Hi J,
I know what you mean about travelling. I am afraid that I won't go out of the house until the afternoon, as it takes until then for the spasms to settle down. So, if I have to see a doctor, it is an afternoon appointment or nothing.
The virtual colonoscopy is what I plan to have (I believe that if my Behcet's Disease has spread to my colon, they will be able to see this with the virtual). I am also planning, on my next visit to my doctor, to say that I want to have the ColoVantage test, which tests for colon cancer and has an overall 70% sensitivity and 89% specificity. I am adverse to an actual colonoscopy...but that is just me, and I will never have it. I also have the fecal occult test once a year.
I am hoping that having the virtual colonoscopy and the other tests will lay the path for having the S.A.D. I have so many trip up along the path. Tried to go to Mayo, and was told it was a female problem and that I could see a general surgeon if I liked, as an example. For other problems, Mayo has been wonderful.
You are fortunate in having good resources for care where you are. Where I am, they are non-existant. I was even told to put full strength Nitro on my rear by a doctor in the region, and know quite a few people who have been sent home with dire untreated conditions.
What is a charley horse, by the way? I don't know the expression.
Well, that is it for now. I can only access the internet out of the house with a good signal, and it is getting chilly.
Look after yourself. And indeed, may we all find our way to healing.
Sav

Sav...
I am so sorry to hear that medical care is a further challenge to your treatment. It is for me too, but for different reasons. But the one thing about my two doctors (gastroenterologist and CRS) is how open they are to new ideas and when I bring them research studies of things I want to to try they are very willing to work with me and try things out, even if they aren't necessarily mainstream ideas, as long as it can't do me any harm. I like that kind of open mind because paths to healing are so individual, varied, and complex. The other benefit is they are very familiar with how my body does not respond in typical ways to treatments, tests, medicines, etc., so they are very mindful of the things they recommend to me.
Oh, and a charley horse is a severe muscle spasm... My entire colon was in a spasm essentially for six months after the colonoscopy. Don't know if I ever will be able to have another one. So, a new term for the spasm of the anal sphincter. We have a charley horse in our sphincter!
I know what you mean about the path being long. Every day is so painful and every day requires more waiting. Always more waiting.
All the best to you, and my hope that you have as comfortable day as is possible.
J

jr2 wrote:Sav...
I am so sorry to hear that medical care is a further challenge to your treatment. It is for me too, but for different reasons. But the one thing about my two doctors (gastroenterologist and CRS) is how open they are to new ideas and when I bring them research studies of things I want to to try they are very willing to work with me and try things out, even if they aren't necessarily mainstream ideas, as long as it can't do me any harm. I like that kind of open mind because paths to healing are so individual, varied, and complex. The other benefit is they are very familiar with how my body does not respond in typical ways to treatments, tests, medicines, etc., so they are very mindful of the things they recommend to me.
Oh, and a charley horse is a severe muscle spasm... My entire colon was in a spasm essentially for six months after the colonoscopy. Don't know if I ever will be able to have another one. So, a new term for the spasm of the anal sphincter. We have a charley horse in our sphincter!
I know what you mean about the path being long. Every day is so painful and every day requires more waiting. Always more waiting.
All the best to you, and my hope that you have as comfortable day as is possible.
J

Hi, J -
My goodness, you've had your share of problems, and I'm so sorry about that. I just don't know what to say about how you might approach getting better - but it does help to be able to come here and share with others.
I'm suffering from two (supposedly small - 1mm in size) AFs, and this experience has completely turned my life upside down. I've seen two crs already - and I'll see a third crs this Thursday. I suspect that my anal skin has become somewhat "burned" and sensitive, due to an ointment that the first crs prescribed for me (and he didn't even see the fissures!).
This is such an uphill battle, sometimes. It's hard to stay positive, especially when the pain is severe.
Please try to hang in there. Everyone tells me to do that, too - but boy, today I'm just so worn out from all of this.
Take care, and let us know how you're doing. Also, with regard to the S.A.D., please let us know if you locate other doctors in the U.S. who might perform this.

Dear Sweet...
Yes, it is very hard some days to stay positive. People do mean well when they tell us to keep our chin up... These problems are pretty challenging and take such a toll in so many ways in our lives...I am pretty worn out generally ... Thank you so much for your well wishes, which I return to you as well. I look forward to hearing how your next doctor visit turns out, and hope that this doctor is one you feel really good about working with.
I will definitely keep you posted on what I learn, if anything, on S.A.D.
Peace and comfort to you tonight and best wishes for healing sleep....
j

jr2 wrote:Dear Sweet...
Yes, it is very hard some days to stay positive. People do mean well when they tell us to keep our chin up... These problems are pretty challenging and take such a toll in so many ways in our lives...I am pretty worn out generally ... Thank you so much for your well wishes, which I return to you as well. I look forward to hearing how your next doctor visit turns out, and hope that this doctor is one you feel really good about working with.
I will definitely keep you posted on what I learn, if anything, on S.A.D.
Peace and comfort to you tonight and best wishes for healing sleep....
j

Hi, j -
Thank you, so much. I had a horrendously, "please just shoot me" painful day yesterday. I finally had to take a sedative, so that it would knock me out and I could sleep.
Gads, I just want this to heal. I'm hoping my visit with this crs on Thursday will help.
ITA - people mean well, when they tell us to just keep going and stay positive, but they have no idea what kind of nightmare this is for AF sufferers.

