HealingWell
Search Close Search
☰

Pain post colectomy

Support Forums
>
Chronic Pain
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/30/2012 11:46 PM (GMT 0)
Hi everyone,

First time posting on here and I apologize if this isn't in the right forum but I'm in pain.  I feel relieved to know I'm not alone and I wish anyone who's on this website all the best if they are going thru their own problem.

My thoughts are all over the map so please excuse my grammar.

I had a subtotal colectomy with an ileorectal anastamosis done laprascopically for FAP where I've had hundreds of polyps for years. The surgery didn't go as planned as it took seven and a half hours to complete to remove all 5ft of my colon and large intestine but leaving most of my rectum.  

Post OP was complicated as my new connection was not wanting to "wake up" just yet... so no food or water for 10 days whereby I lost 36lbs!  I started out at 164lbs and dropped below 130lbs.  I was super active and athletic and did sports like windsurfing and kiteboarding, so to lose that much that quick made me incredibly weak and sick. So they drained me via that god awful NG tube (which btw I pulled out after 3 days because I couldn't take it anymore). The Dr.'s then put a PICC line into me just so that I would stabilize and not lose anymore weight.  Anyways, I'll spare you with the rest of my stay in the hospital...blah, blah, blah... 20 days later I went home. I've also been re-admitted or gone back in for minor blockage stuff but that doesn't count lol.

So to speed this up because I can't stand talking about my problem as it consumes every waking second of my life. I have pains all throughout my lower pelvis region, some are extremely sharp and stay for hours then disappear, some pulsate (around my rectum mainly),  I feel sick and have a watery mouth but not all the time, I'm not capable of going out anywhere unless I know there's more than 1 bathroom as it's embarrassing being in a toilet for half an hour,  I use the toilet 20 to 30 times a day (20 would be a good day), I also have issues down there now... all of these things seem to be compounding and getting worse?! What's happening to me???

My GI and surgeon have been useless and don't seem to eager to help and chalk everything up to the "healing period".

My family doctor has been the one helping more than anything and said it sounds like I might have Pudendal nerve damage.

 

Does anybody know about this or have this? I can also give more details if necessary.

Thanks in advance for any response.

Dave

 

Post Edited (Subtotal Nov 2011) : 1/30/2012 8:36:16 PM (GMT-7)

Posted 1/31/2012 3:50 AM (GMT 0)
Hello Dave!…and Welcome to the Chronic Pain Forum! wink

WOW!….I dont have a clue as to what all your DX is all about, but we certainly sympathize with the pain you are going through. I do have a question, and that is, how are they controlling your pain? Have you been seen by a Pain Management Dr yet? I also wanted to mention, that maybe you might find some help over in the Ostomie forum. I know it maybe much different than what you had done, but I think it may be related in some ways.

You are welcome to rant all you want about your pain, and again we all suffer some form of it here…with all kinds of DX's. Keep checking back, and hopefully someone will recognize the problem you are suffering from and will share their experience with you.

I might have missed it in your post, but how long ago was your surgery? Your surgery sounds radical, and if so, it can take many months to fully heal. I myself, had a double lumbar fusion done back in March of 2010, and those can take 12 to 18 months to heal.

Hang in there, and good luck in your search. Please do take some time and visit the home page that list all of the forums here on Healingwell, and see if one of those might be of some help as well.

Good luck, and feel free in making this forum your home for Chronic Pain support.

SEwink
Posted 1/31/2012 5:48 AM (GMT 0)
I had a total collectomy in 2007 and I also had trouble in the beginning and at that time lost 30lbs. I spent a good 3 weeks in the hospital and also was back and forth quite a bit. Like SE said you have not mentioned how long ago your surgery was but I do know it took a good 18mths to 2 years to heal and had a few complications along the way this is a major surgery and takes time. I would definetly see a pain doc to get your pain under control. Keep posting and welcome to HW forum.

Take care, Amy
Posted 1/31/2012 6:17 PM (GMT 0)
Hi Subtotal and welcome to the chronic pain forum. It really does sound like you have been put through the wringer, wow. I am sorry that your gi and the surgeon make you feel as they are, it can get so frustrating putting up with these drs sometimes.

I do not know a lot about your type of surgery that you had just a tiny bit. I imagine its going to take some time for everything to heal, but most of all time for your body to adjust to all of these changes it has gone through. The scars may be healed but that does not mean the inside is completely healed.

Oh, the old wonderful NG tube. Now, that one, yes I know all about it and have had to experience it many times. That is the most disgusting thing I can think of.

I did a search on the Pudendal Nerve damage and found a website called nervemed.com. There was a lot of good information there, way too much for me to list here. I suggest you go to that site and read about this condition and see what you think.

I am glad that you found the ostomies here at the forum. That is an active forum and I feel they can help you with the gi situation. I too think perhaps you may want to discuss with your PCP about referring you to a pain mgt dr. It could be someone like that could help with this nerve problem too. Please keep us posted on how you are doing. Take care.
Posted 1/31/2012 7:18 PM (GMT 0)
Hi, Subtotal.  I'm so sorry you have had to go through this type of surgery.  I had a total colectomy along with losing my rectum 22 years ago and it has turned out to be the best thing I have done for myself.  It's a tough surgery and it does take time to heal.  I have an ileostomy.  Is this what you have too?  I know there have been advances in this surgery because mine wasn't done laparascopically.  It was the old fashioned way where they cut me wide open. 

 

If you are running to the bathroom that much, please drink plenty of fluids.  I was told to start out foods slowly to see how my body adjusted to them.  Then add another food.  Perhaps this is part of the cramping problem.  Have any more tests been run to see if there is another problem you are dealing with?  When did you have your surgery?  If it was recently try to relax about it.  Stress can do a lot to you and your body has been through quite a trauma, too. 

 

Pay attention to what you eat and how it affects you.  Chew your food really well.  This helps prevent blockages.  Keep a journal of what you eat and what happens after you eat it.  This could help you and your doctors figure out what is going on right now.  Once you get those answers, you will be on your way to a great life ahead of you.

 

I would suggest that you pop over to our ostomy forum.  You could get some great help there and also they might be able to point you in the right direction as to  your next move.  Here is a link to the Ostomy Forum.

 

  https://www.healingwell.com/community/default.aspx?f=33

 

 

I know that right now you are upset, stressed and angry about all that has happened to you.  It definitely is a huge change but you should have a great life ahead of you.  Once you get things settled down, you won't be running to the bathroom that much and it certainly won't take you a half an hour every time you do.  I have had a wonderful life since my surgery and have done a lot of traveling overseas, stood on glaciers in the Canadian Rockies, snorkled in the Caribbean, and even parasailed with this type of surgery.  Once your body heals, you will be able to lead a full and enjoyable life, too.  Please let us know what you find out because we really do care about you.

 

Sherrine 

Posted 2/8/2012 11:24 AM (GMT 0)
Hi!

You are not alone.  My daughter (now 13) had a total colectomy at age 5 and she still experiences cramping, sometimes severe.  Her gastroenterologist told us that it is from the scar tissue that results after surgery, which does not stretch as well as the original tissue. 

She takes Gas-X to relieve the gas buildup that often accompanies the cramps, green tea, and hops around a lot. 

On the plus side, she can eat almost anything she wants, is active, and does really well in school, despite the lack of support from some of her teachers.

Hang in there!  It does get better. 

Nina

✚ New Topic ✚ Reply