Need advice on persistent sphincter issues?

Greetings fellow ostimates, I find myself in need of some advice. Its been ten years since I had my colon removed and six years since I had surgery for severe blockages that was a complete success, BUT, for the last five years or so I've been having a real pain in the ass, let me elaborate, when I had the coloctomy the surgeon seemed quite pleased with the fact he saved my rectum and said rectum has a spinchter that is driving me nuts, so much so that while its working its impossible to urinate, so I sit there on the throne and wait and wait some more as that miserable spinchter goes through many cycles, just like the real thing but without the discharge until finally I give up and try again later, sometimes up to eight times a day and try to catch that moment when my spinchter is having a nap or getting ready for another round of beat the bladder spinchter and so far its winning even with the medications my doctor ordered, in a few weeks I have to have an ultrasound, after I drink three liters of water, which would not be a good time for that rectal spinchter to cut in, and believe me that is cause for concern. And after that I hope to see a surgeon, the only one I trust, and see if he can cut that sucker out as I cannot see it being any use in the future. If anybody has ever gone through anything like this or know anything about it I would be very grateful, thanking you in advance, Ed

Ed, have you involved a urologist in this discussion? Specialists can sometimes see issues and define problems through their own unique lens. Maybe the culprit is not your rectal sphincter, but some other sucker like an enlarged prostate? By the way, I found it a lot easier to pee while standing...which, I am sure, is a male thing. Good luck!
PB

Hi there Gutenberg.

It might be the case that you have an adhesion between the bladder and the rectum which is causing the bladder to stop working when the rectum/sphincter is working (by pulling on it and blocking the urinary tract). You could try a muscle relaxant, the best I know of is the herb lobelia, which is fantastic at relaxing that area (it has been a godsend to me). There are meds that do the same thing I think, but lobelia (approx a tsp.) is the most effective thing I've ever used.

Other associated causes could be diversion colitis (inflammation of the rectum due to diversion of the fecal flow if you didn't know) or just general inflammation in the area. The medical option for diversion colitis would be to apply fatty acid enemas, or for just general inflammation you could also try general anti-inflammatory meds or a healing enema of George's aloe vera, slippery elm, and marshmallow, which is very soothing.

Then again, it could be a very localized sphincter problem.. difficult to say.

Proctectomy would be one medical option (the last option), but if they're there I would look at maybe trying having the adhesions surgically removed and/or having an ileorectal join made. It could be worth a try, and if that doesn't work out, there could be the proctectomy option. There are alternative methods available to dissolve adhesions (which I suspect you have), and the best alternative method I know for this is by Jini Patel Thompson, which I have had some success with personally:

http://www.amazon.co.uk/Jinis-Healing-Guide-Treatments-ebook/dp/B00EO46PIY

Hope this helps!

All the best,

Patrick

Hi, when I had my ileostomy, the rectal stump left too. After about 10 years, it still drained and felt like I had to go. It was finally removed because the doctors were afraid I would develop cancer of the rectum. It was an uncomfortable procedure with a protracted healing period. I have never had a problem since, and that was in 1968. Good luck to you in whatever you decide.

Hey Gutenberg, Skidder here.
I had an ileostomy performed in June 1970. In August 1979, I had a total proctocolectomy. Summing that up, I have no large intestine or rectum, and after 43 years, I only have 290 cm of small intestine remaining. I too had the rectum removed because the ostomy was irreversible and the sphincter was no longer needed. It was a good decision as I have seen a lot of posts about individuals having many problems. I truly believe if it's not being used and there are problems that could go along with having the sphincter in place, have it removed. Having an ostomy is a full-time job! Having the other end 'doing its thing' would be a pain in the ass!
Good luck, Ed. It's a personal decision. My decision was the best for me, and I have no regrets with that decision. It is a subject/action that will require some serious thought on your part, but ultimately it is YOUR decision. Thinking about you and hope you come out of all this happy and healthy!

