Getting frustrated

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Getting frustrated

Postby Guest » 26 Aug 2009, 19:53

Hi, I'm new to the forum and this is my first posting. Over the past month I have read many of the postings and have found them most helpful, both mentally and practically. Briefly, I have had a chronic fissure for about 20 months and have had two lots of LIS surgery, one 12 months ago and the other 7 months ago. While the second one resulted in the sphincter muscle becoming more relaxed, I still get pain for most of the day, paricularly when walking. Some days it is a dull pain, other times razor sharp. I am very careful to do the 'right thing' including heaps of water, a very disciplined diet, benefiber and miralax and 90 minutes of exercise a day. My colorectal surgeon is quite good and I have been happy with him but when I visit next week will be looking to getting a referral for a second opinion. He has ruled out other things preventing healing such as crohns (negative with blood tests and 2x colonoscopy), cancer and infection. I have been applying 0.2% nifedipine 3x a day and vitamin e 2x daily and also having 2x sitz baths a day. Generally my BMs (1x per day) are consistently soft.
I have some questions and wondering if anyone can help?
1) Has anyone been in this situation with 2x LIS and still not healed after 6+ months?
2) If you were in a similar situation were you eventually healed? If so, how long did it take? What do you think was important for the healing?
3) Have others with longer term chronic fissures gone through cycles every few weeks of thinking you are getting better, only to crash back again with severe pain - and often nothing obvious has changed (eg diet, BM) to cause the difference?
I must admit I am feeling quite frustrated with all this, not only on its effect on me but on those around, particularly my family. I know we are all different but am interested in any feedback from people.
Thanks
Charles
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Re: Getting frustrated

Postby Deleted User 5 » 27 Aug 2009, 06:23

Hi Charles and welcome to the board! Sorry to hear you have been suffering so long!
You're case in many ways is not unusual at all, and in one way -- the fact that LIS has not seemed to help -- it is unusual though not entirely. The frustration you feel, the wear and tear on family, the setbacks, mental anguish -- that is the typical unwanted "gift" having a chronic AF can present to those of us so unfortunate to acquire one...
1) Has anyone been in this situation with 2x LIS and still not healed after 6+ months? Yes, rare but it happens. I was lucky and healed but hopefully you'll hear from the few who have, though they don't check in as regularly. Do you know if your fissure is especially long or not?

3) Have others with longer term chronic fissures gone through cycles every few weeks of thinking you are getting better, only to crash back again with severe pain - and often nothing obvious has changed (eg diet, BM) to cause the difference?
This happens to us all and I always tell people do not get too excited just because you have had a few good days, or even a week or so of good days...the setbacks are perhaps the cruelest aspect of AF.
Again, welcome to the board and I hope you find some useful information here!
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Re: Getting frustrated

Postby busymom » 27 Aug 2009, 09:24

Welcome! This is a great group of people who understand the whole gamut of AF problems - physically, mentally, emotionally, etc. It's a really good supportive group!
crm wrote:Have others with longer term chronic fissures gone through cycles every few weeks of thinking you are getting better, only to crash back again with severe pain - and often nothing obvious has changed (eg diet, BM) to cause the difference?

Absolutely. I haven't had LIS but I've had fissures for almost 17 years, however mine usually heals within a few weeks and then I can go months and months between flare-ups. It's frustrating, to say the least. I think that sometimes I need to change what medications/creams I'm using in order to feel a difference. For instance, 0.2% nitro was helping me for a little while but I developed a stronger burning sensation from it. I quit using it and went to an OTC cream and saw a huge difference. I may go back to the nitro if my AF starts to not respond to the OTC cream. And mentally, when I go through a bad phase, I just try to remember that it's a cycle and it will start to feel better again soon. The hard part is the crash back into the pain. It can definitely feel like a "two-steps forward, ten-steps backward" cycle sometimes! I think getting a second opinion could be a good idea for you. Hang in there.
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Re: Getting frustrated

Postby NeuropathicGuy » 27 Aug 2009, 11:40

crm wrote:3) Have others with longer term chronic fissures gone through cycles every few weeks of thinking you are getting better, only to crash back again with severe pain - and often nothing obvious has changed (eg diet, BM) to cause the difference?

