New and still suffering

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New and still suffering

Postby Island girl » 19 Feb 2011, 12:05

Hello,
I found your site this morning..It is already giving me great comfort to know there are so many other's out there dealing with this awful thing! I was diagnosed with an AF ten years ago..the doc instantly recommended surgery. I was determinded to avoid it at all costs..and seemed to be able to heal it with a strict diet regimine..sitz baths etc.. I have kept it at bay for all these yrs..but now it's back with a vegence. I have been in pain for three months..still trying anything and everything to avoid surgerey..I am petrified to have it..but at wits end! Help..I need my life back!
- Island Girl
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Re: New and still suffering

Postby happyass » 19 Feb 2011, 12:23

hi island girl,
may i ask where are you from (USA or out of the country and which city specifically) and how old you are?
ten years is a long time! i thought i took a long time to finally bite the bullet and get the surgery. almost 7 years!
when was the last time you had a Colon Rectal Surgeon (CRS) examine you?
do you only have a fissure or do you also have other anorectal issues such as skin tag or hemmys?
do you have any other factors that contribute to your situation now? ie, did you recently have a child or suffer from IBS, Crohn's?
**
i was pretty dormant with my fissure for almost a couple of years and then last December all pain broke loose down there and it just felt like this was the right time to address this issue.
maybe you will arrive to the same conclusion now.
would you like to share with us what your fears about the surgery? i am a BIG chicken and i can say that i could do this again and be relaxed about it. let's just hope that i don't have to! :-)
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Re: New and still suffering

Postby Island girl » 19 Feb 2011, 13:28

Hi..Thanks for the quick response. I am in ST Thomas, US Virgin Islands. I have not seen a CR doc since the initial diagnosis ten years ago. There doesn't seem to be one! I went to a GI doc two weeks ago who seems to deal with Fissures often. I am now on the Nitroglycrn ointment as a final try..He put me on an even lower dose than normal because I work in the sun in a physical job. It really doesn't seem to be helping much. My next step is to head to the states to see a CR doctor. My options are Sarasota Fl area or RI..Boston area.
Ok..fears of surgery..you name it! I think top of my list is the whole incontinence thing..next would be pain and long recovery. I guess I have also read to many scary stories of people having to go in for multiple times and not having it fixed. When did you have your surgery?
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Re: New and still suffering

Postby happyass » 19 Feb 2011, 13:55

hi island girl,
i had my surgery this past january, 1/19/2011. so i am 1 month done today! Image
i was back to work after 1 week and walking my dog after 3 days after surgery. i started walking to work (about 1 mile from where i live) in the a.m. during the 2nd week while taking the bus at night and then walking roundtrip in week 3.
to be honest, i never had pain due to surgery. i may have had discomfort but it was so minimal that i was just impressed with the outcome considering the work i had done.
i bought diapers just in case and used them for the first four days or so but never messed them up. i could control my gas too!
**
am i still recovering? yes. i think you have to allow yourself a good 4-8 weeks for anal recovery and then a good 6 months at least to feel normal. everybody's experience is different.
**
some people had to do LIS twice as the first surgery may have been a bit too conservative with the 'cut' of the sphincter muscle. once you have been through it the first time, i doubt that if you need the 2nd try, you'll be scared. hopefully, you won't need the 2nd try at all but yes, it does happen. it's probably best to take the conservative approach and if needed, a follow-up surgery could provide even better results. usually, you won't know really if you need the 2nd round until everything is healed and if you are not having success with the 1st round. give it at least 6 months to possibly even consider needing a 2nd round.
**
is the NTG (the nitro cream) you are using your first cream? perhaps if that doesn't provide relief for you in about 2 weeks (may need longer to cure fissure about 4-6 weeks), you may want to consider diltiazem 2% as well.
there is another cream/ointment that i just discovered featuring ketanserin. this is widely prescribed in Mexico and latin american countries. it seems to also offer a 90% cure rate as seen in a small, controlled clinical trial. it primarily is used for wound healing.
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Re: New and still suffering