My Ostomy Journey: Jearlean | Hollister

OK, while on the topic, I have a few questions myself. I have an ileostomy since May 2012. It is my second one as the first one had a problem. They suspect it was UC, but I am still not 100% clear on that. I may have to ask the hospital for the pathology report as I was too busy fighting for my life back then. My second surgeon doesn't think I am a good reversal candidate because of the UC. I still have about 6 inches of rectal and have the issues of shedding. Fun. Sometimes I feel like I really have to go and have to fight it. I'm afraid of what giving into it would do! I know I had hemorrhoids from all I went through before the surgery and suspect they are still there because when I get those urges to really "go" I do get some redness on the wipe. I am considering having a scope check on the state of affairs "down there". The surgeon said he could do that. Or who should I be seeing about this? I do not want to have a proctocolectomy for now if not necessary. We don't know what advances medicine can bring and I would like to leave my options open. Any experiences or input on any of that would be appreciated. This is all such new territory for me.
Thanks
L

Hi, I read your post with interest. I am an RN but also an ostomate, having had an ileostomy in July (believe me, I'm a better nurse than patient!). But your problem is not only related to men. I have to sit in a chair with some recline or position a pillow behind my lower back so that I don't sit directly on the offending area, as I get tremendous rectal pain. This can be just sitting or walking or, as you mentioned, passing urine. It could be caused by adhesions, it could be an old rectocele that hasn't been treated surgically (most people in our position would have a rectocele of varying degrees). However, surgeons generally believe that as the rectum is no longer being used, it is no longer a problem (not true). A rectocele, for those who don't know, is an outpouching of the wall of the rectum which bulges into the pelvis, putting pressure on the bladder. As I said, although the rectum is no longer used, that doesn't mean that there isn't something caught in the rectocele, as "matter" can become lodged for a very long time. Alternatively, as the colon has been removed, there is no support from above, which can cause a rectocele to outpouch even when empty, as the structure is weaker.
I mentioned this to my GP and explained that I get pain plus an overwhelming need to go to the bathroom, but of course, for nothing to happen. On examination, it was found that although not fecal matter, I had barium and the paste that is passed into the rectum when I had a defecagram performed several weeks prior to my surgery. At the moment, we are leaving it alone to see if the body absorbs it, but I thought it might be worth mentioning. The easiest test to check for a rectocele is a digital rectal exam and can be performed by the GP. I do think that you really need to be investigated by both a colorectal surgeon (whoever performed your surgery) and a urologist who can then compare notes to see what is going on. Lastly, the rectum has an awful lot of nerve endings which don't need much to set them off, giving you phantom poo pains. I hope you get a medical answer to your problem, as I know how unsettling, not to mention uncomfortable, this is. PS: The same nerves that tell us to pee tell us to poo! So it could even be rogue nerve pains. Good luck and God bless. Lorraine. I hope I haven't been too technical!!

I forgot to mention that my doctor has prescribed a small dose of Valium taken three times a day as they relax muscles and Lyrica which works on nerve pain. Hope this helps.

Hello Gutenberg - I don't think that you need to have any physical scarring/adhesion problem down there in your undercarriage.
I can remember having that horrible deep rectal pain after my surgery - it felt for all the world as though I needed to have my bowels open, but I wasn't connected at that time. So, I think it's a pain/nerve conduction pain with your brain wrongly interpreting what is going on - a bit like 'phantom limb' pain. Let's call it 'phantom bottom!'
If your colorectal team declares you to be in fine working order, I would ask for a referral to see a pain specialist (after trying to see if Lobelia worked, and I'd only do that if I was sure that Lobelia wouldn't interact with any other medications that I was prescribed). Pain specialists are great these days, they can effectively nerve block areas and prescribe effective medications that alter the way our brains interpret signals.
Good luck.

Hello Vikinga, Skidder here.
I don't blame you for holding off on a proctocolectomy right now. I would have too, but really didn't have a choice. Once it was done/healed etc., it was one more thing I didn't have to deal with as you know from reading other posts it can be an ordeal.
Like they say Vikinga, when one door opens another one shuts. Oh my, I can't believe I said that! Take care and hope you get that taken care of soon.

