Botox diary

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Re: Botox diary

Postby brokenbottom » 09 Mar 2016, 17:22

Day 20 - same old, same old

So my life has fallen into a pattern and not a good one.
7am - wake up and take Lansoprazole to pave the way for the Naproxen painkiller.
7.30 - Eat fruit and some cereal with Naproxen, stool softener, and paracetamols
8ish - Painful BM, usually with blood
8.30-about noon - Pain kicks in making sitting, standing, walking, anything unbearable. Totter to bed with hot water bottle and cry. Count hours till I can take more paracetamols.
12.30 - Have a bath and apply GTN
1pm - Eat lunch (standing)
2pm onwards - Too tender to sit and too exhausted to do much else I totter round the house, calling doctors or trying to do something vaguely useful once I can think straight
7.30pm - Dinner chosen because it hopefully has enough fibre, not because it's what I fancy. Watch TV as I have no social life any more. Dread of the next day sets in and a fresh bout of crying starts. Apply GTN and go to bed.
This is no life.
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Botox diary

Postby Canadabum » 09 Mar 2016, 17:54

Bb....i am so sorry to hear how distressing, painful and horrible this is for you right now. I can relate 1,000% to all that you have described. I think I cried myself to sleep for a few months myself...the whole experience is horrible (not that I need to tell you) -- from the pain to the anxiety of what will be tomorrow.

Here are some thoughts --

I see you wait for your bath for a few hours after you go to the loo -- what about going in to a bath immediately after you go to the loo, soak for 20-30 mins and see if this helps at all.

This may sound odd -- what about trying to go to the loo while taking a sitz bath...perhaps the relaxation of warm water down there will be helpful?

Are you using any of the fissure creams right now -- if not, why?

When I was in the thick of it I would try for 2-3 baths a day as i found being in water helped.

The other thing that helped was finding a warm swimming pool and simply swimming for 15-30 mins...gently. I found this great psychologically to simply get out of the house and also good physically (warm water!) for the fissure and for my health.

I hope you find some relief soon -- please keep us all posted.

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Re: Botox diary

Postby brokenbottom » 10 Mar 2016, 12:35

Hello CB and thank you so much for your kindness! I was really really low last night so it was lovely to get your message.

If you felt like this for a few months what happened to change that? Did it just go? This cycle feels like it will never stop!

In answer to some of your suggestions, I do sometimes have a bath straight away after a BM but there are times it is just so painful getting out of the bath and getting dry and everything in the throes of the worst pain that it seems safer to just head for the safety of bed straight away. I find lying still is all that makes it bearable. And I am using GTN Rectogesic cream just now - is that what you mean?

The swimming sounds like a good plan - except I can't swim so maybe not!

Today my plan is to try to see a specialist privately so I'm working on that. The NHS in Britain is a wonderful thing, but the financial cuts made by the current government (who all have private health care) have brought it to its knees. I found out today I won't get a follow-up appointment for 3 to 4 months!

Anyway thanks again for your support CM. You're a star!
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Botox diary

Postby brokenbottom » 23 Mar 2016, 14:04

Days 21- 34 after Botox - no progress

Well I got pretty disheartened about writing this diary as I'd hoped I'd be logging my recovery and there really hasn't been any improvement. Most days have followed the pattern I described above. I have a reasonably painful BM, followed by incapacitating pain for at least 3 hours afterwards. I spend the mornings on my side in bed with a hot water bottle and get quite excited if I'm able to sit down to eat my lunch. The pain has generally eased by the evening but that's when the dread of what the next day has in store takes over. There are no days without pain. None.

In terms of medical help, having not been able to get any kind of follow-up appointment, I've been to see a surgeon privately (I'm in the UK and had botox on the NHS). In the most expensive half hour of my life he told me that it looks like the botox hasn't worked (no kidding) and that he thinks the best move for me is a sphincterotomy (LIS). This isn't really what I wanted to hear, although I suppose it's obvious something has to happen. I'm getting a second opinion in a week or so but I can't imagine what else they are going to suggest. There aren't that many medical options are there really?

