GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

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GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Davo » 05 Feb 2012, 10:38

Ohhh no!!
It was working so well too!
At my last visit to the CRS (six weeks on GTN) i was told that my fissure was almost healed and to stay on the ointment for a further six weeks. Last week it was looking great, the wound had healed well and i had no pain whatsoever during BM's nor did i suffer any spasm pains.
Then Friday afternoon i started to feel a small annoyance down there and following a bathroom visit it came back in all its former glory. So i have spent the weekend in pain all over again, i am having trouble sitting down and walking can be tolerated for maybe 10 minutes max.
I looked back over the previous few days and nothing in my diet has changed, the days before the recurrence i was drinking around three litres of water a day and taking movicol, stool softeners and magnesium.
So it looks like i am another GTN failure!!! I dont however feel depressed or down, i just feel disappointed that it was working so well and let me down at the very last hurdle.
So i am back to the CRS this week. He said on my last visit that should i return the next step would be Botox - now i have read all your accounts and researched online and to be honest i cant see any point in bothering (please correct me if you know otherwise).
Both LIS and Botox are carried out under general anaesthetic, both take around 10-15 minutes to perform and both are done as a day case. With Botox it paralyses the sphincter for three months and it in that time it is hoped that the fissure will heal - although some studies report it is 70% effective they also continue to add that most people have a re-tear within 3 months and ultimately end up having LIS.
LIS on the other hand has a 95 - 100% sucess rate and the rate of recurrence is very minor plus complete pain relief can be achieved in 2-4 weeks. Now i appreciate that there is a incontinence risk but i am yet to read an account of someone this happened to (apart from within the temporary gas/liquid incontinence sometimes experienced within the first month).
So i am going to push for LIS and bypass the Botox - Do you think a CRS would allow this? The reasons i ask is that the last 4-5 months have been hell and i am trying to plan my wedding this summer. Unfortunately this is a time we should be enjoying and getting excited about however all we can ever think about is this bloomin fissure!!!
So thats my little rant! If anyone can tell me that Botox is great and really works then please do
Davo
Last edited by Davo on 13 Mar 2012, 03:41, edited 7 times in total.
Reason: Change after visiting a doctor
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Sue1962 » 05 Feb 2012, 11:42

Oh Davo, so sorry for your set back. These AF have a mind of their own!! IMO, I really don't think it matters what you eat, how much water you consume and all the other things we do to try to heal them. Like you said, you did not change anything at all, and now another set back. Once that area becomes damaged it is very hard to heal after a few retears. It will heal, but then out of the blue retear, just like yours. I battled it on/off for 3 years!!! I just was tired of my butt consuming my life and worrying about the next BM and hoping everything I was doing. Your comment on the 95-100% get success with LIS and slim possibilities of retear or new fissure, is spot on!!! I would totally skip botox and go straight for LIS or SAD if you can find it. Seems their is only 1 CRS in New York that does this. Botox is putting a bandaid on a chronic situation. As you know I had LIS 4 weeks ago and haven't looked back since. The recovery was a breeze and I am completely back to a normal pain free life and have been since 1 week after surgery. Good luck and I hope you feel better soon
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Davo » 05 Feb 2012, 12:59

Hi Sue,
Thanks for your comments
It's posts like yours that have made me realise how useless Botox is - it is impossible to find a good report about the stuff! I know that my CRS wont want to offer me LIS quite yet but i am already working on my case about why i should skip Botox and I have lots of reasons so far!
Love the comment about Botox is putting a bandaid on a chronic situation!!! Brilliant!
Anyway thanks again - i will probably post on here later in the week after being forced into Botox!!!
Davo
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby rasmith3530 » 05 Feb 2012, 21:48

This is my second AF, and as of this evening, I'm still getting blood and pain. I have an appointment with the CRS later this week, and he said if I was still experiencing problems, we'd be looking to schedule LIS. I think he read the terror on my face in continuing down this path unsuccessfully with Nitro. I wanted to flat end it the other night. This time out has been much worse than the first. Much greater pain and a lot bloodier.
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Davo » 06 Feb 2012, 05:50

ALL IS NOT LOST!!!!!!
I decided to visit my GP this morning for a check before i arrange my CRS visit. Now I am lucky to have a brilliant GP who diagnosed my fissure from day one and who gave me lots of help, good advice and insisted on 2 weekly follow up until things had improved.
Anyway i had a good long chat with her and she told me not to arrange another appointment with the consultant until I had at least finalised the second course of GTN in about 2.5 weeks time. She took a good look and said the fissure is considerably better and nowhere near as deep as it was when i visited last, she said i have had a slight re-tear but it is only slight and not back to what it was when i started.
She thinks it could actually heal itself with continued GTN usage but probably not in the remaining 2.5 weeks.

We talked about the re-tear and she told me to explain my diet so i said porridge, wholemeal bread, fruit, soup, wholemeal pasta and I told her about taking 3x stool softeners, magnesium and movicol. She nearly fell off her chair!!!! She asked if i was severely constipated and when i said no her exact words were, "So why the hell are you dosing yourself up with laxitives? Its forcing you to go to the toilet more!"

I then asked her about surgery over Botox and she said dont go rushing into any surgery, most hospitals are using surgery less and less and the plan is to eventually rule it out if at all possible. She then said imagine this... What if you had surgery and you are one of the unlucky ones who has permanent incontinence knowing in the back of your mind there was a reversable alternative and you refused to take... how would you feel?
She also said that when she started out in practise there was no GTN or botox and that surgery was the only option - she also said unfortunately some of those people who had surgery are still coming to see her now with incontinence problems!!

