SJB, although PTNS uses an acupuncture point to access the nerve I believe it is quite different from traditional acupuncture. Here is some more info about the procedure:
A fine needle is inserted into the skin just above the ankles at the SP6 acupuncture point to access the post tibial nerve. A small electrode is then placed on the needle from the TENS unit (battery powered stimulator). A mild electrical current is passed through into the nervous system. The patient may notice the big toe bending downward as well as an outward stretching of their outer toes. PTNS should never cause pain. The protocol requires a once a week 30 minute treatment for 12 weeks. Results will probably take at least 6 treatments for you to see your symptoms change. After the completion of the 12 treatments your physician will discuss your response to the PTNS treatments and determine how often you will need future treatments to maintain your results.
flsunshine, there are also the option of an artificial sphincter, did your surgeon ever mention that? That may be more appropriate than the colostomy and also seems less limiting. I am glad that you are seeing a GI specialist. The diarrhea you are experiencing sounds very problematic. If the diarrhea can be resolved then maybe the incontinence could also be improved. Definitely have them test you for celiac disease and lactose intolerance both which can cause terrible diarrhea. Have you ever tried any elimination diets? Or are there any foods that seem to make the diarrhea worse? I hope they can find out what is wrong.
Babygirl, is PTNS therapy available in Canada? Apparently it is available in Europe for fecal incontinence. They are just waiting for FDA approval here. Wonder how long that will take...
flsunshine, there are also the option of an artificial sphincter, did your surgeon ever mention that? That may be more appropriate than the colostomy and also seems less limiting. I am glad that you are seeing a GI specialist. The diarrhea you are experiencing sounds very problematic. If the diarrhea can be resolved then maybe the incontinence could also be improved. Definitely have them test you for celiac disease and lactose intolerance both which can cause terrible diarrhea. Have you ever tried any elimination diets? Or are there any foods that seem to make the diarrhea worse? I hope they can find out what is wrong.
Babygirl, is PTNS therapy available in Canada? Apparently it is available in Europe for fecal incontinence. They are just waiting for FDA approval here. Wonder how long that will take...
Lilypetunia, Yes my surgeon did discuss with me the artificial sphincter. I poses a lot of problems with infections. My big failure was internal. Miraculously I don't have a lot of nerve damage mostly the interruption of the muscles/sphincters. I know it is 'going to happen' but I just don't have the time to 'get there'. I have been tested for celiac and all the others. As a matter of fact the diarrhea started when I was diagnosed with having H-pylori back in 2004 after going on a 'vacation cruise'....Yep. Usually only found in 3rd world countries. I was also retested and came up negative. But was diagnosed with IBS non-descriptive. I have even let them put me on anti depressant, anti anxiety, anti diarrheal, anti spasmodic, and so much extra 'fiber' supplements I could clog the international canal. I take a resin (cholestramine) before I eat to cut the excess bile down. I am just wondering if someone might have missed something somewhere? Although, I have been told that my gallbladder was probably not working for many years when it was removed two months ago and that may have been causing the diarrhea each time I eat. But things are much worse now. Hummm? I have gone through the food diary thing and elimination. I do know I can not eat nuts or anything with seeds etc. because they cause much pain.
I have to say that I was talking to an old friend that I had lost touch with many years ago this past week and she told me she has the same problem as us but hers was determined to be from a car accident where her back was severely damaged and she had it 'fused' almost her entire thoracic spine and lumbar...which I too have damage but would not let them fuse my spine so I deal with the pain. Anyway, I thought that since they 'said' my nerves were intact that was not an issue. She says that the nerves from the spine could be pinched and cause it. So....I have some digging to do as if I needed more...
Good news 'finally'. I went to my primary care Doc because I got another UTI after having the flu (wonderful thing to have when you have control issues...not fun). Anyway, we discussed taking me off a medication that has a possible side effect of diarrhea. I decided to go off the medication to see if it helped. It has! Although, I also increased my intake of Metimucil to twice a day. I have much better 'control' now. Although, I have a great fear of being out in public still if my body decides to reject something I have eaten. I have not made my mind up as to if I will attempt another sphinteroplasty repair. For now I am happy to have more control and not feel trapped in my home 24/7. I am also being more 'diligent' with my kegels and it seems to help a lot.
