Howdy from the depths of suffering!

Anal Fissure, signed up for a sphincterotomy...

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Howdy from the depths of suffering!

Postby Pain_Connoisseur » 29 Mar 2016, 21:47

I've been bed bound since February 2nd. I am 29 and I've had fibromyalgia since I was 17. I have been laying down only getting up to use the bathroom. Needless to say I feel like my life is over and it is taking a steep decline downhill since July 2015 with out of these weird chest pains in my sternum which can best be described as a 'chronic heart attack'. Yes... I know there is no such thing, but I feel like I am going through it all the time!

So, on to the sphincter... I've been chronically constipated since I was a little kid. We were poor and fruits and vegetables that didn't come in a can were a rarity. I grew up drinking Pepsi mostly and hardly touching water. So to my young ignorance I brought all my suffering on myself. My goal is to become a vegan, cutting things out of my diet one by one. Pepsi was harder to quit than any drug I have tapered off of. Ever hear of Effexor? That was hell coming off of... but still pop was harder to quit for me. So all the damage I have, I have done onto myself.

I had a colonoscopy at the beginning of March, and was only able to get an appointment with my gastroenterologist today finally, the 29th... to hear about how the procedure went. Does that sound about right to you guys? Did they make me wait too long??? I did the Miralax prep with blue Gatorade. All was fine an dandy until about 3 o'clock in the morning when my blood sugar was very low. I got really shaky, scared, nauseated, overall terrible malaise, followed by a flare up... I did not sleep the night before. Then I had to ride 2 cities away to get my procedure done. In order to travel in a car I STILL have to put the front passenger seat down, put a couple of couch pillows under my belly, a few pillows to keep my head up, a pillow on the side for each elbow, and I pull the seat belts all the way down in the back and hold on so that I do not apply any pressure on my rectum. Then I use a wheelchair by placing my knees where my butt should go and stuffing some pillows around my rear encase it so much as touches the side and I hang on to the bar that I am being pushed by. I have not been able to sit without my sphincter clamping shut and the pain level on that thing is right up there with the sternum pains. Any of this sound familiar to you guys? Because when I explained this stuff to my General practitioner last week he said to me, "Have you thought about seeing a psychiatrist for this pain? Because I have never heard of sphincter spasms." >.>

I have PTSD so they had to medicate the crap out of me for the procedure. I'm immune to Valium, thanks psychiatry. I found out today what they gave me for anesthesia....bah, I lost the paper work... I'll find it in a bit and put that information up, something like like 50 mg of benadryl (why?) and 2 other things. My gastroenterologist said, "Oh, wow, we gave you something we call a hurricane, which is the maximum dosage of what we are allowed to give a patient going under." I thanked him because I had the best sleep of my life for a week, heh... Seriously, I toss and turn all night in pain.

He said I had a fissure that was healing in the back... it tore open again just this last Sunday because I went a day without taking my daily double dose of Miralax. My poop is as thin as a sharpie marker and as I was going to mention that to him he beat me to it, "Your sphincter is real tight." He went on saying, "Now, not to scare you, but the next step is surgery." I shrugged it off because I'm numb, I keep myself numb and dissociated on the matter right up until the procedure, and then out comes a tsunami of anxiety. It is a self preservation mechanism of mine that is quite automatic.

I told him I have been bed ridden, except hobbling to the bathroom since February 2nd and he says to me, "That sounds long enough to me." And he didn't say what type of surgeon he was referring me to. I am assuming a colorectal surgeon........ I do not trust the surgeons in this area. My mom and dad worked at hospitals, cleaning up the operating rooms, watching the operations in progress, and they told me the multitude of ways that the Drs and nurses cover their arses when they mess up during surgery, and then they blame it on the patient with some other underlying condition, like their weight. So... I don't know what to do... but I need my butt fixed. He mentioned that cream that starts with the letter N, but he mentioned headaches and I am a whimp when it comes to headaches. Give me spinal pain instead, I seem to handle it better. But my headaches always lead to nausea and nausea is my other weakness... but the knife pains I get up my rear have to stop for my life to continue. I can't even pleasure myself with without spasms Talk about tension, irritability and rage!!! Anyways, he referred me to the surgeon and we'll see what he wants to do. I should get a call later on in the week about setting up an appointment.

