My Butt Hurts!

:sign0144: So here I am, my first post here.
I found the site a few months ago. It's nice to know you're not alone.
I was diagnosed with Crohn's in 2002 at the ripe old age of 33. Having Crohn's with a 18 month old isn't a fun time! It took from February until July to get diagnosed, because I was hyper thyroid at the same time. 40 dropped pounds later, I had a colonoscopy that confirmed Crohn's. They put me on Sulfasalazine, and that cleared me up pretty well. I was on that until midway through my second pregnancy in 2004, when they switched me to Asacol for the last trimester and a year of breastfeeding. Didn't work quite as well as Sulfasalazine, but not too bad.
I had my first flare up (other than the original one) when my daughter was 18 months old. (First symptoms when 1st child was 18 months. First flare up when 2nd child was 18 months. They say that's too far from delivery to be pregnancy related, but it's awfully coincidental to me.) That flare up was controlled pretty quickly.

Fast forward to 2007. In February, I started having more flare up symptoms. Urgency, frequency, mucus in stool, bleeding - you know the drill I'm sure. It's now August, and I'm still having an awful time of it. Sticking with the sulfasalazine, they also put me in a small dose of prednisone - 20 mg, tapering down to 5 mg. The mesalamine enemas won't stay where they're supposed to stay, if you know what I mean. He also put me on Librax, an anti-spasm drug usually used for spastic colon. It also is used for anxiety. My doctor thinks my diarreah is caused by anxeity, because my symptoms are so bad, and nothing else is helping it. What he doesn't understand, is that I'm not anxious about anything. (Just when I'm in public with no bathroom in sight - HA!) He also sent me for another colonoscopy. That comfirmed that I had Crohn's. THANKS! I knew that the first time! I thought that the librax was actually helping a bit. I am now maintaining my weight, but the urgency and frequency are still there. No mucus - who cares.... At my last appointment, he switched my sulfasalazine to pentasa. and also put me on more prednisone, starting at 40mg and tapering down. I guess the pentasa is similar to the sulfa, but starts working higher in the intestines. The only problem with the pentasa, is that it has tiny thingys in it (for bile absorption maybe?) that are in my stool. These may be irritating my rectum, as it hasn't been feeling fun down there lately. I've heard from 2 people that imuran works for them. Maybe I'll check that out. I've heard nothing good about Remicade. It works for a while, but then quits before the next dose. Plus - the possible side effect of BLOOD CANCER just turns me off a bit. I really don't have room in my life for blood cancer this year. No thanks. I will also be getting some probiotics. I read nothing but good about those from this site.

The worst part of Crohn's for me is the urgency. That means no riding bikes to the park with the kids, no nature walks, basically no activities that don't have a bathroom nearby. We upgraded from our $4,000 camper to a $16,000 camper just for the potty (thought the air conditioner doesn't hurt either!!) I just can't make it 4 campsites over to the bath house. I have crapped my pants more times than I care to remember, and my daughter at 2 1/2 got in the habit of telling people "mommy poop unnupan", which means mommy pooped her underpants. Lucky for me, I have no embarrasment quotient. I can talk about poop, rectums, and enemas with anybody who will listen. Once your butt is in the air at the doctor's office - priim and proper is no longer a part of your life. Did you ever drive 10 hours to Virginia Beach with a Crohn's flare up?? Bring a kids potty in your minivan - TRUST me!!
As a school teacher, when you gotta go you gotta go! Luckily the bathroom is 5 feet from my classroom. Luckily, I have 1/2 hour classes 7 times a day, with a 5 minute break inbetween. I have only had to leave a class 4 times, and they didn't even notice. Several times though, I have lined a class up 2 or 3 minutes early and sent them down the hall in hopes that their teacher will meet them. It's worked pretty well so far. Sometimes I have to pretend I'm angry with someone's behavior, so I can just sit down with my arms folded, glaring look on my face and concentrate on not messing my undies. I wonder how other people work. Firefighter? Paramedic? "Oh, let me stop my CPR on you, I have to go poop." Waitress? "Hi, what can I get you guys for dinner? Oh, wait - I have to go poop."

My latest Crohn's "fun" is an anal fistula. I guess that's why I couldn't think of any other name for myself than "My Butt Hurts". It's terribly painful!!! Think of a hemmerhoid - but bigger. It's like sitting on a marble. My colorectal surgeon wants to do a fistulostomy to put in a permanent drain, which includes actually cutting through the rectum (which could lead to rectal incontinence - which I already seem to have some of. HELLO - who invented this awful disease?!?) My fistulas is draining on its own, and has been for 2 years, but now it's filling faster than it's draining. I'm on Metro and Cipro, which helped 2 years ago, but doesn't seem to be helping this time. Warm soaks in the tub help a tiny bit. Who has time for that with a 7 and 3 year old?