Hey Charles, welcome to the board (unfortunately). I have not had LIS so I can't speak to your other questions, but I have had this one. At times I think I'm just fine and the fissure has just magically vanished, like it was all a bad dream, and then there's that one bowel movement that sends me crashing back to earth in a major (and mentally devastating) manner. I've been eating nearly the same exact diet just about the entire time I've had my fissure, so apparently there are variables beyond our control that factor in.
Does your pain typically feel more like a raw, burning, irritated kind of pain (like sandpaper over exposed flesh) or is it more like a tight muscle spasm? Just curious and kind of wondering if there's some other treatment aside from LIS that might be used in conjunction. Did you try other treatments like topical ointments (nitroglycerin or nifedipine for instance) or even muscle relaxers prior to LIS? I've had a bout with a nasty fissure lately and muscle relaxers (diazepam in my case) seem to have greatly reduced my spasms. But of course they still don't help with the raw, burning pain that comes from stool physically irritating the fissure. Personally it sounds like you've got the diet covered, and of course the have ruled out the more sinister problems, so perhaps it's time to think outside of the traditional fissure box. Do you live near a university medical center like Mayo's, Hopkins, Stanford, etc., that does clinical trials?
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Re: Getting frustrated

Postby Corsi » 27 Aug 2009, 14:05

crm wrote: Have others with longer term chronic fissures gone through cycles every few weeks of thinking you are getting better, only to crash back again with severe pain - and often nothing obvious has changed (eg diet, BM) to cause the difference?
Oh yes, that's normal. I had days, not weeks and then Image
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Re: Getting frustrated

Postby Guest » 27 Aug 2009, 17:22

Hi again. It was great to receive some replies - thanks heaps. I'll respond to each of them below:
Kim. Thanks for the welcome. Based on the literature and what the CRS has said I assume my fissure (actually I have two now and a skin tag) is of average length - but just doesn't want to heal! Yes, would be good to hear from someone who has had 2x LIS and healed / not healed - if they are still a part of the Forum.
busymom. Thats great advice to remember during the bad times that it is just part of a cycle and that there will be better times up ahead. I guess thats one good thing about the cycles - there are times of relief and 'regrouping' before the next downturn.
NeuropathicGuy. Yes, the pain is more like a tight burning or sharp cutting pain through the day after the BM rather than a tight muscle spasm which I only occassionally get. The actual BMs have not been so painful since the 2x LIS - the sharper pain is later in the day. Not sure how normal this is? I would love to go to one of the clinics you mention but I don't live in the US. Have been applying nifidepine for about 3 months.
Corsi. Thanks - I think one of the advantages of a group like this is to hear from others and realise that one's experiences, although challenging, are normal.
Again thanks for the feedback.
Charles
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Re: Getting frustrated

Postby NeuropathicGuy » 28 Aug 2009, 03:27

Hey Charles, so the pain always starts some time after the BM? About how long after the BM usually, as in on the order of minutes or hours?
When my fissure pain was real bad, it would start maybe 2-3 minutes after the BM and keep ramping up, sometimes for the next hour or two. When I ended up going to the emergency room, it was one of those times when the pain was very, very intense and didn't hit its peak until an hour or two after the BM (which wasn't too bad of a BM as far as fissures go). But that was a one-time occurence for me, so I don't know if it means anything. Maybe others will chime in who have had more similar pain patterns to what you're experiencing.
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Re: Getting frustrated

Postby Guest » 28 Aug 2009, 04:26

NeuropathicGuy wrote: Hey Charles, so the pain always starts some time after the BM? About how long after the BM usually, as in on the order of minutes or hours?
In the early stages, probably before the first LIS surgery, it used to hurt heaps with the BM and then be bad for the next 3-4 hours, and then become more tolerable over the course of the day. For the last six months (certainly since the second LIS), while the BM can be quite painful (although sometimes not so bad), the worst times are usually 4-5 hours later particularly when I am walking. This is a bit of generalisation as yesterday it was quite painful when I was walking an hour after the BM. I have been puzzled why painful later on, particularly when the BM has not been particularly painful. The pain is certainly around the fissure area - where there is also a skin tag which maybe contributing to it. When I do not have the sharp (razor blade type pain) I have a dull ache that is present most of the day.
Just as an aside, although the 2 lots of LIS have not healed me (yet), I would fully support anyone having LIS for a chronic fissure that has not healed with more conservative approaches - so long as you have a good CRS. I am just the <0.25% of those who have not healed after 2 lots of surgery. Like many others who have had the surgery, I found it less painful the next few days then the fissure was when it was bad. After the first LIS I had no sign of incontinence (the surgeon said he went very conservatively) and after the second just some minor incontinence (mainly wind) that disappeared after a month.
Charles
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Re: Getting frustrated