The Following User Says Thank You to flsunshine For This Useful Post: sjb (01-11-2011)
Awesome! This is such great news! I am so glad you have better control and feel that you can get out. Oh, and I am so glad the kegels are working. I am not allowed to start doing them yet but I am definitely starting them as soon as my dr. says it is ok.
It seems like consistency of the poop is key. I have found if it is either too loose or too hard the problems get worse. It is really hard to find the perfect balance though. I will try some metamucil and someone else on here also mentioned flax seeds. I have also found that a probiotic really helps to keep things in check.
Best of luck
hugs
Lillypetunia, I forgot to also mention that I started taking 'align'. Although, I hear that it takes a few weeks to get the full benefit of it I have only been taking it less than a week. The metimucil caused a lot of 'gas' but the trade off for me is worth it. I too read about the flax seed and after I finish the metimucil I think I will try that... Since I quit taking the metformin (medication for diabetes) that my GP said can cause diarrhea I have had less. And I am being very careful with my diet since not taking anything for diabetes. I hope that your recovery continues to go well.
Hi everyone, here is an update from me. I am now almost 11 weeks post-op. I've started using my biofeedback device, which helps me to do kegels. Things are slowly improving and are not 100% yet. I still have to rush to the toilet if I wait too long, just not as much as before surgery. But I can't keep it in indefinitely, just longer than before. What helps me is not to compare with how things were before birth (normal) but to compare how things were after the primary repair (birth) with after the secondary repair (splasty). Otherwise I'll just get depressed.
Here is a comparison to how it was like 11 weeks after birth vs 11 weeks after s-plasty:
Immediately after birth I had to really drop and run, now I can walk relaxed to the bathroom and sometimes even wait a little bit, especially if I'm sitting. If I wait too long I do have to rush. After birth it started coming out on the way to the bathroom, as soon as the urge hit. Now it doesn't start coming out immediately, although it will if I wait too long. If I have to go and don't have a bathroom and have to walk for a while, this makes things worse and I really have to rush and it will "peek out" a little bit. Sometimes I still feel that things will never be the same again, but I try to remain positive, I'm only 11 weeks post-op. I just continue doing these kegels and I won't give up.
It gives me comfort to think about how things improved in the years after birth. Even though things never became really good, they did become much better over the years, even with a lot of the muscle not intact back then. And my muscles function better now than before surgery, so my starting piont now is so much better now, even though things are not perfect. Now that I've had surgery and it hopefully hasn't come undone, I also think of recovery and improvement in terms of years. This is a long term project and I will do my kegels till I drop.
I live a normal life, commute into work, do normal daily activities and am not afraid to not have a bathroom in the immediate vicinity. I would however be afraid to be on a boat without a bathroom or go hiking in the mountains for a whole day or something of that nature. I do like to have a bathroom that can be reached within 10-30 minutes or so, depending if I'm sitting or standing/walking. When sitting I can hold it in much longer. So in that sense I'm not 100% free. But it works in everyday life and I can do everything I need to do (work, drop off kids, go to the mall etc) with no problems.
Flsunshine, I'm glad things are going much better for you now that you're off the metformine. And I'm glad you're doing kegels. It's the only thing we can do to take things in our own "hands", apart from having surgery of course. I totally agree about the consistency thing. I don't have any problems with diarrhea or hard stool, I just have a naturally good consistency, which really helps. I really don't know how I'd do with diarrhea to be honest, I don't think I would be 100% continent of liquid stool if the urge hits. I'm pretty sure I'd have accidents if I was far from the bathroom. But I haven't had any diarrhea, so I don't know. Just so that you know that I am not 100% cured, I just feel an improvement and work from there.
Lilypetunia, I was offered PTNS therapy before I was offered surgery (I live in Europe, so I don't know about Canada). The surgeon said many women are helped by it. However I opted to have the surgery done, I didn't want to go down the PTNS route just yet. I don't have any nerve damage and I want to have "natural" control if possible and don't want anything implanted into me. However, I do see PTNS as an option later in life if it would be necessary. Maybe they'll have even better techniques in 10-30 years time, I really hope so.
Anyway, here was my long and rambling update, hope it was of help!
Last edited by Babygirl43; 01-12-2011 at 06:50 AM.