Now that I have written my first novel, and you just read it, I'd better see what the kids are doing..........

Hey - why don't they have a smiley face emoticon thingy running to the bathroom, or holding toilet paper or something?? They have one barfing. I suppose a diarreah one wouldn't be appropriate.

Hi MBH (pardon the abbreviation of your moniker, but everyone uses such long names).. Anyway, welcome to the forum... You seem to be keeping your sense of humor.. Good for you. Think you'll make a wonderful addition to the great folks here.
Also think you'll find lots of great folks here, and a wealth of wisdom and sharing, OK

Take care...

Hi MBH
Welcome to this forum.
I no where your coming from.
My butt hurts bad also I have 3 fistulaes.
I too have sitz bathes with epsom salts
Aer you on Remicade?
I am it helps for about 4 wks then I suffer
the last 4 wks.
So I know all to well how painful it can be.
They want to do surgery on me again you,no
the stoma thing but Im opting out on that for now.
Got any more questions just fire away.
Ruth also knows this subject all to well.
She pops in alot or just pm her.
Goodluck talk to you later
TAMMY

Hello MBH!!

Just stopped by and read your novel (Just kidding!) :ylol2:

We need more people in here with a sense of humor like yours!
I wanted to say welcome to the forum...where you can joke about poop, and toilets, and what is the best toilet tissue to buy if you want to.
In other words...you're among friends here!
Somehow we all ended up in the same boat! :confused2:

Any questions...fire away!
Jump into the conversations...relax, make yourself comfortable,
and hopefully have some light-hearted moments.

Welcoming hugs~Nancy

Hello and welcome! I'm new here too. I can so relate to your message, glad you can still see the funny side of things.

Welcome. That's good your job situation allows you to deal with the unpredictability of this disease. I know some people get D no matter how much they eat. But I try to eat as little as possible during the day and then eat a larger meal when I'm home and can get to the bathroom. Some people can't do this, though, because they need to eat for the energy. My GI prescribed me some Questran which is not fail-proof but has lessened the urgency.

That's great about the camper with a bathroom. Sometimes I'd like to have something like that just for driving around town. Never know when you'll need it!

Hi!
Im kind of newish! diagnosed and been chatting here for 3 months!
just like to say im on codiene phosphate for helping me not rush off to the loo and it works wonders. and my mum takes it too but her CD is much worse than mine.
but no one here seems to take codiene or havent mentioned it.
i just find it strange as everyone i know whom has it, takes it.
but then im in the good old united kingdom so maybe they dont do it in america?
i dont know.
anyway just wanted to wish you good luck on coping and that i love reading peoples novels on their crohns so keep writing hehe
vicky

Narcotics are strictly controlled in the U.S. as we have a fairly large illegal drug problem. Due to the addictive nature of Codeine I am guessing any doctor prescribing Codeine for loose stool would likely get a visit from the authorities.

Many narcotics and other potentially mind altering substances are sold on the street for illegal use so they avoid using them for anything other than a strong pain reliever.

I was surprised they gave me oxycodene for my post surgical pain as this is a popular street drug. He only gave me enough to get me through the initial pain and I did not have one more pill than I absolutely needed. Worked really well, and when I had to take two I had to sit down for twenty minutes I was so out of it. I also had constipation from it which was not what I needed at that time.

D Bergy

Hi and welcome, sorry to hear you're having a rough time of it lately. I too had anal fistulae (multiple) and know exactly where you are coming from. I had mine laid open and took several courses of antibiotics all with no success, what I will say is though, none of the surgeries made me incontinent. I eventually went for the temporary ileostomy route in order to fully rest my rectum. Its worked wonders, I now have fully healed fistulae, something I thought unimaginable 12 months ago. I hope you have better luck with yours, if you need to chat, I'm here quite often in the background.


Vikkytoria - I too come from the UK and have also used codeine phosphate for the big D and also swear by it its fantastic.


Ruth

This is just my opinion but if I was having eruptions like this I would try fish or krill oil to possibly help heal them and prevent future problems.

It is a safe substance and nothing is lost if it does not work. It would likely take a few weeks before any improvement is noticed. Other anti-oxidants may also help such as Green Tea.

Since you are taking anti-biotics a pro-biotic might be a good idea also.

Just my opinion, I am not a health care provider.

Good Luck

D Bergy

Hi My Butt Hurts (I decided to go for the full name )!

Thank you for sharing your story with us all. I hope it helped to share it, and to see there are others who have or are going through the exact same thing.

