Tale of My Tail

What a long strange trip it's been....

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Tale of My Tail

Postby TFog » 01 Mar 2015, 15:04

Hello AF Family!!!

I will apologize in advance for a long post. This has been a long battle. I have done a fair amount of reading and experimenting and I would like to share some details of my experience with the hope that it may help others.

This is my first post to this forum, however, this is the second time I have started to write my post. The first time was after I thought I had successfully healed my AF without LIS surgery through diet and other measures I will describe below. However, a few weeks later, I suffered a setback and as a result decided to have LIS surgery. I am now two weeks post-surgery.

Before getting into the details of my tale (or more precisely, the tale of my tail), I would like to express my heartfelt gratitude to the founders and many contributors to this forum. This site has helped me immeasurably and I am deeply in your debt. Not only is there a wealth of great information, the support and encouragement have really helped me to work through my ordeal. To all of you, THANK YOU SO MUCH!!!! You TOTALLY ROCK!!!

Here is my story:

I had been experiencing some discomfort and finally made an appointment to visit my GP last April. He told me I suffered from hemorrhoids. The matter did not improve over the next several months. I exchanged some email correspondence and last October I visited him again. He reconfirmed that I was suffering from hemorrhoids, but indicated that if I was insistent, he would refer me to a specialist. In November, I was in severe discomfort, so I went in to see the specialist.

The specialist gave me the most painful examination I have ever suffered. I thought I was going to pass out. He checked to see that I had no tumor and then told me that I did not suffer from hemorrhoids, but that I likely had an AF. I had never even heard of an AF before, so this turned out to be incredibly valuable information, if for no other reason than I was able to use the search term to find this site.

The doctor prescribed nifedipine and told me that if it didn’t heal in a few weeks, I should probably consider surgery. When I went to pick up my prescription somehow it got changed to 0.2% nitroglycerin. After I got home, I learned that the specialist was a general surgeon, not a CRS.

The next several days after this examination were by far the most painful for me. Many contributors to this site have described the pain in precise and eloquent detail so I will not repeat the description here other than to say that every word rang true.

My lifestyle has been fairly healthy – I exercise regularly, eat lots of fruits and vegetables, no fast food, and so I was determined that I could address the AF without surgery. I determined that the most important factor was stool softness. So long as I was passing large or hard stools, the AF would be reinjured which restarted the pain cycle.

I really increased my intake of water, and I mean a lot – 10 to 20 sixteen ounce glasses a day. I think that failure to drink enough water during the day may have been one of the causes of my AF. I went for a high fiber diet – baked potatoes, broccoli, cauliflower, beans, cooked spinach; McDougal soups – vegetarian and not too spicy. For protein, primarily greek yogurt and fish (I found some great frozen salmon burgers). Lots of fruit – oranges, berries and pears. I found ghee (purified butter) and olive oil were of help too.

As for supplements, I started off with psyllium and Colace. I think I was initially using too much psyllium as the stools were soft, but bulky and hence painful. I cut down to about ¾ of a heaping teaspoonful twice a day. I am not sure that the Colace has ever been a help at all, but I am still taking it as I seem to have found a formula that works and I don’t want to mess with it. More on that later. A week or two in, I added magnesium which seemed to help, but the stools were still a little to firm. These would not have been a problem at all if my system were normal, but they were just firm enough to irritate the AF and start the spasms. I could not understand these semi-firm stools in light of the amount of water I was drinking, my diet and the supplements.

At some point, after about 5 weeks of suffering, I was rereading some posts on this site and noted that several people had recommended Miralax. Until that point, I thought Miralax and Colace were two different products but that they accomplished the same thing and thus were interchangeable. (I had never heard of these products before and both are stool softeners). Since I already had Colace, I had not tried Miralax. However, after rereading the posts, I bought some Miralax and it had an instant effect. The very next day my stools were noticeably softer.

During this period of time, I was managing my life by managing my diet. I tend to have a BM right after eating. So, to be able to get work done, I would get up very early and go straight to work without eating. In the early afternoon (very hungry) I would go home, eat, have a BM and then take whatever afternoon/evening suffering the AF would throw at me.

As things progressed, on some days I would only have about an hour of discomfort and then I could at least sit up and be functional. At one point, I had improved to the point that I was ready to claim victory and I started to write a post to this site with what I thought was my roadmap to victory without LIS surgery.

I was able to go on vacation for a week and I spent the entire time relaxing which helped a lot. I really thought I had kicked the thing.

About three days after vacation, I went a full day with no BM and when I finally went the following day, I had regressed – nowhere near the pain of the original, but enough to interfere with my life. After that, some days were better than others, but the thing continued to nag. It had now been over two months and I was becoming increasingly frustrated to have this thing interfere with my life. I finally made the decision to have LIS surgery.

I found a CRS and was able to make an appointment. We discussed botox and LIS surgery. Because I am predisposed to address my health matters without surgery, I would have typically considered botox and my CRS did not push me one way or the other. However, since I was so frustrated and had already mentally prepared myself for LIS, I went ahead and made the decision to have the surgery. The day before I went into surgery I had two BMs – first around noon and then around 5. I was in pain all afternoon/evening and even having trouble falling asleep around 11pm.

