I've posted on here a few times, but I think I'm now starting to really crack up and would like peoples advise and opinions on what they would do in my situation.
My original post is here: http://anal-fissure.org/t4650-fistual-surgery-won-t-heal-help
and I posted again when I was looking for a second opinion, here: http://anal-fissure.org/t4685-good-private-crs-in-the-uk-london?highlight=london+CRS
But to sum it all up...
• Chronic AF since age 15 (now 34).
• Had old-fashioned 'anal stretch' op age 15, did nothing.
• Lived with the extreme pain of AF until I was 33, when I saw a CRS for an unrelated matter.
• CRS gave me Diltiazem cream to treat it, seemed to work. CRS wanted to check for fistual (had no symptoms) due to length of time i'd had the AF.
• Had the op, he found a superficial fistual, laid open, should be fine.
• Recovery is a bit slow, but "healed" and back to work in about 7 weeks.
World now falls apart.
• Had a bm that seemed to tear the wound open, lots of blood
• Eventually (this is the slow uk NHS) see the CRS, "needs to heal more" back on the Diltiazem
That was all pretty much a year ago.
Since then, I live every day worrying about what the next bm has in store. I'm basically in a cycle where I might go a month, maybe 2, before I get more blood.
I watch my diet like a hawk, I only eat foods I know are ok for me, which is generally a lot of fish, salad/veg and a lot of water. Sugar/choc is fine, which is lucky because my weight has plummeted with a combination of lost fat and muscle, and it's a way to get a few calories at least.
I recently managed about a 2 month stint of feeling completely fine and was all pumped up about getting back to some form of normality. I didn't want to alter the diet as it was working, but I need to start gaining muscle and weight which is very hard eating what I do (not enough calories).
So a few people (and a nurse) recommended using protein shakes (for weight lifters really) to boost the calories. I just assumed because it was so liquid based it would be fine. Wrong. Torn myself a new one the next morning, hard bm and blood. Now recovering from what I guess is an AF that protein shake gave me. Been using Diltiazem since then (my GP prescribes it like smarties). Used it quite a lot over the last year.
Last two weeks have been ok, lifted something heavy this morning and just had a load of blood with my bm, no doubt the pressure of lifting tore things open down there.
So, I really don't know what to do anymore. This post probably reads erratic and there's lots missing, but the real question is, what would you do in my position?
I've read about LIS and, despite the risk, I'd consider it, except it seems to be aimed at helping healing. I want to know why I get AF's so easily in the first place. My diet is perfect, certainly better than most peoples, get it takes very little to get an AF. I don't think it's Crohns (feel so sorry for sufferers), my anal area just doesn't seem to be able to stretch at all without tearing. Genetically screwed I guess.
I'm in a constant state of depression, mostly out of fear of another fistula or abscess (never had one, fear them a lot now) and more surgery. Paranoid is probably not far off at this point.
The pain I have now is nothing compared to what I had pre-surgery, yet my life back then is like a brilliant dream compared to now. I weighed a normal amount, ate what I liked instead of being a skinny social freak (xmas party soon, I guess it's the veg menu for me and the fun "I have a bit of a digestive thing" excuse I now use), just had to put up with a (ridiculous) amount of pain with most bm's. But I had no mental issues about this, didn't even know what a fistual was and was genuinely a really happy guy.
If i'm honest, I wish I'd never gone to see that CRS about the unrelated issue, had never heard of Diltiazem cream or any of this. Ignorance really was bliss, the pain was terrible but better than living in constant fear and not being able to move on.
I've out of ideas.
I can't seem to go more than a few months without a bad bm and seeing blood. Pain/discomfort is not bad, probably due to the diet controlling the new AFs, but psychologically it has and is destroying me. Don't get me wrong, the first weeks after a new cut aren't great pain wise but eventually it tends to level out, just in time for the next tear in a month or so's time. Is it where I had the surgery? Maybe! A new one? Maybe!
I want my life back, but cannot see how to get it and cannot see any options.
Surgery:
There doesn't appear to be a surgery to prevent AFs, just help them heal. It would be very hard/impossible to get a CRS to perform LIS without an active AF anyway, but that seems to be the only option surgery wise.
Diet:
If I cut much more out of the diet I'll probably start to be malnourished, though that' not to say I don't eat properly now, it's just low calorie stuff (not intentionally, it's just the way the cookie crumbles).
I've read some posts talking about mental health helping. If I thought it would help I'd see a psychologist, but honestly my problems are 100% physical health related and no amount of talking is going to change that.
Life:
I'm stuck. I look like crap because I'm (really) skinny. I now have a bad self image, it's not in my mind, friends and family all agree, need to gain weight. In this state, dating (yep single) is well out, which is very upsetting as I'm getting on and had dreams of a family. There's something about looking like a pretzel, eating like a model and sitting on donuts at home that just doesn't scream "he's the one for me". Jobs. Very unhappy where I am, but completely paranoid of taking something new in case I need more surgery and time off, it's only benefit. Time off starting in a new job = fired = unemployed. In short, depressed and trapped and can't get out.
This is probably the longest post on this site, if you made it to the end, it's very, very appreciated. As are ANY suggestions, because I'm all out.
Any takers?