Hey babygirl I am so happy that you are doing well. My experience is very similar to yours with the results. I have MUCH better control after the s-plasty, but I do feel like a need to rush to the bathroom if I wait too long. I haven't had an accident yet so I don't know if this is just due to the fact that I am so used to rushing. I also have the feeling of things coming out but so far nothing has, I am thinking maybe it is the muscle bulging that makes it feel like stuff is coming out. I actually squatted over a mirror once to see if stuff was hanging out (sorry gross tmi) and it was not. So I am hoping this is just my muscles getting used to things.
Oh, sorry for some reason I thought you were from Canada when you mentioned you had universal health care
As I understood from my surgeon explaining about PTNS it can actually be used even if you have no nerve damage and it is still successful, somehow it stimulates the muscles. Also, the implant is really small and put into your ankle (it is not a large object like sacral nerve stimulation). I also believe the treatment only lasts for 12 weeks and then the implant is taken out? I don't know if this is correct, but that is my understanding of the treatment. If you have access to this treatment I would definitely check it out. I really think it could enhance the results of the surgery, probably even more so than physical therapy.
Flsunshine, glad you started the probiotic, it has really helped me! Also, since you mention you have diabetes. Diabetes can actually cause bowel incontinence because of nerve damage and also cause motility issues in the bowel. Maybe this is making it worse? Hope you continue to improve!
Hi Lilypetunia. No problem, I can understand why you thought Canada. Most European countries have universal health care too.
Sorry, I was confused about the PTNS. I was offered sacral nerve stimulation, I thought that was the same as PTNS. I doubt PTSN is available here yet, but will probably come in a few years.
Otherwise yes, it sounds like we're experiencing a similar recovery. About the things coming out, sometimes it's only a little hemorroid coming out when the feces push down, otherwise, when the urge is really big, I've felt with my hand and a little bit of feces is at the opening. It is much less than before but would like it to go away though!
My surgeon said PTNS is currently only available in Europe for fecal incontinence. Wikipedia also lists it as available in Europe but apparently it is still under review in the UK. So I guess not all of Europe. I think the procedure is relatively new. It is minimally invasive and seems to have really good results. You should ask your surgeon about it.
Thanks girls for the replies. I am glad that you both have better control. Wow, 30 minute wait...that is incredible. I would never be able to do that. Even with the better consistency with my 'bulking' measures I still have to move quickly to the bathroom but now I can at least make it there. Lillypetunia, I had to LOL at your squatting over the mirror to 'see'. I have so many 'photos' with my camera set up on a tripod to 'see' my wound healing progress... LOL Just so you all know, my diabetes is newly diagnosed in August. Right before my surgery. I have gained quite a bit of weight from not being able to exercise. I believe it was a fluke that my sugars were high at that time also because I have not had any trouble keeping my blood sugars stable even without medication. Although, right after surgery I aimed at keeping my blood sugars below 80 to aid in my healing. The doc put me on the metformin and said "It will help you to loose the weight". Well, I have not lost a pound while taking it. My problem is with lack of exercise because of the soiling issues. I have started walking this week with my 'better control'. Although, this afternoon was not so great but the 'positive' is that I made it to the bathroom. This is improvement. I still believe that the kegels are the key since most of my improvement seems to come from that...it may just be 'retraining' the mind and the body to work together?
My surgeon said PTNS is currently only available in Europe for fecal incontinence. Wikipedia also lists it as available in Europe but apparently it is still under review in the UK. So I guess not all of Europe. I think the procedure is relatively new. It is minimally invasive and seems to have really good results. You should ask your surgeon about it.
Lilypetunia...funny after all of these posts on the PTNS this past Sunday my community news paper had it mentioned as a treatment for urinary incontinence and found that it also improved fecal incontinence as an "added bonus". The doctor being 'interviewed' about it made it sound like it was already available but at the end of the article it stated that it was "widely available in Europe but not yet approved by the FDA in the US." So I imagine it is on the horizon although I doubt insurance companies will 'cover it' for many years.
