My Story

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My Story

Postby Brian_S » 18 Jun 2016, 12:57

Hey yall. New to the forum. So there are others!? Haha. Just wanted to share my story, and see if I'm doing anything wrong, or if anyone has any advice, or whatever...

Been suffering with AF for past 8 months. It's been pretty bad lately, and not getting better or worse. Here's some more about me and what I've been doing to cope:

-- Basics --
27 years old. Male. Otherwise healthy -- regularly exercise, have always ate well, no other digestive system issues ever, etc.

-- Diet --
High fiber, lots of fruits & veggies. However, it's hard to parse out what exactly is best and what isn't. Some people say all dairy is bad; others say yogurt is good but cheese is bad. Some say caffeine & alcohol are bad; others say they're good as long as they're in moderation and you stay well-hydrated. Some say bananas are bad; some good. Some say all veggies are good; others say you gotta boil all veggies. Obviously, fiber is good; but some people say you can have too much fiber. Man, information overload! What the heck is actually best!?

-- Over-the-counters --
- Heaping tablespoon of fiber supplement in the morning
- Heaping tablespoon of generic-brand Miralax in the morning
- 6 stool softener pills per day (the recommended daily dose is 3 pills), spaced out evenly throughout the day

-- Sitz baths --
I used to do 2 Sitz baths per day. Although they provided good instant relief, they didn't seem to actually cure anything. So I stopped, as they're inconvenient as hell, living with roommates and all.

-- Prescription ointments --
I currently take 4 doses of nitroglycerin per day, including directly after a BM. I apply lidocaine once per day, 30-60 seconds before a BM. The nitro seems to provide pretty good instant relief. Like, it definitely doesn't make the pain go away, but I think it reduces it. I used to apply nifedipine a few times a day (alongside the nitroglycerin), but that really didn't make me feel any better. Maybe it was helping and I just didn't notice it? Regardless, my CPS told me to only take one or the other -- not both -- so I stopped the nifedipine and am only on nitroglycerin now. Maybe I'm applying these things wrong? I basically get a pea-sized drop on my finger, then rub it all up in there as best I can. I think maybe only a fraction of it actually gets inside the anus, and that most of it gets smeared on the outside. Although I'm not sure. I'll ask my CPS to clarify next time I see her, but does this sound about right to yall? I've heard some people use a syringe instead of their finger, to basically get it 100% up there. Also, is 30 seconds long enough for the lidocaine to kick in? I can't find this online.

-- The BMs --
I have BMs regularly -- once daily, every day (few exceptions). The stool itself is pretty soft. Not quite toothpaste-status, but it's almost there. And there's not a ton of pain during the BM (maybe in part due to the lidocaine). So this all seems good. However, the largest pain of my day starts about half an hour after a BM, and lasts for about 3-4 hours on a good day (on a bad day, it will last 24 hours or more). It's frustrating because the stool itself is soft, and I'm doing my best with the fibrous diet, yet no matter what I do, the pain inevitably comes in.

-- Daily life --
When I have a flare up, sitting is a lot better than standing/walking for me. I work a desk job, so that's good for that. If I can, I have a BM at work so that I can sit down afterwards for the next few hours, and avoid making appointments and stuff that require me to be on my feet. I have called in sick, and even left mid-day from work, if the flare ups ever get too bad. It's incredibly inconvenient, which I'm sure yall understand. If I get a flare up when I absolutely have to be on my feet and be "on" (socializing, taking care of kids, etc.), then my life is an absolute hell until I can get home. I basically avoid such situations at all cost. Again, incredibly inconvenient.

So that's about it. Any advice? Please please please share if I'm doing anything wrong. I'm really trying to take a holistic approach here, but I've somewhat plateaued in the last 2 months or so. That's the most frustrating part. I don't know what else to do. And I'm sure yall understand that this kind of thing takes a toll on daily life. Every time I leave the house, I think what happens if I have a flare up? Will I be able to get to a bathroom to apply the nitroglycerin? Will I be able to go home if I have to? Who's my ride? Should I take my own care? What if I'm on a date / having sex or something, and I all of a sudden have to say "hey.. uh.. I have to leave and I can't tell you why".

That all being said, I'm doing my best to count my blessings. I'm thankful I have good health insurance. I'm thankful I have a desk job. I'm thankful I have the luxury of being able to leave work mid-day if I absolutely have to. I'm thankful I'm on otherwise very healthy person. Etc. Also, a big piece of advice I try to follow is to keep a positive attitude. I try to do things I like that feel good. Light exercise seems to help (but not like heavy lifting, that requires a lot of muscle tightening). I've recently discovered that riding a bike surprisingly actually feels great. I like gaming too, so if I ever have to just sit down and relax for a few hours, I just do some of that which is fun. But gosh darn this friggin pain in the ass needs to stop..

- Brian
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Re: My Story

Postby Healingthroughdiet » 18 Jun 2016, 13:51

Hi Brian - welcome. I have been following most of what you do. I boil my veggies as that helped me personally more than raw - actually I sauté in a little oil. I use a lot of chickpeas , blackbeans ( I soak them for long periods of time to get them soft) - blackbeans help me personally best. Like you I usually have soft BM but again not the "perfect" soft I think; for me there is such a thing as too much laxative and fiber , i use 600 -800 of colace usually- higher than recommended - last night tried 900 - l am having a bad day today with watery BM: the other thing I have been taking in mostly soluble fiber but I am starting to wonder whether about half should be insoluble to get them right "toothpaste like".
Lots of fruits with their peels, eg apples Brussel Sprouts also work well
I personally have given up dairy but don't believe that's made a huge difference.
Eating only soups did not help me.
Like you I have used nifedipine/ lidocaine compounded - my CRS told me externally is fine as applying internally with a syringe into the anal canal was hurting me more. She said for me external application to the outside sphincter was fine . She said nifedipine could irritate the fissure if applied too much inside . I am also s/p Botox trying to be patient and positive
Take care
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Re: My Story

Postby Mypoorbutt » 18 Jun 2016, 14:28

Hi Brian,
Can't give much advice re diet but, the GTN my CRS said to apply 2 centimetres and depending on where your fissure is, if you can get it on the fissure it does help but like HTD said external is fine.
I have had this awful thing 10 months now and all I can say is if the cream doesn't work and your diet and BMs aren't an issue maybe the Botox could help...I held off the Botox for ages as I had heard some awful things and others saying it just doesn't work...it's not a miracle but it does relax your sphincter. So maybe consider it as some fissures just won't heal without a bit of extra help and it's not as permanent as surgery.
I truly understand the worry about going to the toilet out if the house....not done it in 10 months now. How would I explain I need to lay down on your bathroom floor with rubber gloves just leave me alone for 20 mins please lol...awkward.
I really hope you find a solution to this and something that works for you...it's sometimes a guessing game and again like HTD positivity does play a huge part as it's so easy to be consumed by the pain and the rigmarole surrounding the fissures
Good luck
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Re: My Story

Postby Brian_S » 22 Jun 2016, 12:36

Thanks for the replies! I don't want to jinx it, but I've been feeling better in the last 4 days or so. No flare-ups for the first time in months. I've basically doubled my intake of water (it was already pretty high, but now it is like ridiculously high). I also think the Miralax might have something to do with it since I started taking that about a week ago. So knock on wood.. but here's hoping I continue to get better!
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Re: My Story

Postby Healingthroughdiet » 22 Jun 2016, 21:52

Hello Brian,
Glad you are a little better and hope you will continue the trend. Keep up all the care you are taking. Best wishes
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