Total Colectomy,15-20+ BM's, SEVERE FREQUENT anal pain,Tried EVERYTHING,About to get Nerve Stimulat

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Burtman3310
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 3/8/2010 12:04 PM (GMT -6)   
Hi all, My name is Colby and I am a new member. I am about at my wit's end. I was diagnosed with a horrible case of UC in 2001 when I was 20 years old. I had to have my colon removed and get a J-Pouch the next year after tons of different medicines tried to reduce inflammation in colon. My life has been utter hell afterward. I go to the bathroom 15 to 20 times per day and have horrible, severe anal pain in my butt (butthole, sorry). We have tried EVERYTHING known to man to help with the frequency of bowel movements and the horrible anal pain. The only thing that worked is narcotic pain medicines. I have become tolerant to them and do not want to be on them any longer anyway. We have had to schedule for me to receive a Nerve Stimulator Implant, also called a Neuro-Stim, for the pain. I do not want it at all. I am 27 and do not want to have an implant in me and have to carry around a remote that turns the device on and off when I get pain. It has all been awful.


The ray of light has come in that I heard about the Pudendal Nerve and how it can be "entrapped" or otherwise damaged during surgeries in and around the pelvic and anal areas (such as the colectomy and J-pouch) surgeries. Also, many websites I have researched state IDENTICAL problems that I have, that result from Pudendal Nerve damage. Does anyone know anything about this? Does anyone have any help they can give me? The implant surgery is in Denver at the end of this month with the famous Dr. Giancarlo Barolat. He is unsure if it will even work to begin with. Even if it does, the pain medicine will stop and i will begin to have twenty or more bowel movements per day again. (The narcotic pain medicines helped with the pain and also reduced the number of bowel movements I have had per day to around 10, cut in half!).



Please if anyone can help I would be much appreciated. My email also is Email addy removed. Thank you so much. Oh lastly, I have seen all the "big guns" for this horrible disease and procedures: Bo Shen, Cleveland Clinic, Ohio; Robert Wexner, Cleveland Clinic, Westin, FL; Andrej Ukleja, Cleveland Clinic, Westin, FL; Contacting Dr. Renney, Texas, about the Pudendal Nerve issues.



Thank you all again. I also truly hope everyone finds relief in some way(s).



Colby


Hi Colby, it's best not to put your email address in a post on any public forum otherwise you're inviting spammers to come along and harvest it. If you add it to your profile, people can email you from there... Shaz

Post Edited By Moderator (Shaz032) : 3/9/2010 3:59:23 AM (GMT-7)


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 3/9/2010 5:01 AM (GMT -6)   
Have you considered going back to an ileostomy?
Ileostomy for 33 years due to UC

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!


MARIUCCIA
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 3/12/2010 7:53 AM (GMT -6)   
Hi Colby,
 
Thank God, I found someone with the same problem. I just started searching and came upon this site. I could not believe my eyes what you described. I thought it was all in my head as the same for me I have had excruciating pains in the rectal area. I believe it is from the J Pouch that I had in June 2009. I had the total colectomy and J pouch on the same day. Ever since I have had complications. I had 2 bouts of peritonitis, blood clots in the liver, drainage tubes in the butt twice and been to hell since. The pain drains me that I am incapacitated. I am unable to work as I do not know whn the pain comes on. When it does, I take Dilaudid 4mg and at times I have taken up to 20mg to kill the pain. I also take Fenatnyl patch every 48 hrs and Cessamet -synthetic THC. My surgeon washed his hands. Told me that it is a sequelae of the infections and possible scar tissue causing this pain and that with time it shoul heal. I should have had my takedown but with all going on it  is postponed Will see him in August 2010. The pain clinic has been following me, but again feel like a guinea pig. this past Monday tried a treatment of Lidocaine intravenous. It has not helped. Am still in pain and therefore my life is crapty. I feel no motivation. therefore remain in bed and sleep it off with my pain meds. I amsurprised that this nerve damage has not been discussed but then I guess the surgeon would be liable if he admits to nerve damage.
 