Oh Sweet, so sorry you are in such pain. I hope you saw the link I posted to the docs in NYC, if that is of any help to you. I too had a nasty day yesterday, and landed up putting an ice pack on my rear, though all the pain is inside, it does relieve it somewhat as my scar tissue was swollen. It is so debilitating, the pain.
The more I read about S.A.D. the more inclined I am towards this. I am just so sensitive to surgery of the cutting variety that can not face it. I presently have a basal cell cancer on my back, and have had to put band aid on that, and my skin is raw from where the band aid has been, even though it is for sensitive skin. Seeing my GP tomorrow, so hopefully he will be able to advise. I grew up in the tropics, so consequently I am suffering for it now with benign skin cancers...
Right now I have the spasms that always come without fail, after my second BM. I wish I could just go once!!! I usually go back to sleep and that sorts it, after the first. But no, twice is my fate since this all started. I have taken a very small dose of Lorazapam, but will probably ask my doctor to increase my dose so that I can take 0.25mg instead of the half of that that I take now.
Good luck with your CRS visit on Thursday.

Thank you, savaici!
I'm sorry you've been in pain, too. This world of anal pain is not something that's generally known to people out there, those of whom don't suffer from any of this.
I'd love to try the S.A.D., too - and yes, I saw where you provided the link. I'm pretty sure that, unless a crs closer to CA does that procedure, I'd have to fly to NY to have it done -- and then, I'd have to fly back, again, for a post-op visit. That would amount to thousands of dollars for my family, and I just don't know . . . You would think that CA would have a crs who does that procedure, but probably not.
I only have one BM, per day - but I still think I'm having spasms - it's kinda hard for me to tell . . . but I'm the same way you are, as far as having very sensitive skin. Band aids can really irritate me, and I'm very sensitive to many foods and beverages - so, I stick to plain food and water. These days, I'm not eating anything questionable. I've lost some weight, but it's been a horrible way to do it.
Thanks for the good luck wishes, too - my husband thinks that since my AFs are so small, this crs on Thursday will probably tell me to give it time and just send me home . . . oh, dread . . .

Sweet and Sav...
Very bad days here too... Rarely out of the tub though because of how thin I am now I've developed pressure point pain over the bones from sitting so long in the bath!
I was really trying to visualize somehow going to New York... but right now I'm not seeing how that could be possible... The procedure, the followup, and the potential to have to be retreated as wecc mentioned in his last post just in case the first dilitation doesn't work... There is something deep in my intuition that is telling me LIS isn't the right thing for me, and so when two different doctors independently had the same opinion about it for my particular health history, it seems like I really do need a different solution. I just don't know what that is yet. I've even heard from a colorectal surgeon who says they've had success treating anal fissures with hyperbaric oxygen therapy!
I hope you both have a better day today... I too so wish I could reduce the number of times the bathroom calls me in for a session in a day...

jr,
Sorry too that you are having a lousy day. I had problem with going in the bath with my bony bum. I still cannot, so I bought a pink Sitz bath from Rite Aid, or you can buy them online. I found that it much easier for me. I do not quite use it as they say, with the bag dripping water into the thing. I fill it up with hot, then add a little cold. Actually, I do about six cups hot, and one cup cold. Then I soak for five minutes, empty what is in there...and do another five minutes of the same. The reason I only do five minutes and ten in all is that I find it increases spasms, but does give me some relief in 'ending' the BM. TMI!!!???!!!
I am not so worried about a second dilation. I am much more worried about healing from LIS in my case, and my intuition too tells me that this would be a long and hard battle. At least with S.A.D. it is not a 'real' surgery, no stitches. I have so much scar tissue on my rear, from 3 hem surgeries and one strangulated one after that. Also, surgeries for infertility and to remove a cyst (twice). I have adhesions too, and probably had endometriosis. Oh forgot, also had a hysterectomy...
I shall have to look up hyperbaric oxygen therapy. Not heard of that.
The thought of travel is frightening; isn't that awful, that we have to dread travel. I hate that when I used to up and go off to Southern Africa and Australia without a look back. I want my life back!!
Thinking of both you and Sweet, and all the others out there having to put up with this nonsense!

Hi, j -
I really don't like getting in a tub of water - so, I haven't done that, yet, although I've heard it's excellent therapy for pain.
I've tried to visualize going to NY, too - but like you said, the follow-up and possible retreatment would be very costly for me. I don't know if LIS is the way for me, either - and according to my crs last week, he's not pushing for it (maybe some docs don't want to seem cut happy) and thinks I need time and fiber. He's a military doc/surgeon/crs, too, and my internist thinks the world of him. So, I just do not know . . . That's why I want to see this other guy, just to get his opinion.
If your two docs have the same opinion about (about LIS) because of your health history, then maybe something else would work for you. I just hate it that we're all suffering. It's just awful. --- BTW, the hyperbaric oxygen therapy is something I had not heard of . . .
Over here, it's overcast and cold (for CA), and I had such a painful day yesterday - and I'm frightened that the pain will return (because I'm not sure if I irritated the area, myself, or if it's just the nature of the AF beast) - so, I'm trying to stay up and at it here, trying to do some housework, trying to stay positive . . .
So, for now, until I get other answers, I'm drinking tons of water, not putting anything down below, taking my Konsyl and Colace, and praying for healing. We shall see what crs #3 says . . .
BTW, I hope you have a better day, too. I know exactly what you're going through. You're not alone!