Any advice???? Should I try anything before trying out the surgery? Anyway to lesson this sphincter pain? What can I expect??? Is the pain this bad for you guys or is my fibro just making it more intense on me?

I go in for a CT scan Thursday because my general practitioner was very puzzled by my condition. This will be my first CT scan, I wonder do they just give it to the one area or do they do a CT scan all over? I hope they do it all over since the dye I am going to be ingesting will be all throughout my system. They might be able to find some other underlying condition that I might have in regards to fibromyalgia... But I think this tight sphincter is messing with my pelvic floor because now a few weeks ago I started to get shooting pain in my cervix off an on.... I've really been looking into euthanasia and Sweden... it is just so expensive though...

Anyways, I've give anything to be 'normal'. I lost all my friends all young age because I couldn't keep up with them. And no matter what friends I make, they always go away because they have no patience or understanding for anyone in pain. Pain has literally taken my life away. Most Drs can't do anything so they blame me. I feel like I am a huge burden on my boyfriend and society. I'm already the walking dead.
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Re: Howdy from the depths of suffering!

Postby Canadabum » 01 Apr 2016, 15:25

Hey P.C. -- welcome to the forum and sorry you have been dealing with so much pain and discomfort.

Our butt problems are definitely no fun to say the least!!

Have you tried any of the regular fissure creams (nifedipine, diltiazem, Nitroglycerin)? The Nitro is the cream that can give you a headache.

Have you tried using heat on your underside when you feel the most pain -- warm baths, heating pads etc

Do you take a sitz bath/bath after bms?

All best - Canadabum
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Re: Howdy from the depths of suffering!

Postby Pain_Connoisseur » 01 Apr 2016, 18:19

Hi there Canadabum!

My Gastroenterologist frankly and compassionately told me, "I don't mean to scare you... but the next step is surgery if it hasn't healed yet." He said that the nitroglycerin cream is supposed to help, but it causes really bad headaches and only seems to prolong the inevitable needed surgery. He said that being bed bound since February 2nd sounds like a long enough wait for him find me a surgeon. He set me up with a local colorectal surgeon who should've called me by today to set up an appointment... I need to make sure that the surgeon is board certified. If the surgeon doesn't show up on any of my online searches, is there anyway that I can go about getting his credentials? What other credentials should I make sure that the colorectal surgeon has? I know of so many botched surgeries.... but I am so DONE with this pain. I know it has to get worse before it gets better... I need this to get better... it is making me contemplate suicide constantly. I can tell that my sphincter had been shrinking since July of 2015 because the diameter of my poop started getting smaller around then.

My fibromyalgia is so bad that it is very painful for me to get into a bathtub. I was doing sitz baths the first week back in January like my GP proscribed, when I was having pretty bad pain(small stuff in hindsight)... then I was doing very very light cleaning and then a pop occurred in my rectum, and TERRIBLE PAIN happened. I went straight to the bed and the spasming nightmare began Feb 2nd. I have not been able to sit on anything since. I made the mistake of trying to sit up for my car ride to get a CT scan yesterday because the barium swallow made me so nauseated that I was afraid of lying down in the car, that it would make me vomit up the compound. BIG MISTAKE! Less than 10 minutes of riding in the car, barely sitting on my rear, TERRIBLE SPASMING began. I went right back to square one just as I was starting to be able to slightly sit up on my own.... My poop was the diameter of a small sharpie marker, now it is straw thin. Thank goodness for Miralax!!! I took 3 doses of Miralax after the CT scan because I was warned that stuff -will- constipate me. I normally take 2 a day with apple juice with a straw and 3 liters of water throughout the day.

I would like to take a sitz bath, but it is too painful for me to sit in the bathtub. I would get one of those things for the toilet, but our septic system has not been working for a while now after the plumber knocked it out with the snake... trying to find affordable places to live on my disability payments.... not looking promising... before I only had roof damage to worry about repairing... now with this... it is a -very bad situation- over here. I will say that I am done with owning property after this. I only want to rent from this point forward.