At 1 pm I have an appointment with a physiotherapist who has some training with internal organs and said she may be able to help me. She cahrges $95.00 a session but I am so fed up that I am looking for alternatives.  I will mention this Pudendal nerve and see where it goes. Have you heard from anyone else who has the same problem. Looking forward to hearing from you.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 3/12/2010 8:51 AM (GMT -6)   
I am sorry you both are suffering. I suggest you go to www.j-pouch.org That site has over 6000 pouchers who might be able to lend support and advice. A permanent ileo or a k-pouch might be your best option. Have those been offered?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


MARIUCCIA
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 3/12/2010 10:00 AM (GMT -6)   
Hi Sue,
 
Thank you for your advice on the jpoch site. Will look at it. Wish you all a nice weekend.

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 3/14/2010 3:53 PM (GMT -6)   
I have the same problem. I had my total colectomy, with my small intestine attached to my rectum and having major issues. I had major problems even months after the surgery and we found food intolerence. I did well for at least 6 months, them I got even worse. I started having major diarrhea again about May of 2009. I still had an appetite, actually a huge appetite, ate about 4x more than normal people. Went to the bathroom about 15 times a day, mostly diarrhea. Then in September 2009, lost my appetite to a normal appetite, but diarrhea got worse. Went from mostly soft firm to extremely loose and acidic. Now since December 2009, I lost all of my appetite. Even worse, when I do eat normal for at least 2 or 3 days straight, I get severe profound diarrhea, where I am in the bathroom for 2 hours straight 3x a day, on top of the 20-30 times I go a day. Stools are 100% watery, acidic, and I have stomach pains constant. I also been having pain in my sides, both back and front 24/7. When I eat, I even have them in my stomach, where I feel nauseous and sick. Food pushes food, liquids push food, but if I do not eat and my stomach is empty, the liquid would stay at least 30 minutes, but then would go out. I have no energy. On top of this, I developed lyme disease and I am in mid to late stages. This stomach issues happened before the exposure, which was traced to July 2009, when I went to Block Island. Good luck with everything. I hope all works out.
Rectal Prolapse Surgery: December 2006
diagnosed with slow transit constipation: June 2008
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerances (gluten,lactose,msg,etc)


Fishmam67
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 10/25/2012 7:58 PM (GMT -6)   
I am going through hell and back also. I had 4 major surgeries last year where the surgeon screwed up everyone leaving me in intensive care for most of last year. Because he nicked my small intestine in several places I am left with NO large bowel, no rectum and very little small bowel. I open what bowel I have left at least 15-30 times a day and it is sheer agony. The anal burning and spasming is literally unbearable! The ONLY food I have found I can eat is raw fish; anything else causes unbearable pain, particularly in my anal region. I have tried lactose/gluten/wheat free foods and every cream known to man without any relief! I am just about to be taken off pain meds such as oxi codeine because I have been on them for almost a year but the specialist says they have tried everything and to accept this pain will be for the rest of my life! I use numbing cream but it can't numb a part of the burning area and won't numb the internal pain. The specialist say they have tried everything now and have washed their hands of me. I have NO LIFE! I can't go into the city because there are not enough toilet stops and I can't eat out with friends because of intense pain. I can't work because I am either weak from no food or tired from the pain and constant bathroom breaks! I went from 140lb to now 93lb and still losing weight because the only pain relief I get is when I don't eat. The pain is akin to labour pain and the burning is like pouring pure caustic acid on my rear end. Going to the toilet is like passing razor blades! Please, can anyone suggest what else I can do?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/25/2012 8:20 PM (GMT -6)   
My suggestion would be go back to an ileo or a kpouch

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 10/25/2012 8:37 PM (GMT -6)   
I would go to either the Mayo or Cleveland Clinics and get a permanent ileo.

I had a temp ostomy years ago after my colon resection and my life back then was far easier than now (reconnected, multiple bm's for life, lousy insurance, etc. otherwise I'd opt for possibly a permanent colostomy).

I am not struggling as the 3 of you are - my heart literally aches for your struggles Burtman/Colby, Mariuccia and Fishman.