Ed, I could have written your letter myself. In the past 3 years, I have had rectal cancer surgery ending up with a colostomy, hernia surgery, prolapsed stoma surgery, and fistula surgery. I feel like I still have an active rectum and that I am sitting on two golf balls that discharge quantities of bloody mucus every 1 1/2 to 2 hours with an occasional three-hour span if I am sitting down. These discharges are disgusting and often have uncomfortable to painful spasms. The tie between the urinary sphincter and the rectal sphincter is especially tiresome and disgusting to deal with.

I have consulted four doctors, all of whom have said "Live with it." Regarding surgery to remove the rectum, the surgeons say "No" because of my age, 86 years old. They would do it if I was in my fifties. They also said 20% of the time the results were not satisfactory and that it would be a long recovery. So, I "live with it," but I sure would like to have my life back. Good luck to you.

I thank you all for your posts regarding my nonexistent bowel discharge condition and would like to offer this tidbit of trouble I've endured for many years now. I have polyneuritis in the mid thoracic spine and the pain comes around to the front of my chest. Now in the past I've had severe chest pains and the only way to distinguish between a heart attack, (been there), and the polyneuritis and that is an electro cardiogram, and this reminds me so much of what I experience with my rectum spinchter and I have been taking medicine to help this out, but its still a race to empty the bladder when I feel the rectal spinchter is having a nap and try to beat it to the punch. But even driving around town I get this feeling I have to go and its one big pain in the ass. This week I have a couple of doctor appointments and I'm hoping for some relief, especially after having to drink three liters of water before having a Ultra Sound and that would not be a good time for the wrong spinchter to make an appearance. But now with all your suggestions I'll be able to bring them up with my doc and hopefully some good will come of it. Once again I thank you all for your posts, with gratitude, Ed

Hi Gute - It's been a long time since I posted here, but it seems we are still on the same wavelength because I have a surgery coming up in December that will be addressing the exact same issue, indirectly.

I've sat on a cushion for 11 years now because of the pain (in my case) in the remaining rectal stump and anal sphincter. The December surgery is to repair a vesico-vaginal fistula and a vesico-"blind rectal pouch" fistula - in other words urine is draining through all three places and is a nasty mess. The surgical team wants to go in "from behind" rather than down through the already over-used abdominal incision and to make access easier they want to take the anal sphincter out.

This problem has been going on since 2009, about 6 months after I had my "permanent" colostomy. That's in quotation marks because as long as I held on to my sphincter I could also hold on to the irrational idea that my anatomy was still somewhat normal and "maybe someday" there would be a way to hook me back up since I have almost all my small bowel and at least a third of my colon.

Like others here, I've suffered pain and discharge which I treat with steroidal suppositories, drugs, and laying down a lot. I can't sit on any hard seat or even an easy chair for long without pain. Consequently, I can't work, and even driving any distance is a nightmare.

All this suffering in the service of an irrational pipe-dream! I know it's a dream because I've had all the tests and no one (except me?) believes that the sphincter can ever be useful again.

Bottom line, Ed - if you'll do it, I'll do it! Your friend, Pinky;

Ed, good luck in getting a medical resolution to your problem. When I could not void, the pain was incredibly intense. Let's be grateful we have access to competent doctors who can fix our plumbing and stop the hurting. Keep us posted on the success of your appointments this week.
PB

Hi PB, I appreciate your concern and I'm getting on edge, Friday I have the ultra sound and I probably won't hear from my GP until sometime next week and I'll have to call him to find out what the hell is going on and if everything is negative I'll see a local surgeon whom I trust after all the screw ups he had to take care of for me. When we know something for sure I'll let you know, Ed

Hi Pinky, after reading your post I feel for you and for a while I thought something would come up to replace my bowel as they took everything except the rectom, alas all for nothing and to make matters worse I never had any bowel problems until a "specialist" operated on me for an aneurysm and started the ball rolling going for three more surgeries and finally a local surgeon took me under his wing and cleared up a lot of problems caused by other "specialists".
Anyway Pinky I wish you the best of luck and a quick recovery, your old friend Ed

Hi Ed,

I'm sorry to hear about your "pee" issues. Our plumbing may be different, but just wanted you to know that I've heard from other people, both men and women, that they had issues after surgery. Like some others, my doctors left the rectum when they originally did my surgery when I was 15 (50 years ago!). I spent the next 4 years trying to keep that rectal stump healed, but it didn't happen. I needed enemas and other meds to try to keep the UC inflammation under control. At 18, I fought with my doctors and parents to allow me to get it removed, and they made me wait another whole year to be sure.