Your sense of humour is also a great thing to have when going through something like Crohn's Disease. I am sure your students appreciate it also.

There are rewards and risks with all medications, including imuran. Just because you have heard certain good things about one drug and bad things about another drug does not mean neither of them have additional possible benefits or risks with them. Make sure you are well aware of all the possibilities that can occur with any drug you think about switching to.

Hope to see you around and feel free to ask (or share) anything!

Hi MBH,

Love the epistle! Glad you have great humour too - as they say you dont have to be nuts to be here but it helps!

On the arrest scenario - lets just say I try and avoid it if my guts are playing up - very easy to sound like a set of bagpipes whilst doing compressions ;-)

I am on Imuran and Remicade and figure the risks in relation to cancer on it are less than would be if my Crohn's wasnt under control. Think it also depends on what quality of life you have when not taking it too. I was VERY anti the Imuran at the start because it scared me witless but as I realised how bad my Crohn's was it was a real bombshell and moreso when the Imuran didnt kick in to the extent the GI team and I thought it would. When they mentioned the Remicade I just said yes because I had accepted the fact my Crohns was pretty severe and desperately needed some stability. I have had my first 3 infusions and felt some changes after the second one. The third infusion has given me immense relief and my GI wants me to continue it for another year every 8wks then review again.

I have to say MBH its the first time in twenty years I have had any level of relief on several fronts and actually feel like my old self again. My quality of life has improved vastly and I am planning to do lots more things too. Think that says it all - apart from I just take each day as it comes and if I need to rest I do and dont beat myself up over it.


Welcome, looking forward to seeing you post more.

Hey again MBH.. U know, if u simply went with 'Hertz', didn't their ads use to say 'we are number 2, so we try harder'??? somehow, it seems so appropo, or is it appropoo

Anyway, just some after thoughts.. like, the codiene preps that our UK members talk about... codiene phosphate? not sure if it's available in north america, but codiene is in a number of available drugs.. like tylenol 3. That's commonly prescribed here by docs, hospitals, etc.. The downside? codeine causes constipation in lots of folks, so it can be both a curse and a blesssing at same time

I haven't had any fistulas (yet)... thought one was developing, but lucked out. I've had some nasty haemmoroids (sp?), painful, but more a nuisance & complication Vs the total nastiness of a fistula. Now, don't try this at home, and you didn't hear it from me, BUTT (Ok, but) someone once told me that, after suffering some 'VERY' painful haemeroids (again, sp?) AFTER a pregnancy, they took matters in their own hands... and grabbing a tube of OTC stuff used on infants for teething pains, dosed their backside in it liberally... giving them short term relief. Now, it wasn't me, I never actually witnessed the application... the person relaying the info wasnt' the actual person who purportedly did it, and it was told during some heavy 'drinking' at a party... so it could be totally just an 'urban' legend, and VERY dangerous to boot.. BUTT (again with the 'but') IF I were in desparate agony, and I had children floating around the house who were in the 'teething' age category, I might be tempted to try it... considering its' supposedly safe enuff to give to kids.
Orally even. If it did work, and it didn't cause any other ill effects, like infection, I guess only real concerns I'd have would be other folks finding out about it, AND the possibility that one could become addicted to it... and need a fix every 1/2 hr..

Hmm, was I always this crazy, or is it a side effect of IBD? Well, you be the judge

Thanks everyone for your welcoming comments!
Kev - did you really have anything to say, or are you just trying to prove that you are as funny as I am?? Just kidding - your last post was hilarious!!
About the painful fistula - it's now getting hard on the edges, making it even more uncomfortable to sit, and worse to stand. I guess standing is putting more pressure on it.
Long ago before my Crohns (ahhhh......memories....) I had a hemorrhoid (correct spelling, Kev), and none of the 5 different OTC products helped it. They acted like an irritant, actually. Same with the fistula - nothing topical seems to help much. The calmoseptine is cooling, but that's better for a "diaper rash" type of sore. Lidocaine numbs like dental novocaine, but only briefly. HAPPILY - 3 weeks after starting Pentasa instead of sulfasalazine, my belly/diarrhea/frequency is 80% better. That's a LOT considering I was going up to 15 times a day in May. I now have 20 seconds to get to the potty before I crap my pants instead of 5 seconds. THAT'S a big deal!!