The colon surgeon I go to now for any followups from my resection 13 years ago once sighed after I described what I go thru on a daily basis and said these words - sometimes I wonder if we should even be doing these surgeries (reconnects). In other words, she was implying that the old tried and true permanent ostomies of years' past, weren't such a bad idea. My initial surgeon seemed SO PROUD of his work and being able to reconnect me, so I could use a bathroom anywhere, anytime. Well, I use one ALL the time buddy.......

So don't rule out ostomies - they are not the end of the world!

Okay, my rant about these surgeons is over. Yeah, yeah my original surgeon saved me from cancer. But sometimes I think I should have had a permanent colostomy.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 10/26/2012 7:19 AM (GMT -6)   
These posts are from 2010.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

Fishmam67
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 10/26/2012 7:23 AM (GMT -6)   
I had a temp illiostomy for 4 months. It was not much different from now, instead of a burning butt I had huge burning around the skin where the bag attached. The problem then was that my bowels worked 24/7 so even if I didn't eat I NEVER got relief. It also frequently leaked either while in a public place or all over my bed and dripping down the hallway trying to make it to the loo to change it! Sometimes I went through up to 10 bags a day because of the leaking. It also then burnt a much bigger section of the outside of my stomach which took ages to heal, if at all, because the high acid content immediately burned every part of skin that the faecies touched. They also don't think I'd survive the surgery because of my massive weight loss. (to be honest I wonder if that would at least stop this nightmare!) I also got septicaemia with all 4 ops and peritonitis several times. My liver and kidneys shut down several times and they also had to restart my heart several times. The complications just don't seem worth it. BUT I can't live like this either :..( I am at wits end! Thank you for your advice though. Any other ideas? Why does it burn so bad? Why do some days feel like I am passing razor blades? Why do I bleed? Why do I feel like sometimes my bowel is sitting on the outside of my bottom? Why won't doctors investigate and at least give me some answers? I'd rather die than goo through all of this! There MUST be a better solution??? If I was a dig they'd put me down! Sorry to sound so woeful but the pain tonight is OFF YHE SCALE! Any other ideas? I am sooo desperate! Thanks again

Fishmam67
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 10/26/2012 7:50 AM (GMT -6)   
I saw the posts were from 2010 but praying someone has found an answer by now :( BEGGING for answers...this is worse than labour pains...100 fold! I'm so ready to give up! UNBEARABLE!

Fishmam67
New Member


Date Joined Oct 2012
Total Posts : 7
   Posted 10/26/2012 7:57 AM (GMT -6)   
I am on 2x slow release oxy codiene per day plus 2x oxy norm (immediate release) for pain...I only take it when absolutely desperate like today...it doesn't touch the pain but slows the gut. I'm scared of getting addicted. Is there any heavy duty pain meds I can ask doc for that might actually knock the pain on the head? NO words can explain how unbearable this is. My throat is raw from constant screaming in pain! I live alone btw

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 10/27/2012 9:59 AM (GMT -6)   
I think a permanent ostomy might be improvement for you. They are nothing like a temp ostomy, in terms of managing. Have you thought of consulting with Dr. Bo Shen at the Cleveland Clinic? He seems to solve a lot of very complicated cases.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

Burtman3310
New Member


Date Joined Mar 2010
Total Posts : 2
   Posted 1/23/2013 11:12 AM (GMT -6)   
Sue,

At least two or three yrs ago I did see Dr. Bo Shen in Cleveland at the Cleveland Clinic. We first did a test where he blew air through my anus imto the internal pouch. He said to tell him when I could feel the air. I felt it right away which he said never happens, that people only feel the air after twenty or thirty seconds. This led him to believe that my nerves were very sensitive down there. He had me try Seroquel to desensitize the nerves. This did not work. At a local doctor we did a nerve block of the S2 nerve. While this gave me 100% relief for six hours, it also eliminated all feeling from my anus. When I defecated, I had to look down to actually see I was defecating because I didn't feel anything. I still get pain often whether the feces is liquid or somewhat solid. Maybe I can see Dr. Shen again. Thank you to you and everyone for their kind words of support.
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