Yes you are right, it is available in the US and approved by the FDA for urinary incontinence, and insurance will cover the treatment for urinary incontinence only. However, it is not yet approved for fecal incontinence by the FDA. They are still going through the review process which has unfortunately been stalled by some problem with the facility making the device. Hopefully it will resolve soon. As soon as it gets FDA approval insurance should cover the treatment. It is a much more affordable treatment than sphincteroplasty and sacral nerve stimulation so the insurance companies will probably prefer it.
flsunshine, I am glad you have been able to start walking again. I also do a walk-at-home program. Leslie Sansone does a ton of them, there are dvd's and also available on-demand. It works well for me because I can get exercise without leaving the house.
The PTNS sounds interesting, I will look it up for details.
I'm feeling slightly down today, I had to go to the bathroom 4 times today, making me much more dependent on bathrooms than I want to. I feel like I'm not improving at the moment. I still have to go 2-4 times a day and hope for 1-2 times.
Yes, the 30 minute wait sounds great, but that's not when a proper urge hits, then I still have to hurry. But, I can sometimes feel the bowel getting full and could technically go to the bathroom if I wanted to, but don't. But there are no urges then. When a proper urge hits, it still starts to come out a little bit.
I'm afraid this will never go away. My surgeon didn't repair the internal muscle separately, he just stitched up the external muscle and said the internal one is usually stuck to the external one with scar tissue and there is no point in stitching them separately, the internal one will just be stitched up at the same time. I got quite disappointed by this and really hope that the internal muscle was stitched back up with the external one making a whole ring. I have the feeling there is still a gap in the internal muscle, causing these problems.
I'm glad things are getting better for you sunshine. I don't remember if you'd done an internal ultrasound of the anal muscles after surgery, did you? Just to know the extent of the current damage.
Last edited by Babygirl43; 01-13-2011 at 01:37 PM.
Babygirl it seems to me that the internal sphincter is notoriously repaired at the same time and not separate and the 'failure' of the internal repair is also something that happens often. With that said, maybe it doesn't mean that it is a failure of the repair but instead part of the natural healing? I know that since I have more control of the 'consistency' of my poo I have more 'control'. I still go to the bathroom at the least 5 times a day. Perhaps the scar tissue or thickening of the muscle as time goes by will facilitate more control? Don't loose hope. You are still healing. My surgeon told me that it takes at least six months to fully recover. Take heart and stay positive. Stress/worry is not good for the repair of the body.
Yes, I did have the ultra sound tests done post op and that is when he told me that a follow-up surgery would help me. Ugh... First thing though, I need to get this diarrhea under 100% control....which is is better but not even 50% under control. I still have 'break through' and therefore FEAR of accidents.
Thanks for the encouraging words Flsunshine! I feel a bit better today again. This might also have to do with the fact that I had quite a strong urge and it didn't come out, I just ignored it and it went away. This happened about 5 times in about 10 minutes before I went to the bathroom. It feels like a significant improvement from before the surgery. You're right, I'm still healing and this will most likely get even better. I guess I cling to the hope of becoming 100% normal some day and yesterday I lost any hope of this happening. Today I'm a bit more positive.
I really hope you get control of your diarrhea, it really complicates everything for us who have this problem. And I totally relate to the fear of accidents, it complicates everything.
The Following User Says Thank You to Babygirl43 For This Useful Post: sjb (01-14-2011)
Hey babygirl, I totally feel your pain! I have been going several times in the past few days too (I think because I have been messing with fiber supplements to get good consistency) and it feels depressing, like things are regressing. I had a whole 2 week period where I only went to the bathroom once per day just like before childbirth. My big issue is that the wound gets poop in it every time I go, so then there is a whole procedure to clean it out which involves q-tips and a mirror. It was so much easier when I could do it just once a day. My daughter is still a baby and doesn't understand that I have to take time to do this and she will start crying etc. Also, I feel like I never will heal, I still have an inch opening in the perineum, it looks really gross. It seems to me it has not healed much in the past month so I am not sure if this is permanent and I will need some type of second surgery to close it up?
I guess we have to wait and see for results, I have heard it takes up to 1 year to get optimal results from the surgery.
I started taking flax seeds today so I will see if it will make a difference to the consistency.
I am not sure if my internal sphincter was repaired separately, I will ask next time, all I know is that both sphincters were repaired and the surgeon was very hopeful about the outcome because all parts were there and I have no nerve damage. So we shall see.
hugs to all of you and have a great weekend!
