Removal of large colon (total colectomy)

[missykay]

Hi all hope everyone is well,

I am a newbie and my first post so please bear with me. I wanted to find out other people experience with having a total colectomy. I have had a removal of the entire large colon in end of july 2012 having got through the most worst part of my life, things have settled down apart from having a numb crotch on one side very weird something to do with damaged nerves i am told, the pain seems to be quite severe all over my stomach area then i get this burning kind of pain on pelvic area and like i am being stabbed with a knife from within all sounding odd, getting alot of backache, whole body aching maybe the cold weather now is not helping dont know, from my info above is this all normal ? last time i spoke to the someone in hospital everything was about wait and see what happens so not very helpful really i am taking parcetomal and codeine however my gp thinks i maybe getting addicted to codeine and is trying to get me off them without the painkillers i would not be able to sleep as the pain gets worser at night has this happened to anyone ?

Now i have had the surgery what can i expect in the future ? constant pain ? bodyaches and tiredness ? going back to see the nurse in march 2013 something about putting a camera through the mouth the surgeon i saw in outpatients was very vague so not really sure. Th surgery has knocked me down for six really and i have been strong but do have my days where the reality of my illness hits me and i breakdown feel alone and no one understand what i am going through so thought maybe i can share my experience and maybe get support on here.

appreciate the advice
keep well
missykay

 

[Jennifer]

Hi missykay, sorry you haven't received a reply yet.

Was your small intestine attacked to your anus or are you dealing with a colostomy? With the camera do you mean a pill cam (where you swallow the camera in capsule form) or an endoscopy (where the GI puts a camera down your throat and can take biopsies if needed, patients are usually sedated)? Have you noticed an increase in gas (sometimes gas pain can be fairly debilitating)? I'm assuming your diagnosis is Crohn's disease?

Constant pain from a surgery so long ago doesn't sound normal to me. I'm gonna try tagging a couple people in here to see if they can be of more help as I have only had a small bowel resection. Nyx, muppet, or Terriernut do you have any advice or info or know anyone else who might be able to help?

 

[Terriernut]

Hi Missykay,

That much pain so long after surgery isn't normal at all. It is definetely time to get in to see your GP, very soon in fact. Have you had any follow up care with a GI?

What medications are you on at present time? Was your diagnosis Crohn's or UC?

:welcome:

 

[Susan2]

Hi Missykay and :welcome:

Like the others, I would say that the amount of pain you are having is not normal 6 months after your operation. I had a total proctocolectomy and my rear end took a long time to heal, but my insides had certainly settled down by then.

I, too, think that you need to see someone before March and someone higher up the chain than the nurse. Or try to make an appointment with your GI. :hugs:

 

[missykay]

Hi all,

Thanks for your reply.

The procedure i have had is Laproscopic total colectomy and ileorectal ananstamosis which is basically removal of large bowel and attaching the small bowel to rectal area which means i move my bowels as normal but more often and watery.

The last time i spoke to a contact i had from the hospital and everything was about wait and see what happens, i have been discharged from the clinic by my surgeon as he said i was healing up well etc

My diagonosis is i have Familal Adenomatous Polyposis (FAP) i have many polyps in my bowel and to reduce risk of them turning cancerous i took this decision to have the large bowel removed.

I do have alot of gas so this could be causing the pain and before the operation i was always constipated too since op been getting piles, cold sore, cystits, severe pmt etc

I guess as the operation has been some time now no one wants to know i have been trying to contact the polyposis nurse but no joy so not sure what i should do really, GP dont find him very helpful really they just say its major surgery you have so will heal with time etc

I guess i will keep trying to get ahold of someone at hospital maybe :confused2:

 

[Susan2]

Do you have a gastroenterologist or other specialist? or did you go straight to surgery from your GP?

 

[Terriernut]

It sounds like you've slipped through the cracks of the medical system. I don't where you are in the world, but you DO need to see a specialist. And a GI is a good start.

Your GP will have to refer you of course. But you really need to see someone very soon. It's been over 6 months and if you are still in pain, wait and see should be over and done with! Sounds like you need to be a squeeky wheel now.

:rosette2:

 

[jetay3]

Hey there missykay,
I had the exact same surgery as you, 2 years ago. I was definitely tender around the belly for quite a long time, but certainly not in PAIN 6 months later. That said, the pelvic 'stabbing' sensation is something I've felt too, but I've never consciously associated it with the CD/UC...

I agree that you should go back to your surgeon or GI if you can - it sounds like there might be something that's just not quite right and hopefully they can fix it up.

Good luck.