Changes that helped me

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Changes that helped me

Postby patience_and_healing » 05 Mar 2017, 23:39

I skipped my nightly dose of miralax yesterday, and surprisingly my day was better with very little of the burning sensation that follows me everywhere. I also changed to using a step stool on the toilet (with finger support at the back) instead of squatting on it. I think that reduces the pressure on the area while still producing the right angle for a BM. (Side note- I got my fissures while I was squatting to use the toilet, so I feel it was not helping them heal.) Days like this with lower pain give me the strength to carry on down this nightmarish journey.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
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Re: Changes that helped me

Postby patience_and_healing » 06 Mar 2017, 20:53

Miracle of miracles, my first BM today was virtually painless, though it wasn't super soft. My theory is that Miralax was creating a lot of urgency and freaking out the sphincter muscles in the process, thus leading to tightness and burning.

I've made myself a spreadsheet to track my pain levels over the next month or so. Thanks to the Scientist for suggesting this! I created my own pain scale that's specific to me, and made columns for events of the day like BM, sitting, walking, sleeping, etc. I think it'll be more helpful than just using my imperfect memory.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
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Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
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Gender: Female

Re: Changes that helped me

Postby patience_and_healing » 10 Mar 2017, 19:42

After four more days of skipping miralax, I'm back to painful morning BMs again. I think my morning anxiety is not helping either so I've started daily meditation to help with that. My next strategy is to try a smaller dose of Miralax than I used to take, and also take olive oil to help things slip out easier. I've been taking a half cup of prune juice at night and I think it's too much at once, so that will also be cut back to a quarter cup.
Other than that, pelvic physical therapy helps a lot with burning spasms, as long as I keep it up every morning I'm good for most of the day. And a small amount of water with a bulb enema helps soften things up at the beginning without stimulating the colon too much.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
Moderator
 
Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
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Gender: Female

Re: Changes that helped me

Postby patience_and_healing » 18 Mar 2017, 19:40

I am now taking lactulose and two stool softeners at night. That seems to be working for now, but it heavily depends on me drinking enough water throughout the day. Also started 0.3% nifedipine now, since I gave the nitro enough time to do its job and it hasn't fully fixed the problem.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
Moderator
 
Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
Been thanked: 130 times
Gender: Female

Re: Changes that helped me

Postby patience_and_healing » 30 Mar 2017, 23:30

So I'm two weeks into using nifedipine, and at first it was really helping with the pain. Then, I had some diarrhea from taking Augmentin, and *sigh* I'm now dealing with a setback. This is so discouraging. I'm seeing a CRS in 11 days, and I know she doesn't do Botox, but I'd like an opinion anyway. Although you know what they say, when your only tool is a hammer, etc. I have another CRS appointment a few days after that and I know that she offers Botox as an option so I'll see how that goes.

I'm also doing dilation, currently at 14 mm, but hope to keep increasing. I don't know if it will work, but I'll try anything to avoid surgery. Also using frozen homemade coconut oil suppositories and an occasional calmol 4 suppository.

I feel as if I have THREE fissures - one at 6 and one on either side of it. I don't know if Botox will work if I have that many fissures. On top of all that, I'm also dealing with troublesome skin cysts in that area, possibly caused by an autoimmune condition. Lucky me! I can't wait for the day when I'll have a happy bum.

Lots of compassion and hugs to anyone reading this...
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
Moderator
 
Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
Been thanked: 130 times
Gender: Female

Re: Changes that helped me

Postby patience_and_healing » 30 Mar 2017, 23:35

One other thing I've noticed - whenever I have firm BMs which are not large, the pain is minimal while going. When BMs become soft and bring with them added urgency, the burning and sharp pains come back. It's hard to keep them consistently firm without getting too bulky.. no wonder it's​ taking so long to heal..
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
Moderator
 
Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
Been thanked: 130 times
Gender: Female

Re: Changes that helped me

Postby patience_and_healing » 12 Apr 2017, 22:53

I got some sufrexal gel that's only sold in Mexico, after reading all kinds of good things about how ketanserin helps wound healing & scars, and I also fully researched the contraindications. It has helped reduce my pain during bowel movements, according to my daily journal of pain, but I'm not sure if it's just a coincidence. Also it hurts like hell on the posterior fissure, so I'm not going to apply it there anymore. I used it to reduce the prickly feeling on the lateral sides (probably from scar tissue) and I really think it helped with that. The CRS I saw today said that the posterior fissure looked almost like it had some kind of chemical irritation going on. I didn't dare tell her I'm using a secret fissure gel from Mexico! :D I'm sure I would have been scolded. Anyway I'm going to do the smart thing and stop applying it back there, and only use a tiny amount from time to time on the lateral healed areas for about 10 more days. (The box says to use for 2 weeks minimum)

Please don't go trying this just at my word, always ask your doctor before using anything new. This was a risk I was willing to take to see if it helped me.
8/16-12/16: Fissure due to antibiotics
5/17: Botox to sphincter, fissure healed
9/19: Trigger point injections and pudendal nerve block
11/19: Botox to pelvic floor
8/20: Botox to pelvic floor in new location.
Currently in pelvic physical therapy
patience_and_healing
Moderator
 
Posts: 1077
Topics: 39
Joined: 24 Feb 2017, 15:46
Location: California
Has thanked: 63 times
Been thanked: 130 times
Gender: Female


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