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Posted 4/8/2014 12:12 AM (GMT 0)
 Hi everyone, I was wondering if any of you that had a colectomy had times where (pre-colectomy) you

were not having bloody bowel movements but still felt weak, tired, had painful joints or any

other systemic type symptoms that would normally be attributed to the UC minus the blood and mucous, 

and if so did these other symptoms resolve themselves after the surgery? Thanks for reading.

 

                 -Mike


Post Edited (mike&uc) : 4/7/2014 7:24:13 PM (GMT-6)

Posted 4/8/2014 12:57 AM (GMT 0)
The only thing that I remember before surgery was I had body aches all the time. Not necessarily joint pain but like the feeling you get when you have the flu. Maybe because there was so much inflammation in my body....I don't know but it disappeared after surgery.
Posted 4/8/2014 1:23 AM (GMT 0)
I had skin issues and severe fatigue. The skin problem went away immediately; it took about a year to recover from the fatigue.

Sue
Posted 4/8/2014 3:14 AM (GMT 0)
I'm weird. I had my colectomy THEN developed IBD related arthritis. In addition, I developed peristomal pyoderma gangrenosum...or autoimmune skin ulcers around my stoma. But I still have a fair bit of rectum right now.

My fatigue level has decreased 300 percent though!
Posted 4/8/2014 3:31 AM (GMT 0)
The few ache/pain/fatigue type symptoms I had did slowly go away after my surgery. I had a lot of canker sores that would come along with my flares, and that has not changed since surgery. I still get those darn little sores in my mouth quite often. Also, I did not have my entire anal stump removed because my surgeon thought I was too sick to handle the recovery involved with being sewn up down there. I sill experience minor flare like symptoms in the bits I have left. Mucous, minor pain/urgency and a little blood from time to time. I am still a million times better off and healthier than I was before the surgery!!
Posted 4/8/2014 5:01 AM (GMT 0)
I had all those symptoms after surgery and it was from Predisone. After I had the Colectomy and gave enough time for the Pred to get out of my system then I felt great. Maybe you are having withdrawal from a medication
Posted 4/8/2014 1:58 PM (GMT 0)
     Yes, I had those symptoms pre-colectomy.  I still have back problems because I have full blown osteoporosis and three back fractures...thanks to prednisone....otherwise am ok.  My surgery was  in June of 2010.
Posted 4/8/2014 3:14 PM (GMT 0)
 Thanks for all of the replies, but maybe I need to re-phrase... I have a lot of symptoms that would seem

systemic of the UC even when I am not having blood and mucous in my stool. My gi doc who is supposed

to be one of the best says that it is possible to still have inflammation and systemic symptoms without

the signature stool issues. I was looking for some real world experience with this phenom. Otherwise it

would suggest some other auto-immune process but I have been tested for everything under the sun, with

negative results. Going to have colectomy either way on Thurs. as I don't want to be on long term heavy

drugs, but I am also worried that the only thing that I will be getting rid of is the bloody stools. Hope that clarifies a little, and I really appreciate all input.

 

Mike 48

UC for 22 years or so
Posted 4/8/2014 3:44 PM (GMT 0)
      You'll be getting rid of the bloody stools AND the inflammation in your colon, plus, be able to get off all the high powered drugs which are poisoning your system.

 

Posted 4/8/2014 3:50 PM (GMT 0)
@Active~ I wouldn't say your situation is weird at all. UC doesn't go away just because we have our colon removed....so we are always at risk of developing extra intestinal symptoms/manifestations of UC. All we can do is keep on praying for the discovery of a true cure!

@KS~ I don't know who your comment is directed to. What symptoms do you think could be the result of withdrawl from a medication? I think the OP has those symptoms they listed BEFORE surgery and is wondering if they will go away after.
Posted 4/8/2014 4:34 PM (GMT 0)
Yes, thanks UCwhat, essentially I am still sick even when my bowels are working normally (well as normally

as mine can work) and I am just hoping that I don't find that after surgery I feel just as bad as ever minus

the bloody stools.

