My Botox and its side effects experience

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My Botox and its side effects experience

Postby NickF » 10 Feb 2017, 14:35

I'm going to start this by saying that I dont want what I am about to say to worry anyone. Botox injections are generally perfectly fine and have an incredibly low side effect occurrence. This just wasnt the case for me.

I had an anorectal manometry and endoanal ultrasound done several months ago that showed I have normal pressures. This is the important point and why I am writing this topic in the hope of helping others. Ill explain more later.

11 days ago I had Botox injections and a skin tag removal. Now let me say that my recurrent fissure was causing me agony for the year I had it before this procedure. But now it is hell. Here are the key points:

1) My fissure now burns worse and for far longer (8 hours of spasms)
2) I am experiencing incontinence. I leak liquid stool for several hours after a bowel movement.
3) My fissure used to tear and cause me agony for a week and then heal and repeat after a few weeks. Now, it is showing no signs of healing at all. But no signs of infection either. I have spoken with my CRS.

So here is the reason I am writing this. I have read a lot of medical journals (think hundreds over the last year) and I have read the anal fissure section of my current CRS's surgical textbook. Several studies have shown that Botox is not appropriate for low-pressure or nomal-pressure fissures. In fact, a study done in 2011 showed that it had the paradoxical response of increasing pressure (hello spasms). If you are interested in reading, here is the link:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3140330/

This is not the only study to find this. There are several of them. If you want to read more, try this google search: Botox for "low pressure" fissures. Be sure to put "low pressure" in quotation marks to narrow down the search results to exactly what you need.

Anyway, that being said. I asked to be referred to one of the best CRS's in the country and he warned me of the risk of incontinence from doing Botox in a patient without hypertonia (high pressure fissure). I also did enough of my own research by reading medical journals to know that this was a possibility. I made a rational and calculated decision to do the Botox. I was in so much pain that I thought it was worth the risk and I dont regret trying it, even if it did make my situation worse.

Equally, I wont regret the next surgery I have which will be either LIS or Advancement flap even though I know full well these may make matters worse too. Those of you who experience the crippling pain from fissures know that anything is worth a shot at trying to get your life back. So dont be afraid to try things if your CRS recommends them. Just make sure you know and are prepared for the risks. They are small, but they do happen. So do your research, ask for testing (anorectal manometry and endoanal ultrasound) and make informed decisions and then dont regret anything :)

And as a final side note. I have a friend that is an Opthalmologist (eye surgeon) and he told me something that has always helped me to make decisions and may help you too. Its this: Medicine is always advancing and finding new techniques and solutions. Even if you experience a terrible side effect from surgery, you never know what doctors will discover in future to help with that.

Anyway, I dont know if anyone cares about this but if anyone wants updates or more information, I am keeping a daily log of my pain level and incontinence level.

Nick
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Re: My Botox and its side effects experience

Postby chachacha » 10 Feb 2017, 20:32

Fascinating. I read the whole study and learned a lot. Thank you so much for sharing.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: My Botox and its side effects experience

Postby NickF » 11 Feb 2017, 03:25

Of course. I have saved other relevant studies on the lateral internal sphincterotomy for recurrent acute fissures if you are interested. They don't however mention the results of LIS for recurrent acute fissures in patients with low/normal pressures. If you come across that, please give me a shout :)
I hope you are doing well at whatever stage you are at with your fissure chachacha
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Re: My Botox and its side effects experience

Postby chachacha » 11 Feb 2017, 09:51

I'm not as interested as I would have been in the past, because I had LIS two years ago and it was very successful, but if I ever have a relapse, I'll certainly want to read even more! I hope that your journey ends happily soon too.
Fissure since about 2007
Fissure diagnosed in 2011
Diltiazem for two years - didn't work well
LIS January, 2015
Hemorrhoidectomy December, 2017
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Re: My Botox and its side effects experience

Postby LemonMan » 11 Feb 2017, 19:36

Sorry to hear you are suffering, and thanks for sharing the link. I did notice in the article that "The main side effect with botulinum toxin injection is mild incontinence to flatus and stool, lasting up to 3 weeks" so maybe, as you are only on day 11, things will improve for you in regard to point 2).
If I could ask - were you suffering from spasms previously? I guess what I am getting at, is if you have normal sphincter pressure did this mean you didn't have spasms, and now as a result of Botox you are - because of higher pressure? Or were you having episodes of high pressure each time you tore your fissure?

Maybe this will make more sense if I explain my own situation. I have an anterior fissure, which doesn't cause me intense spasms but has always be more of an "burning" issue which is non-the-less significant. As I don't have spasms I'm lead to believe I don't have increased sphincter tone, and consequently trying procedures that aim to reduce pressure if futile (as outlined in your link). This concerns me on two levels 1) Doctors/CRS's don't seem to understand this point, and 2) There isn't much that can be done to treat these conditions except time and patience (and prevention of infection).

