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chronic pain from colon -rectum removal surgery, for over ten years...HELP!!

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Posted 11/4/2011 5:33 AM (GMT 0)

I am new on Healing well, but very experienced with Crohn's Disease. One more year will be 40 years . I had a sigmoid colostomy for 26 years , and had my colon and rectum removed in 2001, and now an illeostomy. but i am desperately trying to get information concerning severe pain i still have where my rectum (stump) was removed. I have just assumed it is Pudendal Nerve damage, though i have never had anything done to determine the cause. I know, why have i waited so long? Well, to make it as short of an answer as possible, i have had a horrible ten years since the surgery. I have just been in so much shock that until now, i have not been able to get PROPER medical attenion. I have learned that Dr.'s run out of the room when i ask how to get help for this agonizing pain. I am from Georgia ,and have been in contact with Emory Clinic in Atlanta. I am talking with the RN staff that tels you what kind of Dr. i need to see for this particular problem . I am going through with it this time because i am so sick of being in pain. Can anyone direct me to a post that i can get information or someone that has had this same problem , i am not sure if i am on the right place for this . Thanks a bunch!!!

Posted 11/4/2011 1:53 PM (GMT 0)
hi..... sorry to hear about your chronic pain. there's a special forum for chronic pain in this site and i'm sure they'll know better than we do. there could be ppl with chronic pain here too, but post also on the chronic pain forum:

https://www.healingwell.com/community/default.aspx?f=16

GOOD LUCK!!
Posted 11/5/2011 6:02 AM (GMT 0)
Thanks, i will look on the pain forums. I just feel that covers so much more general pain than from the colon rectal surgery. If you happen to run across anyone that has Pudendal Nerve damage, or Pudendal Neuralgia resulting from the rectal surgery , send them my way !!!!!
Posted 11/5/2011 5:29 PM (GMT 0)
hello gone 4 ever, glad to see you posted this, sorry your in pain, I`m with ya, I`m thinking of getting a colostomy my self because I`m in pain with my rectum after my third surgery, for crohn`s.. were you in pain all the time? say before, during, and after a bowel movement?? my pain started after my surgery and hasn`t let up scence.. I take pain meds but some days a heating pad or sitzs soaks seem to help a along with the meds , my stoma would be at my sigmoid start point scence my sigmoid and 1/2 my rectum are gone because they collapsed grew onto my small intestine and busted through my pelvic floor. I`m collecting information to figure out if I get a bag.. would I gain more or create another problem worse than the one if got now?..good luck hope you find a doctor who give`s you some straight answers and not the usual, maybe/maybe not crap.. doctors seem scared of yes and no answers.. and the people on this site seem to be pretty in the know,, good luck..
Posted 11/5/2011 11:20 PM (GMT 0)
Hi, in the meantime until you find a definative answer they could start you on meds that help with nerve pain. I'm currently taking gabapentin, oxycodone and amitriptyline as have developed nerve and muscle pain all over body after taking Humira earlier this year. I'm still waiting for a dx butt am being tested for Lupus, polymyositis etc. The gabapentin acts sort of like a nerve blocker, it was originally developed for epilepsy but they found also works very well for pain caused by nerve damage. The amitriptyline was originally made as antidepressant and is still used in higher doses (for example 150mg per day or more) as one but in smaller doses, usually up to 50mg per day helps again with reducing nerve pain.

So currently I take 200mg gabapentin three times a day, increased to 300mg in really bad day. 10mg oxycodone three times a day, again can increase to 15mg. Finally take 30mg amitriptyline a night before bed. This combo seems to keep pain at a nearly ok limit, not pain free but darn sight better than it was.

Talk to your doctor about maybe looking at the nerve pain medication as it isn't pain meds in the traditional sense of the word and they are not narcotics and so not addictive like them. I know a lot of doctors are getting tough about px pain meds but the nerve meds work differently and so they shouldn't be too concerned on that front.

Hope you find some answers soon and the pain is able to be got under control.
Posted 11/7/2011 11:10 PM (GMT 0)
I have tried several of the new type neuro pain blockers,and i do not do well with them, like Gabepenten, etc. I was on morphone while on Hospice, and they really got me strung out bad on the Morphine! Or i should say i got myself strung out real bad. so the Dr. put me on Phentenyl(sp?) patches, just puked all week end.so they put me on Methadone ,and it worked good, but i thought it was only temporary. I have been on Methadone for 7 years now, and i feel like it is killing me!!! and the Dr. will not take me off of it. because it is about a third the cost of other narcotic pain relivers. (my opinion) I am currently trying to get info as to whether they can do anything about the Pudendal nerve. I just want to get out of pain so i can get off these dang narcotics before they kill me. It is a mess. god bles all sick people, but especially the ones with any kind of IBS problem.
Posted 11/15/2011 6:36 PM (GMT 0)
Hi Gone4ever

If you come up with any answers let me know my father is going through the same thing as you ! Its killing him I need to try and find some answers !

