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Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 7/12/2008 1:45 AM (GMT -6)   
Hi All,
 
Well, I got my kidney out on Tuesday.  Everything went perfect.  The mass was malignant but totally contained within the kidney with no evidence of any spreading to the surrounding tissues.  This was GREAT news!!!
 
Here is my problem, chronologically:
7/7 LARGE Loose BM @ approx 9:30pm
7/8 Kidney removed @ 9:30am - no BM
7/9 Watery, milky BM @ approx 10:30 pm (49 hours!!)
7/10 Small "scraps" throughout the day.  None big enough to call a "real" BM.
7/11 Discharged @ 1:30 - no BM
    Terrible gas pains throughout the entire day - no BM
    Call my GI-recommends Pepcid AC - didn't work.
    Early evening-terrible bloating. Look like I'm 6 months pregnant. No BM.
    Mid evening-called urologist (surgeon).  Recommends dulcalax supp.
    Insert supp @ approx 9:45
    11:00pm-after much struggling and an hour on the bowl, nice BM.
 
I have had no appetite all day long.  The gas seems to have decreased a bit but the bloating is still there.  I haven't had any urges to go since 11.  My stomach is gurgling up a storm.  There is no pain, just discomfort because of the bloating. 
 
While I was in the hospital, I was given morphine, a fentenyl epidural and a cillin anti-biotic.  I did not take my probiotics while in the hospital.  They administered my normal dosage of asacol and I felt fine.  They stopped the antibiotic on Wednesday night and the fentenyl on Thursday afternoon.  I was only given one dose of morphine after the surgery.  I received a saline drip from the moment I got there until the moment I left.
 
Could these feelings be from the anesthesia or the pain killers?  I came home and took my probiotics and it seems like all hell broke loose.  I took one Culturelle and one Asadopholous Pearl.  Is it possible my system is so fragile that I'm experiencing a negative reaction to the probiotics.  I was FINE in the hospital.  Is there a possibility that the removal of the saline drip could cause me to feel this way?  I feel like I've had either too much caffeine or too much sugar and I've had neither.  The only thing I ate all day was a scrambled egg, 1 saltine cracker and a tiny piece of Italian bread, just to try and get something in my stomach to take away the jitters.
 
I'm soooo scared and my doctors are assuring me that what I am feeling is normal, but I'm uncertain as to whether or not what I am feeling is due to the surgery or the UC.  I need advice from the experts on this board - and I mean that literally.  If you don't have UC, then there is no way to possibly know what we are feeling.  Anyone can look up symptoms and treatments for a disease, but experiencing the disease is a whole different ballgame.
 
It's now almost 3:45am and I'm wide awake and still jittery.  Gas is calmer but bloating is still bad.  Please, if there is anyone out there, please give me your input.  I'm desperate and scared to death.
 
Thank you so much,
Lisa E.  
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30406
   Posted 7/12/2008 2:34 AM (GMT -6)   
Wow Lisa...awesome news about the malignant tumour being isolated and removed completely!

Did you eat anything while in the hospital?

It's possible that your blood sugar is low and you need to have more calorie intake.

Are you still on the prednisone?

When they remove a kidney...do they take the intestines out of the abdomen (to make room for the procedure)..then put them back in to find their way back into place? If that's the case, then it could be why some of the gut discomfort and gas.

The other reason I would think is because of no food if you didn't eat in the hospital.

I think you should eat small amounts of food as often as you can. I think scrambled eggs, soup, anything that you think you can eat...but often even though you're not hungry. If you can handle any liquid meal supplements, then take them as well. I would think it'll take you a while to get things back in order soon.

Maybe don't use the probiotics until you have food in your system for them to work....they do need prebiotics to work properly.

Can you have yogurt? At least that has probiotic in it and if milk is OK for you, then do try.

Keep us updated as how your feeling. I'm amazed that you were only in the hospital for 3 days.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 7/12/2008 2:59 AM (GMT -6)   
Thank you so much Quincy for responding. As far as I know, they don't disturb the intestines. I never took the prednisone because of the surgery. I've eaten very little. The day of the surgery, I was not allowed to eat solid food. The next day, I had an egg, three bites of a roast beef sandwich and a couple of pieces of roasted potatoes for dinner. The following day was pretty much the same. The only thing I've eaten since I got home is an egg, a cracker, and a couple of tiny pieces of Italian bread. My stomach is very upset and I'm afraid that I'll puke if I try to eat something. I have absolutely no appetite and the thought of food makes me feel even more nauseous. I'm sure it would be absolutely excruciating if I threw up, so the though of thowing up is terrifying. The incision is in a very sensative spot, right under my left rib cage. You have no idea how much those muscles are used!!!! LOL I can hardly move!! LOL

I can deal with these symptoms if they are normal post-op symptoms. I'm just concerned that it is the UC flaring up or worse.

