A belated intro/my story

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A belated intro/my story

Postby ut_outdoorsman » 27 Apr 2014, 23:18

Hello!


I’ve already posted a number of times on this forum, but I feel like I ought to introduce myself and tell my story. I guess I never did this before because I wanted to believe that I am a ‘temporary customer’ on this site. Well, I can assure you I have frequented it PLENTY…so here’s my story. Though I have been through few procedures and no surgeries, I couldn’t help but write this pretty long. I’ve written a small summary, and if that sparks some interest for readers, then go ahead and read the whole thing.


Abstract:
This article reviews the story of a man with an anal fissure who—under the influence of panic, instability, and failure to reach out to others—makes bad choices that make his situation and anxiety worse. Most specifically, it chronicals the trials of someone who received poor doctor care, who took hydcortisone suppositories for too long, who failed to get a thorough exam (an anoscopy) early on that would have detected hemorrhoids, and the proceeding mental ‘warping’ resulting from repeatedly constructing specific beliefs about the personal healing process, and then having those beliefs disproven over and over and over again. More than anything, it is the tale of a Chihuahua that kept nipping at a sore—the cone of shame would have benefited him greatly.

My story:


I am in my mid 20s and live a relatively outdoorsy and nomadic life. The problem began a few years ago, but it only became a chronic problem a year and a half ago.


Several years ago (Winter 2011) I had an incident of anal fissures. I went to the doctor and was prescribed Anucort hydrocortisone suppositories. After a week or so, all symptoms disappeared and I had no more incidents. Freaky, but done. Over.

1 year later (Winter 2012), I had another incident—this time I was out romping around the wilderness and didn’t have access to a doctor. With a change of diet, all symptoms were subsiding by the time I reached care, and so I did not see a doctor. The fissures disappeared.

1 year later (Winter 2013), I passed another hard stool, causing more fissures. Rather than go to a doctor, I made my own cocoa butter suppositories, having read that it had healing properties, and used those for a while. Symptoms grew worse.

Oh, the pain. Not debilitating, but I’d feel its presence as I walked around and did my daily activities. And then stool time, and then the agony. Symptoms grew worse, and I saw a doctor.

I went to see a doctor. When I went in to the doctor’s office, a nurse came in first and said something to the effect of, ‘yeah, if this is your third time, you might want to go get that cut.’ (I’m pretty sure she used the word ‘cut’). The doctor did a digital exam—yup! Fissures! He prescribed me a two-week supply of Anucort hydrocortisone suppositories, and gave me a sample pack of Linzess. He also told me that if this didn’t work, I needed to go see a surgeon. Symptoms improved but did not disappear. Not wanting to go see a surgeon—who I assumed would also want to ‘cut’ me—I asked the doctor to refer me to a gastroenterologist. They refused to see me because, considering that this was my third time, ‘you’ll probably need a lateral internal sphincterotomy.’

This series of interactions with medical ‘professionals’ is important, because it established an impending fear of surgery (no insurance, by the way) that motivated me to do ANYTHING else that the doctors told me to do to avoid it. Not good. Also, no one explained to me that going to see a surgeon does not mean that they are going to tell you to get surgery.

So I used the hydrocortisone suppositories until they ran out, and used very small doses of Linzess. (That stuff is POWERFUL! Holy cow. Extreme diarrhea. I’d open the pills and take a tenth of the drug.) Symptoms improved but did not disappear completely.

In May, I saw another doctor because symptoms had improved but not gone away. He pretty much just asked me what I wanted to do. Not knowing what I was doing, I told him, ‘well, it has been improving, so I guess keep doing what I’m doing…?’ So he prescribed me more hydrocortisone suppositories with an UNLIMITED REFILL (hooray!) and gave me another trial pack of Linzess. I used the Linzess daily and the hydrocortisone suppositories 2x daily from May to early August.

Again, things would seem better, and then a slightly harder stool, and ouch!

In June, the doctor gave me a nitroglycerin cream (1%--strong because a local pharmacy had to make a different dosage to avoid copyright infirngement). I used a combination of the nitro cream and the hydrocortisone suppositories from June through August, often applying the nitro cream onto the suppository itself. Again, it seemed like things would be going pretty well, and then I’d feel some sharp pinches down there.

