years of pain, flare-up after flare-up, I want to heal.

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years of pain, flare-up after flare-up, I want to heal.

Postby norrij » 18 May 2013, 22:41

Hello All!
I finally decided to join for support, tips, advice, and whatever else might help me get through this awful and terrifying pain from my AF. I've had digestive and bowel issues for years, since college basically, so going on 8 years or so from when I first remember having a pain issue. I remember my first experience with blood in the toilet, I was terrified of what it could be, and found out from a trip to my doc that I had a hemi. That healed up pretty quickly thankfully, but they never really went away for good. I was diagnosed with an AF probably 4 years ago or so. Unfortunately, the CRS doc I saw was not super people friendly, and shrugged off my pain and issue, telling me that the only way to truly fix the issue would be to have surgery to cut my sphincter muscle, which could also lead to a life of bowel incontinence. I was in my mid 20's and hadn't had children, so he really didn't recommend it quite yet. He prescribed nitroglycerin cream and sent me on my way. That was it. He never gave me advice on how to heal it, or how to treat the pain, or anything else. So, I picked up my cream and never went back. I hated the cream, no matter how tiny of an amount I applied, I had terrible headaches after for hours. It did help a little bit to relax the muscle, but things would just flare back up again with any bout of diarrhea or constipation, which i'd go back and forth with.
Fast forward a few years and I had my first child. Thankfully I didn't have the normal pregnancy symptom of constipation, I had soft stools the whole time and actually don't remember having even one flare up, it was an amazing 9 months pain free! Then came labor and setbacks. I had a completely natural birth, no pain meds, not even a hospital band on my wrist, I felt like supermom coming down off my birth high, except for the fact that I was terrified to poop afterwards, for almost 3 days I didn't want to experience that for fear of pain and the fact that the fissure might have been torn back open from birth. It was slightly painful, mostly because of stitches, but thankful ok and I started to feel normal again. Ever since giving birth 2 years ago though, I've been battling off and on flare ups of this darn sphincter muscle spasm and the AF pain.
Most recently and the thing that brought me here was a bout with the flu 3 weeks ago, vomiting and diarrhea at the same time for a full 24 hours left me weak and my sphincter muscle shot. I didn't poop for 3 days after and now I've been dealing with my fissure and pencil thin poop since, i'm over the pain and just want to heal! It's so bad this time that it even hurts to pass gas, which I don't remember being an issue before. I'm nursing my daughter still, so I have to be careful with treatment and meds, I will never try the NG cream again, those headaches were not worth it to me. I eat super healthy, drink a good amount of water most days because i'm breastfeeding, and drink a fiber supplement daily, so usually my stool is soft and easy to get out, but lately with my spasm, nothing seems to make it easy to have a BM and i'm just so tired of it.
I read a thread earlier tonight that caught my attention, about tissue being infected and antibiotics possibly helping heal it. I've been feeling off for the last few weeks, and have actually been wondering if I've got an infection down there possibly, it's super swollen and more painful that usual, normally i'd be healed up by week 2, and i'm heading into week 4 of this. I'm thinking a trip to a new CRS might be in order this week, have them take a look and see whats going on. If anything i'd find out if a new fissure has opened up or just figure out a treatment plan.
So far I've tried the following things, i'll also note if they have helped or not:
NG cream: will never use again, horrible headaches were much more debilitating than this AF was.
Preparation H cream: helps with immediate pain most of the time, but never fully gets rid of it.
Prep wipes: good for traveling with, but I prefer
Tucks wipes: so much more moisture and more soothing.
Tucks cream: hated it, stained clothes, hard to get off of skin, didn't help with pain.
Coconut oil: Love it for external itchyness and some pain relief. I also use it to coat internally before a BM and melt some with a little bit of hot water and inject to sooth and relax the sphincter before a BM, works wonders!
Heating pack or hot rice bag: helps sooth sometimes, doesn't help to relax very much.
Sitz baths: helps fairly well, I add baking soda sometimes to help with swelling and itching.
Fiber drink (I use Advocare products, their fiber drink is fantastic!): helps with sweeping out blockages and keeping things soft, Once regular I drop down to half the amount recommended, just so i'm not going more than once or twice a day and irritating the area more.
Massage: I've found that massaging the area with coconut oil helps tremendously for relaxing the sphincter muscle, it also helps work the oil in well for healing.
Chiropractic: having them adjust the tail bone can help relax the sphincter muscle pretty well, although one painful BM and you'll be heading right back in for another pressure release adjustment.
Acupuncture: This seems to have helped the most in all my years dealing with this. Acu has helped not only with the muscle spasm, but with the overall bowel health and movements in general. Things flow better, easier, I don't have to push or strain when I'm in regular Acu treatment. I have been taking a few weeks off because of schedule conflicts and work, but i'm starting back up this coming week thankfully.
So, I feel like I've just about tried it all, save for the prescription things and surgery. I'm trying to keep my healing journey as natural as possible, and would love other suggestions for herbs, pressure points, yoga positions, etc. With a 2 year old nursling I don't want to compromise her health by taking something harmful to her.
Thanks for reading, and sorry that was SO long!!
Cheers,
Norrij
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Re: years of pain, flare-up after flare-up, I want to heal.

