make it easier!

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make it easier!

Postby whoknew » 04 Dec 2013, 16:21

I'm listening to music. As I was about to begin this entry, the Indigo Girls' "Make it Easier" came on. It's really more about struggling in poverty and powerlessness, but in those dark moments where I'm writhing on the bed, the unspoken prayer is basically the same: Please, God or someone, make it easier!

I'm not good at pain or discomfort. I can push through it, but I can't pretend that I'm not invisibly, internally getting my ass beat by my own ass. My face shows it, my withdrawn personality, the tremor in my hands. It's obvious. I am perversely proud of myself for pushing through an anal fissure, which my CRS describes as "the most painful thing that can happen in that area of the body", for pushing through 5 weeks of slowly advancing anal agony, and for not retreating to bed until I could no longer keep the tears from falling. (Customer service is no place for a weeping manager. Even though I do work with amazing people who are caring and understanding, the general public is a different story.)

I say "perversely proud" because looking back, I wish I would have done something sooner.... I have health insurance, I should have gone to the doctor, duh. But work was so crazy and busy, and it wasn't SO bad, and it could be just a hemorrhoid (hah), and list of other stupid excuses. The worst, most secret and self-destructive excuse: if it's something serious, there is no way I could take care of it right NOW, with us being so short-staffed. Literally no way! It's a weird combination of ego and fear and denial that gets me to these bad decisions, this twisted thinking.

So here I recline, awkwardly laying on myself (but not THAT part of myself) and trying to type while encouraging blood flow and tissue regrowth in my butthole. The last few days I've been noticing that I feel like a hibernating bear, or something almost dead. Since it hurts to stand after BM, for oh, 4-8 HOURS, I've been spending a lot of time in bed, reclining, reading (almost finished with Neil Gaiman's American Gods - the anniversary edition), making jewelry, praying, zoning out.

Today is the first day in weeks that I haven't cried from pain. I found that standing up for more than a minute or so started spasms, even if I was using the ointment (efedipine and lidocane), for a few hours after BM. I find myself wondering, how late would they allow me to arrive at work?

The last thing I need right now is anxiety about anything, work or home or anything. My main job right now is to relax my tight ass (I never thought of myself that way, but if it's medically true, then I have to wonder) and let the fissure heal so I don't have to get surgery. If it means staying home from work for a few weeks (would that be enough time to do it?) then I will do it. If i have to get surgery, I will have to be home for a while anyway.

This is me not freaking out about finances and money. See, not freaking out! :affraid:

I'm having this weird sensation right now, looking at my body, and thinking "who ARE you?" I imagine my body is looking back, thinking, "finally she LISTENED!" I'm having a hard time wrapping my mind around the concept that this is a condition I am going to have to deal with long-term, and I don't know for how long, and it's going to require a lot of time and energy, and I'm still not sure when I'll be feeling up to sitting and standing like a normal person. I'm kind of floating in an in-between place where everything is shadow and nothing is clear right now. It's a very in-the-moment kind of feeling. 5:30am wake up time? Great, sure, I went to bed at 8:30 last night, why not?

The other big change is my diet. I finally found the magic formula late last week - eat ALL fiber foods: oatmeal and a banana and smoked salmon for breakfast; baked potato with hummus, and an apple with almond butter for lunch; and black beans and kale and sweet potato for dinner. Take colace, for softening. Metamucil is too scratchy coming out. I'm not eating meat (I will eat chicken or fish), or eggs, or dairy in any of it's magical incarnations, or tomatoes, or coffee, or chocolate, or wheat, or stabby nuts, or popcorn (typed it as poopcorn, hahahahhaha beavis, poopcorn) (TP for your bumhole) (Funny how that takes on a whole new meaning right now, hmmm)

I don't have a problem with elimination diets. I see it as a challenge for my culinary skillz. Which are extensive. Not to toot my own horn, but toot. It's really sad that I can't eat my spicy favorites or chocolatey wonderfulness, but I'm experimenting with vegetables as much as possible. Earlier this year I did a couple of Whole 30s, which is a different kind of elimination diet. Before the AF I was eating what I considered healthy food - but now I can't imagine trying to poop out a grassfed burger or whatever - and now I think I'm eating SUPER healthy food.