I did not eat much the day before the surgery, and I ate nothing the day of the surgery.

I has now been two weeks since the surgery and I have to say that for me, this was entirely the right call.

One thing that was a little scary was that I had no BM the day of the surgery or for 3 days after – 4 days total. I was really concerned that when I finally went, I was really going to suffer. However, this turned out not to be the case.

I can’t say that the first BM post-surgery was pleasant. It was a bit uncomfortable and messy, but what was noticeably missing was the little twinge of pain that starts the spasms. Every day since has been a noticeable improvement. I have been able to get back to work in the afternoons, participate in my evening activities for the first time in four months. I only have an occasional and minor discomfort.

I am cautiously optimistic my AF is finally healing.

Following are my comments on various things I have tried or worked on these past several months.

This Forum. It is listed first for a reason. The information and support are huge. You all have my eternal gratitude. I recommend that any AF sufferer spend time on this site. Not only is there a wealth of information on many different topics, I found that it helped me to set expectations. I was able to better understand what I was dealing with and my available options. I was also able to hear from other people who had pursued these various options and what results they had achieved. Again, thank you all so much.

Baths. I never purchase a Sitz bath. However, a warm bath is absolutely the first line of relief from the pain and discomfort of an AF. I take a warm bath for about 20 minutes after every BM and at least three times a day in addition (I am still taking a bath after every BM, although I think if I were to skip a bath, it would be OK). When the pain was most intense, I would take a bath about every 30 minutes. I think I have taken more baths in the last 4 months than probably the rest of my life combined.

Hot Water Bottle – like the kind like you see in the cartoons. I never owned one before, but now I own two – one for home and one for work. They are my new best friends. Thank you Scientist2516 for this and your many other recommendations. I found the warmer the water, the better, and also I would fill the bottle pretty full (around ¾ to 7/8) and then squeeze the air out before fixing the stopper. Without the air bubble inside, the warm water was right against my bum as I sat/laid on the bottle. I never used a heating pad, but the thing I liked about the water bottle is that it conformed to the shape of my bum and brought the heat right where it was needed.

Chewing/Food. I realized that what goes in must come out. I figured the smaller the pieces, the better so I have really concentrated on chewing food thoroughly so that it is easier for my body to process. This is really noticeable with a few foods. For example oranges have a fair amount of fiber. Typically I would chew most of the orange, which has a lot of juice and soft pulp, and then just swallow when the fiber seemed manageable. However, I have found that if you continue to chew, it is possible to really pulverize the fiber. Also, I found that I could reduce the quantity of food (and hence the amount of bulk that I was passing) and not really miss it. I have lost weight through this process.

Meditation/Pain. Pain is a funny thing. On the one hand there is the physical injury and on the other there are signals sent from the nerves to the brain to let it know about the physical injury. I found it useful to try to separate these two by focusing on the fact that pain is a sensation separate and apart from the injury. I found that to the extent I could start to compartmentalize that sensation and focus my mind on other sensations, the pain could become more bearable. Don’t get me wrong, I could never get the pain to go away, I would just try to concentrate on putting it in a place where I could better deal with it.

Miralax/Colace. As mentioned above, Miralax was a game changer for me. I am still taking it and as I sit here today, I do not know if I will ever be fully weaned from it (if I can, I will). My CRS said that the most important thing post-surgery is to keep stools soft. For that reason, I also restarted Colace. As mentioned above, I really cannot tell the difference with or without Colace, but I view LIS as my last resort, so I am pulling all stops to make sure I maintain soft stools. Colace will be the first thing I drop once I feel fully over the top. The directions for Miralax say to take a capful a day. However, I have been taking half a capful every time I eat (twice a day). My theory is that I try to mix it with the food – same thing with psyllium.

Psyllium. I never took it before, but I think this will now be a permanent part of my life. I think that the product, with enough water, will keep any stool from forming into a rock.

Water, Water, Water. Miralax, Colace, and psyllium all assist with stool softness, but water is the first and most important element of a soft stool and all of the above products need water to function properly. That’s a lot of water. I am making myself drink a lot more water than I used to and I think this also will be a permanent change for me.

Don’t Push Things Too Fast. A few times I felt that I was making progress and I would start to press myself to do things – lift heavy objects, etc. A couple of times, exertion caused the spasms to restart. I am now being very deliberate and careful. I do not want to reinjure, so I am making an effort to move slowly. I don’t pick up heavy things and am trying not to press myself any further than I am very comfortable. I am wanting to start back to exercise as I think the movement and blood flow will be really helpful. However, first and foremost, I want to make sure to do no harm.

Avoid Spicy Foods. Kind of like pouring lemon juice in a paper cut. Enough said.

Beer and Ice Cream. While battling the AF, I did not take pain medication. However, I found that half a beer would help take the edge off. Also, I found that a small bowl of ice cream in the evening helped to improve my outlook on life.

Prunes. I never ate prunes regularly before. Now I do.