I usually have to use hot water in a heating pad to help with my low back and hip pain.... but I noticed when I warm those areas up, the hip area is right next to my rectum, I start getting terrible pains in my rectum. Is that normal? Should I fight through the pains and see if it gets better? I'm just terrified of provoking anything.

I am reading this website like crazy, everyday, copying and placing notes in Word Pad. I sent my guy out to get me some Neosporin today to try on the inside/outside of my rear. I had a slight retear this last Sunday because I foolishly forgot to take one day of Miralax :( This website is the most valuable source of information I have come across for my condition. I really feel for the people on this forum. My GP had said to me, "Have you considered seeing a psychologist? ...because I have never heard of rectal spasming." >.> Luckily my gastroenterologist did... I was beginning to think... oh great, did my fibromyalgia make this pain up to???

Thank you kindly for you welcome and advice <3
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Re: Howdy from the depths of suffering!

Postby Canadabum » 01 Apr 2016, 21:38

P.C.,

So sorry to hear that you are in the thick of it right now. I know the pain can be horrible. If your gastro has not heard of a spasming sphincter then they need to go back to med school and take a class called arse 101. The spasm is what really hurts bad and is a classic sign of a fissure...you are not imagining this!!

I would try and see a CRS as soon as possible -- don't stop trying to make an appointment to be seen. Gastros have no real experience treating fissures...as for Nitro not being helpful...ridiculous. For some it is extremely helpful so I wouldn't discount it.

As for pain relief - heat and cold helped me, swimming, ibuprofen, breathing techniques. Because you are also dealing with fibromyalgia you will need to adjust to what works for you.

As for potentially getting surgery...so long as you are hooked up with a qualified CRS you should t worry yourself. So many people on this board go the surgical route with great success...it may or may not be the solution -- keep it in your back pocket.

As for your bottom...keep it clean, warm (if you can), eat well -- less processed food and more soft soluble fibre foods, fruits and veg, lots of water...swim if you can (something physical to distract the brain). Perhaps before a bm apply some Vaseline as a barrier and use good potty positioning (like squatting).
We have all had our very dark days with our fissures...they can be intolerable and painful...but don't let it rule you IR best you down...you are far more than that!! Go check out the book You are not your pain....
Keep us posted and all the best,
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Re: Howdy from the depths of suffering!

Postby Pain_Connoisseur » 05 Apr 2016, 01:08

As of last Friday I think I endured another fissure, this one being in the back, yet slightly to the left :( Thank you very much for the book recommendation I just ordered it and look forward to reading it over the weekends. That was very kind of you and I appreciate it :)

The week days I spend all day, with no play researching about anal fissures, fibromyalgia (Because it has brought on an interesting flare up), apartments to move into, disability/hud housing information, trying to find another job for the BF... I'm exhausted...

What really helped me with the pain down there and everywhere was the fentanyl they injected into me before the colonoscopy. I was able to sit up in a wheelchair afterwards and be wheeled out of the hospital, then I slept laying down on my stomach in the car all the way home lol I have to be careful with the NSAIDS because when I was younger in order to deal with my pain, I popped them like candy and my stomach/small intestine starts to hurt/burn really bad whenever I start taking them. Then I take the Pepcid.

It has come to my attention that I have a food addiction to carbs and sugars the more stress I endure. I am trying to introduce healthy meals slowly, but I don't know how to beat these cravings for pizza. It is like the more that I read that I need to stop the more my body/brain works against me :( I cut out pop almost 2 months ago...finally, that was hard and I think it is one of the reasons I am having problems resisting a lot of other things at this time. I'm taking 2 miralax doses a day inside grape juice or apple juice. That seems to keep me regular daily in the morning. My whole life I would go 3 days to 2 weeks without a bowel movement! I notice if I have to do any pushing during deification I experience the glass shards sensation along with the spasming later :( As long as I can keep it really soft, but not a liquid, I seem to be alright. I just need to figure out how to shut these cravings up.