I ended up with bladder complications after surgery. Nerves to my bladder must have been "cut" because I had no sensation and had to be catheterized for nearly 3 months until my bladder started to work again. They were planning to do a ureterostomy if it didn't work.

I was given Valium too, and every few days, the catheter was removed, and I had to give it a try. When I inadvertently peed, I realized that I had no sensation, and to this day, still don't. I had to learn to "bear down" to release urine, which is really an unnatural act. Supposedly, we're supposed to "release" the sphincter, and the urine should flow. NOT!

I still have control, so I don't pee in my pants, but it takes a concerted effort to get the stream started.

The relatively new urologist I've been using "likes the way" I empty my bladder, considering that I don't know if it's empty or filled. Glad he "likes" it. I have had 50 years to develop the method.

Despite the removal of the rectum and anus, I still get anal pain and twitching on occasion, and that does interfere with my intent to pee. I also have a problem sitting on a bicycle seat as it pushes on scar tissue.

I don't know if any of this helps, but thought I'd share....

Hey Ed, looks like you got a lot of good advice and support.  All I can offer is a prayer that they find something Friday that leads to the remedy you deserve.  

Wishing you the best,

Mike

I wear pads all the time but have found after a few years that I don't now have a problem when I'm out. I shower first and use hot water on my seat which dumps the anal glands for me and I wash myself and then send the discharge down the drain. Standing up after a long sit is a problem and so is laughing if I'm standing. Good luck with yuck!!

Also found that a little heat with the hair dryer helps my wafer stick and also makes it a snap to attach the bag to the wafer.

Hi everyone and Immarsh, I get you! I have had no sensation from the chest down for many years and have always, since a child, had pee and poop problems. Most times, I was given Valium to help me "relax" and allow nature to take its course. Well, we all know it wouldn't and didn't! Luckily, my usual specialist was unavailable and the first time I saw his stand-in, he just looked at me and said he was so sorry I had been given the brush off for soooo many years. He told me he thought he knew what was wrong and organized for tests to be done immediately, including blood work.

It was a long day but a very lucky one for me. Despite many cystoscopies and colonoscopies, nothing was ever really discovered. But after listening to me intently, he really understood how serious this was for me. Not just because I had to always carry a full change of clothes, wash bag, pads, everything, but I was having very serious pain issues. Many people may wonder how can you have pain if you are insensate, well it's easy externally, no feeling at all. Internally, due to multiple surgeries, I had severe nerve damage sometimes called barbed wire nerve endings. Meaning the natural urge to pee doesn't register with the brain, but the nerve endings that should have given me that message had found a different route through the body and to the brain, causing unbelievable pain and no amount of sitting and trying to pee would work. I had the same problem with my bowel where the normal motility of the bowel felt like someone was torturing me with burning hot knives.

He identified that when I had a full hysterectomy due to cancer, whilst they had repaired the rectum which was damaged and the multiple vaginal repairs I had, they hadn't removed enough tissue so a tumor had formed invading the abdominal cavity, the outside of the bladder and ureters and kidneys, and also the outside of the bowel adjacent to many organs and the spinal cord.

I have had an ileostomy in August last year and further surgery that I am still recovering from in December. I am still undergoing chemo and have been told that I will need to have it monthly for the rest of my life, plus a product to boost my immune system.

Although it's irreversible, I don't mind a bit as finally I am, for the most part, pain-free. But rather than have a urostomy at this stage, I have elected to have a permanent catheter (just until we know for sure that we have got all the metastasis and finished that part).

I hope my story helps. I don't mean it as a bitch session, just to say to others, trust your instincts. I was a nurse, but because I believed I was seeing the best doctor, I never doubted his diagnosis. But all along, my instinct was telling me differently, and I am ashamed to say that I wasn't a novice. I have been nursing since the late seventies. God bless you, and I wish you a long, healthy life.