baffled newbie - can't get meds / getting the runs!

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baffled newbie - can't get meds / getting the runs!

Postby tigerbutt » 23 Jul 2014, 19:38

Hi all,

I’ve been lurking for a few weeks but thought I should finally emerge and introduce myself, and most importantly say THANK YOU! I almost cried when I discovered this forum. I have gotten so many good tips about diet and softeners from you, and it helps knowing there are others with AF! I apologize in advance for the length of this post! I just figure I should get it all out there:

My AF story so far: I was diagnosed with an AF after an exciting episode of diarrhea following antibiotics for a nasty sinus infection. No actual pain during the diarrhea episode, but I had pain the next day, during what seemed to be a regular BM, and I had enough blood that I looked like I was on my period! (Sorry for the TMI!). I went straight to the Student Health Clinic (I’m a grad student), where the GP diagnosed a vaginal-side fissure and recommended sitz baths, high fiber, and lots of water, as well as Preperation H (I stopped the Prep-H early on—now I just pre-lube with Vaseline and use a touch of coconut oil 1-2x a day before a walk or if it’s feeling really dry). The next day was the worst I have had so far, with pain a 4-5 during my BM and lingering about 30 minutes after. After a few days, this diminished and even disappeared…but a week later, I foolishly drank 2 beers out on a first date with almost no water for 3-4 hours (I don’t do that anymore!!), and the hard stool retore me, though the pain and blood weren’t as bad that time. Again “healed” after a few days, and had almost 2 full weeks without pain, and then retore again, pain around 2 this time, and for reasons I couldn’t tell (I had been very good with diet since the first retear). This cycle has continued since, even though I have been using Colace 100mg 3x/day for the past 10 weeks (has kept things quite soft so far, even though I know some folks have had more luck with Miralax), and even though I have been on top of my diet for about 7-8 weeks with no more alcohol, past, bread, meat other than occasional fish, and enough water to make me pee more than hourly. It seems sometimes I don’t get it all “out” during a BM and the next time, that tiny 2-3cm piece it hard and tears…I’ve had some luck the last few weeks waiting on the toilet another minute or two and sometimes the rest comes, but I’m unsure if it’ll happen again. I don’t seem to have the bad spasms people talk about on the forum other than an occasional twitch, sometimes with a half-second of light pain, once or twice a day if at all, but I do have that “softball” feeling around the tailbone when I lie down, so I think that area must be tensing up even if I don’t feel the spasms actively.

In terms of treatment, I’m at a loss. I wanted to try either nifedipine, diltiazem, or nitroglycerin after reading about them on this forum, and researching them online—though I know my pain isn’t nearly as bad as many people’s on this forum, since I keep retearing, I feel it’s necessary at this point. I got a CRS appointment after reading about how they are really better on this forum, and the anticipated day came…and went with a lot of disappointment. The CRS started talking surgery before he even examined me, and let me do very little talking. After the exam/anoscopy, he kept talking only surgery, said my pain is worse than I think it is (??), said he doesn’t prescribe any of the medicines because he thinks they aren’t as effective as surgery (!!). I should have been more adamant about it with him, but I was so overwhelmed and surprised…I really felt as though he steam-rolled me. So, I reported this back to my GP at the Student Clinic, who was equally surprised by the surgey talk and agreed that at this point I should try one of the medicine creams, but who doesn’t feel comfortable prescribing them himself because he never has before and is unsure of dosage/duration. So, he set up a GI appointment for a second opinion, which will be Aug 4. I’m keeping my fingers crossed that finally the GI Dr will be willing to prescribe one of them! I’m particularly adamant about this now, because my current pain-free streak of 7 days began the day of my CRS anoscopy, during which he used nitro/liodicaine for the procedure, which I’m sure must have had a positive effect.

So, question 1: Is there some magic secret password for getting the prescription ointments?? I’m so baffled as to why I can’t get them, even though all my research indicates they are common first-step treatments from a CRS after just diet/baths have failed.