Now HERE'S the kicker.......... I read one of Ruthymg's links from her doctor's article about fistulas. It said that Sulfasalazine was a good treatment for them (just taken off of it 4 weeks ago, when my then dormant fistula started acting up) and someone with a perianal fistula should not be placed on steroids (which I was). Right now, I'm soaking in the tub (well, not RIGHT now - I'm typing), and actually pushing on the fistula to help drainage. THAT'S apicture you do NOT want to imagine!! Me like a turtle on my back, leg on the toilet seat for leverage, mirror in one hand, toilet tissue in the other hand to soak up the puss, I must have a third hand somewhere, becuase one hand is pressing on the fistula.................

Here's my final comment - which I say a LOT -
"I'd rather be fat'n'happy than skinny with Crohns!"

Hey, I always have something to say... just never anything really worthwhile. What do you expect for nothing?

Seriously, for a moment. the soaking the hemm's in oragel, anbesol (whichever) she did numbed them enuff that she was able to push them back up inside, bringing her some much needed relief. Possibly might numb your fistula enuff so that pressing on it as you described may be a less painfull, yet equally embarrassing, experience. OK?

Oh, BTW... hemmorrhoid is the correct US spelling, but British dictionaries spell it with an 'a' in there someplace.. can never recall whether it preceeds or follows the e...

I just read your first post.
I have been living with two fistulas and have used some of the same techniques you explained in one of your later posts.
I had Setons placed in my fistulas about 8 months ago along with antibiotics. These are like very thin elastics sewn in at the rectal wall and run through to the opening. The surgery was done under general anesthesia and I was in and out of the hospital in 5 hours with very little pain or discomfort after the fact.
They stick out a little bit and help to keep any minor drainage flowing before it becomes a puss filled sore. This has worked very well for me I no longer have to worry about leakage and can even wear light colored pants and shorts.
Just a side note I also had an operation many years ago to "fix the problem", I had what is call lay open surgery, they carve a cone shape from the outside of my cheek to the inside where the fistula originated. I was in the hospital for 5 days and off work for a couple of weeks with lots of pain. It did seem to work for a long time 20 years or so. The fistulas came back in the same place by the way.

welcome MBH, nice to meet you.

how are you feeling now?

(LOLZ)

JED!!!!!!
Thread bumper!!!!

and PM box filler

i've stopped singing the bottles of beer on the wall song to you in there. i'll be good now.

have a good sleep. glad to hear your felling better

Hi

Hi MBH,

I can certainly relate to the fact that having a young one does not make having this disease any more enjoyable, but it sure is nice to see a familar face and having someone who will love you unconditionally during these times of sure uncertainty.

Keep doing what you are doing and stay strong and upbeat. It certainly seems easier for me to say that than it is for me do that. I would rather help others than help myself.

In a way it might seem selfish, if a can bring a smile or some comfort to anyone other then myself than i will feel happy as well. That is my cure for happiness.

Be well
Ray:smile:

HI MBH and Everyone

I have Crohns for about 4 years now. the worst was when it originally flared up.
I had asacol, pentasa, and the best and most effective entocort.
I can advise pentasa on regular basis and entocort when its flared up.
but maybe im still a newbie and havent seen the bad parts of it yet. I've been studying for 2 months on a chair everyday and riding my motorcycle to school.
recently my butt hurts too! the same way you explained it. my butt hurts a bit when i pee. Im having diarrhea every now and then but not consistently. do you suggest i take another colonoscopy(i had one last year) ? do i need to do anything?
will it get worst?):
any one has any suggestions.

thanks
Amirjazz

Amir,

I'm afraid you probably won't get many replies here. Would you like to start a thread of your own?

I myself do not have crohns but my boyfriend does. Although you obviously cannot drink alcohol in work, he finds it great to have a bottle/can of cider before he goes to bed as it makes your bowel sluggish and you won't have to go to the bathroom as much at night time! His doctor also said it was fine to do.

In relation to the sore bum, he found powders are the best rather than creams. Hope this helps!

Hi,

Over the years I have found that Omega 3 fatty acid supplement can and does reduce my "pain in the ass" especially the burning, not sure why just what I have learned that worked.

Yeldarb

Me like a turtle on my back, leg on the toilet seat for leverage, mirror in one hand, toilet tissue in the other hand to soak up the puss, I must have a third hand somewhere, becuase one hand is pressing on the fistula.................

That sounds so much like me..made me laugh out loud literally.
These fistulas aren't very fun. I have 4 now, a little family of them on my butt cheek. I am tapering off prednisone now and am on Imuran as well. A few courses of Cipro and Flagyl too. Nothing seems to help. I wonder where all this puss and blood comes from, its never ending!! My GI gave me info on Remicade and I have done the pre-bloodwork for it. That is probably my next step.
Can i also note, how uncomfortable it is to wear skirts and dresses with these fistulas!! I wear panty liners but it sometimes comes through, I have been at work and felt it oozing down my leg...gross.