Fissure, Fistula & Coeliac Sufferer

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Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 29 Apr 2013, 02:39

Hi there,
I've just found this forum and it is really interesting to read about other peoples experiences, and it's good to know that I'm not alone in this, as some family members and friends do not understand why I have been in pain for such a long time.
In November last year (2012), I flew to a wedding in Melbourne. I always suffer constipation when flying, but this time everything seemed okay. Until 4 days into the trip, where I started to have massive, painful stomach cramps, and a very large amount of rectal bleeding, even without opening my bowels. I flew straight home the next day, and presented myself to a hospital who, according to my nurse friend, was supposed to be good at colo-rectal surgeries and specialisation. I was admitted immediately, and after having a sigmoidoscopy, was found to have 3 very large internal haemhorroids, which were removed with general anaesthesia and surgery. I was released from hospital, without having opened my bowels. A week later, I had to return to hospital with fecal impaction, and urinary retention. This was treated and I was sent home again.
2 weeks later, I was in a massive amount of pain, suffering from muscle spasms in my rectum. I presented to a different, private hospital (the prior hospital was a public hospital), as I felt that the public system had let me down. I was diagnosed with fecal impaction again, and anal fissures. I also had more haemhorroids that had not been treated, so under another GA I had botox to treat the fissure, and some banding of the haemhorroids. The hospital and surgeon were brilliant, as the surgeon had suffered a fissure himself, so could relate to my pain, and therefore gave me pain medication and laxative treatment to suit. After a week I went home.
Another 3 weeks passed by, and I was still in a massive amount of pain. Actually, the most pain I had been in during this entire ordeal. I presented to the private hospital again, only to find this time that not only do I have a fissure, but I also now have an abscess and a fistula. Another surgery, and a drain was put in to drain the abscess. Another week in hospital.
3 weeks later, and I was still in pain, which was worsening. I went and saw my GP this time, who had also suffered an anal abscess himself, and was very sympathetic to my cause. He gave me some morphine, and told me to present to hospital again if the pain didn't subside. He also took bloods to test me for Coeliac Disease, due to my ongoing stomach pain.
I presented back to the hospital again, where I had another GA to check for any changes, and for manual evacuation. I was also given a gastroscopy to check for Coeliac, which came back positive. My diet immediately was changed to avoid gluten, so I hoped that this might see the end of my ongoing bowel issues also.
Not to be. Just two weeks ago, still in a lot of pain after each bowel movement, I called my colorectal surgeon and made an appointment with him. He arranged another GA, and I had more botox, and the anal fissure was found to have increased in size.
So, all in all, I have not been able to work in 6 months so far. I have had 7 hospital admissions, and 5 surgeries in this time. I am lying on my couch right now, still in pain, and am now having bladder pain to go with it. I have sitz baths, I have laxatives, I have pain meds... and I am just at my wits end. Right now I feel like presenting to hospital again, but I don't know if that is the right thing or not. I just don't know what to do next. This has been the worst 6 months of my life, as I have always been a pretty healthy person.
Thanks for listening, and I would appreciate any advice or suggestions that anyone may have!
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Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 29 Apr 2013, 02:59

Also, I'd really appreciate any hints on diet that works for constipation. I know all about the drinking lots of water, etc, but now I have to live with a Gluten Free diet, I can't have high fibre bread anymore.
I'd really love to know what foods work to make the bowel motions a lot softer, and what foods to avoid constipation!
I'm also taking Movicol and a Lactulose syrup. I'm from Australia, and I'm guessing most of you guys are from the US, so you might not be familiar with the same brands of laxatives that we have here.
Also, I am using 2% Diltiazem ointment to help with the fissure.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby bgd » 29 Apr 2013, 06:08

How are your stools right now? Still hard? It seems many measures were taken on you, but the basics were skipped. Softening the stool is the most important thing to achieve I believe. Fissure won't be able to heal if you keep getting constipated.
What worked for me was flax seed powder. I mixed it with honey, to make it sweeter. Additionally I started eating dry prunes and more apples. Plenty of water of course. Doc also prescribed paraffin oil.
Then Easter fasting came and it solved all my stool problems. I even had to stop flax seeds and dry prunes, cause they were making my stool too soft and burned my fissure. So if you can go vegetarian for a while, try it out.
Another good advice I received here was too use vaseline right before each BM, make sure it covers the fissure. It clearly made a difference.
I also started taking magnesium, it apparently helps calming muscle fibers, thus reducing spasm. Can't confirm yet.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby bgd » 29 Apr 2013, 06:11

Here's a scale for stool consistency:
http://en.wikipedia.org/wiki/Bristol_stool_scale
Where are you at?
I found 5 worked best for me, but also getting 6 at the end of BM and it burns like hell. I got 7+ once and I was in spasm for 2 full days, although moderate.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 29 Apr 2013, 06:22

Hi bgd,
Thanks for your reply!
According to the scale, right now I am at Type 1. Very hard to pass anything. Causing me a lot of pain to even try to go, and the urge to strain is very strong, and I know I can't because I will just make things worse.
I've been taking laxatives to try and prevent this, and although the surgeons prescribed 3 different types to me to take all at the one time, I either have Type 6 or 7, or Type 1 and 2. No matter what I do, I have not been able to find a happy medium.
I was just thinking that I might start cutting out carbohydrates completely, and focus on fruit and vegetables, and maybe a very small amount of protein.
Thanks for your suggestion, I will try flax seed powder. How much do you have at a time, and how many times a day?
I will start using the vaseline before each BM, and see how I go.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby bgd » 29 Apr 2013, 07:16