Postby Jessjess » 19 May 2013, 00:38

Hi Norrij,
So sorry for your years of suffering. I had surgery a few months ago for LIS and a fissurectomy. I had developed a very painful skin tag which was also removed.
It took me a few weeks to get in to see a CRS. By the time I had the appointment I was taking painkillers to get through the day. All I wanted was the surgery to ease the pain. My surgeon assured me that he had done this surgery over 1000 times. The incontinence issue was a non-issue due to the constant delibilitating pain!
The surgery went well and I recovered completely in 3 weeks.
Surgeons do not have the greatest bedside manner in general. All I particularly care about is if they can perform the surgery well! The technique has improved and incontinence is not a common problem. It is likely to happen a few days after surgery, but the sphincter muscle tightens back up over time. It is still looser, but not as tight as pre-surgery.
If I could do it again, the only thing that I would change is to get in to see the CRS and to be an established patient. If I had done that, then I would not have had to wait as long for the surgery.
Anyway, I hope this helps. Your best bet is to see the surgeon and be an established patient in case you start to have extreme problems.
Jessjess
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Re: years of pain, flare-up after flare-up, I want to heal.

Postby Miss K » 20 May 2013, 07:26

Hi there, it sounds like you are much more experienced at this than me so I probably can't offer you too much advice. However just on antibiotics my GP put me on a course thinking there may be something bacterial contributing (she took a swab which came back inconclusive so she said probably worth giving it a go and prescribed me Penicillin). Anyway that was about two weeks ago and have definitely noticed significant improvement the last week.
I have no idea whether the antibiotics might have contributed or if I was already on my way to recovering but I do feel a lot better, no major pain or spasms anymore just a dull burning for a couple of hours a day (was barely able to walk for about 7 hours after going to the loo a month ago).
Good luck with fixing the problem, sounds like you're doing everything right treatment wise! Is there something maybe in your diet that might be contributing to it continually coming back? Possibly an intolerance to something, or food not digesting properly? I just find as i'm getting into my 30s food that I once had no troubles with is just not processing as well as it used to, so simplifying the diet back to blander, fresher foods in smaller portions has made a big difference also.
Good luck with it and best wishes :)
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Re: years of pain, flare-up after flare-up, I want to heal.

Postby guiness » 26 May 2013, 07:14

My advice: see a colon rectal surgeon that listens to you. Have you tried nifedepine or dialitazem? They have less side effects than the nitro. I was having lots of trouble with nitro, and i am now taking nifedepine. So far no headaches. Its effect on my butt remains to be seen, since i only used it one day. I was taking the nitro wrong , putting it up too high, and could not use it in the morning (because taking nitro was putting me in a zombie like state. So lack of compliance with nitro, i failed to heal in eight weeks but i have a lot less pain. Im partially healed at this point. Doc said i have a 50/50 chance of healing with creams at this point.
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Re: years of pain, flare-up after flare-up, I want to heal.

Postby guiness » 26 May 2013, 07:16

I dont know how those drugs are for nursing moms, however.
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