My day today, since this is a diary, I better get down to it:

Woke up a bit before 5am to pee, had to have BM at 5:30am. Followed by a sitz bath with a bit of epsom salt, some ointment, and got back in bed. Spasms were mild, and manageable, and I was mostly able to relax. When it was time for AJ to get up for work, I tried to get up and fix her breakfast, and failed. The fact of standing sets off the spasms as though the cream was not even there. I was so frustrated, but couldn't be too mad. Once I was back in bed, focused on relaxing, the spasms stopped. Blessed relief.

It was work, managing the spasms. Freedom from pain required stillness, lying down on my side or my stomach. Brief walking trips into the bathroom or kitchen. I applied the ointment 3x already before 1pm, and take another sitz bath. Hah, work called when I was in the bath. I think I used too much epsom salt that time - gave me a weird feeling.

I had to make meals in shifts in order to avoid the spasms. Now, it's 11 hours past the last BM, and the spasms are pretty much finished until my next BM, hopefully not til tomorrow morning so I can get some dishes done and try to make dinner. I miss normal life.
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Re: make it easier!

Postby Scientist2516 » 04 Dec 2013, 22:20

Wow, what a great read! Thank you so much for writing so vividly about your experience. There was lots of really thought-provoking stuff in there. I like this a lot:

'I imagine my body is looking back, thinking, "finally she LISTENED!" '

I feel like that too! I was eating a very healthy diet, but never drank enough water - was always dehydrated.
It's a pity my butt had to shout SO loud to be heard! But finally I did hear and started drinking.

It sounds as though you are making progress, have fixed your diet, that's really good. I love your spirit - you are handling this really well. In due time it will hurt less. Hang in there!
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: make it easier!

Postby vdb324 » 04 Dec 2013, 23:37

Ditto. Not enough water for me. Now, I HAVE to drink 110+ ounces a day.
Feb. 2013 - Developed AF
July 2013 - Diagnosed AF;nifidepine lidocaine treatment
Oct. 2013 - 1st round of Botox & skin tag removal
Dec. 2013 - 2nd Botox
March 2014 - Spinchterotomy
June 2015 - Diagnosed with Pelvic Floor Dysfunction/Vulvodynia
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Re: make it easier!

Postby whoknew » 05 Dec 2013, 09:01

Water, water, water... I am drinking so much water these days, I have to pee right after I pull up my pants and walk out of the bathroom. I normally drink an acceptable amount of water, and now I've kicked it into overdrive. Plus for the first 8 hours of the day I can't get out of bed, can't sit, can't lie on my back, and lying on my stomach puts extra pressure on the pelvis... at the same time, I'm working on keeping the muscles in that area completely relaxed, and the combination of factors add up to almost constantly feeling like I have to pee.

Speaking of which, now I have to pee, and I think I'll take a sitz bath while I'm in there. Pain today is YIKES.
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Re: make it easier!

Postby whoknew » 05 Dec 2013, 09:35

Oh good Lord. Is it possible that I have another fissure? I was not thinking surgery would be a good idea, but if an operating table appeared right now I would hop right on.

This morning's BM felt huge. Yesterday's wasn't fully solid and came right out. I used the ointment, stayed off my feet, and after about 8 hours was mostly spasm-free.

Today is a different story altogether. I slept in until 6:30 and didn't have to go until about 6:50. Today it felt like it was large in circumference and hard at the tip, but once it started the whole thing just fell out. But the tip -yeouch- felt like it was scraping me and both sitz baths today have felt unpleasantly stingy. The pain today is a beast compared to yesterday. It's taken me about 10 minutes to write this short paragraph because I keep taking "ouch breaks". You know, so I can stop everything and put my full attention on the pain: "Yes, yes, I know, you are there, and you have something to say. I am listening. Now that I've listened, can I please go back to ignoring you?"

I just had a moment of intense fear: what if this is my life now? What if I get surgery and don't get better? What if I am stuck with this pain forever? and worst of all, what if it gets worse?

This pain makes me weak and drains my hope. It makes me mean and bitter and distant, or weepy and withdrawn. I need to do something more distracting than trying to tell my story.
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Re: make it easier!