Thanks for any help you might be able to give !
Posted 1/5/2012 1:39 AM (GMT 0)
Hello, i had a colostomy 5 years due to rectal cancer. I have had severe rectal cancer since 6 weeks after surgery. I am unable to take pain meds because of blockages. I sit on ice a lot. however the pain has constricted my life. Dr's do not have a clue as to why i have pain. Tests show nothing. I did have a hernia in the rectal cavity which we had hoped would solve the pain. It did not.. There are days i can hardly walk. Sitting is almost impossible many days so i lay. I can't help but wonder if the surgeon cut or did something accidently during surgery and how would i ever know? I do irrigate which helps me with not having to empty a bag. If i had to do that plus deal with the pain i doubt i would be here today. Colostomy patients who do not have rectal pain are very lucky. I personally know no one who does.....
Posted 1/24/2012 5:25 AM (GMT 0)
Hi! I had a colostomy in 2008. *** Since then I have had all sorts or lower lumbar nerve pain on my right side--hip, inner thigh, shooting down my leg, etc. At one point I wasn't able to sit or lay on my back or right side. I've been in physical therapy on and off since 2008 with no resolution. My primary doctor put me on Lyrica and Cymbalta which did not help and I believe the Lyrica made things worse. Other doctors have been ass hats---mostly---you need antidepressants.

What I wanted to see OR share with you is of all the doctors I have seen about this issue only one suggested a B12 injection. I had been taking B12 supplements and my B12 numbers were very high---but I wasn't metabolizing the B12. That B12 help with at least 30% of my pain. I finally found a doctor who does alternative medicine and she thinks I have leaky gut in which can cause nerve and muscle damage and considering that I wasn't metabolizing B12 there are other nutrients that I'm not absorbing like vitamin d, and so on.

I'm waiting for the blood work to come back--in the mean time I give myself a B12 shot every other day and am currently taking a series of priobiotics and glutamine and it has help quite a bit. I'm not at 80% of activity, I'm unable to walk for more than 30 minutes before the pain comes back but I'm much much better than before the B12. I can sit and move more and I'm not constantly exhausted from my pain.

***
Rectal cancer in 1997
Removal of remaining rectum, partial colon and scar tissue from radiation 2008
Posted 1/24/2012 5:31 AM (GMT 0)
There is a Dr. Charles Ferguson who I THINK is now at Emery from Mass General. He is a very good doc and very forthright and caring. I do not think he does this particular type of surgery but he may be a good resource for information. He is one who helped me during part of my trials and I really liked him as a person and as a doctor. Rosemary
Posted 1/25/2012 11:11 PM (GMT 0)
Dr Ronald Bleday at Brigham and Womens in Boston, Ma did my colostomy. I had my chemo and radiation at Dana Farber in Boston, Ma... Dr. Bleday on a return visit 6 months after the surgery told me he had no idea why i have chronic pain.... It is unusal but not unheard of... I had a MRI which showed nothing...... I flew back home to Mchigan not any further ahead...

Thank you for responding... I am so fed up with this pain there are days i wish i was off this earth...
Posted 1/26/2012 1:46 AM (GMT 0)
Blondie why can't you take pain meds? Not sure I understand.

Sounds horrible. I've been fortunate in not having too much pain w/my gi issues, but I have had some bad bouts of sciatica in the past, and pain can just take over everything....

The B12 shots sound promising....

Did you ever try acupuncture? It never helped me at all w/my gi stuff, but it did help when I had pain.
Posted 1/28/2012 10:38 AM (GMT 0)
Hi Carbamazepine is good for nerve pain, I have suffered with Trigeminal neuralgia for 20 years and Carbamazepine or Tegritol, is the only thing that has any effect on the pain, I am so sorry to hear you are in so much pain and not receiving the help you should, I did have some pain in the bum after my surgery and it was very bad at times, sometimes a heat pack worked but mostly it didn't, it has just gotten better with healing and time, I wish it was the same for you and I hope you find a workable solution, please, let us know how you are going with it ? Good Luck Maggie
Posted 1/29/2012 8:11 PM (GMT 0)
Gone4Ever, I feel so much for what you're going thru. Had a temp ostomy and severe rectal pain for 4 weeks but it did eventually go away. I can imagine what your life would become if you had to deal with that type of severe pain, day in, day out.

That said I live in the Cincinnati area and my surgeon, I'm told, did a superb job on my resection, etc. He also performed my takedown but then was transferred to Atlanta, GA - his name is Matthew Novak. In case you're searching for colorectal surgeons in that area.