Postby NeuropathicGuy » 28 Aug 2009, 18:07

Charles, that does sound atypical for a fissure. But for what it's worth, in my personal case, I sometimes got muscle spasms that started hours after the actual BM. Mine were sharp shooting pains (never dull) however, and I could definitely tell they were spasms because I could feel the muscle get tight and contract when it happened. When I went to the ER when it was real bad, the physician called it "severe proctalgia," and indicated that with a fissure, it's not necessarily only the sphincter muscle that can go into spasm; apparently he's seen cases where the pain and irritation from the fissure causes other muscles in the rectum to spasm too.
The way it manifested with me was this: just standing still, I was mostly fine (aside from the raw burning pain which comes from the fissure being directly irritated). But if I took a step or two, I would suddenly feel an intense sharp pain that felt like it was shooting from the bottom to the top of my rectum. Sometimes I would get several such painful spasms after taking just one step. I don't recall any such episodes starting as long as 4-5 hours after the BM, though, mine were more on the order of maybe 2-3 hours tops. And they were usually preceded by some level of raw burning pain from the fissure being rubbed by stool on its way out the anal canal.
Anyway I don't know if any of this is pertinent to your situation but I have to wonder if it's not really the sphincter that's at the root of the problem. If you have had LIS twice then I'd have to suspect some other issue, maybe still involving a muscle but just not the internal sphincter muscle. These are only my personal thoughts, however, and are the very limited perspective of a 31-year old guy with no medical degree and who's only had a fissure for less than 4 months :)
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Re: Getting frustrated

Postby juney » 17 Sep 2009, 10:37

hi charles - i'm sorry i don't get on the forum much anymore and i just now noticed this thread and wanted to reply b/c of how similar your situation is to mine.
i'm one of the few people on the board who's had multiple surgeries and still haven't healed. i've had an awful fissure since july 2006. i had my first LIS in may 2007, 2nd LIS in september 2007, and a fissurectomy/fistulotomy in September 2008.
i wouldn't even say i'm at 50% right now. i have some level of pain every day which has never changed in 3 years...some days are better than others and i have gone a maximum of 2-3 weeks thinking i was healing only to go right back to where i started. there's no rhyme or reason to it. i have pain with BM often but the pain mostly begins after BM and lasts up to 12 hours, with an average of 6 hrs/day. sitting is awful, standing up is even worse, and sometimes moving just the slightest bit makes me cringe in pain. the area is raw and inflamed inside and out. i also feel a dull ache most every day. it's just an all-around uncomfortable, achy, painful feeling. similar to what you've described only i feel the sharp pain when i stand up from sitting, not just randomly. my most recent dr still saw a nasty fissure despite all my surgeries and attempts to heal.
i don't really know what advice to give unfortunately...it's a frustrating situation to be in and i feel for you. i've had all the tests, tried every cream, supplement, surgery, etc. no dr has been able to help me or provide any new advice that i haven't heard from other drs, internet, etc. and nothing seems to work. maybe some of us need something that hasn't been discovered yet? i'm thinking of trying botox next although that's usually used before LIS so i'm not sure if it would benefit me or you.
i take alot of miralax, benefiber, magnesium and ibuprofen everyday. are you taking any or all of these? i don't use narcotics as those cause me horrible constipation. my BMs are consistently soft, sometimes probably too soft and then that hurts just as bad. there's no exact science to this as i'm sure you know...what is your regimen everyday?
anyway, i wanted to let you know you're not alone. please private message me if you want to chat and let me know what advice your dr comes up with for you. i'm seeing 3 new drs this month and will keep you posted as well.
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