One more sufferer ...

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One more sufferer ...

Postby Philber » 28 Apr 2010, 10:47

Hi all,
From reading a lot of posts here this morning, it seems my situation is similar to many others.
I have been suffering from hemorrhoids for about 8 years. For the last two years, they have been really interfering with my life. I teach at a university, so standing up for hours at a time was very difficult. BMs were messy and difficult, and usually required a trip home to shower. For some time now, I have planned every day around my BMs. I have had three RBL. The first was great, the second medium, and the third did nothing.
About six months ago, my doc told me I likely had a small fissure. He didn't tell me any more, except to take lots of fiber and docusate sodium twice a day.
About two months ago, when the pain became unbearable for me, I changed my diet dramatically, in a manner similar to what most of you have done. I started taking Metamucil three times a day, as well as the docusate twice a day. I increased my fiber dramatically and cut out alcohol, most meats and most dairy.
About two weeks ago, I had a colonoscopy, and the GE said I had a small fissure. He prescribed diltiazem ointment, and told me to take Miralax twice a day. I have been doing that now for two weeks.
I have good days and bad days. Since I changed my diet, I do not have any more blood with my BMs. I used to fill a toilet bowl with blood. Then there would be no blood in the bowl, but lots on the toilet paper. Now there is no blood at all, unless I have a second BM in a day. A good day is one BM and 40 minutes of pain. A bad day is two or three BMs and hours of pain.
The pain has not changed much, unfortunately. Every day I have severe pain that usually starts 30-40 minutes after a BM and lasts about 40-60 minutes. If I am lucky, I have only one BM and the pain goes away for the rest of the day. If I am unlucky, I have to have another BM, and the pain then is constant and long lasting, sometimes for the whole day (but usually only 2-4 hours). I do whatever I can to avoid that second BM of the day, but it is a very difficult thing to predict or prevent. I have learned that once I know I have to go, then there is no choice. So my strategy has been to take enough fiber and laxatives that I completely evacuate with one BM. Still, it just doesn't work all that often.
I don't really know if my pain after BMs is the roids or the AF. I suspect it is both, but now I think it might be more the AF than the roids, because I have no more blood with my BMs (which was always a sign of the roids). I wish I knew which pain was which, but I am left to guess.
I know now that some of these things take a long to work, and that the AF takes a long time to heal. But I am very anxious because in three days I am going overseas with my family on vacation for two weeks. We will be moving from city to city, and staying at different hotels, and there is a 7-hour time change. I am very afraid that the time change and the travel schedule will disrupt my bowel routine and will result in terrible pain for me. If things stay the same, and I have an hour or two of severe pain every morning, I can handle that. It will not be great, but I can handle it. But if I am in pain all the time, and having to miss everything because I need to stay close to a toilet, it will be terrible for me and my family. So it is an anxious time for me, but I know that I am doing what I can, and I am determined to make the best of it.
It sure is comforting to hear everyone's stories and realize that I am not alone. It is also really nice to be able to access so much information, especially when my doc gave me so little.
Wish me luck for my trip. I hope I won't need to use too much of it.
All the best, Philber
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Re: One more sufferer ...

Postby Fissulyna » 29 Apr 2010, 01:30

I am so sorry to hear about your long time suffering : (((.
Since you has roids for so long - you can compare the pain and discomfort of them before you got a fissure and after : (. I am betting that pain is mostly from fissure, especially if you have internal roids - they usually are not painful. One that are outside (on the edge of the anus) are extremely painful - but fissure pain is on the top of the list of all anal pains !!!!!
It is a bummer that you will not be able to enjoy your trip to the fullest : (. Try to have regular sitz-baths wherever you stay and of course, bring with you all of your "butt arsenal" - creams, fiber, Miralax ... whatever you might need. Couple of our members had trips while having an active fissure and they did not experience tremendously more discomfort . You are now on top of your symptoms and I doubt they will worsen as long as you keep BMs soft and use your creams !!! All of that walking can bring more blood to your fissure and make it heal : )))) !!!!!!! One never knows ; ) !
Have a wonderful trip and come back here to tell us about it all : ))) Image
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Re: One more sufferer ...

Postby NeuropathicGuy » 30 Apr 2010, 01:41

Hey Philber, I'm sorry to hear about your troubles. I'd agree that it's probably the fissure causing the pain.
Funny thing, I had hemorrhoids for many years. Doctors were always able to see them very easily, and told me I'd eventually have to have them banded or surgically removed. I basically ignored their advice, didn't change a thing, and just kept slathering OTC creams like Prep H on them when they acted up. Then I got my fissure, dramatically changed my diet and took Miralax daily, and several months later, the hemorrhoids were all gone.
I've been "scoped" many times over the last year and no one has seen any trace of the hemorrhoids! They were basically "caught in the crossfire" and all went away due to the changes I made because of my fissure. I was able to ignore the hemorrhoids for years because they just caused some mild-moderate nuisances, but the fissure pain was impossible to ignore so I had to make the changes.
Maybe something similar happened in your case? I do still have my fissure, although it doesn't cause me as much agony as yours causes you.
BTW where are you headed for vacation? If you're in the US, then I'd guess a 7 hour time change would put you in Europe? Then again if you're already in Europe then I guess a 7 hour time change would put you in Asia :)
Anyway this might sound weird, but in case you're headed to Asia, the squatting toilets they have there are actually quite comfortable to use IMO if you have anorectal problems. They take a little getting used to at first but once you get accustomed to them, things actually *ahem* exit quite smoothly, with less effort required than US or European style sitting toilets if you ask me :)
Hope you can keep things under control while you're abroad! Maybe up your Miralax dose temporarily or something? I also poop several times a day usually (always have) and definitely understand that it's hard to control when and how many times the urge comes.
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Re: One more sufferer ...