I wish you well.
Posted 2/5/2012 3:03 PM (GMT 0)
I had a Ultra sound on Friday of the butt area... found a huge hernia... this is my 2nd one within a year and i would like to know why? Has anyone else had this? When the surgeon removed my rectum there must be a small opening where a hernia can fall into...... i dont know..... all i do know for sure is it causes chronic pain and no wonder i have a problem sitting and standing...... The reason i say huge hernia is those were the words the tech said as she was doing the ultra sound...

Thank you for any replies, and pain pills have not helped and now i know why plus most of them make me sick and cause blockages then i end up in the hospital....
Posted 2/5/2012 3:14 PM (GMT 0)
What a drag! Good that you found out what's causing your pain, but sorry it has to be something complicated.

What organ is out of place and falling where it shouldn't be? Do you have an appointment with a surgeon? You wouldn't get a hernia just because there was a place for something to fall in -- there's always extra space after you take organs out, and there will be some settling, but not hernias.

Did you have surgery for your first hernia?

For my second surgery, at first they were worried that I had a hernia. They were able to see something through my unhealed butt wound and my surgeon thought it might be small bowel. In that case, she was going to have to use mesh to hold it in where it's supposed to be. However, after I got the CT it turned out that, fortunately, my small bowel was in the right place, and it was perineum, which required a simpler surgery.

Hope you get some answers soon.
Posted 1/30/2014 9:36 AM (GMT 0)

smhair  It has been a year plus since my rectum was removed. Now I am having acute rectal pain. It is severe enough that I can not sit or stay comfortable. I am afraid to contact my surgery team because I know they think I am nuts because of my chronic abdominal pain that I am suffering with since my ileostomy nine years ago. I am seeing a therapist because they say it could be from depression or stress (which I am not depressed). All my CT's show nothing abnormal but the pain is real to me. Is it all in my head? That's how these doctors are making me feel. I had all my surgeries at the Hershey Medical Center. This whole experience has put a big void in my life. I just want to experience some sort of normalcy. Is it possible to have a pain free life for once. Could anyone give me advice on how to relieve this rectal pain? Thanks for letting me vent.

Posted 3/19/2014 7:46 AM (GMT 0)
hello all...ihad colon cancer in january of 2013 had my entire colon and rectum removed and a permanent ostomy placed on january 16th..........................since then i have had very sever rectal pain very serious abdominal pain and the surgery team run from me like i have the plague.....i finally got into a pain clinic but as of yet not much help...they have me on gabapentin 600mg 3 times a day...oxycodone 10mg 4 times a day and it barely helps...if at all..cant sit or stand for very long cant lay on my back..have to sit sideways so not on my butt...recently have had a serious abdominal hernia..peristomal hernia that is very serious if i stand up my abdomen is destinded about a foot..not a joke...also have a serious ulcer like wound right next to my stoma as a result of ostomy bag leaks..due to stoma being distorted by massive hernia...was put in hospital but again the same surgical team sent me home with no treatment other than antibiotics due to the ulcer being infected by the stool....all this is happening at the university of kentucky surgical team headed by dr.sandra beck...seems they have circled the wagons and are against me...i truly dont care if she made a mistake or accidentally hurt me..i just want help and want to not hurt....seen a dr. in indiana as i was there visiting and had serious pain..he told me ct scan shows serious scar tissue in rectum and abdomen..a serious hernia and crimped intestine...he also said no doctor will touch me as surgeons dont like to operate on or over another dr.'s work especially if there is signs of previous surgical error or damage......i dont know what to do feel like i want to just check out cant take it anymore...i scream in pain and no one hears or seems concerned...have gained 129 pouds since surgery as a result of inactivity and weight gain from meds.....I am dying seriously...........nerve damage in rectum serious hernia in abdomen that they will not fix...[color="red">someone][email protected]</a> or

Post Edited By Moderator (nvrthesame98) : 3/19/2014 2:49:37 AM (GMT-6)
Posted 3/19/2014 9:16 AM (GMT 0)
Hi Spencer and welcome to HW. I removed your phone number from your post as it can be picked up by spammers and its too much personal information displayed seeing as how you may be using your real name.

You can however go to edit profile options and make it available there if you wish.

I also am not from ostomies but Chronic pain forum here at HW but saw your post and wanted to say Hi and explain removing your number and letting you know your not alone in your pain.

I also happen to be a native Kentuckian who is now a transplanted Flordian due to the effects of Kys harsh winters on my CP. Also of course am familiar with UKs policy on pain management or rather lack of it. Most friends,family, people I know at home seek pain care outside KY these days. How sad is that?

The bigger tragedy is there unwillingness to help you. I know this may be difficult or even impossible but there are surgeons who will take over your care,the best way to do that of course is living in their area and outside UKs reach.