Postby spamfree1232002 » 20 Feb 2011, 03:40

Hi Island Girl,
Welcome to the group - I'm also fairly new and in a somewhat similar situation.
In fact you are not alone: we do understand the pain and the fear; and I'm also trying to avoid surgery if possible. There's lots of advice and help, and some of the more experienced will pass on their wisdom - like happyass's insights on LIS above (thanks Happy - that's encouraging to me if all else fails).
I sometimes worry that we hear more from those sufferers who do not get an easy cure. It is understandable that those who improve probably don't have the motivation to carry on posting on this sort of group much - they just get on with their lives: much as I did a few years ago after GTN (Glycerine TriNitrate - the nitro ointment) and conservative methods sorted me out after a few weeks. On the other hand those who are not sorted out are probably more likely to engage us with their problems. So I'm trying not to worry too much about the scary stories.
And double-extra thanks to those who are better and are selfless and kind enough to add their encouragement and advice here. That is massively helpful, and much appreciated.
It sounds as if you're doing most of the good things: diet, stool softeners, water, exercise, healing and pain alleviation, seem to me the order of the day.
If you're doing a physical job in the sun: are you getting plenty of water and do you have soft BMs? There are a variety of stool-softeners mentioned on this group - I think a good strategy is to try them to find a stool-softener that suits you - and adjust the dose accordingly.
In terms of pain alleviation I've just been prescribed some lidocaine which helps a little. I asked my GP about routine analgesics and I was told to try ibuprofen or paracetamol. I'm on the GTN but it doesn't seem to have done a lot after a month or more, so my GP has prescribed diltiazem and I'm just waiting for that to arrive (it's a special in the UK and has to be ordered in). As well as sitz baths I also use a hot pad to ease the pain - the sort of thing you can put into a low oven or into a microwave and then sit on. (I also tried a cool gel pad BUT my previous GP said don't do that because it will inhibit healing).
Hang on in there, scan the advice, read what the experienced sufferers add, and stay strong - you can beat it.
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Re: New and still suffering

Postby Island girl » 21 Feb 2011, 07:31

Hi Happyass and fibre addict,
Thank you both for your encouragement and advice. The Nitro is really the first cream I have tried. The Doctor here has me on .02% which is considerably lower than normal. I have an appointment next week and I may have him up it as it really has not seemed to do much. I will also ask about the Diltiazem cream. Do you have any other info on the Ketanserin? I have a family friend who is a pharmacist in Guatamala so I may be able to get it.
Your results are encouraging Happyass...Do you feel like it was the right choice? I guess im still in the stage of hoping beyond hope that I will find 'The miracle cure" and avoid surgery. I am very active ..work on a sailboat..workout..run..etc.. So I guess the thought of having a two to six month recovery sounds. daunting. Allthough I am doing it all in pain right now or not at all! I have a buch of travel..weddings etc.. this summer..so i am stuggling with getting the surgery soon and hoping for a good recovery..or keeping up the fight to cure it some other way. Sorry..I'm frustrated and rambling. I guess the reason I keep holding out is because when I first had one ten years ago the CR doc. wanted to do surgery and I was able to heal it and pretty much keep it at bay all these years. Not sure that is gonna be the case this time though...
I also did get the lidocane..which just stings and does nothing for me ..not sure why. motrin helps a little.
Once again..THANK YOU all for the advice and encouragement. It's nice to be able to talk to people who know the pain and frustration of this Pain in the ASS!
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Re: New and still suffering

Postby cherylk » 21 Feb 2011, 07:49

Island Girl,
I like your name! Image How do you like living in the Virgin Islands? I would like to take a cruise to your island some day!!
As far as your healing, sometimes ointments take awhile to work. Have you considered Botox? That was going to be my next step. They may do it at Jacksonville Mayo; I know they do it at Rochester Mayo. You've found a wonderful place to learn and get support from many who have suffered/are suffering like you are. A belated welcome to you and could you please send some of your warm sunshine to the midwestern U.S.??
Image
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Re: New and still suffering

Postby Island girl » 21 Feb 2011, 08:20

Hi Cherylk,
I love living here! I have been here almost 20 years. Originally from New England. It is so frustrating to be dealing with this and not be able to do all the things i love to do here. I have and will consider anything!! Even the so called good surgery outcomes sound horrific. Do you know anyone that has had succsess with the botox?
Have you had the surgery? I waiting to read that someone is normal again after the LIS...seems like everyone is still going through all the same hellish things they were pre-surgery. Thanks for your response..sending you sunshine!!
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Re: New and still suffering

Postby slhall » 21 Feb 2011, 10:34

Hi Island Girl - thanks for your email.... I've read the posts and we will go through this together ok? I've read too... success stories and then others not so much. The suppositoiries I've used in the past 2 years have about 5 ingredients in them, gabapentin, lidocain, cortizone, niphedrine and one or two other things... if you can find a good compuonding pharmacy I can probably give you more information. They help the pain and spasm, but not necessariily when you poop. It's how I got through my last bout of the fissure and hemmorrroid after my hsyterectomy 2 years ago. Nitro cream did nothing but give me a headache..... let's keep each other posted. I just can't imagine having one more cut done on my ass... altought is may be the one I need the most.
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Re: New and still suffering

Postby Island girl » 21 Feb 2011, 10:44

Hey..yeah..a buddy to go through this decision would be great! I'm on the nitro right now..but doesn't seem to be doing much. Have a doc. appointment nextweek..so i'm gonna ask about some of the other creams and suppositories. The person on here called Happyass..had some info on somthing called Ketanserin from Mexico..may look into that. Do you ever wonder why they can't just laser the damn thing?! They can correct your vision and do a host of other thing with a laser..you'd think they could just laser is shut!! Keep the faith! Island Girl
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