Postby Scientist2516 » 05 Dec 2013, 09:42

Whoknew, I know it feels terrible right now, and it's hard to imagine ever feeling better, but you WILL get better - it just takes time. When you are in the middle of the worst part you feel as though it's going on and on for ever, but it's won't. Soon you'll look back on this time and remember how awful it was. This won't last for ever, you will improve. It will probably be a gradual improvement with setbacks, but don't lose heart - this will pass.
:smilyhug:
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: make it easier!

Postby whoknew » 05 Dec 2013, 15:55

I got so desperate, I called the CRS office to talk about the surgery. I spoke with the nice lady who helped me on Tuesday and she gave me some recommendations, but not much new, that I'm not already doing. One thing she said is that the sitz bath that goes on the toilet is actually not good for me, a tub would be best, but if I only have a shower, I should stand in the shower after BM and let the water hit me. She seemed surprised that my body wasn't responding to the ointment - as am I - but there was too much pain to ignore. A few moments were as bad as I remember when I wasn't using any ointment at all. She's going to have the doctor call me. AJ has already requested off Thursday through Sunday next week, so I'm hoping I can get in with such short notice.

It's only been in the last half hour or so that I've felt the spasms and burning pain subside. Now I just feel kind of weak and sore and uncomfortably gassy. No more beans or hummus for me :( I'm trying to tweak my diet so I reach some "magic poo formula" and create that perfectly smooth, toothpaste consistency. I don't even care anymore; if I need to eat oatmeal and bananas and smoked salmon for breakfast, and kale and sweet potato and smoked salmon for lunch, and mashed squash and quinoa for dinner every night, I will do it.

On the plus side, I feel better than I did earlier, and though I still can't sit or stand for long, I'm at least not in horrible distracting pain. I have from now until bedtime to do more things! as long as I don't have to poo :)

There is so much about this that I'm still wrestling with - the possibility that I'm going to have surgery; the possibility that I might not be going back to work for a few weeks; the fact that no, it's not Groundhog Day with Bill Murray, and that yes, this is my life now. This is my life now.

I feel bad that I don't feel up to helping with chores or taking care of the pets. We have three dogs and an adult cat and a 4-month-old kitten and the poor, dear little things get on my nerves right now. I love them but I can't handle playful kitten jumping up on me and sticking in the claws. They don't know any better, and they are wonderful little beings, but they're not helping me right now. :) I'm going to try to do some dishes tonight, assuming I feel up to it. The kitchen isn't in a horrible state, but it's not super clean either.

Poor AJ. She saw a roach in the kitchen last night and freaked out. Normally I would be super-freaked out and she would be the one trying to calm me down... but the way I feel right now, I can't work up a care to give. Yes, it's bad. But, we live in a row house, and share walls with 3 other households. These kinds of things are bound to happen sometimes, and we keep a clean house, and right now I'm spending 33 percent of the day sleeping, 33 percent writhing in pain, and 33 percent trying to find a reason to enjoy life from my bed. I just can't allow this roach to be further evidence that my life is slipping out of control... so it's not. Maybe he's my totem animal for this journey. I wonder if he likes to play cards.

We do this thing at work. I work in an animal shelter, and sometimes people will abandon animals on our shelter property. You'll just be walking along and find a box taped shut with who-knows-what inside, or there will be a loose dog running at you, maybe friendly, hopefully. Anyway it's common when animals are abandoned for staff to become bitter and create a story about the horrible person who did this horrible thing and how could anyone do this to an animal and blah blah blah and before you know it, your day is ruined over this abandoned pet. So one of the shelter directors showed a TED talk about how the stories we tell ourselves are rarely true or based on fact, and how since we have to tell ourselves stories to make sense of the world, why not tell ourselves uplifting, life-affirming, hopeful stories instead of creating misery for ourselves through allowing ourselves to believe the miserable stories we create. An interesting concept, easier to apply in some situations than in others. I can believe the roach in the kitchen is my totem animal and is here to whisper secret mysterious knowledge to me while I stir my oatmeal. I'm having a more difficult time believing that if I can just relax, the pain will stop.