Then I read about how I how the hydrocortisone suppositories are for short-term use only, and can atrophy the skin. Oh god, I am dumb. Oh no, oh no. In my fear, I had been willing to do anything to avoid surgery, and now I have made my condition worse…This fear, that I have permanently damaged myself, still haunts me.

I finally consulted with a surgeon in September. He told me that I probably hadn’t caused any permanent damage with the hydrocortisone in just a few months, and told me to start miralax. Miracle! I thought all my worries were over. But once again, I’d be doing good and then one day, I’d feel some might strong pinches down there.

Change of places, change of jobs. I started working as a backpacking guide for a while, and—with Miralax—I had no problems when I was in the field (ate primarily rice, lentils, oats, peanut butter, and some vegetables) and produced only one stool per day. Out of the field, I ate richer foods and produced 2 stools per day. The one time I produced only one stool, the next day I experienced pain with a harder, drier stool (which honestly wasn’t too large in size).

I began taking Key E coconut oil (hydrogenated) suppositories several times daily to improve skin health, discontinuing them mid January because I believe they were causing inflammation (the oils are hydrogenated, after all). I also began using prune juice (and still do) at night to guarantee a stool first thing in the morning.

Change of places! Change of jobs!

Then I started producing and using extra virgin coconut oil suppositories. Virgin coconut oil suppositories made the skin feel fantastic! However, all of a sudden, the stools started getting ‘stuck.’ The sphincter was getting very hypertonic and not even letting modestly sized stools through. This was a new problem—I really didn’t have the ‘spasms’ that a lot of folks describe and now all of a sudden it was closing tight. The skin quality felt great, but the muscles were tighter than ever. I saw another doctor who gave me Nifedipine (.5%) to reduce the tension. They also reassured me, about three months of hycrocortisone suppositories probably was ok. Things started feeling great again, until I had a big breakfast, and it was extremely difficult to pass a stool the next day due to the hypertonicity.

Just my luck…I finally find a natural substance that seems to be helping me out, and it causes my sphincter to go hypertonic and startss problems all over again.

I stopped use of the suppositories, and things improved, but I felt the same pinches here and there despite passing relatively modest stools. I started using one cup of coffee to make sure that I produced two stools per day, and then added some magnesium oxide in to my diet to compensate for any dehydration. The new job allowed me a lot of time to really focus on healing, so I did a lot of research and did everything I knew of to heal myself—vegetarian/anti-inflammatory diet, plenty of fiber, avoiding all food allergens, lots of healthy supplements, made sure my transit time was fast, got tons of exercise, very hydrated, Nifedipine, etc. etc,. Things seemed to be improving, but every now and then—pinch pinch pinch! WHY!??!?

At this point, I had constructed tons of beliefs about ‘for sure safe’ diets. ‘As long as I take miralax, I’m good.’ ‘As long as I take miralax and have lentils/beans with every meal, I’m good.’ ‘As long as I have two stools per day, I’m good.’ As long as I have two stools and I take miralax and magnesium, I’m good.’ ‘As long as I take miralax and magnesium and consume lots of water WITH meals, I’m good.’ Every one of these beliefs would get crushed at some point. Mind bending.

At this point, I should also note that the fissure hadn’t been causing me pain in a long time. It was just that I’d be feeling nicks and pinches every now and then, particularly while trying to taper off pharmaceuticals.

I decided to go see another colorectal surgeon. He gave me a digital exam, and told me that there was no active fissure—only scar tissue. And as for the hydocortisone oveuse, he told me that the skin seemed fine. He’s had patients that have been using them for years—against his advice—and they still have functional sphincters, so I should be ok. ‘The two weeks rule is really a litigious thing…you can use it longer. It’s not a great idea to use it for prolonged periods of time, but you can use it longer than they say without damage.’ Make sense, I guess. I mean, Miralax also says to not use it longer than two weeks.