Neverends,
Since this is about brainstorming, let me throw around some ideas based on my past and present experience with anal problems.
I had a fissure but I'm still not "well". I did have a 1-2 month 100% health stint like you, but bleeding and pain came back, went away, came back, went away etc. I don't know about you, but the "interesting" thing about my current condition is that I bleed way more but hurt way less.
I went to a reputable CRS for a full anoscopy - she was adamant that my fissure is gone and I have only a slight hemorrhoid problem (which we both thought was the problem prior to the anoscopy).
She said that the reason I was bleeding and having pain was due to some severe irritation of the anal skin. She said that diltiazem/vasodilators will only make it bleed more in this condition. The medicine not only irritates but also make the skin more prone to bleeding.
I stopped the medicine and things really improved, althouth I did have a bleeding setback today, with little pain. According to her, this is all normal and getting rid of this form of "anusitis" (she never used this word, but I saw referred as such online) isn't very easy, although it's a much less severe condition.
You can try looking for some information on these inflammations - and I'm new to this myself. My 'nerves' have a LOT to do with my condition. I get worse when I'm down and get better when I'm happy. Stress triggers responses that cause inflammation - and maybe you are also eating food that work as vasodilators. My setback today happened after I had a ton of garlic yesterday, which I just today discovered is a "no no" food for anal inflammation.
Your condition isn't too different from mine if "pain/discomfort" isn't bad. This is the case with me also. So have you considered that you don't have fissure/hemorrhoids but instead are in a cycle of inflammation/stress/fear which is being degraded by your loss of weight?
I lost a ton of weight (15lbs) but I'm at a healthy weight for my height now. I just ignored my fear and started eating high calorie foods (not junk food though, things like low sugar/sodium peanut butter, olive oil etc) and increased the miralax to make up for it. I'm still experimenting, but I'm gained some of my weight back, which really lifted my spirits.
I hope this helps...

In addition to the great suggestions Dan put forward, I do think it's a mistake to think of any health affliction as 100% physical. We don't exist as solely physical beings. By your own words you mention how stressful this has become for you mentally, in your relationships, body image, self esteem, etc. I don't think you can separate these things out from the fact that you are having recurring fissures. It's really all interconnected in my opinion, and the most effective strategy for both coping and healing s going to be found in approaching the problem from a multidimensional perspective. Even if you do have LIS performed (because there are people who still get fissures after LIS).
So, my suggestion is to take this on with a varied approach.
Diet. Topical medications. Stool softeners. Relaxation stretches and breathing exercises for the pelvic floor to overcome the stress and guarding during bowel movements. And maybe even LIS if that is appropriate in your case. (Yes, there are surgeons who will perform LIS based on a history of recurrent fissures, even if there isn't a current active fissure).
But equally important is the mental/emotional dimension. Depression and chronic stress have a negative impact on healing, bathing your body in inflammatory chemicals and hormones on a chronic basis. In your case it could help to get some therapy given the very long term nature of this problem for you and the extent to which it is affecting your thought process. But if you really don't want to go that route, at least explore some things you can do on your own to reduce your stress. Hobbies, relaxation CDs, yoga stretches, meditation, art, journaling, music, any number of things that are suited to you individually.
This is a really difficult affliction to live with. It's extraordinarily painful, stubborn, slow to heal, and has a deep impact on us as sufferers. Weight loss is pretty typical in long-term sufferers. How could it not be a part of something so painful? I think most of us long-term sufferers can really empathize with you, and we all wish you the very best. We all just have to keep trying, keep being open to new ideas, and keep being willing to approach this from a variety of different angles.

Hi Neverends,
Reading your post I really feel for you. I can relate on so many levels.
This damn affliction takes its toll on all of us eventually... And we suffer most when we are at our lowest ebb.
Do you have friends or family whom you can talk to about your fears and pain?
I would strongly suggest going back to your gp and getting some help for your depression.... Be it counselling or anti depressants or both.
Did you consider going to a private crs? I can't seem to follow the link... My iPad wont let me!