How do you handle car rides anywhere without nearly instant excruciating pain? I knew if I was driving I would probably swerve off the road and into something :S I was using preparation H and that seemed to be helping with the initial inflammation that seems to have subsided, but it was causing my blood sugar to spike so bad that my feet were keeping me up all night itching like crazy!!! I thought I had athlete's foot and went to my GP who informed me I didn't, then he said he thinks it is a circulation issue and now I'm waiting for the results from my battery of blood tests.

Thank goodness for this website!!! When I was doing the colonoscopy prep, it was a life saver! I applied Vaseline diligently after every bowel movement lol. I also did the squatting and there is a world of difference in squatting vs how I was sitting. I'm 5'1 so my feet barely touched the ground when I used the toilet lol Now I use 4 yoga blocks, 2 stacked onto each other on either side.

Information:
It is my understanding that Medscape is a free and legitimate medical resource according to articles I was searching for that Drs use and recommended. So I typed in Anal Fissure and this is what I got: http://emedicine.medscape.com/article/1582334-overview

WARNING: The procedure portion has graphic pictures of the procedure
.
It still sounds like sphincterotomy has the highest healing capability of all available options. "More than 90% of fissures heal after lateral internal sphincterotomy. The incidence of recurrence is lower with this procedure than with other available options, including fissurectomy and botulinum injection."

It sounds like a chemical sphincterotomy doesn't offer the best numbers. " Healing rates have varied in the literature, from 67.5% to over 90%" With the article proposing that with chemical sphincterotomy, "there may be a role for it in the management of recurrent anal fissure following lateral internal sphincterotomy."

As for cutting inside or outside the rectum at the sphincter muscle: "Studies have found no evidence of a significant difference in results between the open and closed techniques. However, the closed technique requires experienced knowledge of anorectal anatomy and should be reserved for surgeons with advanced colorectal training. "

Information on the Nitroglycerin: http://reference.medscape.com/drug/rect ... tal-999667 . I am not liking these side effects. Headaches, nausea, vomiting. My headaches have a 50/50 chance of becoming a week long migraine :( I can concentrate better while in physical pain. Oh my it can cause Methemoglobinemia in the case of overdose: http://emedicine.medscape.com/article/204178-overview Well apparently there are a lot of compounds that can cause this condition.

I hope this information that I shared is useful to anyone else who come across it. I'm not really sure where to post it at to be exact. I intend to post more findings as I come across them. No one should have to suffer in this kind of pain with little to no quality of life :( I'll keep you posted. If I find anything useful, I promise to share it! :)
:thanx:
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Re: Howdy from the depths of suffering!

Postby Canadabum » 05 Apr 2016, 06:00

PC...if nitro is giving you bad side effects speak with your doc about switching to nifedipine or diltiazem (nifedipine worked best for me - diltiazem gave me a rash).

All good info you are finding - basically most people opt for LIS if the cream/bath methods don't work...and thankfully LIS seems like a generally quite successful route for many.

Best - CB
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Re: Howdy from the depths of suffering!

Postby Ohno97 » 11 Apr 2016, 23:50

I have had a fissure for 6 months now, after everything that the doctor was giving me only provided me short term relief, I decided to experiment. Nothing worked til recent , I was told by a pharmacist aloe Vera promotes healing so I went to Walmart and bought the pure aloe Vera gel (clear gel ) than I went to the local grocery store and bought coconut oil which can be found in the baking section. I put aloe Vera gel on every morning and I sitz bath every morning before applying the aloe Vera gel. I put coconut oil on every night before bed and I have little or no pain sometimes I get a awkward discomfort but no pain. I have my life back it's great please be aware it may take up to a week to notice a drastic change but this truly works , I was never into natural remedies until this . Also make sure you apply the aloe Vera generously it's better to have the moist feeling than pain. The coconut oil will melt to body temperature a little bit will go a long ways . Good luck and let me know what you think about this , it really gave me my life back and it's really cheap which is so nice. By the way aloe Vera and coconut oil also relieves the pain and itching.
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