I credit my surgeon for my early discharge. He was incredible. A seamstress could not have done a better job closing my wound. I have a 6 inch incision that will be virtually invisible once it heals. I did a search on nephrectomy incisions and couldn't believe what I was seeing. I'm very lucky and I'm so thankful to God for putting this wonderful man in my path.

Thank you so much for your response.

Lisa E.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/12/2008 8:44 AM (GMT -6)   
Hi Lisa, I'm glad the surgery went well. I am no expert but just wanted to say a few things. It sounds to me like having a kidney removed is a major deal. Did they give you a list of things you may experience after the surgery? I am wondering it the bloating and all of that is normal after such a big ordeal. If it were me, I would call the doctor every day if you have concerns, this is a big deal, they should be there to help you. I hope you recover real quickly. Good luck and hang in there, I would imagine it will get better each day, if not, call the doc and if you have to go to the doc. Take Care, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 7/12/2008 9:06 AM (GMT -6)   
I don't know much about kidney removal, but anytime you have surgery, you have air entering the body that doesn't belong there.  It had to be reabsorbed by the body and released.  If your gas and bloating is getting less and less everyday, I would think that is part of the normal post surgical symptoms.  If it is not getting better, your doc should definately know about it.  Also, due to the antibiotics they gave you in the hospital, your "good" gut bacteria has probably been disturbed, and the probiotics you took when you got home may have been trying to repopulate your gut, so you may have an effect from that as well.   I am so glad that your tumor was contained, that is great news.  I know after you have been through something like that it is hard (at least for me) to not worry aobut every little thing that is going on with your body, but if I were you (and I am not, and only you know what you need) I would give it a couple of days post surgery to work itself out.  But again, only you know what is right for your body and if you don't feel right, a call in to the doc is always warranted.  Good luck to you and I hope you feel better soon.

diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/12/2008 9:09 AM (GMT -6)   
Lisa, when you have abdominal surgery, your digestive system shuts down for a while, from the anesthesia and the handling of it. Your small intestine, at the very least, will have been moved around a lot during surgery because the kidneys lie behind it. The stomach also was likely disturbed. It can take from a few hours to a couple of days for things to start working again. Also, since you're not eating much, there isn't much to come out.

Sometimes dry toast will feel better in an uneasy stomach. Also, don't drink fluids at the same time as you eat. Try light foods, even if you just eat a few bites every couple of hours it will help your system get going again. Be sure to drink fluids to stay hydrated, but drink your fluids between your small meals. Remember, even though you have UC, you probably won't be going much right now because you're still not eating much.

Are you on any pain meds now? Remember that the commonly prescribed post-op pain meds (Vicodan, Percocet, etc.) are opiates and will also promote constipation.

And for at least the first week, the surgeon is probably the best one to call for problems. GI's are not surgeons and aren't used to dealing with the things that happen following surgery.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 7/12/2008 11:15 AM (GMT -6)   
Hi Guys,

Thank you so much!!! Much, much better today!!!! After a horrible night, I finally feel "empty". I had two eggs for breakfast and a half of an english muffin. I feel like a new person.

I was so scared last night because I was thinking of toxic megacolon. I literally looked like I was six months pregnant. I was so scared of it that I was even afraid to say that that was what I was fearing!! LOL But, everything is working pretty well right now. My surgeon called me this morning to see how I was doing and I asked him a bunch of questions. He told me that the intestines weren't really disturbed but they were kind of shoved aside a bit to get to the kidney. I told him my concerns of toxic megacolon and he assured me that I would have literally been minutes from death had it been toxic megacolon. I was just scared of everything and a bit hysterical to say the least.