Frozen Wash Cloth. When the AF first started, I would alternated between cold and warm. For warm, I used the bath and water bottle mentioned above. For cold, I used a frozen wash cloth which I will describe below. I am not an expert, but I read an article to the effect that warm promotes blood flow and cold reduces blood flow. Since blood flow is necessary to heal after a while I focused more on the warm than the cold. That said, there were several times when cold offered the most immediate relief. Rather than ice, I found this to be fantastic. Take a wash cloth, get it wet and wring out most of the water. From there fold it neatly in quarters, put in a plastic bag and lay it perfectly flat – like a pancake - in your freezer. I found the top of a pizza box or other large flat surface worked best. Once frozen, you can apply the washcloth directly. Because the frozen washcloth is flat and thin, it will fit right where you need it. Also, I found that the washcloth would thaw before causing frost bite.

Post Surgery Comments. As mentioned above, I really tried to address my AF without surgery, but after several months, I made the decision to have LIS surgery and there is no question that was the right call for me. I am two weeks post-surgery and I feel much better right now than I have since last October. As for the surgery, there was a lot more blood than I would have thought. I would recommend bringing something for the car ride back (I laid down in the back seat). I soaked through my clothes as wells as a couple of towels. Maxi pads are good. So is a plastic garbage bag under a few towels. The first day was by far the worst and it got better every day after. After two to three days, I was not worried about soaking through my clothes and after around a week, there was really very little. For pain, my CRS gave me Tylenol with codeine. For the first couple days, I took the recommended dosage so as to not let the pain set in. After that, I was able to taper off rather quickly and I have not taken any pain relief in over a week (other than beer and ice cream as described above which really helps with the positive mental attitude!)

At this point, I believe my AF is healing. Immediately after LIS, I noticed that my BMs no longer trigger the spasms. Two weeks later and I am now getting to the point where BMs are not unpleasant in the least. I still feel an occasional twinge, but nothing nearly as serious as before. I am keeping my fingers crossed that I will be healed completely soon.

My heart goes out to any AF sufferer who may be reading this. I sympathize and empathize with you and hope that sharing my experience will be of some benefit to you.

My very best wishes to you all.
TFog
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Re: Tale of My Tail

Postby LJP6 » 01 Mar 2015, 22:58

I have just read your story and thank you for sharing the information that helped you.

I have suffered from haemorrhoids since a young age and after medications and banding was unsuccessful I had a partial haemmorhoidectomy 2 years ago I then began to suffer from chronic anal fissures.

None of the creams/gels work for me and they just give me severe headaches. I have had the Botox injection twice in the passed 2years. I am from the UK but I am currently travelling and living in New Zealand I am due to see a specialist in the next 2-3months to either have the Botox injection for a third time or try the Lateral Sphincteroctomy.

I make sure I drink plenty of water and have a good diet but still I suffer from AF's which don't seem to heal.

After the Botox injections everything seemed fine for 3 months but once it wore off it would only take a sickness bug to cause another AF. Sickness bugs are hard to avoid as they get passed on via family members and colleagues.

Please do keep us updated on your post surgery recovery as I would love to hear this has finally cured your issue. I will then consider under going the treatment myself as I am running out of options.

I was lucky enough to be referred private via the NHS so I have received quick treatment for the passed 3 years but I do not wish to cut my trip short in New Zealand. I am 26 and have been told having the surgery young can cause incontinence and other problems so this has put me off but I cannot keep living in this much pain.

Thanks again for the advice I will definitely try the miralex.
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Re: Tale of My Tail

Postby msimon » 02 Mar 2015, 04:03

Welcome to the forum Tfrog. So glad to hear that things are finally going well for you. I know what you mean about this site being a savior. I don't know how I would have go on this long without it. The people here do indeed rock!

Thanks so much for posting such detailed information on what has been helpful for you. I am sure it will be helpful for other AF suffers.

I hope your surgery continues to be a success. Keep us posted on your progress.
Dec '13 Fissure from anoscope
3 X internal sphincter botox
'08-'15 Botox for pelvic floor dysfunction
Nov '14 LIS/sentinel tag removal
Feb '15 Deroofing of recurrent infection from LIS
summer '15-healed but still ongoing muscle dysfunction/pain
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Re: Tale of My Tail

Postby zippitydoodah » 11 Mar 2015, 22:51

Thank you so much for your post. When you're already anxious about something, it can be really scary to read some of the tough times other people have had on here... so it's really uplifting to know that surgery can go so well! I hope you continue to heal well and please keep us apprised of your good health! =)
-Fissure since August 2014 after diarrhea and antibiotics
-Using diltiazem, baths, ibuprofen, magnesium, high fiber diet/supplements, probiotics, coconut oil, cleaning with water & wipes only
-LIS & skin tag removal scheduled for late January 2015
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Re: Tale of My Tail

Postby TFog » 18 Mar 2015, 11:46

Quick update - it has now been more than 4 weeks since LIS. My life is returning to normal. There is no question that LIS was a good call for me. My sincere thanks to the many hosts and contributors to this forum and my heartfelt empathy to all sufferers. I wish you all the very best.
TFog
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