Question 2: My BMs have pretty much been soft and like clockwork since I mastered the AF diet 7-8 weeks ago. Then, last week, I got food poisoning and had diarrhea one night. The next day, my BMs were back to normal, and stayed that way another 3 days or so. But then, including today, I have had 3 days where my morning BM has been the usual soft-but-formed niceness, but my 5pm BM has been diarrhea. I’ve changed nothing in my diet and actually have been eating pretty much the same thing all week, foods that have always given me magic soft-but-formed BMs up to now. Given that the morning BM is fine, I don’t think this is latent food poisoning side effect anymore. The only thing I can think of is that my birth control might be messing with things. It’s been giving my spotting the last 2 months and almost non-existent periods. My gynecologist didn’t detect anything wrong with me but said I might need a new pill. If my pill isn’t as effective any more, could this be messing with my BM #2, considering that I take the pill around dinner time, and so perhaps BM #2 the next day is affected by it? I’m terrified to try a new pill because I don’t want the change of hormones to constipate me, but the diarrhea obviously has to stop. It hasn’t aggravated my *hopefully healing* fissures yet, but I feel like I’m pushing my luck after 3 days of this…So can BC which might be losing its effectiveness (been on it 4 years) be causing diarrhea once a day? I don't even know what to eat for dinner now, since BRAT foods can be constipating for AF sufferers, and my AF dinner food has been giving me diarrhea!

I’m SO sorry for being so length, and again, THANK YOU for existing and posting! I would be lost without you!!!
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Re: baffled newbie - can't get meds / getting the runs!

Postby Apes » 23 Jul 2014, 21:20

Welcome to the club nobody wants to be a part of. That CRS SOUNDS. Like an idiot. He will not prescribe the creams yet he uses them for his examination??? Get rid of him, there other ways to be treated before surgery. I'm sure another specialist will be more understanding and tKe things one step at a time.
As for the afternoon diarrhea that's a tough one. Every one reacts differently to foods and softeners and finding the right balance is tough. Things can change from week to week. I would try to tweak one thing so if there is a change you will know what from. Perhaps increase your fiber to help form the stool. I wish the best.
Fissure 2/13/14 from Colonoscopy
Nitro no help
Nifedipine no help
Botox 5/5/2014 work in progress
HEALED 10/2014
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Re: baffled newbie - can't get meds / getting the runs!

Postby Roidsfizzman » 23 Jul 2014, 22:04

Hi Tigerbutt,

I had the same experience with the first CRS that I went to as all the guy wanted to do was surgery. I went to another CRS and she was excellent as she tried all other measures before surgery. I did end up doing LIS about 12 weeks ago. What city do you live in as someone on the board may know a good CRS? There is also a post on the board that gives the best CRS in each area rated by their peers. If you go online, you can also cross check the comments about the doctor.

Have you tried MiraLax? When I used Colace, I got stool textures that were across the board and it was very easy to get diarrhea . If you have not tried MiraLax, you need to give it a go to see if it will solve your problem.

I like your name.
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Re: baffled newbie - can't get meds / getting the runs!

Postby tigerbutt2 » 28 Jul 2014, 12:41

Thanks for the responses! Sorry for the delayed reply--I somehow broke my original account messing with the graphic options, so I just made this account with a different email address (I was loading a blank page upon logging in before). Jsingh, I got an email noticed that you sent me a message but I haven't been able to read it because of said log-in problems, so I'm sorry I haven't replied!

Apes, yes, I have another specialist in line (Aug 4)! I was referred to a GI doctor this time, because my GP thought they would be less likely to recommend surgery, but if it doesn't work out, I will ask for a different CRS. And Roidsfizzman, thanks for the suggestions. I went ahead and started Miralax about 5 days ago. I'm easing into it pretty slowly since I was already having some lose issues but it seems to have kicked in and be helping. I started with just 1.5 tsp. each morning and evening the first three days, and now I've increased it to 2tsp each time, or a 2/3 cap total for the day. I think since I've started to see a difference I'll drop my middle/lunch Colace starting today, and then after seeing how that goes for a while, drop the morning one too. And in the mean time I'm keeping my fingers crossed because I'm on my 12th day without BM pain so far...hoping I'm making some progress this time!
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Re: baffled newbie - can't get meds / getting the runs!

Postby Sakura1 » 29 Jul 2014, 12:13

Hi tigerbutt
Good to hear you have had good days with no pain.
I kept getting given steroid creams that were no help to me until I went for unrelated surgery and had a meltdown on the surgeon as I could barely sit up in the hospital bed due to the fissure pain. She prescribed Rectogesic (GTN) and this helped me a lot. After that, my gp was more than happy to prescribe it but needed to look up what the hospital had prescribed to check dosage etc, so clearly it wasn't something she routinely prescribed for fissures. Other people have had this cream prescribed much sooner into their treatment so it seems a bit hit and miss.