Right now I'm trying to stick to a bland diet. I'm not taking any pain medications because I was addicted to opiates years ago and I really don't want to go that route again, so I'm toughing it out. The pain is tolerable and as long as I can tolerate it, I will. I took the morphine and the fentenyl in the hospital, but I didn't fill the darvocet. I actually gave the prescription to my mother because I didn't trust myself!! LOL So right now, all I'm taking is the Asacol and the tylenol when needed. I haven't taken any today because the pain isn't bad. Actually, the only time the pain is really bad is when I try to sit up in bed or if I try to twist or God forbid cough. No pain killer would relieve that kind of pain. Even the epidural didn't help with that.

But, thank you so much for your advice. This board has been a Godsend. You've all helped me more than you can imagine.

Lisa E.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 7/12/2008 11:50 AM (GMT -6)   
so glad the surgery went well. hope u have a speedy recovery
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/12/2008 12:15 PM (GMT -6)   
Do you have a belly pillow to support your incision when you move or cough? If not, just fold a hand towel up into a small square, put a pillowcase over it then use some tape (adhesive tape is good) to fold and fit the case. If that's too much trouble, just use the folded towel. Press it firmly against the incision to help support the muscles. It'll help a lot.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 7/12/2008 1:12 PM (GMT -6)   
Thanks for the suggestion Judilyn. Unfortunately, the hospital didn't give me much instruction when I left, so this really helps. What is a belly pillow? Are they the same as maternity pillows? If so, I'll go get one today. I'm also going to try the towel to see if that helps. I've had a darn tickle in my throat that is driving me insane.

On the poopy side of things, I'm still doing pretty good. I've got my appetite back and I'm no longer nauseous. I didn't take my probiotic today because I think that it may have contributed to my hell day yesterday, so I'm going to wait until all of the drugs that I received in the hospital are well out of my system.

Thanks for the advice and thank you everyone for your support. Hopefully I'll be back to worrying about nothing other than my UC sooner than later!!! LOL

Lisa E.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16022
   Posted 7/12/2008 2:34 PM (GMT -6)   
The pillow idea is great. Every time I have had surgery in the stomach area I always used a pillow getting up & down, in & out of bed. The pressure does the trick. My brother was given a teddy bear by the hospital when he had open heart surgery. They hugged the teddy bear when moving around or if they came in and made him cough. Hugs, Susie


Lisa E.
Regular Member


Date Joined Jun 2008
Total Posts : 47
   Posted 7/12/2008 2:40 PM (GMT -6)   
So what do you do with the pillow? Do you hug it as you are getting up? I'm trying to figure out how I am going to do that because I have to use both arms to try to maneuver myself into a sitting position. I could possibly due it from sitting to standing.

Do you push the pillow in hard? What about with coughing. That's excruciating!!! Sorry so many questions. The hospital was worthless with their aftercare. A physical therapist was supposed to come in and show me the best and safest way of moving around, but just like everything else, that got swept under the rug, too. They sent me home without even a gauze pad.

Thank you so much for your help.

Lisa E.

PS - I know this discussion is kind of off topic. My e-mail addy is Lsielaw@aol.com just in case.
41 - Female/Long Island, NY
Dx - 6/23/08 - Pancolitis
Asacol - 2 pills/3X per day
Asadopholous pearls - 1X per day
Culturelle - 1X per day
Fish Oils
Prednisone - 40mg/decreasing 5mg every 4 days.  Haven't started taking because of surgery concerns.
 
Added Bonus - found a mass on my left kidney during an abdominal CT.  Waiting on surgery to remove my kidney.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30406
   Posted 7/12/2008 5:19 PM (GMT -6)   
Hi Lisa....I do know how many muscles are in that area..I had lung surgery with a long recovery. My incision is from under the right breast to between the spine along side the right scapula.

I was going to suggest the pillow as well (it works like a support)...just take a normal sleeping pillow and wrap it around your body over the surgical area, and over that holding it with a scarf or a towel that's long enough so that you can bring it in tight for when you cough or (heaven forbid) you throw up.

It's good you're eating....do so in small means but more often...keep your body nourished, healing will be better. Are you supposed to limit or increase the fluids?

Keep us updated as to how you're doing. I hope you have someone to help you at home.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 7/12/2008 5:40 PM (GMT -6)   
I learned about the folded towel after my hysterectomy. It's firmer than a pillow and worked much better for me. When you need to move, hold it firmly against your incision. It "splints" the muscles and makes it much more comfortable.

Glad to hear you're feeling better today!
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 7/12/2008 5:51 PM (GMT -6)   
So happy you got such great news!!!
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