I felt great!...for a few days, and then once again: the stool got ‘stuck’ and the pains were back. So I went to some other doctors and got an anoscopy—they confirmed that the fissure was healed, but I had six internal hemorrhoids. ‘Oh… so maybe that’s what all the pinching and it getting ‘stuck’ was about.’ So I got those reduced (via direct galvanic current (or ‘keesey’ method). I scheduled a checkup a few days out, just so he could double-check that the hemorrhoids had gone down correctly. Still felt some pinching.

The morning of the checkup, I had a larger than normal stool that was pretty slow coming out—a little stuck. More discomfort/pain/pinching and I assumed the fissure had reopened. ‘Well, at least I’m getting checked up this morning so he can see what is going on.’ The doctor told me the hemorrhoids had gone down, and no fissure. Just scar tissue.

I could hardly believe it. It sure felt like it reopened. So, I guess it really is psychosomatic…

It makes sense to a degree. I’ve been working this thing so long—I made it the central feature of my life for a few months—that I’m bound to be hypersensitive to even the tiniest pinch. Quite frankly, there is just a lot of trauma from having my beliefs dashed over and over again. I’ve probably built a few new neural pathways and pain receptors down there. AND I do have a tight sphincter—so it’s probably picking up all sorts of extra signals. AND, there is the whole hydrocortisone abuse thing. Maybe, though there is no fissure, the pain receptors are more exposed and therefore more sensitive. It still feels like it is refissuring sometimes.

I don’t know anymore. All I know, is that it is not as bad as it feels. I need to remember that. As long as there is no blood, I need to suspend my assumption that I have refissured.

Even though the fissure is apparently gone, I think it is still going to be a long road for me. It’ll take time and patience getting off the pharmaceuticals without causing more problems. I will have to be careful and smart about it. And my sphincter is still tight, so I’ll need to work on that. And I still have to get over the trauma of the whole year and half. And I still can’t help but wonder about the hydrocortisone abuse. And then getting back to a less strict diet and letting myself live a little. Yikes!

If anyone has any advice/experience regarding…
a) hydrocortisone overuse
b) diet/exercise (especially kegels/dilation) to keep the sphincter looser long-term
c) tapering off pharmaceuticals
d) overcoming ‘fissure trauma’
…I would be grateful for your input.

I’ll be posting here and there to add my wisdom and knowledge to the forum—I do feel like learned a hell of a lot of useful dietary and lifestyle information. Hopefully my experience can help others.

Take care, and I wish you all the best of health, everyone!
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Re: A belated intro/my story

Postby owmybum » 30 Apr 2014, 09:29

Wow... Thanks for your story!!

As for over use of the hydro.... My crs says it normally happens with high dose hydro that is used for a very long time, so I think you will be fine.
As for tapering off the stool softeners, if they are working to keep you healed, why change things just yet?? You can start to introduce " forbidden foods" with the safety net of mirilax if you want to start to get some normality back.
As for getting over the trauma of living with a fissure so long...... That's a hard one, and one I have yet to get to! I think it's just time and patience.... Then one day you will just be doing normal things without a second thought to your butt!

OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: A belated intro/my story

Postby sugarspice » 30 Apr 2014, 15:47

OMG you poor por thing, I swear that suppositries took me from a minor little tear to a full grown, long deep and chronic fissure...arrgh they're like bullets those things, my sympathys go out to you :-(

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Re: A belated intro/my story

Postby ut_outdoorsman » 03 May 2014, 15:12

Sorry for the delay in responding. Changed places, changed jobs. Haha.
I'm feeling better and tapering off the pharmaceuticals.

Ownmybum, yes I agree I should be patient with the miralax. I really want to get off the stuff though. I am trying to do it smartly--Indiana jones style. Rather than just come off all at once, I'm switching it out with natural alternatives. I switched out some 500mg magnesium oxide with 400mg magnesuim glycenate, switched UP a grade of Nitro (.2% -.5%), taking a lot more vitamin C (natural stool softener), eating more apples and ginger (which stimulate paristaltic waves), just started Trifala (an ayurvedic herb), and I am eating highly anti-inflammatory foods. I am almost down to half a cap of miralax and continuing down.

Once I am off the pharmaceuticals, I will continue to use the natural softeners, and experiment from that safety net.
Sometimes, the stool still feels uncomfortable just at the verge of the detante line, and it very 'burny' two days ago. But clearly no refissuring, just an 'all over' discomfort. Today felt better.

