Long Time Sufferer, seeking direction

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Long Time Sufferer, seeking direction

Postby KennyG » 25 Sep 2017, 12:59

I've been lurking these forums for months now, using it for general advice on what to do but so far hadn't posted

I'm from Canada, if you know our health system, you know it may be free, but its extremely SLOW, like something i could get dealt with in a week or two in the USA is 8 months here.

I've been suffering with fissures for a long time, but for ages never thought much of it.

I'm 32 now but when i was like 14 was when it started, I had bloody movements

At the time i went to the doctor who gave me the line "just eat more fiber"

I'd eat fiber, have some improvement, then have another incident, rinse and repeat,

I'd go see the doctor again and again ang again and they would tell me, not a major issue just have a better diet.

Eventually I pleaded to be seen by a specialist(A GI) who told me its a fissure.

eventually it healed but it never stayed healed, over and over it came back with a bloody movement, but then 2 days later it was gone

Now lets fast forward to 2017,

In April almost out of nowhere the pain started to come on more and more in the anus region, starting in july i could no longer work because the pain was so severe i spent most of my day trying to endure the pain rather then being productive at work.

Symptoms i had were
- burning
- itching
- bleeding (sometimes pouring out)
- the pain that lingered all day
- sometimes feeling like i had to poop

The first month or two that was all the symptoms i had, but then more symptoms came on

- Spasms waking me up in the middle of the night and sometimes at random times during the day
- Tingling sensations that radiated down into my scrotum, and upper thigh

I've tried everything there is to try,
- Higher Fiber Diet
- Liquid Diet
- Juicing Diet
- Metalmucil
- Lax-A-Day (Miralax)
- Calming teas like chamomile
- Magnesium capsules (nearly 1000mg)
- Steroid supositories
- Diltiazem Cream
- Nifedipine Cream
- Botox injection

3 months back i seen my CRS for the 2nd time, I told him the symptoms and how it hasnt improved at all

He said my spasms and tingling were unusual for a fissure so he recommended a colonoscopy which we went ahead with,

upon investigation he found no diseases at all but found a small fissure at the 6 oclock position. I thought this was unusual since i indeed feel pain at the 6 oclock position but sometimes also at 3oclock where he told me there is nothing.

he told me it was so small he finds the severity of my pain unusual, at that point he administered the botox injection, which backed off the tingling sensations by about 80-90% and some pain too, however if i was to rank my pain as a 10/10 before, its now maybe a 8/10

I returned to him again 2 months ago at which point he again told me the tingling symptoms dont line up with a fissure

I asked him about can a fissure aggravate other things down there which he told me no, im not so convinced.

Regardless he recomended we operate, he purposed 2 operations

Flap advancement OR Lateral internal Sphincterotomy

When i asked him would he do both, he said its out of the question.

He told me he will decide which is appropriate at the time of the operation

Right now im waiting for a surgury date, but I'm left with so many questions

- Will a flap advancement stop the spasms?
- Are my symptoms like the tingling into the upper thigh and scrotom abnormal (related to pudendal nerve or levatar ani?)
- Should i even move ahead with the surgury given his uncertainty
- Something that stood out as strange to the doctor was that even though initially i had alot of bleeding, in the last 4 month i've had zero since changing my diet and taking alot of softeners daily, even still there is zero improvement to the fissure symptoms, do other people have this where the bleeding has backed off but other symptoms remain


Here's another question since were on the topic,

I find it very difficult to get cream up into the anus, like even when the anus is not in severe pain, if i touch it, it feels hard like a tense muscle, however almost as if completely at random, sometimes ill touch it and its completely soft. If i try to force cream up i just injure it, it starts to feel sore, hot and angry.

What is normal? are you supose to be able to just slip your finger up there without resistance?

So much stress and anxiety, this is absolutely obliterating my life.
KennyG
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Re: Long Time Sufferer, seeking direction

Postby patience_and_healing » 26 Sep 2017, 23:59

I don't know much about advancement flap surgery so I can't comment on it. You can try searching for others' experiences about it on this board. I think there are more studies done for LIS than advancement flap.

There are a lot of sensitive nerves in the area so the tingling may be related to the long term fissures. Your pelvic floor could have issues too.

If your surgeon is not confident that a surgery will solve your problems then I suggest a second opinion. The size of a fissure often has no relation to the amount of pain it causes.

It's possible the bleeding no longer happens because your BMs are soft enough.