I just want to say I really appreciate that this forum exists. I have gotten so much useful information and emotional support just through knowing that I'm not alone in going through this, and that a way out exists. I hope my rambling posts help someone who needs it, if nothing else, to know that it's OK to go a little bit crazy. This pain is no joke.
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Re: make it easier!

Postby Scientist2516 » 05 Dec 2013, 16:06

I love your posts, Whoknew.
Don't be hard on yourself about your house. You need to take care of yourself in order to heal, and that's got to be the priority for now.
I just want to say that if nifedipine isn't working for you, try diltiazem or nitroglycerine. Nifedipine did nothing (no-thing) for me either. Diltiazem gave me some relief in the first couple of days, and was the beginning of healing for me. Unfortunately I was one of the 0.1% that get full-body rash from diltiazem so I finished the healing process on nitroglycerine.
So if one thing doesn't work for you, it doesn't mean you are stuck in fissure-land for ever and ever (until you get to kiss Andie Macdowell). You can try other drugs. I persevered with nifedipine for 6 wasted weeks before switching, but you shouldn't have to, unless your doc says it is working.

Good luck and say "Hi" to the cockroach from me.
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: make it easier!

Postby whoknew » 05 Dec 2013, 17:25

Thanks Scientist. I'm waiting for the CRS to call me back from my message to him earlier. The pain from this morning has subsided, so I'm a bit more coherent, but...

I just had to have another BM. I must be taking too much Colase, because it was mostly water with what felt like chunks of week-old used cat litter clumps in it. I jumped into the shower immediately after and cleaned off in there, and then just stood in the water. Instead of freaking out, I started chanting to myself: it's ok, it's ok, it's ok. I don't know yet if it's ok. But if I start freaking out over every BM I am going to lose. my. mind. For reals! PLUS SIDE: at least this means I'm drinking enough water! Heyyyyo!

My gut is still churning and I may have to go again :( I had myself fooled over the last couple of days, that I was on a once-in-the-morning-type schedule for BM, but that was before I decided based on this morning that I needed MORE stool softener. Now I'm thinking I didn't need more stool softener, but that maybe I just shouldn't have eaten baked potato for lunch yesterday, or maybe I had too much almond butter. But really, who knows if the stool from this morning is yesterday's digested food or from the day before? I will never know!

This means that I now want to start a food diary so that I can keep better track. At this point all of my meals are blending into one whole-grain, lean protein, orange mushy vegetable memory.

Tuesday (Doctor day) 12/3
Breakfast: Oatmeal, banana, smoked salmon
Lunch: Did not eat because I was at the doctor
Dinner: Salad bar from WF - lettuce, cucumber, peppers, beets, pesto chicken, artichoke; apple with almond butter

Wednesday 12/4
Breakfast: Oatmeal, banana, smoked salmon
Lunch: baked potato, guacamole, hummus, apple with almond butter and flax/chia seeds
Dinner: quinoa with coconut and carrots, black beans, butternut squash, cranberry sauce, cup of tea

Thursday 12/5
Breakfast: Oatmeal, banana, smoked salmon
Lunch: sauteed kale, sweet potato (no skin), smoked salmon
Dinner: Not sure yet, I asked AJ to bring home a chicken, and we have more sweet potatoes. Some cucumber sounds awesome.

To be honest, I am kind of over food right now. This whole year has been a long concentrated attempt to improve my health, and I'll be damned, but it looks like I am starting this new year in worse health than I left last year. I've lost some weight, and moved to a more plant-based diet, and I started walking more, which is a good thing. If it weren't for my earlier experiences with elimination diet and experimentation with how my body reacts to different foods, I would be in a whole different world of pain right now, still figuring out the diet thing.

I'm glad you like my posts, Scientist, because I can't stop the words from coming. I don't want AJ to start getting grossed out by me, but this is my life right now, and I am stuck living it. It's definitely the weirdest, hardest thing I've had to deal with in my adult life, and the most unpleasant. It could be so much worse, though! I am taking a moment to conjure up a feeling of gratitude that it isn't.
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Re: make it easier!

Postby whoknew » 05 Dec 2013, 17:27

Another plus-side: my skin looks AWESOME thanks to the super-restricted diet!
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