I used lactulose for months and had trouble controlling my bm size and texture. Some days bm would be quite firm, others it I would have the runs.
I finally changed myself over to Laxido after recommendations on here and found this to be much more dependable and I get very little to no pain when having a bm now. However, I cannot take a full sachet as I will get a very "enthusiastic" bowel movement which can be painful.
I also noticed that I would get a bad tummy if I took the sachet all in one go. After a bit of experimentation, I found that taking 1/3rd sachet in the morning, then 1/3rd sachet in the early evening works wonders.

Miralax seems to be working for you, and you are getting the hang of adjusting the doses.

Best of luck at the specialist on Aug 4th and be firm but fair about what you expect. Don't be railroaded into something you don't want :)
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Re: baffled newbie - can't get meds / getting the runs!

Postby Sakura1 » 29 Jul 2014, 12:18

Also thought it worth adding - my dietician said that eating too much dairy with stool softeners can cause the runs. I changed over to Lacto free milk for breakfast and have skimmed milk in my cuppa. If I have semi skimmed or full fat milk then it can go straight through and things get quite uncomfortable.

This may be unrelated and a leftover effect of the chemotherapy I had (causes chaos with your system), but thought it worth mentioning to you :)
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Re: baffled newbie - can't get meds / getting the runs!

Postby tigerbutt2 » 29 Jul 2014, 18:57

Thanks Sakura1 (I like your name by the way)! I think the ingredient in Laxido and Miralax (or rather the generic I'm using, SmoothLax) are the same (from what I can tell Macrogol is another name for polyethylene glycol?) so I'm glad to hear that it's working for you! I'm currently on the same dosage and timing as you (day 2 at that dose) and dropped my lunch colace yesterday with no problems. Consistency seems much better already! And thanks for the diary suggestion too. I'm a sugary cereal fiend usually, but that was one of the first things I dropped when I got the fissure diagnosis. Now the only dairy I'm eating is Greek yogurt. But that's good to know in case I experiment more in the future!
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Re: baffled newbie - can't get meds / getting the runs!

Postby tigerbutt2 » 11 Aug 2014, 11:36

Well, my GI appointment last week went well, and I got the prescription for nitro 0.2%! Finally! I asked her if I should start using it right away or not, since I was in the middle of a pain-free BM streak, and she recommended to get the scrip but wait to use it until if/when the pain came back, and then twice a day for a full 6 weeks. Lo and behold, this morning, I felt that old familiar stab, even though the BM was a great consistency (just a hard tip I guess--and darn, it had been almost 4 weeks without pain too!). It wasn't a terrible pain, maybe a 2 and just at the beginning, and a tiny hint of blood after, but I figure I should start using the nitro.

I'm not sure I did it right, however. I planned to insert it, and I put a very light coating of vaseline on my finger and my outer anus first thinking that would make things smoother (going to get fingers cots later today). I then put a slightly less than pea-sized amount on my finger ready to insert but--that puppy was closed up for business. This surprised me because when I do the same with vaseline before a BM it's usually pretty relaxed and I can push a bit up there, including this morning. I'm guessing the BM pain I felt this morning made things tighten way up after the BM? So, I'm not sure what to do. Do I just apply externally until things loosen up? And do you think pre-lubing with vaseline decreased the effectiveness of the nitro? I'm wondering if it's actually directly touching my skin down there. I haven't had any side effects at this point, but I didn't have any when they used the nitro during my exam either, so I don't think that's a good indicator for me to tell if I got it on right or not.
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Re: baffled newbie - can't get meds / getting the runs!

Postby msimon » 15 Aug 2014, 02:47

Hi Tigerbutt2,

So sorry to hear of your retear.The nitro should help, although it can take some time. 6-8 weeks of consistent use they say. I know what you mean by 'closed for business' as I have the same problem. Apparently this stuff is highly absorptive and you need only to apply it externally. That's great that you haven't had any side effects as Nitro is known to cause bad headaches. Prelubing may decrease the effectiveness but the Nitro is probably in a vaseline base so unless you are using a whole of vaseline I wouldn't worry. you may want to prelube with the Nitro? Did things feel more relaxed after using it? Nitro is really fast, like 10 minutes until you should for sure feel a difference.
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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