Postby Philber » 30 Apr 2010, 06:37

Thank you both for your support.
We are travelling from Canada to Israel, thus the 7-hour time change (7 hours ahead). Israel has excellent medical facilities (which I hope I will not need), but baths are rare because water is scarce. I may just buy a sitz bath when I get there and travel with it.
I have often noticed that walking is good for my pain (although not always - sometimes it can make it worse). What seems to be the worst for me is standing for long periods of time, so I hope to be able to avoid that.
I am taking my arsenal of anal weaponry (Tucks, diltiazem, Metamucil, Miralax, docusate), and I have purchased a really cool little travel stool called the Walkstool - a three-legged stool that folds down to a very small and light package. That will allow me to sit if we are somewhere that we have to stand for a long period of time. I have also told my wife that there may simply be some days where I have to stay at the hotel, and she will have to take the kids out, and she is okay with that. As I say, that is not Plan A, but it doesn't make sense not to have a contingency plan.
Fortunately, Israel has an abundance of fruits and vegetables, and they are widely available, so I should be able to eat very well there. Together with my supplements, I'm hoping it will be enough.
Thank you again for your comments and support. I have read both your stories, and I feel your pain, literally. I pray that one day I will be able to come here and post something to the effect of "Don't worry - it will get better for you. It got better for me." That day seems far off in the distance now, but if there is one thing I have learned from this ordeal, it is that there is no quick resolution. Healing takes time.
All the best.
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Re: One more sufferer ...

Postby NeuropathicGuy » 30 Apr 2010, 09:52

Dang you've really thought this through :) That's really good that you're so prepared.
One thing I used when my fissure was real bad was either dibucaine (sold OTC here in the US as Nupercainal) or lidocaine (generally only up to 2% OTC here but available in stronger strengths online: http://www.amazon.com/LMX-5-Topical-Anesthetic-Cream/dp/B0000Y3GCU/ref=sr_1_1?ie=UTF8&s=hpc&qid=1272642539&sr=8-1). I know Canada is a bit different as far as what's available OTC so I don't know how this translates up in your parts. Neither one actually does much to cure the fissure, but they were at least somewhat effective at reducing real bad pain episodes.
Good luck! It sounds like a fun trip. Hopefully the fissure won't get in the way too much. It sounds like you've got the major bases covered :)
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Re: One more sufferer ...

Postby Philber » 30 Apr 2010, 10:03

For me, half the fun of travelling is getting ready and knowing that I am well prepared. I nevery thought that would include several different forms of laxatives and stool softeners, but if that's what it takes, then that's what it takes.
This is a really big trip for us, both financially and in other ways, so I really want it to be as good as it can be.
I have been thinking more about the relationship between the roids and the fissure. Since I started using the diltiazem, I have experienced something that others have reported. That is, I have less severe pain after a BM, but more lingering, dull pain throughout the day. My guess would be that what is happening is that the cream is helping the fissure, thereby relieving the severe pain after a BM, but I am left with the roid pain, which is typically less severe, more dull and longer lasting. That is comforting, because the fissure pain is worse than the roid pain (so if I had to choose ...).
I also think my roids must be getting much better. I have had several BMs in the last couple of weeks with no blood at all. That is a distinct change from the last two years or so of bloody BMs.
I have an appointment with the surgeon on May 21, shortly after we return, so I will be very interested to hear what he has to say about the roids.
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Re: One more sufferer ...

