcome, especially since I can't call the surgeon's office over New Year.
 
Thanks!
 
 

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/31/2007 11:05 AM (GMT -7)   
Red,

I had a colectomy 8 years ago (now I have a bag). I did not have the colectomy from UC so I cannot speak to your medical withdrawls from medications. However, I can say that cramping and bloating are the number 1 complaints of this surgery. It does get better as your body heals. It takes a year for your body to completely heal internally. Your intestines are bruised and very sensative to having to digest food. If you are having bowel movements...that is wonderful and I am very envious. As long as you are not vomitting or bleeding the pretty much everything else is normal. You are only a few days out of surgery. Now is the time to rest and recover. Even if you feel ok, your insides need to rest. Give your body time to heal. When you stomach is cramping, try a heating pad or take a hot bubble bath. Pain pills cause constipation so be careful.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 12/31/2007 11:55 AM (GMT -7)   
Thanks so much for your reply, Amey. A lot of it right now is just wanting to know what I'm going through is normal and trying not to stress about every little thing. I'm so afraid of ending up back in the hospital.

Thanks again!
Kristen
RedHeadedMama
32-yr old female, diagnosed with left-sided UC in 2002, likely now pancolitis
1st severe flare started post-pregnancy in December 2006
4 x 400mg Asacol 3 times a day
Back on the prednisone 40mg :(
Remicade - 2 infusions, started Nov 10, 2007
VSL#3, calcium + D, B-100, iron, vegetarian/whole foods diet
Osteopenia (diagnosed May 2007)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 12/31/2007 1:08 PM (GMT -7)   
ACKK, Don't sress. That is a big No, No. Stress is found the most in two places...first is the head and second is the gut. Try to stress as little as possible. Make sure you stay hydrated..drink, drink, drink and get lots of rest and you should be fine.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/31/2007 1:13 PM (GMT -7)   
Kristin,

Be sure to stay hydrated.. you know the symptoms of dehydration. Yes, coming off of steroids is crazy. Different people react differently. I was on a ton of 'roids prior to my surgery and vividly remember how awful I felt coming off of them. Almost flu like symptoms for me. The sweats and dizziness for sure. Take it slow. I had a horrible time kicking the last 10 mg... ended up actually shaving the pills. Everytime I went to 5 mg, I started horrible withdrawals, but I had been on it for a very long time at a high dose, plus cortenemas and suppositories also.

I think you are doing wonderfully for only a few days post op. Congrats!!! Take your time, be patient. Your "insides" have been thrown around (well, maybe not 'thrown') and stuffed back into your belly. If you are having gas pains, go lay on your bed and slowly roll from one side to your back to the other side. Sometimes that lets the gases move around in your cavity and doesn't hurt so bad. Keep walking too. That will help.

Keep us updated on your progress. Be sure to drink, drink, drink. And as Amey mentioned in another thread, it doesn't hurt to increase your sodium intake to help stay hydrated too.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/31/2007 9:20 PM (GMT -7)   
i start to feel dizzy like that if i haven't had enough to drink that day, that couldbe you getting dehyrdrated, or it could be the steriods, those are awful little things aren't they?
the gas and such will get better, you will learn which foods make it better and things to help it pass faster. about a week after i got home, my stupid self ate some pizza, and i thought i was going to DIE! it was awful, lol. that set me back, because i felt so sick i didn't drink or eat. I can eat pizza now though. Eating small amounts will help with that, at least for now. Also try laying on your left side, which i know is kind of hard now, or walking, or rocking. SOmething else that can really help gas, which this may be hard to explain, but have you ever seen anyone "pump" a baby's legs to help them with gas? what you do is lay the baby on it's back and then bend it's legs up and push them towards it's chest. try to either do that to yourself, or have someone help you. that sounds werid, but it really does help!
Also, don't be aftraid to take gas-x! and getting off the pain pills, if you are still on them, will help the tummy problems too!
hope you feel better!

redheadedmama
Regular Member


Date Joined Jan 2007
Total Posts : 54
   Posted 1/1/2008 9:47 AM (GMT -7)   
Thanks everyone! The gas is definitely starting to go down a little as I'm being even more cautious to eat low-residue food (although it seems so unhealthy compared to what I'm used to eating - white bread and cheese and eggs never used to be such a large portion of my diet!) and I put a new bag on today all by myself - I couldn't wait for the ostomy nurse to come tomorrow (unfortunately because of the holiday she was going to have to wait until tomorrow to come). The bag changing process went pretty smoothly (I ate some marshmallows first!) and it is a very good thing I changed it because the stoma had shrunk from 44mm only 4 days ago to 32mm! My skin was starting to suffer underneath.

I used a Hollister opaque bag that is more "moleskin-like" with a filter, so we'll see how that goes. I know some people have mentioned leaking with the filter, right? I just thought it would help let some of the gas out so the bag wouldn't balloon up like that awful plastic one I was given at the hospital. I like the floating flange and the less plasticky feeling of the bag better than the old one though.

I've also got some of my appetite back and I'm drinking, drinking, drinking, to stay hydrated. I switched from just water and juice to incorporate some Gatorade as per your suggestions and I think that is really helping. I think what I was feeling before was definitely the prednisone buzz and sweats. I think my pills musn't have dissolved right or something that day. I'm back on track now, although I did drop down as per my tapering schedule today, so we'll see what happens. Fingers crossed I don't get those symptoms again.

Thanks for all your help,
Kristen
RedHeadedMama
32-yr old female, diagnosed with left-sided UC in 2002, likely now pancolitis
1st severe flare started post-pregnancy in December 2006
4 x 400mg Asacol 3 times a day
Back on the prednisone 40mg :(
Remicade - 2 infusions, started Nov 10, 2007
VSL#3, calcium + D, B-100, iron, vegetarian/whole foods diet
Osteopenia (diagnosed May 2007)


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/1/2008 10:00 AM (GMT -7)   
Kristen,

You are doing awesome! I am so impressed with how quickly you are acclimating to your new life. I have no advice to offer you because you are doing so well on your own. I just wanted to congratulate you on your wonderful attitude and recovery.

Happy New Year
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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