My recent story

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My recent story

Postby Worstyear » 02 Aug 2021, 07:59

Hello all of you, I'm new here but I would like to share my recent story... I've been reading the forum and I found very helpful how you support each other, and this encouraged me to ask for your advice and tell you my experience.
I'm new to AF. I actually think that I had the same fissure for years and years and autodiagnosed it for hemmorrhoids. I had good years where nothing happened and bad years where I felt pain everytime I went to the bathroom but 3 weeks ago hell started for me in a brand new way.
I've went to a first doc which told me I had hemmorrhoids and that I needed to get surgery. The sympthoms didn't felt accurate. They guy gave me ketorolac and nothing else. When I came back to the clinic I talked to the girls at reception and recommended other doc, which is now my doc.
He diagnosed me with fissure and explained me everything with detail. I have sentinel piles also but thats because of the fissure as you all know.
Gave me 0.2 nitro ointment, a full fiber diet and I started 12 days ago with that.
I eat full fiber and drink lots of water. And I go to the toilet every single day, sometimes twice (which I hate but cant control).
The diet seems to work form me, as I am not constipated (I drank 1 litre of coffee per day, never drank water... I ate well but I saw this coming).
Last week after my first week of treatment the doc told me that I was a lot better. But on friday I had harder stools (not super hard but apparently I am really sensitive) and a little blood showed up. I used to have blood regularly but that was gone with nitro and it came back. I cried 2 hours that day from frustration and took painkillers for the pain.
Last two days seemed ok (I still have pain when I go and nitro helps a lot with that, I also take ibuprofen once a day or two, as the doc said), but today I went and saw a little blood on the stool again.
I'm really sad. I feel less pain than when I started but I'm feeling really depressed. I suffered of anxiety and its coming back, the doc told me to take a little clonazepam (i was prescribed, still keep it with me jsut in case) and talk to my therapist about this.
I hope the treatment works, please share if you had similar experiences and if you think this is normal in the healing process.
A big hug to all of you and thank you.
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Re: My recent story

Postby Worstyear » 09 Aug 2021, 18:49

This is the 18th day (almost third week) of treatment. My vegan diet seems to work like a charm, but lots of fiber leads to 2 BM in the morning and that is quite annoying.
Last week I saw my doctor and ended up crying because he told me that I cant seem to dilate the muscle. I asked him if the fissure was large or complicated (I cant see myself there... I could faint) but he told me that no. He told me that I need to relax and manage my anxiety. That I have to have patience and that some people stop feeling pain in a week but some others like me take longer to heal. He also said "we have to try to avoid surgery".
I have to say that I cried and got really depressed that day.
On friday I went to the bathroom and it was the first time that I havent felt pain. On saturday, I didnt have to take ibuprofen or valium. Yesterday was ok but it started to burn like 4 hours later of my bm. Today I felt uncomfortable all day.
The pain is not heavy while BMs, that is a lot better. No blood at all either. But the spasms are painful. I would say everything is better but not ok. And the second BM makes me want to be sedated.
I'm applying nitro 0.2 twice a day, using LOTS of vaseline (cant stick my finger in... i feel the piles and sometimes i cant even understand the anatomy of the thing LOL). I do 2 or 3 sitz baths with warm water daily on the bidet. I wash with the bidet and use cotton to clean myself. I also use a hot water bottle and sit on it on my bed while at work. I use a donut cushion that i bought when i was misdiagnosed.
I used a tablespoon of liquid vaseline the last two days just in case.
I deal with pain with ibuprofen 600 (i take it just after the bm) sometimes 1 or sometimes 2 times a day. I took a little valium or clonazepam some days because my anxiety seems to make everything worse.
I'm trying to make breathing exercises in the toilet because I detected I get REALLY nervous everytime. Sometimes I even feel dizzy.
Thank you for sharing your stories, you are really helpful always.
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Re: My recent story

