Joining this community

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Joining this community

Postby Duiven » 27 Jan 2018, 10:12

Heey Everybody, I have been reading this Forum for a couple of months and I just decided to register and participate.

I have been struggling with an AF for a quite long time although it was until about 6 months that it got worse.
Being in a pretty open and anonymous platform here, I will be honest, I got for the first time the fissure around 4 years ago when having anal sex. I guess I didn't take good care of it in that moment and the fissure became chronic. For some years it was an on/off thing, not too problematic, opening again sometimes because of sexual intercourse or less frequently because of constipation.

Almost 7 months ago I had sex again and the AF got really bad this time. Some months before that I was also diagnosed with Irritable Bowe Syndrome (IBS). During the last summer the bleeding was constant and the pain unbearable. I was almost not eating anything at all and I even lost weight. I live in the Netherlands and in my experience, the medical care has not been great as I expected. Although my health insurance covers everything, the waiting times are always so long. My specialist doctor checked me one month after that time I had sex and she first discarded some other problems like IBD or Hemmies but surprisingly she said there was NO AF. I can feel a skin tag associated with the AF so I don't understand how she didn't see the AF even she performed a Sigmoidoscopy. This doctor concluded that my rectal bleeding didn't have explanation XD.

After becoming an expert in all the measures to take when having an AF I could achieve longer and longer periods without bleeding or symptoms. The maximum time until now has been 6 weeks. I have tried a super strict healthy lifestyle, (no coffee, no alcohol, almost vegan, lots of fiber etc) and no anal sex of course since that day that made that AF worse. I have tried diltiazem for almost two months but It didn't work, the AF comes back again because of no apparent reasons.

Right now I asked for a second opinion from another specialist (Diltiazem was given by my GP without examining me but who believed I had an AF). I am almost sure this is an AF, years ago 2 doctors said it was that (I moved to another country so I cant go with them now).

I hope this second doctor can see whats happening and if it is an AF this time I will suggest the next step... Botox injection.

Sorry for the mess in the story but I tried to anxiously to summarize what could be easily written in a long novel of frustration and despair XD
Duiven
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Re: Joining this community

Postby Mypoorbutt » 27 Jan 2018, 13:30

Hi,
Yes unfortunately the saga of life with an AF could fill many pages filled with pain confusion and worry. I understand that it must be hard to have a dr that can’t see your AF but I had two CRS miss mine even though my present CRS when he saw it under anesthetic said it was the worst he had seen in 22 years. Sometimes the sentinel pile/skin tag can actually hide the fissure which is what happened in my case.
I would really recommend getting a second opinion and perhaps try GTN cream whilst you are waiting for Botox.
Botox really helped me with pain relief took my spasms down from level 10 to basically just a bit of stinging for 10 mins after a BM.
Good luck in your journey and I hope you find a good dr to work alongside you
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Re: Joining this community

Postby Duiven » 28 Jan 2018, 05:12

Thanks for the reply :)

I have an appointment with a second CRS in two weeks. Meanwhile, I am following a strict diet and I am using diltiazem. I would like to try the GTN but unfortunately in the Netherlands is almost impossible to get any medicine without a prescription. Luckily although I still have bleeding I almost don't have any pain, I know that happens sometimes with chronic AF.
Duiven
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