Lifelong sufferrer

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Lifelong sufferrer

Postby dexterdude » 03 Mar 2011, 10:54

Hello everybody,
First of all, let me thank all of you for a great job with the forum. It's great to find so much helpful and firsthand information about this terrible disease.
So, about me: I'm a 30yr old guy and I've had this problem for as long as I can remember. To be sure, it wasn't that bad at first, when I was a kid. I mean, I'd have bleeding and pain whenever I messed up my meals or didn't drink enough liquids, but nothing too bad and it would go away in a few days. But as I got older, things got worse (as did my diet - lots of pizza, spicy foods, the works). Finally when I was about 24 I was having regular bleeding and pain so I went for the first time to see a doctor (specialist) about it. He diagnosed me with hemmorrhoids and I had the banding done. While this helped and the hemorrhoids went away, I kind of feel this time was the turning point for when the fissure problems really started: I'm guessing that all that banding (I think I had 5 or 6 sessions, plus some infrared coagulation) really thinned the skin down there, so it got weaker and more prone to breaking...but it's just a guess. The doc also gave me some preparation laxative, which made things really soft and which helped while I used it, but as soon as I stopped the pain and bleeding were back (with the hard stools). More than that, he wasn't that helpful and basically told me to just deal with it and keep eating right and exercising. At this point I had already changed my diet drastically and I've been eating very healthy ever since.
One thing that I started myself to take during that time, after reading a lot on the net, was lactulose. It really helped, and I had about 4 months of pain free time. I thought I was healed.
And probably I was, but after some more months the lactulose didn't seem to work anymore. The stools were getting harder and inevitably at some point I got the fissure again. So I went to see another specialist. This guy was pretty much the same as the first one, with two exceptions: he didn't know what lactulose was :), but he did give me a Diltiazem cream. The cream was pretty good and using it in about 1 month I was well again. Or so I thought, because within a few weeks of stopping using it the problems came back. So I started on the cream again, but this time it didn't work anymore. The doc was again pretty clueless at this point and kept insisting that I use the cream, even though it wasn't working.
So I again was stuck trying stuff on my own (as the lactulose wasn't working) and then I found senna tea. To be honest, at first I didn't know it contained senna, as all the ingredients' names were mixed up so I thought it was just green tea. But boy it helped: I would take a cup every night before bed and the stool next morning would be soft and almost runny. In a few weeks the pain was gone and I was happy again. However one day I just stumbled upon the fact that the tea contains senna, which is an irritant laxative and might cause bowel nerve damage in the long run. And I had been taking it for almost a year. So I stopped. Immediately.
From the fissure's point of view, that was a mistake :). It came back and now I was stuck again with nothing to help me (although I started taking lactulose again, so at least I'd have *some* help). In the meantime I also moved away to another city and I thought I'd give the local doctors a shot. So I first went to my family doctor and he told me to stop lactulose and try a fiber supplement, like Metamucil, which I did. Well, suffice to say that the next two weeks (while I tried it) it felt like having megapoops. I drank lots of water and other liquids, but still...huge! (aside: it had occurred to me before that maybe I had a small sphincter from birth and this was causing all my problems) This naturally didn't help the situation, but made it worse, as now except my long standing fissure I could also feel pain from two more sites, which meant two new ones. So I went back to the doc and he sent me to a specialist.
(aside: at this point, after all this time, I think I had practically read the complete internet about the topic. So I was kind of thinking to go for the LIS)
The specialist seemed pretty cool (which was, as I said, not the experience with the previous ones). He told me I had indeed 3 fissures, but they didn't look chronic (despite my telling him that I thought one of them was). I told him I'm thinking about the LIS but he said no way, my muscle is relaxed. He took me off Metamucil and gave me Movicol and nifedipine. I wasn't too confident, but I gave them a try: wow, what a miracle. From the second day the passing of stools was almost painless, and very quick! It was really, sit-down, get-up. In about a month, I was again doing very good, no pain, no bleeding, no discomfort. So I went back to the doc and he declared me healed. (thinking in retrospect, I guess the fact that I was having the Metamucil mega-poops before helped when going to Movicol; in some way maybe the Metamucil made it to be like a mini-anal-stretch :p)
...except about two weeks after that, I went on a trip and was stuck a day with almost no water. You can imagine what was next :(. What's more, even though I had the movicol with me (which the doctor told me I'll have to take probably my whole life), I didn't have the nifedipine. And the trip took a month and two weeks. So all that time I was in pain, although, surprisingly, the bleeding stopped in a few days. But the pain was as bad as ever, just no blood.
Finally today, about 2 months from the event, I went back to see the doctor. This time he only did a digital exam, but boy it was painful. I think actually it was the most painful I ever had. I didn't actually scream, but only when I got up I realized tears were running down my face, involuntary reaction I guess. He told me that indeed the fissure is there and the muscle is very tight. He now gave me a policresulen cream (in the prospect of which it says it's for hemorrhoids!) and told me to apply inside, the same way he did. Well, after the pain I had just been through, I really don't think I can do that myself. I told him I'm also extremely skeptical of creams at this point and I'd really try to LIS, but he said he almost never sends people for the LIS. He told me to try the cream for a month, then if it doesn't work we will try botox and only then, as a last resort, LIS (the well documented course of action I guess), but that many of his patients in a similar situation as me were healed with just the cream and he really doesn't like the LIS as it might come back to haunt me when I'm older and the sphincted pressure is lower.
Now I really don't know what to believe anymore. Can I really heal with this cream? Normally I'd say not, but from what he told me, many similar cases did. He was also really supportive and encouraging and told me he understands how I feel but I should have faith in the cream.
But then, how am I supposed to apply the damn thing? Until now I've used cotton-tips for the nifedipine, but getting a finger in there is out of the question after today. Actually on my way home from his office I was in so much pain that my breathing kept cutting off. I don't think I can consciously do this to myself. But, just to be sure, I will try...
In the end, I'd like to apologize if my post is a bit of an unfocused mess. To be honest, sometimes I can't even think because of the pain. And of course there's the usual psychological stuff too which I guess goes with it: I've become somewhat of a recluse, grumpy person, which is not what I want to be at all. But, such is life when you have to make your schedule around pain and taking meds every night.
Anyway, thank you all for the great work posted here and I'll do my best to keep you updated on my progress.
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Re: Lifelong sufferrer