Anyhow, thanks for sharing the information and good luck with your situation, LemonMan
Aug 14: Anal Abscess diagnosed
Dec 15: Anterior Anal Fissure diagnosed
Jan 16: Anoheal - Thought was healed end of Jan
Apr 16: Anoheal - Thought was healed end of May
Sep 16: Fissure back. Started Anoheal again
May 17: Botox and banding - fingers crossed
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Re: My Botox and its side effects experience

Postby NickF » 12 Feb 2017, 02:42

Thanks for your reply Lemon Man, you make an interesting point. I guess the answer is I'm not 100% sure I was having spasms before, or even now for that matter. The experience is the same now as before the Botox but more intense and longer. Perhaps if I explain it you will be able to tell me.

When I have BM, I usually experience a short lived burning pain during the BM. It then stops and I am pain free for approximately 2 hours. After 2 hours the burning pain gradually increases over the next hour or so. After that I have what feels like horrible twinges inside me. It feels like an electrical pulse is being sent from somewhere inside me straight to my arse and I unintentionally tense up my whole body. These electrical pains as I call them happen on and off for several hours. Then I go back to the burning for several hours before it stops completely until
the next BM. These electrical pulses are what causes the most intense pain. Is there any way to know for sure what a spasm is?

Also, you say it can't be treated? No way. Haha. I am getting treated. If they can't treat the fissure with advancement flap, I'll have a colostomy. Because I want to die from the pain and I'm not living my life like this.

lemon man, I am very curious when you say you have a normal pressure fissure. Is it typically chronic (visible sphincter muscle, hypertrophied papillae). Or I'm wondering if it is recurrent like mine? It heals and tears continuously but not the typical signs of a chronic fissure other than skin tag from the scarring, which I assume you would have regardless due to the nature of a fissure over a prolonged period.

Also have you decided to live with your fissure now and not pursue more treatment? And if so, how are you doing that if you don't mind me asking?

My CRS recommended I see a pain specialist and my GP gave me a referral so I'll let you know if that is helpful at all when it comes through but she said the referral would take a long time.

Thanks
Nick
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Re: My Botox and its side effects experience

Postby Mypoorbutt » 13 Feb 2017, 07:54

Hi Nick,
Sorry to hear you are suffering so much,
It was very interesting to hear you had Botox with a normal pressure as my CRS was very clear that he would not under any circumstances give me Botox if I had a normal pressure he did mention side effects including pain but as my pressure was really very high I didn't need to remember exactly what he said.
I do know that he said he always does flap surgery for people with normal pressure as any other procedures can be counter productive. The pain you are describing does sound like a mild spasm mine would come on about 20 mins to an hour after a BM and would last for at least 8 hours and I was rolling the floor and literally screaming....I have lost over 8 stone in 18 months as there were long periods where I was just too scared to eat. If you are brave enough a sure way to tell if it's a spasm is to try and put some cream up there...if you can get your ur little finger up you can actually feel the sphincter spasming.
As for a colostomy if your in the UK it would be a huge fight....I have crohns and IBS I actually refused to eat for 3 weeks and was told in no uncertain terms that I would not get a colostomy unless my organs started to fail...I don't think anyone who hadn't had a fissure can understand the unrelenting agony of a spasm and the mental torture of knowing every time you eat that you will then be in agony later.
I really hope things work out for you and I'm sure the flap surgery would work really well for you.
Good luck
MPB
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Re: My Botox and its side effects experience

Postby NickF » 13 Feb 2017, 08:15

Thanks MPB. My surgeon told me he doesn't do advancement flaps on men because the male anatomy isn't suited to it. Apparently we don't have enough skin to pull over. But I'm going to seek a second opinion on that because I just don't believe that's true. I've not read that elsewhere.

And I will continue to fight for treatment of any kind that will bring me relief from the torturous pain of this fissure. I know what you mean about losing weight because of the fear of food. I've lost 5 kilos in the last 14 months. And I was pretty thin to begin with. If the flap doesn't work, I'll do the LIS as well because why not. Worst it can do is make me incontinent and that won't matter if I need to then push for a colostomy. As for sticking a finger up my arse in the middle of a spasm! No chance. There is no way I'm putting anything near my arse when I'm writhing and squirming in pain.
Did you do that? How did manage to do that in the middle of a spasm? You must have been in even more agony, if that's possible
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Re: My Botox and its side effects experience

Postby Mypoorbutt » 13 Feb 2017, 09:05

Well I'm female but I'm pretty sure my CRS does it on men too as he certainly made it sound that way....if you have open flap surgery then you don't need the extra bit of skin anyway surely?
I have done that yes when I'm mud spasm and I need to get my GTN up there...it always seems to work quicker if I get it inside....and heck yes it hurt like hell and I have very tiny fingers lol...if your CRS did the Botox with normal pressure then there is no reason not to do the LIS....colostomies bring there own issues....I have held off as I have quite a few friends with them due to crohns and some of them will admit to now being desperate to get them reversed. I guess it's all down to the individual....I know I would hate to have to get up 2/6 times a night to empty gas out of a bag so it doesn't explode...I will stick with how I am unless I was in spasms everyday or for the bigger part of the time.
This is such an awful thing to have I can honestly say I have never felt pain like it before or had something change my life so much and that includes my crohns flares when I can often go to the toilet 20/30 times a day.
I'm sure you will get this sorted soon
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Re: My Botox and its side effects experience

Postby NickF » 13 Feb 2017, 10:22

Thanks MPB. I'm sorry you have to go through this too. Seems crazy that medicine isn't able to do a better job of handling fissures than they are at the moment
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