If you have family elsewhere is it possible for you to visit? Long enough to find a dr that will see you? The search may take a few tries but if you let them assume you live in that state or area now and cannot return to UK and your looking for a dr to take over your care and get to the bottom of whats causing all that pain.

UK has so many satelite clinics that going somewhere in state will likely land you right back in their care. If you cant possibly get outside Ky then I would try to land an appt with Louisvilles University Drs or clinic.

Im sure sorry your suffering so and hope you get some relief soon and a DR willing to help,there are good Drs out there to treat CP they are just really hard to find.
Posted 3/20/2014 1:46 PM (GMT 0)
Hi All,
Sorry to see so many sufferers of rectal pain. I started having it about 10 days ago, approximately 8 weeks post takedown surgery. I also started having more formed stools around the same time so I wonder if it is a matter of things having to stretch. (In my case anyway) I have 2cm of rectum left- that is all. No sigmoid.
I take hot baths and when it gets really bad I have to lay down and take a lorazepam and some Tylenol (can't take opiates because they constipate). Sometimes it hurts to walk. I can sympathize with my husband now who has had lower back problems off and on for years.
Wow I didn't know how much this cancer/ileostomy reversal surgery would change my life. I don't see how I'm going to make it to my son's baseball games. Ugh!
God bless all of you.
Kay
Posted 3/22/2014 2:38 PM (GMT 0)
Go to a PAIN MANAGEMENT Doctor. They can do nerve blocks in the area.. even specific pudendal nerve blocks. Also there are many other nerves in there and they can figure out which ones might be the troublemakers. If the nerve blocks are successful they can move on and do nerve ablations. Also there are specific meds that can help together with the nerve blocks.
I am a testament to the success of this!
I go to cleveland clinic pain management.
Posted 3/22/2014 4:38 PM (GMT 0)
ddd45

kinda odd but was back in the hospital this week and the surgical team have set me up with a pain clinic to do just that...the nerve blocks and such...am soooooo looking forward to the treatment..have heard great success stories...I will keep you guys posted as to how it goes...first appointment is tuesday!
so maybe their is relief on the horizon.

thanks again
spencer
Posted 8/6/2014 5:44 AM (GMT 0)
To gone forever

I understand what your going through as I have Crohn's and a rare disease called hydronitus superativa and it has caused lots of fistulas in my rectal area. I have had my rectum removed due to severe pain but since the surgery the pain has gotten worse. I take 150 mg of hydromorph contin 4 times a day with a 24 mg of hydromorphone as a break through and yet the pain continues. I haven't been able to sit for about 6 years so I either stand or lay down, but since the surgery even standing has become a horrible pain. I see many doctors and all they can say is that they are at a loss of what to do. We are now going in for a bladder removal maybe that will help. Why why why.
Posted 6/9/2016 1:03 AM (GMT 0)
Gone4ever,

My mom has been a chronic pain patient due to severe rectal pain post-surgery for 16 years now.. She had a colorectal tumor removed and was given a permanent colostomy. The assumption is that her pain was caused by nerve endings being severed in the process. Since 2001 she's been on oxycodone, methodone, more oxycodone, tried lyrica, gabapentin, etc, and now has been on 15mcg Fentanyl patches plus oxycodone for the last year. As you might imagine, she stays in bed nearly all the time. Over the years, I've seen these meds take a tremendous toll on her mental and physical well-being. She lost her house last year due to neglect. She can't take care of herself but is too paranoid and fearful of pain to be open to help or follow through with procedures to investigate what's going on down there. She used to be an incredibly clean, organized person, but for years now hasn't cared, or been able to focus on anything. She is currently in an awful nursing home after running away from living with me temporarily because the doctors where I live in Oregon couldn't manage her pain unless she went to a rehab as an inpatient to get her dosages down first, and that terrified her. She feels so alone so much of the time. She can't even focus to learn to use the computer anymore. We are all in need of some community and hope. Sometimes talking with people who understand is some of the best medicine. How have you been for the past few years? I hope things have been improving for you, and I'd love to be in touch.
Posted 7/14/2016 3:10 PM (GMT 0)
So many people hurting, and seems fewer doctors who can help. Here in Connecticut they just passed a law limiting opiod prescriptions, and my GP just told me he can no longer prescribe hydrocodone for my pain. Have had multiple surgeries for ulcerative colitis, currently have no colon and rectum removed 2 years ago. Long term prednisone use caused spinal fractures, lost 6 inches in height and now have pain from spinal nerves being pressed. Also pain from adhesions and kidney stones as a side effect of ostomy. Aside from opiods does anyone know if TENS units help? OTC meds not much help and not sure what long term use will do to my liver. Fewer options because I'm on Medicaid.
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