Try to avoid pushing your finger in there because it will simply irritate things. Just apply gently on the rim and it will work its effects inside too. Make sure to clean up any residue daily to ensure you don't get any skin issues. The sphincter tightens up when there is a fissure which is why the anus feels so hard to touch.

Don't lose hope! You'll get through this time, but you need a doctor who will be confident in how to treat you.
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
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Re: Long Time Sufferer, seeking direction

Postby KennyG » 27 Sep 2017, 10:00

I found another clinic, they wanted a doctor referal in order to accept me

I reach out to my family doctor who proceeded to tell me "if i gave second opinions to everyone there would be a tremendous burden on our medical system"

I literally was filled with emotional distress and anger, im reaching out for help and basically told shut up and wait your turn.

Ive already been waiting 6 months in severe pain every day of my life

My life is just popping advil and laying on the couch, ive gaining weight because im una le to move alot

I havent even got into the fact this hampers my ability to work and thus provide for my family and how this threatens paying mortgage.

Such frustration
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Re: Long Time Sufferer, seeking direction

Postby Mypoorbutt » 27 Sep 2017, 12:13

Yes your symptoms shout fissures and you do have one because he has seen it. It doesn't matter if it's small it's still there
My fissures caused agonising spasms for up to 24 hours after a BM turning over in bed at night set them off lying on my back set them off and going down steps set them off. The GTN and Botox both helped me. But the best thing I did was to find a CRS willing to give me LIS (I have crohns so no one wanted to risk it) I'm now pretty much pain free. And I used to be literally rolling on the floor sobbing from the pain.
I'm not sure if I would try the advancement flap before the LIS as the healing time from flap surfer is much longer.
Ask your dr to give you gabapentin as these were the only painkillers that touched the spasm pain.
I know it's bad and the spasms are truly horrendous but try to carry on as much as you can as this will get better
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Re: Long Time Sufferer, seeking direction

Postby KennyG » 30 Sep 2017, 14:05

Does anyone have fissure pain that stays all day

Most days When i wake up in the morning the pain has backed off from 10/10 to like 6/10 after i pass stool its right back to 10/10 till i got to bed

Im talking Different from the intense spasm sensation, just all day pain

Also im unable to sit for more the 15 min without the pain becoming unbearable

Im sorry if what im describing is confusing

Doctors are inconsistent in what fissure symptoms are
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Re: Long Time Sufferer, seeking direction

Postby patience_and_healing » 03 Oct 2017, 11:37

Yes it can happen. Sitting also puts pressure on the area which can cause pain. Have you managed to get a referral for a second opinion?
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
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Re: Long Time Sufferer, seeking direction

Postby KennyG » 20 Nov 2017, 11:07

I had the LIS, 5 weeks POST OP now,

I visited the doctor who tells me he doesnt see any fissures(however he did say this once before and on 2nd inspection he found them)

that said, i still have alot of pain coming from the 3 oclock(left side) area of the anus, hes stumped and doesnt understand where the pain is coming from

Still cannot sit without alot of pain.

hes referring me to get a prostate exam but when i googled symptoms for it, my symptoms arnt exact same.

on another note, can the anus tissue he cut still be upset from being cut 5 weeks post op?

Any input is appreciated
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Re: Long Time Sufferer, seeking direction

Postby Mypoorbutt » 20 Nov 2017, 11:21

Hi I was still in significant pain 5 weeks after my LIS, everyone is different and not everyone is lucky enough to heal as quick as others.
Having the other tests will put your mind at rest, but it’s not totally unusual to still be in pain. Think my pain decreased around the 12 week mark.
Good luck
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Re: Long Time Sufferer, seeking direction

Postby KennyG » 20 Nov 2017, 11:22

Mypoorbutt wrote:Hi I was still in significant pain 5 weeks after my LIS, everyone is different and not everyone is lucky enough to heal as quick as others.
Having the other tests will put your mind at rest, but it’s not totally unusual to still be in pain. Think my pain decreased around the 12 week mark.
Good luck


Thanks for you feedback!
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Re: Long Time Sufferer, seeking direction

Postby trouble_in_paradise » 20 Nov 2017, 12:05

KennyG wrote:Does anyone have fissure pain that stays all day


Yes, definitely, unfortunately. In some bad weeks, a good day will be when the pain finally settles down by dinnertime, giving me a few hours of normal each day. On bad days in bad weeks, it's pain around the clock.

I had the LIS in May of this year and am still recovering. It has not been a perfect solution but I spend maybe a few days per-month in pain rather than most of each week.

Good luck with everything. It is a brutal condition and progress can be slow, but there can be progress.
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