Giving up hope, please help...

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Giving up hope, please help...

Postby paininuranus » 17 Sep 2012, 14:05

Hi,
This is my first post. I had a fissure 10+ years ago which I had surgery on and haden't had any issues, with the exception of a couple times having a small amount of blood on the stool. Then within the last year it started giving me problems with alot of bleeding and excrutiating pain which eneded up a vicious cycle for months until I started taking stool softeners and/or miralax daily to heal it. (I visited the same colorectal surgeon who performed the surgery and he said it was very superficial and should be healed within 2 weeks.)
The bleeding has stopped and there is no more pain when going to the bathroom (still taking the stool softeners). However now, when I'm in nearly any position other than lying down (especially standing) I have a somewhat duller (than it was as an open fissure), burning/aching pain at the outer sphincter and going inside about 1/4" and DIRECTLY where the tissue splits where the fissure was. When I stand, the pain begins at either a 0 (if I was previously laying down) or a 3 or so if I was sitting, then within 30 seconds to a minute the pain progresses to about a 7 or 8 and im literally on my back moaning trying to lessen the pain.
At the suggestion of the doctor, I went to the ER to have a cat scan (I have no insurance). He wanted to see if there was some abcess or something else going on up there. The cat scan came out normal. They gave me percocets and they didn't do a damn thing except get me high and make me sleep. Today I went back to the doctor who did my surgery and he did an exam, put a scope up my ass and said the fissure is totally healed and there is no more fissure there. This was very discouraging because now I have no explanation for the pain! My helpless theory is that the fissure healed with too much nerve tissue exposed. He told me my only option is to go to the county hospital and have them do another surgery (even though the fissure is supposedly healed).
Needless to say I am housebound because of this (fortunately I work from home selling on ebay etc) and feel as if my life is over (at 36 years old). Sadly if this pain does not stop I will be forced to resort to medicating myself with whatever will stop the pain..? Heroin? Please help if you have any suggestions.
Pain
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Re: Giving up hope, please help...

Postby ZeeZee » 17 Sep 2012, 14:14

Hey bro! No way! Don't give up hope! We're all here to support and guide you.. There is hope.. If it helps, it too felt as you do now.. Hopeless, like my life is over etc. Tht isn't true.. There is always hope.. I can suggest tryng another CRS, nag until you get an ease.. Your body is simple.. Somethng MUST be causing the pain, it's just to find the source and deal with it.. Yeah, easier said thn done but keep tryng, don't give up! You're only 36, someday in the future, you'd look back at this and smile! As for me, I just had my Fistula laid open, I've got a gaping hole on my right butt cheek but thngs are lookng up! So stay positive and keep at it! We're here for you!
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Re: Giving up hope, please help...

Postby nightmareonelmstreet » 17 Sep 2012, 19:15

Don't give up, have you tried rectiv. I was at my wits end with all the creams until i tried this. I can finally poo with no pain and no blood for a cpl days now been using the cream less than one week. its been my miracle because i sure as hell do not want surgery i just had a hemmorhoidectomy and it was pure hell. thats where my name comes from, going to the bathroom was my nightmare on elm street!! seriously
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Re: Giving up hope, please help...

Postby Bumpkin » 18 Sep 2012, 16:00

I'm so sorry you're dealing with so much pain. :(
I can't imagine what else may be causing the pain besides a fissure.
I would definitely get a 2nd opinion from a different CRS before resorting to a 2nd surgery.
Good luck and let us know what you decide. Image
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I HAVE THE SAME PROBLEM - SOUNDS LIKE BOWEL INFLAMMATION

Postby Coconut Oil Healed me » 18 Sep 2012, 21:57

I have/had the same problem. The doctors thought the pain was from an anal fissure and it turns out I had inflamed bowels. I had no stomach cramping or pain other than just inside my anus.
I had major pain INSIDE my rear end for awhile now. I would have to have a bowel movement anywhere from 10 to 30 times a day through my anal fissure. Turns out I had bowel inflammation from using too much Advil and other anti-inflammatories daily for my sciatic back pain. The internal bleeding stopped as soon as I stopped taking these pills.
As soon as I sat down or lied down the pain inside my rear would multiply. Oxycodone and other pain killers did nothing to dull the pain. Some days were better than others but I always had pain.
The only relief I would get is having a bowel movement which would end up being a little speck of yellow/ white oily pus. The body was pushing the poison out from my inflamed bowels.
The doctors thought it was just an anal fissure and I healed it myself over a month by using virgin coconut oil several times a day. I spread it all over the outside and a little at the opening of my anus. The itching and skin rash disappeared. Fissure and itching healed by Coconut oil.
After the anal fissure disappeared I still had the internal pain. I would lie down with either a heating pad or ice bag between my legs. I had a colonoscopy and they couldn't see any problems. They did biopsies and found I had inflamed bowels (colitis).
I am now taking PENTESA (colitis medication) that was NOT really helping.
I just started taking a hydrocortisone acetate 10% enema foam (CORTIFOAM) $100 that has greatly improved the internal pain. I wish I would have had this a year ago. In a few days I noticed a dramatic difference. I have been on the medication for 10 days. Every second day I have a flare up where I have to go to the bathroom still several times a day and the next day is almost pain free. My body is healing with the cortisone foam placed directly into the anal area.
So you might have inflamed lower bowels that will be healed by the enema foam.
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Re: Giving up hope, please help...