Postby alpinestrawberry » 03 Mar 2011, 11:53

Oh wow, your whole life! Image
Honestly, I can't believe that your doctor wasn't ready to send you for LIS, after an entire lifetime of trouble! What type of doctor was he? General Surgeon? GI doctor? Or Colon/Rectal surgeon? I'm thinking maybe he just doesn't do enough LIS surgeries to be comfortable with them.
I've only had problems in the last five years and I'm ready to do the surgery...some people can only tolerate a few months and then they'll cave in and do it...after THIRTY YEARS I think you have a right to do the surgery if you want to, it's your body and life is too short for this kind of pain.
Image
I think you should look for a CRS who sees a lot of fissures and get another opinion. I had my first visit to a CRS a little over a week ago, and I was prepared to argue my way out of trying botox and beg for surgery! But, to my surprise, he agreed to do surgery right away, no bother with botox. Even though he couldn't see my fissures because I was having a good day (thanks to Miralax), he could feel how tight the muscle is.
I left his office in shock that he agreed so readily. I was just so relieved, he's a well-rated surgeon and he's never had a case of incontinence with this surgery. That's what you want to look for; a confident surgeon with a great track record.
I know what you mean about becoming reclusive. I'd rather not go anywhere if I don't have to. A month and a half-long trip away from my own bathroom sounds like absolute hell!
Well, hang in there...just do what you have to do to get the care you need...and don't stop taking the Miralax!
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Re: Lifelong sufferrer

Postby dexterdude » 03 Mar 2011, 13:19

Well he is gastroenterologist/proctologist. He had all the tools if you know what I mean and seemed to know what he's doing. I was just a bit surprised that he still insists on the "conservative" treatments. Anyway, he wouldn't be doing the surgery himself, he would send me to a surgeon. For the next month I guess I'll give him the benefit of a doubt, as he really said all other cases like mine have healed with the cream. On the other hand, if it sounds too good to be true... Image
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Re: Lifelong sufferrer

Postby cherylk » 03 Mar 2011, 13:35

Dexterdude,
What a writer you are! Image Many of us here have been helped IMMENSELY with Miralax. I would suggest you do a few things:
1. Use enough MIralax to keep your BM's soft--this is an individual thing on the needed amount.
2. Give the ointment a shot. Many people with an AF have been healed with ointments or they wouldn't use them any more.
3. Consider Botox as a possibility if the ointment doesn't heal you.
4. Know that LIS has helped many people. Again, if the procedure ALWAYS had a bad result, no doctor would perform it.
5. Try to keep a positive mental outlook, which I know is not always easy. Get on an A/D if necessary to help you with that.
6. Peruse the board here to learn of others' past experiences realizing that everyone is different in the way they react to the various treatment modalities.
7. Our Admin Kim has a couple of "sticky" threads listed at the beginning of a topic header. Be sure to read those.
8. Know that you are not alone and can get a lot of support and good advice here.
9. Also know that many people suffer from chronic constipation and/or IBS-C. You have lots of company!
Image
Last edited by cherylk on 03 Mar 2011, 15:44, edited 1 time in total.
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Re: Lifelong sufferrer