I still have a hard time making sense of the sensations down there. I just don't know what is real and what isn't. Thanks for your support! I wish you great healing and much peace of mind.
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Re: A belated intro/my story

Postby ButtQueen » 03 May 2014, 22:27

Outdoorsman, you are so funny. And totally on the road to recovery! Bear this in mind: your butt down there will take a hell lot of a time to get back to normal even if your fissure has healed. Bummer. But that's just a way of your butt to tell you that it needs extra care :-) With time, these pinching sensations will fade away too. Two important keys to anal fissure healing: patience and perseverance. One setback can be pretty disappointing, but one setback just brings you a lot more closer to recovery. Good look outdoorsman!
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Re: A belated intro/my story

Postby ut_outdoorsman » 26 Jul 2014, 12:20

hello all! if my story has been helpful to any of you, I've posted an update, and wanted to connect the two:

Here it is:
life-is-weird-t8658.html

I have had some retears since, and my condition got much worse. But the big change is that I have been diagnosed with pelvic floor spasming as well. Things are tighter than ever down there, though I haven't had any retears as of late. Weird.

Thanks for your support all!
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Re: A belated intro/my story

Postby ocugun » 05 Jul 2016, 15:25

Hi, I just read the story.
I have been suffering for 10 months ( after my delivery) from this fissure. I used dialtezem at the beginning, it did not disappeared, and doctor told me a surgery is needed. I am so scared of surgery. SO, I did not want it. I continously used dialtezeem for almost 6 months. My pain was reduced, and at some time , it diseappeard. However, this dissappearance was taking only several weeks, and it came back again with light strength.
Last Saturday, I got constipated, and everything returned to the beginning. Again, tears, and constant pain for hours!!! I went to a practitioner this time (due to the time issues) , and she gave me anucort hc! Should I use it or not? I am scared because of this story. It will be hard to push it inside, because of the whole unbearable pain.

What is your advise?
Thanks
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Re: A belated intro/my story

Postby aolson72178 » 05 Jul 2016, 22:13

Oh I have been dealing with this fissure and hemmorid issue for years aounrd 8 years ago it happened very large bm bleeding and pain,went to docotors many times over the frist year it comes and gose finnaly got in to see a butt doctor and he wanted me too do operation,so i called to set it up they wanted 3k up front,omg i dont have thank kind of money didnt then dont now,so four 8 years on and off creams,supposetories learned to stay away from dairy,so a few weeks ago it came back bad ,i had been off work for 4 weeks and started a new job 2nd day i am at hospital with this huge bm,i think it was a cross between dairy,drugs and beer,so now its almost 3 weeks since ,i am going one time every 2 days,this morning i laid in bed 3 hours could not sleep due to pain,i am at my wits end with this and just started looking online a few days ago today is frist day i found this,i found a site about cocnut oil but that seems to burn more so going back to just water baths,i am trying to drink losts of water and eat less meat and more fiber stuff for a meal i had a can of baked beans with a bit of hamburger meat was good but i cannot find anywhere what meat would be the best to eat,anyways i will post more when i have more time,its nice to know i am not alone ,also i am taking phillphs laxitives 2 before bed i am upping the dose today due to large bm yesterday i have cream from doctors but seems pretty worthless,i have a tear in my inner rectum and not on my outter so i have no idea what i can really do,apparently there are differt kinds of fissures
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Re: A belated intro/my story

Postby healthybutt » 09 Dec 2016, 01:50

Just reading this as well -- ut_outdoorsman, I was on (and still am on) that same train, where I think I have it figured out, then my foolproof strategy fails, then I find another strategy that works, and get all superstitious about it and then that fails, and my world and ass crumble. The funny thing is I like to camp and backpack so a lot of my trial and error has to do with getting back to the point where I think I can squat under a tree without tearing a new one or without having the runs (from too much magnesium and/or miralax) and needing to dig several holes throughout the day and pack out tons of toilet paper. Getting the balance right is tricky. I hope you are doing well! Thanks for your wonderful post.
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