Postby paininuranus » 20 Sep 2012, 18:53

Thanks for the replies. I applied for insurance so I can go to the best doctor. I'm just going to suffer through 3 months so they dont suspect a preexisting condition. I'd try the rectiv but I just called the pharmacy and its $480 for a small tube. I guess the worse the pain is and more desparate the patient is, the more money they know they can rape you for. The cortifoam is $357 without insurance. I guess I'll need to wait until I get insurance.
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Re: Giving up hope, please help...

Postby Lauren12 » 20 Sep 2012, 22:14

I don't know if this information will help. I also had a healed fissure but was still in a lot of pain. I saw three consultant colorectal surgeons (I live in the UK) and only the third really knew his stuff and cured it.
When surgeons do a lateral internal sphincterotomy (which I assume is the surgery you had ten years ago) they decide how far to cut. Obviously if they cut the internal sphincter completely, whilst it would completely remove the muscle spasms that cause the pain, the patient would be incontinent, so how far to cut is the surgeon's judgement, so far as I know. I have heard and read of patients going back for more surgery some time later and having the muscle cut further.
I had a chronic fissure for two and a half years. My life was a misery. The first colorectal surgeon I saw tried Diltiazem hydrochloride 2% Cream (Anoheal). I used this for about five months - far beyond the time that research shows it's effective, as I learned later. I saw the surgeon two or three times during this period and each time he said the fissure was healing on its own. Yet still I was in huge pain. He referred me on to a more experienced colo rectal surgeon, this time someone who works in a hospital which specialises in conditions of the lower bowel.
The second colo rectal surgeon injected Botox into the internal sphincter after extensive scans to see if there was any other condition responsible for the pain - there wasn't. It was hypothesised that the pain was a result of the muscle spasms, I assume, as by this time the fissure had healed. So I went under general anaesthetic expecting to have a botox injection and woke up not only having had botox injected, but having had my haemorrhoids banded and skin tags removed as well in case they were the source of the pain! Very painful. Once the pain of that healing had passed however, it was clear the botox hadn't worked to take away the pain, so six months after the first lot of botox, I had another lot. Still it didn't work.
At this point, and in despair, I saw the third colo rectal surgeon who thankfully was a godsend. He understood entirely what was happening and had had similar problems himself in the past. He must have read every bit of research available. My fissure had healed, but I was still having muscle spasms. Furthermore, because the anus had now become tight (as with any muscle in the body, when it's exercised, it builds up) I was re-fissuring in a minor way almost daily with bowel movements. Further, because I'd been in pain for so long, I'd started up a pain cycle between that part of the anatomy and the brain, so that minor fissures which wouldn't have been painful to someone who'd never had a major fissure, were excruciatingly painful for me. He explained that the anus is a sensitive part of the anatomy and it can take a long time to settle down. He recommended the lateral internal sphincterotomy and I leapt at the chance. This operation hadn't even been mentioned by the previous surgeon. When I asked why not, he said that it was medical orthodoxy (in the UK at least it seems) that if a fissure has healed, then the patient is not offered the operation, even if they're still in pain. When the Botox had failed, the previous surgeon wanted to refer me for biofeedback. However the current surgeon said that biofeedback was more effective for conditions such as incontinence, and there was no great evidence to show that it was that effective for spasms connected to a fissure.
So I had the LIS op. I'd read accounts on the internet from people who that said that their pain went in a very short time, days or weeks. Well my pain took months to subside to normal sensation, so anyone reading this who wonders why their pain hasn't stopped days or weeks after the LIS - some people take longer to get back to normal, or that was my experience anyway. It doesn't mean it's not effective. Do check with your surgeon if you're worried about anything however. I did have some trepidation at the operation but the surgeon said he thought I'd been surprised in that it wouldn't be as painful as I thought afterwards - and he was right!
Well as mentioned, it took me months to get back to normal after the op. The pain cycle that I'd built up through having suffered chronic pain for two and a half years slowly downgraded to normal sensation. The surgeon also explained that the whole operation of the anus and lower bowel in passing a stool is quite an intricate process and that needed to subside to normal. I think he meant that when you have a fissure, you're unconsciously tensing 'down there' in anticipation when you pass a stool, even if you don't realise you're doing it - and that takes a while for your brain to relearn a more relaxed way of going about things.
So over a year now after the operation, it's normal. I owe my life to that surgeon - he gave me back my life. He said my muscle tone in the anus is still relatively high, considering I've had the operation, so for a while I did, still, experience some spasms, but much reduced. He said that in women, anal muscle tone reduces after the menopause and whilst in some women that's a problem, in my case it would be a good thing.
I did, still, have one day where a fissure returned, more than a year after the op and I was plunged into depression, thinking the whole thing was happening again, as it was the sort of pain I'd had pre-op. But it only lasted one day! I was OK by the next day. When I rushed back to the surgeon to ask him about this, he said if something like this happens then because I've now had the op, it will heal, as it did. I'd been on holiday at the time, so change of diet and heat changed bowel habit, leading to a minor fissure.
Whilst I was on stool softeners during the healing process, and when I had a fissure, I've now stopped all of them, and maintain a regular bowel habit by drinking 200 ml prune juice a day.
OP, I'm really sorry to hear you're going through another bad time. Please hold up - if it can be fixed once, it can be fixed again. I'd advise to find yourself the most experienced colorectal surgeon you can. That's not always easy, as I know, as the surgeon I saw who was the most renown, was the most unhelpful. I'm sure they'll do all necessary scans and procedures to establish that it is fissure-related and not some other condition causing the pain - but as I know, you can still be disabled with pain even after a fissure's healed, and some other treatment may be necessary to set the anus right again. I wish you all the best.
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