Postby catnap » 03 Mar 2011, 15:26

Dexerdude - newbie here too. Long history of bowel issues - IBS, constipation, hemmies. I'm 38 and when I was pregnant with my now 18 month old I developed this fissure. Now I dunno if as child/teenager I'd fissure or hems but I did have painless bleeding. The fissure started off the same - painless bleeding. Healed with just sudocrem, got another, healed again. Think was getting it back on/off for ages but with min pain. This time the pain is the problem. I reckon I didn't get the sphincter spasms before now.
Anyways... the whole thing is so effing annoying. I hear your distress and add my own anger in! I've had to watch my diet for years to control my IBS. Giving up wheat is the hardest. Actually not knowing my triggers is the hardest. Sometimes (mostly on hols) I can eat anything and be fine, so I know stress is factor. I tried metamucil and really worked for a while, but stools became too sticky and harder to pass. Currently I'm having linseeds and 90% of the time this works. I know some people advise against seeds as they don't get digested properly and can tear the fissure. For me that is a risk I have to live with. Golden linseeds are the best. Best thing is let them steep in water over night and drink the slush - yuck! could not do. But if I add to cereal and yoghurt (so scoops up seeds and doesn't leave them swimming in milk) and drink at least 2 glasses of warm water with it, I very rarely have hard stools and go at least once a day. Sometimes I will just take a spoonful with 2 glasses of water, that seems to work too. If I take the spoonful in 2 goes I can swallow with water without chewing or tasting. The idea I think is it swells up inside and helps smooth things through. It's a natural, long-term alternative. For me anyways.
I'm lucky my doc has IBS too and is understanding - I got so sick of people telling me to just eat more fibre that makes me more constipated, I kid you not. My doc reckons you need to constantly experiment, change doses etc as body adapts.
Oh dear I'm rambling.
I've just started taking rectogesic so we maybe can discuss how we're getting on with conservative treatments. I'm going to start another thread on this.
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Re: Lifelong sufferrer

Postby dexterdude » 03 Mar 2011, 16:02

Thanks for the kind replies. I've also gone through the rectogesic phase, but stopped using it because of the pain. Not headache pain, i didn't get those in the slightest, but the fissure pain. As soon as I'd apply it it would hurt LIKE HELL. It was way worse than the normal fissure pain. Comparatively, nifedipine or dilitiazem didn't cause ANY pain, so what the heck...
Also, I forgot to mention an important thing: I've had problems in the past, but in the last 8-9 years I always go to the bathroom like clockwork every morning, twice in the space of ~30min, and I never have to push. In fact, I'd even say it's the opposite, it really tends to pick up speed on the way down if you know what I mean Image. So much that I sometimes tense in anticipation of the pain it would bring too quickly :( On the other hand I never get a completely formed stool, but rather a few formed pieces, which I guess is not ideal but oh well.
All in all I feel I have good eating habits, good bathroom habits, not that good exercise habits (how can one exercise while in fissure pain?!), tried almost all creams and a bunch of doctors. Had some good luck, mostly bad luck. But the quest goes on, eh?...
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Re: Lifelong sufferrer

Postby Bumbutt » 04 Mar 2011, 01:28

Hi Dexter,
I just wanted to add that I was told by my doctor that the ointment only needed to go in to the analcanal about 1cm (about the distance to the first joint on your index finger). So you might not have to go too far in with the ointment...
I hadn't heard before of the one you mentioned... policresulen .. not sure what's in it... is it for fissures?
I hope you find some helpful info here! Image
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Re: Lifelong sufferrer

Postby dexterdude » 04 Mar 2011, 11:56

Well actually I use the pinky as you said, up to 1st joint. Index finger seems too big (and i have thin fingers).
You can find a lot of info here about policresulen http://en.wikipedia.org/wiki/Policresulen (lol). I've no idea what it is too, but what i can say, after 3 usages, is that it does something:
- i applied the first dose last night, i was in some pain before and also doing it was really painful, but in about 2 minutes the pain was gone completely and abruptly, i was kind of shocked
- this morning applying it was also painful but the pain again went away completely in a few minutes. I also felt very relaxed down there the whole day, no spasms (whee!).
- third time was about 10 minutes ago, same process: pain going in (the burning kind) and in a couple of minutes, nothing.
So it seems so far it's doing something, whether it will help the healing, I don't know. What I do know is that today was the first relatively normal day in a long time, it's amazing how much difference the lack of pain makes.
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Re: Lifelong sufferrer

Postby dexterdude » 04 Mar 2011, 12:03

dexterdude
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Re: Lifelong sufferrer

Postby dexterdude » 27 Mar 2011, 04:32

An update after 1 month of using the cream: it seemed to work for a few days at the beginning, but after that not anymore. I've been using it though, just to make sure, but unfortunately hasn't helped. So I think I can safely say I'm still where I was a month ago: about 8hrs of pain until afternoon, no bleeding though.
I'm seeing the doctor again next week, I guess he'll send me for Botox. Not too confident about that one either after reading the experiences here, but I will give it a shot (or two, one on each side heh). Hopefully the shots won't hurt worse than the fissure and also I won't be in so much pain after them as some members here were.
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