Postby Worstyear » 28 Aug 2021, 08:02

I'm at my 5th week of treatment with GNT, and according to my surgeon, the fissure is closed. I have to lower my ibuprofen dose to 400 mg (i just used 600 mg in the morning just after the bm so i switched) and to use the GNT but just at night.
He used his finger with a local anesthesic to proof if i was dilating properly and he told me that i do, happily.
I told him i still experience pain, not the same pain when the fissure was open (i just realized when it closed, the pain changed, i cant explain it but it is different) and told me that i have lots lf things going on down there, like my sentinel piles (i dont even understand their anatomy, i touch them and still dont get when they start or end, its so confusing), and the border of the closed fissure. When I go to the bathroom I feel like a sort of inflamation/light pain that lasts 2/3 hs (and i really need to take ibuprofen because it extends otherwise). He told me that the only way to remove them is with surgery and I don't want that at all. But if this will still give me pain, I'm going to think about it for a while.
He will check again in 2 weeks.
I've been really hopeful last weeks but I feel down now because I don't want to feel pain my entire life. I don't know if this will get better or worse with time, because everyday is a whole new rollercoaster.
Somehow, 4th week my bms reduced to just one per day, now i have days that i go twice and if i just go once, im afraid of having a hard bm the next day.
My diet basically is no chicken, no red meat, no cheese, no yogurth or cow milk (but sometimed i use cow milk, butter and cream for cooking), no caffeine (i take decaf but i've been taking regular once a week or so), no alcohol, and only whole grains (whole wheat sourdough bread, home made, i use lots of oats for my pies too). I'm not eating rice because i noticed that even the brown version tends to dry me out.
I also realized that I only need one portion of pulses a day because if i overdo them, no matter how much water i drink, builds up a hard bm.
Fish is my best friend, also i've been taking 2 fruits per day. And that's it.
I tried mineral oil some days (if i feel that i need it), but it hasnt made a big difference. I'm going to try miralax (here is called barex) next time.
I'm not doing sitz baths, at the exception when i shower because i like to fill the tub and relax, but i'm using an electric heating pad a lot which i deeply recommend.
I'm also using vaseline a couple of times a day, and now trying bio-oil and aloe vera gel (a friend got me a plant ❤)
I hope this gets better with time. Thanks for reading.
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Re: My recent story

Postby Worstyear » 28 Aug 2021, 12:39

Small update: I didn't use the GNT cream after the bm because of what the doc said (using it at night only). Well today I felt the area burned and burned and hurt. I think I still have spasms. Went at 9 am to the toilet and it was 2 pm and the thing did not stop. I took a higher ibuprofen dose and nothing. So I used nitro. I decided to use it after the bm and not at night. I hate to contradict the doctor with the healing and dilation and bla bla but I can't live like this, and the cream 10' later fixed everything.
I had to take clonazepam because this broke my nerves. I think I might need the 8 week full treatment, because even if the fissure is closed, I believe that it is deep and got the muscule very traumatized.
I have no issues with GTN, the headache now is almost non existant. I'm afraid that it might give me some dry skin but I'll take care of the area with vaseline and wheat germ oil. I just realized that this situation is still caused by the sphincter and not the skin piles, etc.
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Re: My recent story

Postby Worstyear » 19 Sep 2021, 23:25

Hello again.
I wanted to update this before but I couldn't.
I'll fast forward a little bit:
On week 7 with the nitro treatment i was feeling better. Like, almost cured. No ibuprofen for days, lowest nitro dose, no spasms. Went to my surgeon and asked him about some things, i told him i was taking half a dose (8 g) of miralax and gave me his blessings.
This was a thursday, a week ago. And then monday came.
I had a perfect stool, perfect texture, was a little too big i think but i felt no pain. 2 hs later a spasms began. I waited for 5 hours until the burning sensation was gone.
I was destroyed. My surgeon keeps telling me "the fissure is closed".
I saved 2 appointments on october for two other doctors. I was supposed to cut nitro 4 days ago but i cant because i still feel the burn. I have 2 kinds lf burning: the post bm, inmediatly, that lasts 1 hr if i take ibuprofen, and the spasms, appearing 2 hs later. If i go 8 am, i feel pain until 9/10, then pain stops and we go again at 12 until 14. I measured it, yes i did.
I started magnesium citrate supplements 2 days ago so i guarantee myself the softness of the stool. I just dont know what the hell anymore.
Next step is LIS. We dont have botox here. Im trying to accept this but i cant.
I'm going to check on sea salt sitz to erradicate bacteria.
Btw, no matter if i take more or less fiber, my colon does whatever it wants. I go everyday to the toilet, drink 2 lts of water of more. I appointed a nutricionist to talk about this, because i dont want to depend on miralax to avoid this fissure forever.
I suffer from anxiety and been on cbt for 5+ years to change. This is not helping, at all. Im starting to believe I did this to myself and I have to let go.
I'm really afraid of surgery, we dont have co2 lasers, just plain old fashion lis. I'm a 34 years old woman with no kids and planning not to have any, but if i do, i can opt for c-section anywhere. So i'm trying to fight this incontinence fear.
Anyway, I've learnt more from this forum than anything. I hope to have good news soon.
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Re: My recent story

Postby Worstyear » 19 Sep 2021, 23:35

Oh and by the way, I don't know if it's just me but af hurts A LOT MORE a few days befofe my period. I just forgot about this and it's really important. Pain is a very complex thing.
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Re: My recent story

Postby Worstyear » 02 Oct 2021, 08:33

This is week 10 and I have some things to say.
I stopped using nitro last week. I discovered that the last uses didn't made a difference at all so I finally stopped as the surgeon said.
I have no pain at all while bms. The problem now is the swelling it comes afterwards.
Sometimes the swelling appears just after the bm and sometimes, 2 hs later. I control this every day.
The only thing that stops the swelling pain is ibuprofen 400. I take just one pill most of the days.
I feel the sentinel piles swollen with my own hand and I believe that either a) I have a tight anus (well, yeah, of course i do), b) the scar from the fissure and the piles reduce the anal canal and they irritate, c) probably both