OMB xxxxx

Thanks for the words people, this site is a real life line at times.
I'm in a better state of mind today, which is something I guess.
From a physical point of view, whilst it is upsetting (to say the least!) not to be 100%, I guess I need to accept that I'm always going to have problems in that area. The pain is certainly manageable and nothing compared to what I had in the past or what others on here endure. It's my expectation I was going to return to being 100% and constantly failing that which is so upsetting.
Psychologically, the real cause of my anxiety is not pain, not blood or the discomfort. It's the fear of getting another fistula or an abscess and what that brings, made worst by the fact I had no obvious symptoms of my superficial fistula last time.
I think i need to try a few things that have been suggested. Less stress about this would be a good start, try and get some perspective.
I need to shift my diet a bit and try to take on more high calorie foods. Peanut butter was something I've avoided til now (nuts!) but maybe it's worth a shot. Gentle exercise starting off very easy maybe and hope it doesn't cause problems.
I think there probably is a catch22 with the Diltiazem cream, as it 'adds healing' by pushing more blood to the area, which is probably why the tinniest problem looks worst that it really is.
I'm not convinced LIS or more surgery would help me (unless there's an experimental op to give me a new metal back-end, which I would take up) though as someone mentioned, it's not beyond the realms of possibility to have such an op even without an active problem.
I have seen a few private CRS's. Both very respected and one was a good recommendation on here. The first offered some frank advise, which was essentially a 'you are what you are' explanation and not to get too upset at the sight of blood. The second was for something more specific (I had a thrombosed hemorrhoid which thankfully came and went within a month) but had much the same outcome in terms of realistic prospects.
I do have family I can talk things through with, a sibling who also suffers a lot with similar problems which rather reinforces the genetic roll of the dice luck people seem to have with this condition. Friends know, but I try not to burden with as eventually it's depressing and they can't really offer insight anyway, just a beer or two as they're blokes :-)
If anyone else wants to contribute, I'll certainly be checking in and thanks to those that have taken the time to answer.
This condition is a pain in the butt.

NeverEnds wrote:Surgery:
There doesn't appear to be a surgery to prevent AFs, just help them heal. It would be very hard/impossible to get a CRS to perform LIS without an active AF anyway, but that seems to be the only option surgery wise.

Hi there NeverEnds. I'm in the UK too and don't know if my experience will help you. My chronic fissure had healed but I was still getting pain, on a level where I couldn't work. I saw three colorectal surgeons (all Consultants) and only the third one fixed me.
Whilst my major fissure had healed, my muscle tone in the anus had become so high with the spasms (and it was on the high side anyway, to begin with I suspect) that I was forming minor fissures with most bowel movements. I didn't have a great deal of blood with this (very rarely in fact) but people seem to vary in how much they bleed and even with the major fissure I'd had (down to the muscle) there was rarely blood.
In addition to this, I'd been in pain so consistently and for so long, that I had a pain cycle going on (between anus and brain), where sensations from minor fissures in the anus that probably wouldn't have bothered anyone with a normal anus, registered as debilitating pain, causing more muscle spasms, creating more pain. However I didn't know this until I got to see the third CRS.
The second CRS I saw was very eminent and gave me two lots of botox, 6 months apart, banded my haemorrhoids and removed my skin tags. Once all that had healed I was still in pain, at which point they were going to refer me to biofeedback, and seemed to feel that there was no further surgical solution. They didn't once mention the LIS op.
The third CRS I saw however, could see the minor fissures that other surgeons appeared to miss, worked out what was going on and recommended the LIS op. He discussed other forms of treatment (more botox and biofeedback) but didn't think they'd be as effective (or as fast) at providing a solution as the LIS op. When I asked why this operation hadn't even been mentioned to me by the previous Consultant, he said that "medical orthodoxy" (in the UK at least) is that you don't perform the LIS op where the fissure has healed, but that some patients need it even so.
So I leapt at the chance and had the op. It took me several months before my anus was normal again, but now I'm completely cured. Initially, during the healing period, I continued to get minor fissures but the CRS said that I wouldn't get any more major fissures and eventually, I wouldn't get minor fissures either - and this has proved to be the case. He also said that I'd always have an anus that I was aware of, but I wouldn't be in pain. Again, this has proved to be the case. The pain cycle had to downgrade so that sensations in the anus became normal, which eventually happened. The CRS said that the anus is a delicate or complex structure, and can take a long time to revert to normal after it's disrupted (by surgery or a fissure for example). I think there are also all sorts of unconscious aspects to passing a stool which, once the LIS has been performed and the muscle tone reduced, revert to normal. I didn't fully understand this aspect of it when the CRS discussed it, but I think the mechanics of passing a stool without damage are improved when the muscle tone is more relaxed. Also, after the LIS op, any damage that does occur rapidly heals, rather than developing into a chronic fissure.
I'm so indebted to this surgeon. I was in despair until I went to him. I also hadn't understood (also when I read this board) how individual everyone's situation can be. The task for the surgeon seems to be to work out what's going on for that particular individual and then apply the best treatment option. Until I saw the third surgeon, the previous surgeons didn't seem interested in doing that and even when I told them I thought I was developing minor fissures with most bowel movements, they just ignored that information and told me I had a completely normal anus! I was beginning to think I was going nuts!
I live in London and can pass the details of the surgeon who fixed me on to you if you wish.
As regards eating healthily and getting lots of calories to put on weight, you've probably thought of this already, but I pour a good quality olive oil (about a tablespoon) over my vegetables with dinner every night. I think it's good for passing stools and fat of course is extremely high in calories. I've kept my diet the same healthy diet as I had when I was trying to heal the fissure as I don't want to be constipated. I have withdrawn from all stool softeners however, but drink 200 ml prune juice every night, which in conjunction with a healthy diet and lots of water, seems to keep things soft and moving.
I haven't had a fistula or abscess however, so can't offer anything in relation to that part of your experience.
All the very best to you.