 

       -Mike
Posted 4/8/2014 4:45 PM (GMT 0)
You guys are all scaring me now- I'm going in for surgery Monday the 14th... My quality of life is pretty good right now, I just have massive strictures & ongoing inflammation, plus hundreds of pseudopolyps.... and it will be nice to be off meds, though I haven't been on steroids in years. I really do not want to continue to have chronic health issues after surgery. I mean, I REALLY do not want that!  
Posted 4/8/2014 5:02 PM (GMT 0)
No one can guarantee that you'll never have chronic health issues again (just like no one can guarantee that people who are perfectly healthy today won't develop chronic health issues in the future). However, it's very likely that removing your diseased colon will improve your health.
Posted 4/8/2014 8:53 PM (GMT 0)
I am sorry, I don't mean to be scaring anyone! It's just that many people don't realize that UC can effect many other parts of your body...it's not just a colon disease. Getting your colon removed doesn't cure UC, it just takes away the organ that is effected the worst and makes us the sickest. And by no means does everyone with UC have extra intestinal symptoms/manifestations. I was just stating the fact that it is possible.

Chances are, if someone has been very sick with UC, they will experience aches and pains and fatigue because their system is so taxed. Dealing with this disease, being malnourished, anemic, etc... takes a huge toll on the body, and even when UC symptoms aren't "as bad", that angry colon and other problems that come from being so sick are still there. Get rid of the colon, and most of those problems will go completely away most of the time.

And yes, I do still have some small UC related issues, but I am 100 percent healthier and happier than I was with UC and don't for one second question my choice to have the surgery!
Posted 4/8/2014 10:11 PM (GMT 0)
Eva Lou don't be scared.
My diseased colon made my whole body sick.

You will be amazed how much better you will feel in over all health once your diseased colon is gone.
Posted 4/8/2014 11:12 PM (GMT 0)
I should rephrase that- I know chronic health conditions encompasses a lot, & most of us will have them at some point or another! I really mean, no more UC symptoms after the colon is out. I've been anemic on & off the past 3 years, am always fatigued, & do have achy joints often. My bowel habits are manageable though- extreme urgency every AM, accidents nearly every AM, blood every day. Then things settle down by 7:30-8:00am. But the urgency is still there, after lunch, etc. I'd like to think that once the diseased organ is gone, voila! Everything else is gone too... my GI keeps insisting that I'll feel so much better once it's out. That I don't know that I feel crappy currently, as it's ny "normal". And I agree! Still a little scared though! PS- good luck Mike!!!! Post afterwards, please! Are you trying for a j-pouch of going with a perm ileo?
Posted 4/8/2014 11:25 PM (GMT 0)
Hi Mike

Yes, prior to my colectomy I definitely had times where I had sore joints, irritated eyes, fatigue and "foggy headedness", even if I didn't have blood and mucus coming out of my butt from colitis.

My arthritis did improve once I had my surgery, and I felt amazing, could think very clearly.

I did find that when my jpouch acted up with pouchitis, my arthritis would worsen, but it was never as bad as prior to my colectomy.

Now that I have had my jpouch removed and gone perm ileo, I feel better than I ever have.

I hope this helps answer your question :)
Posted 4/8/2014 11:35 PM (GMT 0)

Eva Lou said...
I've been anemic on & off the past 3 years,

I should mention that I'm still anemic even though I have no bleeding. I have come to understand from talking to people with no colons that anemia is very common. I go for periodic iron infusions ( I don't absorb oral iron) and I'm good to go. It's the only thing that hasn't resolved itself after surgery but I have come to just accept that it is what it is. I just have to make sure I get checked on a regular basis and don't let myself run down.
Posted 4/9/2014 12:30 AM (GMT 0)
Thanks to everyone for the replies, and I will indeed post, post-surgery smilewinkgrin I am not sure
what route I am going, planning for three surgeries, but might just decide that I can live with the bag.
I think that PoucherIntO answered my question closest to what I was looking for (thank you) although
all responses were appreciated. I would love to here more experiences related to this.
Good luck Eva Lou.

Mike 48
UC for 22 years more or less, diagnosed...... 07 or 08
Never really took much for it until the last two months have been on Prednisone and did one dose
of Remicade. Opted for surgery because I don't want to be on a drug roller coaster for the rest of
my life. Oh, tried Lialda when I was first dxd but made me feel like I had the flu.
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