So a couple of things I'm wondering are has anyone had constant pain for months like I have and then healed without surgery? In my heart I know that I'll probably have to have the surgery but you can't help thinking that maybe if you eat more of this or less of that or find some miracle herb to stick up there then it'll all fix. Also has anyone got any lovely LIS stories they'd like to share to give me hope? I'm spending too much time reading about people pulling dressings out of their bottoms and it's really not helping!
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Botox diary

Postby dmcff » 23 Mar 2016, 14:24

As someone in a similar position (though have not had the Botox treatment), I'd also like to read some "lovely LIS stories", if anyone has some to tell.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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Re: Botox diary

Postby ouchie25 » 25 Mar 2016, 06:47

Sorry the Botox didnt work - that's so disappointing!! :gah:

LIS is probably the next best step to beat this thing! At least you have got the ball rolling, but I think a second CRS opinion would be good to be reassured that LIS was your best option.

Keep us updated! Wishing you well!
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Re: Botox diary

Postby Canadabum » 29 Mar 2016, 12:22

BB -- to answer a question in your earlier posts....i was in pain...severe pain for months. Looking back on it my pain overall lasted from October 2014 to approx. Aug 2015 and the most severe pain was from October - July...so a fun 10 months indeed. Am I 100% back to normal - no. BUT I dont experience the pain I had. Now I have an annoying awareness, some minor setbacks and discomfort for a week or two...I am still healing (hopefully).
So what caused my pain to dissipate -- I cant point to one thing but to many and they include:
HEAT -- using a heating pad at work and home and in the car as much as possible
COLD -- when things got really really bad i alternated between heat and cold...I found it helpful
FISSURE CREAM -- use 3x a day for months and months on end
EXERCISE -- i was able to walk in the evenings and go swimming...helped physically AND mentally
FOOD -- I made sure to eat super super well. Lots of good soluble and insoluble fibre...soft foods generally and stay away from processed foods.
OIL -- I ate a couple tablespoons of oil each day, olive or coconut (lubricate from the inside!)
JOURNAL -- I kept a journal of how i felt, what i ate each day, what cream i applied...this helped in my mental battle...I could look back and see what worked and what didnt and could see slight progress after time
BATH -- I took baths and sitz baths every day after BM and whenever I could
TALK -- I talked about it with loved ones...their support was invaluable during my worst days
BOOK - You are not your pain....this book was somewhat helpful for me in putting my pain in perspective
SOFTENER -- once i started using Miralax my world changed a bit from constant pain to less pain
TIME -- over the course of time...and it went slowly...my body was able to repair itself to a large extent
I hope some of this is helpful. All that said, the procedure seems to do wonders for people and if that is the right route for you then great...make sure you work with a qualified CRS.
All my best -- wishing you less pain and continued strength,
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Re: Botox diary

Postby brokenbottom » 12 Apr 2016, 05:23

I've not been on here for a while because there was nothing to report. My days have a similar pattern and always include pain. I haven't been in to work for two months and am doing some work at home. So there's little money coming in now which is a worry too.

A good day is one where I can sit down by lunchtime (always have BMs in the morning) and it's a rare day that I haven't cried.

Ive given up on the NHS as the waiting lists are so long. So today I am sinking my savings into having LIS done privately by a chap who seems to be highly thought of. I'm terrified of course but it seems like the best plan.

So much thanks to everyone on here who has been helpful and supportive. It's been such a source of information and kindness I'm very grateful to you all.

Will report back from the other side, but I guess this particular diary sort of ends here.
Suffered acute AFs since about 2010
2015 Chronic AF diagnosed
18/2/16 Botox (unsuccessful)
12/4/16 Lateral anal sphincterotomy and removal of polyp and two tags
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Re: Botox diary

Postby Canadabum » 12 Apr 2016, 05:52

B.B.:

Sooo sorry to hear how much pain you are in. I am glad to hear you are able to take the next step and go for the procedure - it is nerve wracking but remember that the most likely outcome is really positive. When is your procedure happening?

Sending you tons of strength and support.

:smilyhug: :smilyhug:

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Re: Botox diary

Postby dmcff » 12 Apr 2016, 06:04

Welcome back to the forum, brokenbottom. It's great to hear from you again. Well done with your decision to go ahead with LIS, though it's a step I have not yet found the courage to take. I hope the procedure will mean an end to your pain, and the possibility of a new beginning.
2014 Anal fissure
2015 CAT scan, EUA and sigmoidoscopy, 2 MRI scans - 4 hospital stays - severe to low pain
2016 Anal fissure - pain severe then moderate to low
2017 Return of moderate pain
2018 Physiotherapy, pain management
2019-20 Just living with it
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