Yeah, I imagine it would be hard to impossible to heal with 1.
I never took laxatives, they work for most of the people as I can see, but for some they just bounce from constipation to diarrhea, cause it's so hard for some to get the dosage right. It also causes frequent stools, which I'm trying to avoid. Daily stools would basically put my life to a halt. So now I'm at one BM at every 3-4 days and the vegetarian diet helps me keep my stools at 5-6. Still hurts, but does less damage then a 1 of course.
I took about a spoon twice a day, morning and evening. Started working after 3-4 days. But depending on what you eat that day, might work or not. So constant diet is the key after all.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby Savaici » 29 Apr 2013, 07:51

Hi there, and Image to the Forum Kristy! Really sorry that you are in pain, and we are here to advise and commiserate too! We have all been there and some of us still are.
Just to help with some links: Here is a link to information on Celiac Disease on the Mayo Clinic site in the US. This is a reliable source:
http://www.mayoclinic.com/health/celiac-disease/DS00319
Also, found a link in Australia, that might be of some help. It has a 'Newly Diagnosed' section and a section with diet information:
http://www.coeliac.org.au/
Getting from constipation to ease of passing a BM is a job for all of us on here it seems. You might already know this one, but here is a link to Osmolax, which I believe is the equivalent of Miralax in Australia.
http://www.squarepharma.com.bd/SPL_PI_PDF/p15.pdf
I have had three hemmie surgeries + a thrombosed one, and 'over zealous' hemmie surgery is why we can land up in this situation. I have a very strict diet, practice anal dilation prescribed by my doctor, take Milk of Magnesia, and this keeps things going. I also have an auto-immune disease which gets flares and irritates my colon.
Anyway, hope this helps, and feel free to ask any questions.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 29 Apr 2013, 08:10

Thanks for the reply and the lovely welcome, Sav!
I am a new member of the Coeliac Society here in Australia, and I do find them very helpful. But thank you for the links!
If I can ask, can you please explain to me what your diet entails, what you include, and what you exclude? That would be really helpful, because I am really trying to figure out what is the best things to eat to keep things moving.
Also, pardon my ignorance, but what does anal dilation involve?
I also have had thrombosed hemmies, so I have complete sympathy for you... it is not fun!
Right now, I've been trying to have a BM for 24 hours, and it is just not budging, and I am so terrified to go to the toilet, as I know I have agony awaiting me. Do you get into situations like this, and if so, how do you manage it? My doctor has given me Valium to take 30 mins before a BM to relax the muscles (even thought I've had Botox as well), and I take painkillers before, but it is still so very painful.
I look forward to hearing from you. It is so nice to talk to people who understand! You are all my lifesavers :)
Kristy
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Re: Fissure, Fistula & Coeliac Sufferer

Postby bgd » 29 Apr 2013, 12:12

Damn, this sounds way too familiar. Short term, you need to soften what has already built up and hardened in your rectum. Glycerin suppositories should make you go. If one doesn't help, I think it's safe to insert a second one after 30 min. It takes some minutes for it to melt and soften the stool.
Long term, you need to stabilize your stool somehow. Since you sound like an emergency constipation case too me, rather than figuring out what to eliminate, I would go from scratch and eliminate all solid food except vegetables, fruits, fibers and then slowly add back meat, dairy, etc. A couple of days fasting, how bad can it be? Otherwise it could take you weeks to figure out what not to eat and your fissure will get bigger and bigger. Don't get me wrong, I love steaks and everything, that's what got me here in the first place, but right now I have to choose between food and excruciating pain, not really a choice.
One thing is for sure, I'll never again in my life strain to push out a solid stool, I'd rather go to ER so they figure it out. I curse the days not long ago when I was constipated and continued eating junk until I ripped my ass apart.
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Re: Fissure, Fistula & Coeliac Sufferer

Postby Kristy38 » 29 Apr 2013, 20:17

Hi bgd,
Well, I guess you could say I had kind of a "win" last night. I drank 2 sachets of Movicol, had some parrafin oil, dosed up on painkillers, had a valium, and covered my butt with the Diltiazem ointment. At 1am this morning, I opened my bowels, and the ointment did help ease the movement of the stool out, but am I in pain this morning? Far out, yes I am!! But at least the pressure in my rectum has gone for the time being. It's bloody painful to walk or sit this morning... and this is the main problem. It always takes me 8 - 10 hours for the pain to subside after a BM... and thats the thing that kills me as much as the pain of a BM. I just can't function, and there is no way I can even contemplate going back to work yet, and its been 6 months out of work already.
I am taking your food comments on board... I went out this morning and stocked up on fresh fruit, tinned fruit, yoghurt, and vegetables. Going to cook up a vegetable soup today, and I am going to go vegetarian, or just have a soft protein like steamed fish, if anything at all. I'm going to cut out carbs completely at the moment, and see how that helps things. I was eating rice as its gluten free, but I think that does me no favours either! I love food, I love to cook, and I know its going to be hard to cut out my favourite foods, but I'd rather that than continually going through the pain, as you said yourself!
I know what you mean about straining to push out a stool... I have been to the ER to get a manual evac under anaesthetic about 3 times now, and I have to tell you, I was ready to go back to the ER last night, especially as my bladder was starting to be affected.
I just wish that family understood the pain I am in, and have been for so long. They keep nagging me saying I am doing the wrong things, and I have to eat this and that... but they have no idea. I'm so glad that I have you guys to talk to, and get your ideas.
Also, I was researching Sea Buckthorn Oil last night... I saw it on Dr Oz's show, and apparently it really helps line the bowel, and coats the bowel to make it easier for the stool to slide out. Anyone had any experience with this, or other types of oils to help with BMs?
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