Postby Philber » 21 May 2010, 13:55

We returned from our trip last Sunday, and things went pretty well.
The 12-hour plane trip there and back was no problem, because it conveniently fell between BMs. Of the 14 days that we were away, I had two really bad days, although I stuck it out and stayed with the family while we toured. The pain on those two days was pretty bad, and I even thought I might have to go to the hospital one day. But other than that, the days were 'normal' for me - pain after each BM, starting about 40 minutes after and lasting about an hour. Since I'm kind of used to this level of discomfort, it didn't prevent me from participating in any of our touring.
I was good about my diet while were were away, and that's easy in Israel, because fresh fruits and vegetables are a staple of every meal. I was also good about taking my flaxseed, Metamucil and Miralax twice every day. Every hotel had a shower wand, which was fantastic. Last but not least, my little portable Walkstool (walkstool.com) was a lifesaver. There was lots of standing around, in museums and historic places, and if there were any seats they were often taken by elderly people (I'm 48 and appear very strong and healthy - I can't go asking a 75-year old woman to give up her seat for me). The stool travelled everywhere with me, and it made a lot of days quite bearable that otherwise would have been miserable. Thank you little Walkstool.
Today I went to back to my surgeon. He confirmed that the AF is still there, and he says that is what is causing my ongoing pain - not the roids. As with you Neuropathic Guy, the roids seem to have cleared up significantly, as a result of all the dietary and lifestyle changes. But sadly the AF has not changed much.
So, I'm on the diltiazem for another 6 weeks, then I go back to the surgeon, and he'll decide at that point whether I'm having LIS (and possible hemmorhoidectomy - he says he'll make that call when he sees what's actually in there). If I'm having the surgery, it's scheduled for the end of July. Hopefully the AF clears up in the next 6 weeks or so. Otherwise, I'm ready to have the surgery and get this thing fixed.
Best wishes to all.
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Re: One more sufferer ...

Postby NeuropathicGuy » 21 May 2010, 19:11

Hey, glad you had a good trip. Sorry to hear about the bad days you had over there, but it sounds like you managed it well. That walkstool looks awesome. Never knew something like that existed before. I looked it up and it looks like it runs between $60-$80 USD which isn't bad at all for such a convenient thing. Might have to grab one for myself, especially now that I know it's "butt problem approved".
It's good to hear that your roids also got caught in the crossfire :) As long as they're not too severe already, my experience is that they go down pretty easily as long as you're proactive about it. They're definitely not as stubborn as fissures. Only problem is they're generally easier to ignore, so people do and they end up progressively getting worse.
Got my fingers crossed for you seeing improvement on diltiazem over the next couple of months here. Given how long you've had the fissure (about 7 months total and 3 months of bad pain I believe), I'd say there's a decent chance it's chronic and will need more aggressive treatment, but you never know. I had LIS since we last spoke and am currently recovering, so by the time you're going for the operation -- if you end up doing so -- I should have my full impressions ready.
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Re: One more sufferer ...

Postby Philber » 27 May 2010, 15:15

Yeah, the walkstool was great. I keep it in my car now and take it whenever I think I might need it. It's light and compact. It isn't a sofa, but all I need is something soft to sit on instead of standing.
Now that I know the difference between the fissure pain and the roid pain, I've probably had the fissure for several years now. The surgeon told me it is chronic, and that with chronic fissures the cure rate with diltiazem is about 40%, and the recurrence rate is about 15%. He said the cure rate for surgery was 90%, and the recurrence rate about 3%.
I have now been back from my trip for 10 days, and I am definitely a bit better. I'm pretty good with diet - mostly fruits, veg and whole grains (although I do eat nuts, maybe I shouldn't). But things are a bit different now. The pain used to be almost like clockwork - starting 30-45 minutes after a BM, and lasting for about 45-60 minutes. But now, the pain often starts 1-2 hours after a BM, and can come and go for hours after. I often have mild pain for a couple of hours in the afternoon. I never had that kind of mild prolonged pain before. It's mild, so that's great, but it's present a lot more, so I think about it a lot more. It is clearly fissure pain, because the doc showed me how to recognize the local pain of the fissure, and now I know it when I feel it.
I'm trying hard to do everything I can to relax that muscle, and I spend time thinking about relaxing the muscle, which hopefully will have a positive effect. I can now often recognize when the muscle is in spasm, so I'm trying to use that information to do everything I can to relax at those particular times.
We'll see how much better I can get before July 9. Otherwise, I'm having LIS for sure and maybe hemmorhoidectomy on July 26.
All the best.
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Re: One more sufferer ...

Postby NeuropathicGuy » 28 May 2010, 13:55

Hey there, when my fissure was still "young" it underwent a similar pattern. In the very beginning, I had no pain except for severe debilitating pain for maybe 30 minutes immediately following each BM. After those 30 minutes, the pain was totally gone. Then it eventually the pain became less intense (but still bad), however the tradeoff was that it would persist for about half a day (sometimes more) following each BM.
Finally, after I treated it with Botox and various ointments, the intensity went way down, and it was just a mild-moderate pain throughout the day. Sometimes it was associated with BMs and sometimes it wasn't. The quality of pain at this point (maybe 8 months after the fissure's onset) was dull soreness as opposed to sharp throbbing in the beginning.
I don't know what causes it, but the nature of fissure pain does change for many people throughout the course of the problem.
For me personally, the pain eventually became very manageable, and it was still very manageable when I elected for LIS. You've had your fissure for quite a long time already and it sounds like your pain is worse than mine was after that stretch of time, so to be honest I'm guessing surgery will give you your best shot.
To be honest I personally have a gut feeling that healing rates for chronic fissures using the ointments are overstated. A lot of people improve on them, for some it (like myself) they make the fissure tolerable, but I seldom see or hear about people fully healing on them after the fissure has been around for a while Image Here's hoping you'll buck this trend over the next month or two though!
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