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!