Pain scale is something that I would like to register for my own mental health. When this hell started, it was a 10/10, now, probably 3/10.
I can live a "normal" life with an eye on what i eat and how much, but the keys for me are mostly eat soluble fiber (and do not obsess over ir), not eating rice or potatos (i do eat potatos but whith hummus or rich fiber veggies), drinking 2+ lts of water (this is SO important), reducing caffeine intake (i take one or two decafs and one caffeinated coffee per day) and compensate water, reducing gluten (a piece of bread or some cookies, or something is ok, wholewheat is better)

As some of you say, bulky bms or going too much often is tragic.
I also had food poisoning last week, 2 days of diarrhea and the fissure was better than ever. No pain, nothing. I had a normal anus for 4 days which made me think that the fissure is fully gone and now i have to deal with it's sequels.
Something i've noticed is that my scar leaves a mark on the bms. Like a line. When it was open, that line was blood. It's so weird.
Anyway, I have an appointment with my doc on 14th and I'm gonna pay for another crs surgeon evaluation on 28th just to hear their opinion.
I don't know if I will get better than this so I want to see what options do I have. If I remove the huge sentinel swollen tags I have, I should get LIS, because I dont trust this fissur.
I tried to remember when bleeding started and it was probably +5 yrs ago but it never hurt like this.

Oh and Im using 400mg magnesium citrate and half a dose of miralax, and I can't thank you all enough.
My plan is to continue like this until january and evaluate if Im healed or not.

I hope you are doing fine, take care of your mind and body ❤
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Re: My recent story

Postby missy moo » 02 Oct 2021, 18:20

I think to much fibre can be a huge problem it makes stools big and it creates more bms. I think lis is the only long term option.
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Re: My recent story

Postby Worstyear » 08 Oct 2021, 09:54

Yes I agree with you missy. Fiber is necessary but in a healthy amount. I mean we all should eat a couple of fruits a day and 5 portions of vegetables. But if i overdo things like beans, it backfires and i get huge, dry bms.
Lentils (all kinds of them) are really good, also replacing things like noodles for whole wheat, and eating less starchy things help a lot.
If you want recipes, I'm an excellent almost-vegan cook now hahaha.

God bless magnesium citrate and miralax, and tangerines (I love you missy hahaha)

I still feel like the last time I posted here. My scar and sentinel piles swollen when I go to the bathroom. I just can handle that with heat on good days or ibuprofen on bad days. Tylenol doesn't work. Nitro doesn't work anymore either. I did some experiments last week and confirmed 100% that what I'm experiencing right now is like a dull aching, swollen feeling, like when you hit your toe with a hammer. It is not the same pain I felt before, I dont feel spasms either (not the burning sensation at least).

If I take ibu 600 after a bm, it's like nothing happened. If I take 400, sores a bit but goes away faster. I try to take only 400 if I really need to, once a day, and skip whenever I can (i take it 2 days in a row, max 3, take a brake and start again). It's the slightest of all antiinflamatory drugs. Why this thing is inflamed? I have no idea, but nitro cant stop this. So i believe this is a tissue thing and not a sphincter thing. And my sphincter is dilating really well lately.

I've read about long term use of ibuprofen and I don't like it so I have decided to well, wait until january and see. If I still feel like this and doesn't get better, I'll schedule LIS. I'm not afraid anymore.
I don't want to F**k up my gut when a surgery could fix a recurrent issue in a 90+%

Next week I have my doc appointment so I'll ask him about a couple of things. But I know that I have that option whenever I want (thankfully, I have good medical ensurance) and the clinic is 10 blocks away :D

I'm doing like 90% better than when hell started but I'm aware this is chronic and ugly and might come back.
My mood is a loooooot better and that helps recovery too. I started with my painting classes again, walked a lot, saw lots of friends (in the afternoon after 3 pm I feel like a normal human being) and worked better and happier.
Anyway, I hope I can give you more information soon, probably on my two docs visit I'll have more data.
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Re: My recent story

Postby Camry » 08 Oct 2021, 18:17

Hello worstyear. Been with fissure for years also. There are good days and bad. Bad days for me would be suffering a retear and you see blood in the toilet bowl. I too am an anxious person so looking at the toilet bowl to check if there is blood after bms has i think became a habit. This i think needs to be corrected since it makes you disappointed to know you are healing and injured again! My butt also is sore if i have to have more than 1 bm a day. Am very sure if i make 2 bms a day it would be spasms until the afternoon. Sometimes i feel that i need to poop more not pretty sure might be anxiety too. I also take clonazepam as needed. Currently am watching what i eat and take colace to soften things out. What i am trying to avoid is the hard tip bm since this sometimes is the trigger of my retear! Oh well hoping for the best for all of us.
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