My AF Journey

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My AF Journey

Postby Gladius99 » 24 Jun 2014, 00:31

Before I start, I just want to thank you all for the posts in this forum, it has been a massive help. Problems like these can be really embarrassing so it's easy to feel alone. I've been lurking for a while, but figured it might be good for me to share my story in case it resonates with anyone.

I've been having issues in this area for almost a full year now. It started as hemorrhoids which I had for a few months. Occasionally I would have times where I would be in absolutely crippling pain for hours after a BM, which I'm thinking now may have been fissures/spasms. A horrible couch and a good deal of stress were huge factors, I think.

I went through cycles of things being better or worse, seeing the doctor twice. The second time I was having intense pain after BMs but the doctor found no hemmies, but he had me continue the cortisone cream I was on and had me start taking Metamucil. I went to Boston for the weekend, and for the first time felt painless for two days (I'm telling you, STRESS!). I didn't drink much water while I was there, which would come back to bite me.

That next week, I had BMs every other day, and they were massive and insanely painful. It took up to an hour and a half to pass, and finally it got so bad I actually blacked out. I got in to see a CRS and he confirmed that I had fissures.

He gave me diltiazem and had me start on miralax (a HUGE help). Things seemed to be getting better gradually, still lots of pain after BMs unless I laid down but I felt like I was making progress. When applying the diltiazem I noticed my sphincter was actually loose, whereas before it had been rock hard.

One issue I had and continue to have is that I feel like I have kind of a lump on the inside. It gets pushed down when I BM and then gets sucked back up. It hurts a lot if I push, I assume it's an internal hemorrhoid and it gives me some soreness but it's not my greatest concern.

One night I started getting a crazy intense itch, and everything went downhill. I felt like I had three or four papercuts down there which gave me constant, stinging pain, and the itching drove me out of my mind! The diltiazem started to burn really bad, and it seemed like I had a rash or something. I tried everything from goldbond to aloe to tinactin, everything worked once or twice then only made things worse. I think it was just really irrtated, and I know other people have had diltiazem turn on them.

I went back to the CRS who said surgery might be next, but I'm still not sold on LIS, I know it can be great but I've also seen lots of cases where it doesn't seem to have done the trick and the whole idea just makes me nervous. He said we could try nitroglycerin for a few weeks first.

Since stopping the diltiazem the rash and papercut feeling is gone. The main fissure I had is acting up again, perhaps thanks to the gentle exam I got at the CRS. The nitro itches and burns a bit when I apply (they told me to do it on the outside), I don't get headaches but a little dizziness which is fine. I feel like it's getting better slowly but it's hard to really tell; I've only been on it for about 5 days, the last two seemed a little less good.

I still have to lay down for at least 3 hours after a BM. Sometimes after that I feel much better if I sit down or go out, sometimes it makes it worse. The fissure pain seems to be worse at night. Like a lot of you I think I've been dealing with this so long it's hard to know whether or not things are actually getting better.

Anyway, that's my long-winded story! If anyone has any insights I'd be glad to hear them. If you got better on nitro, I'd love to know what the process was like. How many times a day did you use it, and how much? Did you still have pain the first few days? They told me to give it 2-3 weeks before we decide how effective it's been, I'm caught between being so tired of these issues and scared of surgery that it's tough for me to know whether or not I'm actually doing better!
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Re: My AF Journey

Postby Apes » 24 Jun 2014, 04:56

Sorry you are suffering. When you have pain at night is it after a BM? You seem to be following standard operating procedure. If you are going to keep up with the nitro you need to give it up to 6 weeks. Make sure you are drinking plenty of water and taking Miralax. you must keep your BMS soft. If you are afraid of surgery you can talk to your CRS about Botox. Although not as successful as LIS it would a step before needing surgery. Unfortunately it can take a real long time to heal, you will need to be patine. That is where this forum is also helpful. We are here to support you. Good luck.
Fissure 2/13/14 from Colonoscopy
Nitro no help
Nifedipine no help
Botox 5/5/2014 work in progress
HEALED 10/2014
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Re: My AF Journey

Postby Gladius99 » 24 Jun 2014, 09:52

Thanks for the response! The pain at night seems to come out of nowhere; the Miralax always kicks in right after lunch. Last night/this morning was worse than normal, it almost felt like the papercut feeling was coming back. I tried applying some Desitin around the area and I think that helped. I am afraid of surgery but if it comes down to it I think I'd rather do LIS than botox, since I don't seem to have seen many success stories. I'll keep up with the nitro and hold the course for a while, thanks!
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Re: My AF Journey

Postby jlm1 » 24 Jun 2014, 10:11

All I can say is, I hear ya!! Terrible pain and very disruptive. I've been using the nitro for 2 weeks now
And it seems to be helping but it's a slow process.one step forward and two
Steps back. I'm also drinking aloe Vera juice, prune, mirolax, stool softener
And lots of water. I also have pain sometimes for hours after a BM. Taking a
Bath right after and then hot water bottles helps but god forbid I have to go yo the bathroom outside
My house! I try to go in the morning and night.
Hang in there!! You are not alone!
fissure May 2014
nitro, diltiazem
botox July
fistula surgery, piece of skin tag removed Oct
fissure declared healed Dec
currently have burning/pain-told it is nerve pain
physical therapy, sitz baths, valium suppositories
hoping I am healing
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Re: My AF Journey

Postby Apes » 24 Jun 2014, 11:09

I'm on day 50 of Botox and think I'm healing. I'm back to a pretty normal life. My BMS are almost always in the morning, one when I wake one right after breakfast. I get up 2 hours before I have anything planned. Un fortunately there is no standard for Botox. I believe if injected in the right spots and a large dose is given it is very successful. I also believe you need to be the right candidate. Meaning not a lot of other complications down there, or GI related.
Fissure 2/13/14 from Colonoscopy
Nitro no help
Nifedipine no help
Botox 5/5/2014 work in progress
HEALED 10/2014
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Re: My AF Journey

Postby Gladius99 » 28 Jun 2014, 19:32

Glad to hear the nitro and botox are helping you guys!

I have the same fear about going outside my house, I need to lay down for minimum 3 hours after BM even when it's not that bad, or else I'm in for a bad time. Scheduling your whole life around that is a pretty big hassle, I've been lucky with my work schedule but I can't imagine what it must be like for some of the other people who have been dealing with this for years.

I think nitro and desitin is definitely helping, I'm still having some itching and pain especially late at night but nothing like the last few weeks. I'm slowly getting to where I get a couple hours a day almost feeling normal. Still cautious because I've been here before, but I think I'm heading in a good direction. Hope you guys are all improving too!
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Re: My AF Journey

Postby Jbl22424 » 28 Jun 2014, 23:10

Sounds like you are doing the right things. LIS did the trick for me so if you ever consider going that route, I'd be happy to answer questions! I was also scared but couldn't be more happy that I did it.
Developed fissure from constipation due to breastfeeding 7 weeks after delivery (Jan 2014)
Nifedepine
Colace
Magnesium
Miralax - godsend
Nitro - some improvement
LIS (May 2014) - cured for 3 months then setback
Diltiazem
Feeling better for now
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