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Postby graylene » 23 May 2017, 18:51

Well hi, I've been dealing with AF since March of this year and I'm currently healing from my 2nd re-tear. Saw a CRS in April who prescribed diltiazem, which has been helpful with spasms. Had a follow-up with him today, and he does not feel the diltiazem is working.
Scheduled me for LIS in June. He also encouraged me to continue with the regimen I've been using for almost 3 months now (25-30 grams of fiber daily, 60-80 oz water daily, stool softeners nightly, and heating pad after bathroom trips.) He said that if I improve significantly between now and the end of June (with continued use of diltiazem) I might opt to cancel the surgery. Although it sounds like LIS is his recommendation either way, he did say that I need to decide what feels right for me.

After reading so much information about others' experiences on this forum (THANK YOU) I was surprised to hear that surgery was an option so quickly - this was only my 2nd appt with him.) I'm curious if anyone can share their "timeline" for how quickly surgery became part of the conversation... and the main factors that you have considered when deciding to have (or not have) LIS...?

Lastly - I want to express gratitude to all of you for sharing your stories and expressing so much compassion - it has helped me, and countless others, I am sure.
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Re: Newcomer

Postby Canadabum » 23 May 2017, 21:07

Hey Graylene - first of all - welcome!!

You've arrived at the right place - so sorry that you too are dealing with the dreaded AF.

In my case I pretty much healed a horrible fissure after a couple years...but was left with a papilla and ongoing issues where I would get that horrible scratch feeling then blood for a few days. These episodes would happen every 4-6 weeks and last 3-5 days.

I saw my CRS for a follow up and this time he recommended LIS...although he also said that if I chose to live with this issue and sporadic discomfort that is my choice.

So I was only recommended LIS after lots of time...typically a surgeon would like to see you exhaust conservative treatments first...that may mean being on 2 eight week rounds of the cream. That said -- if you are in lots of pain from spasm and your crs thinks you are a good candidate after exam then I imagine it is reasonable to go for it.

It's a personal choice and you really need to listen to your own body and mind. I am sure others will chime in with great advice.

All best - Canadabum
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Re: Newcomer

Postby graylene » 24 May 2017, 17:05

Thanks for your reply, Canadabum! Wow, you have had years' worth of suffering. Do you think you will go for the LIS? I don't think I could get through years of this - my heart goes out to you, and the many others who have suffered for so long. In comparison I haven't suffered very long at all!
I still feel very uncertain about what I will do. It's hard to really listen to my gut instinct when it is so muffled by pain and worry. I have to say I am **shocked** at the amount of mental anguish this is causing. Previously, I've experienced a separate issue w/ chronic pain (back pain and multiple disc issues) and although that was awful - and incapacitating at times - I have NEVER, in my life, experienced such strong feelings of anxiety, despair and depression. My heart sinks when I go to bed each night because I know what's waiting for me in the morning. I wake up in sheer panic, bracing myself for what's to come. It blows my mind how easily this has consumed me. So not only has this forum educated me about AF beyond what any doctor has been able to do -- it is giving me a sense of connectedness that is impossible to attain with the people in my life who haven't experienced this. So priceless. Grateful for this forum, and for all of you!
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Re: Newcomer

Postby zinnia » 24 May 2017, 19:15

Hi Newcomber- I am also dealing with AF, But then I had a fistulotomy- so now that is healing in same area- the area over sphincter (now almost a surgical fissure) is taking longer than anything else and crs may be talking about LIS. I really am not interested as I have had two surgeries since January on this area! It is frustrating that a fistulotomy also causes a fissure!
So I am using niphedrine and hot baths and sometimes calmaseptine. I am hoping for the best. I don't really spasm- just haven't really healed- so I don't know what surgery or botox could do for me and then side effects from both frighten me.
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Re: Newcomer

Postby Canadabum » 24 May 2017, 22:20

You can check out my initial thread "6 months...what to do" and you will find that I echoed much of what you are going through. I am a grown man and pretty much cried myself to sleep for a number of months. The stress of an AF is serious-- and seriously not helpful. It is super hard to control those feelings of panic and terror - after a while I found a book called "You are not your Pain" that really helped me out my pain in context. Also - talking with select family and friends was super helpful.