So anyway to sum up i have to stay on the GTN for the next 3 weeks or so and she is fairly positive that we can heal this without hospital intervention.

Finally she gave me a telling off (i laughed at her) - She told me not to let the fissure rule my life, i have to start going out to restaurants, going out for drinks (without getting drunk) and enjoying myself again. I dont need to be staying on the soups and this strict diet as i am not constipated - she just told me to stay on the porridge/All bran for breakfast, eat lots of fruit (but not bananas!) and eat wholemeal sandwiches at lunchtimes and thats it! If i continue the way i am I will become depressed which in turn will stop the healing and make things feel a whole lot worse.....
My head is truly baffled!!!
Hope everyone is having a good day!!
Davo
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby rasmith3530 » 06 Feb 2012, 07:32

Last night, I experienced two bowel movements, one during half time of the Superbowl game and another directly after. Both times were fairly bloody. I had strong pain which kept me up until something like two AM. I just went to the bathroom this morning and was still wiping some fresh blood. The sharp pain has subsided but I am still left with residual pain which, if all goes as it has, I will continue to experience about half the day today. Mind you, this is while on an extended release Class 2 narcotic pain killer. I'm not sure how NOT to let this thing rule my life. I can't even bear to get on my exercise bike because of the pain. Just sitting on a chair hurts.
As for food, I'm eating in, and then only minimally. Early on during this go-around (my 2nd AF in about a year), I went with a friend for Chinese at a local restaurant I've been to a number of times in the past. My AF paid dearly for what I'm guessing was some MSG in one of the dishes we shared. I'd love to go back to a normal diet, but don't believe that's in the cards for me, at least not for the near future.
Good luck on that plan, I wish you much success.
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby ToothDoctor » 06 Feb 2012, 10:49

The physician may be very experience and caring, but I must disagree with the change in diet.
I am a dentist, I will not tell my patients to not let a "toothache" rule his / her life. I won't tell them to ignore the pain and go enjoy eating candies.
If you have a crack in a tooth that is all the way into the nerve, you need a root canal, or have tooth removed. If you have an anal fissure, and you have tried GTN with no results, then you need a LIS. Simple as that.
Yes the treatment is irreversible, yes there is side-effects, but the same is true about ALL medical treatments.
Give it a good go with GTN, good diet. But after 4-6 months if it doesn't heal, it's obvious you need LIS.
For myself, I'm 2 months in with AF. I will give myself another 2 months to heal. If it doesn't with GTN then it will have to be LIS...
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Davo » 07 Feb 2012, 09:19

Hi Toothdoctor,
I think the comment about diet was not instructing me to go all out eating junk food - i think she was saying that i am being too hard with myself and i need to not let the AF rule my life so much. So providing i know my food limits there is no problem eating out or going for maybe 1 or 2 drinks.
I have been on GTN for 10 weeks now - i almost healed and then had a tear at the weekend. On my last CRS visit he instructed me to stay on it for 12 weeks and to return if it does not clear up.
I personally want LIS but i think the only option i will get at this stage is Botox - it seems most CRS's follow a strict order of medication/surgery in the UK.
Ohh and in order to not worry people about her comments about incontinence from people having sphincterotomy - this is by people who had surgery decades ago and modern methods are much less risk!
Davo
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Nitsnz » 07 Feb 2012, 17:49

Hi Davo, I've just posted about my botox experience. My fissure has "healed" after 8 weeks of botox, but I'm still having the cramps etc, but i just thought you might be interested in another experience! I understand how you must be feeling relating to your upcoming wedding, we've just been away as well over the Christmas holidays and although I coped, it DID rule my life and stopped me from going out in the evenings when I could have been socialising etc, instead, holed up in the hotel room in pain! My whole body was going into "shock" when I knew the BM was imminent and I also wonder if keeping the BM's so soft that I wouldn't even have to push has contributed to me having to re-train my muscles into pushing a "normal" BM out again. This seems to be happening just over the last few days and my body is not going into Shock as much as before, only afterwards when the cramps start. Anyway, as I stated in my previous post, I am going back to my specialist in 3 weeks so will question him at length then. Please don't "write off" botox, as I know a lot of people have had bad experiences, but do we hear about the good ones too? It's certainly worth a try in my opinion. Good luck, and i wish you all the best.
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Re: GTN Nitro = My 14.5 Week journey is finally over, LIS tomorrow!

Postby Davo » 08 Feb 2012, 03:30

Hi Nitsnz,
Thanks for taking the time to post and i am really pleased that we are starting to see a few botox success stories now.
I have done my fair share of moaning lately :D and i would normally be very patient but we are so worried that the fissure will ruin our whole wedding. There has been times when my girlfriend has been so excited talking about wedding plans and i will just snap and tell her to shut up - This is not how wedding planning should be and i hate myself for treating her in such a way but when you are in pain it can be difficult to be upbeat.
As for my options my mind is changing on an hourly basis at the moment, part of me says perservere with the GTN for a further few weeks and give it one last chance (I have been on it 10 weeks so far), another part of me says make a CRS appointment and get the Botox and then another part of me is saying push for LIS!!
I think i will end up having the botox as i dont think LIS will be an option and if it have more chance with it than GTN then why not!
Botox success is meant to be around 75% (similar to GTN) and i imagine that people who are successfuly healed no longer come on message boards to tell of their new lives. So i would like to think that the people who have not had any luck are the ones in the 25% group!!
By the way when you say you are healed but getting cramps do you mean spasms?
Davo
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