As far as dealing with this - it has been a while...but I always remind myself it could be worse and try not to get too down. When I do get down I ask my wife or friends for support.

So will I get the LIS...it is a few months away and if I miraculously get all better I may cancel...otherwise I will most likely go forward. For some reason there is a lot of reticence with this procedure -- something to do with our sensitive butts...I'm trying my best to ignore that stuff.

Keep your ?s coming and take it one day at a time, one moment at a time and you will get through this.

Best - Canadabum
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Re: Newcomer

Postby graylene » 25 May 2017, 20:29

Zinnia, the fistulotmy + fissure combo sounds hellish. I can't imagine - but I certainly understand why you'd not be rushing for a 3rd procedure! And the side effects are so intimidating. Gulp.
I had to look up what calmaseptine is. The compounding pharmacy I went to said they prepared my diltiazem in a "wound gel" base. (It smells like cloves, which I would really enjoy, if it wasn't being used for such an unpleasant task - but I digress.) Anyway, after reading about calmaseptine, I'm wondering if the "wound gel" base they used for my diltiazem compound is somehow similar to it. I should create a new post to inquire about folks' diltiazem "recipes" since I'm not sure the wound gel base is agreeing with me.
Canadabum, I read your other post you directed me to - as well as your '11 months...' post - what a long journey you've been on. I felt sad to read about you going through such anguish... but... also selfishly reassured that I am not going insane and that AF can simply unravel a person. I could especially relate to they way you described feeling when a setback started - totally reminiscent of PTSD! Even the concept of "healing" becomes a questionable thing, since it so often can't be trusted and things so easily reverse back to square one with no apparent cause.

Thanks so much for your suggestions and your support, sending healing wishes to everyone!
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Re: Newcomer

Postby Canadabum » 25 May 2017, 21:04

All of us here are on a journey - physical, mental and spiritual. As they say - A smooth Sea never made a skillful Sailor.

My hope is that this experience leaves us all more able and aware to deal with any more rough seas ahead.

My early days were hellish like so many others -/ these days just an annoyance and in general things are really good. Thanks for your kind words.

All best - CB
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Re: Newcomer

Postby Mypoorbutt » 26 May 2017, 02:45

Hi, sorry to hear your suffering
On the other hand if I had been offered LIS that quickly I would have jumped at the chance. It took me 18 months to get mine lol.
If you are worried ask for the resting pressure test as if you have s high sphincter tone then without LIS your fissure probably won't heal or your more likely to others in the future
The spasms from this are the worst pain I have ever had worse than my crohns and IBS worse than dislocated joints. It truly is another level.
Also nothing has had such an impact mentally there were times when I didn't want to face another minute of the pain and couldn't see a way out.
It does get better though and that awful thing will heal.
Good luck to you
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Re: Newcomer

Postby missy moo » 26 May 2017, 03:35

Please describe the spasm pain? I get glass pain with bm then tight sphincter pain for half the day an sharp stabbing pain here an there then the second half of the day I'm pretty much pain free but can't sit or lay in certain positions because it hurts. The sphincter when tight is so tight I can't get rectogisic in there with a qtip does this sound like spasms?
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Re: Newcomer

Postby Mypoorbutt » 26 May 2017, 04:14

My CRS described it this way when I told him I didn't understand how I could be I. So much pain....Spasm pain can range from burning aching tightness to full on contractions that start in your sphincter that then radiates out to the whole pelvic region and depending on your physiology can go into your back and down your thighs. The spasms can happen every other second or so or maybe every ten minutes depending on the severity of them
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