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Hi everyone.  I am a 30yo gay male and I have been diagnosed with UC and Rhumetoid Arthritis since sept 2008 and I have NOT been in remission ever since.  I am told that RA and UC are a common thing to have together.

I have been off and on prednisone for almost a year now (and has gained 45 pounds because of it), taken Lliald, Asacol, Rowasa, Colocort, Imuran... but nothing seems to help.  I have HIV as well so other drugs like Remicade are not recommended because I need a strong immune system and remicade, like prednisone lowers your immune system.

On top of that, I have a CMV infection in my colon that I am currently on chemotherapy for.

(The HIV RA and UC were detected both in Sept 2008.  The CMV infection was detected June 2009).

My main question for everyone is...  How do you guys deal with the pain?  I have a lot of pain in my abdomen area and rectum.  The rectum pain, which usual occurs after and during a bowel movement is the worst because that can last for an hour or two. 

I cry sometimes because the pain is so much.  My doctor has given me 5mg of percocet to help along with Lidocain 5% cream, but that stuff doesn't seem to help with the rectum pain.  The abdomen pain yes... but not the other thing. 

I am embarrassed to even discuss this with this forum, but I need relief from this.  I have also tried warm baths, heating pads...

To be honest, I wish they made a percocet enema or something.  This pain is too much.

Can someone please shed a little relief on this for me?  Are there anything out that that just NUMBS that area completely.    

 Reply posted for anthonygutz.

Anthonyguyz,  That would be great having your email.  I don't know anyone else who has this disease.  It would be nice to have someone to talk to when I am feeling like this takes over me plus, we can let each other know if we ever find something that takes the pain away.

 Reply posted for Amly228.

Hi, sorry about the protitis.  It must be tough to live with.  Yeah, I completely understand witht he recal pain.  No ointment, cream or even Lidocain helps.  Lialda didnt really help either. 

I am not a crier, but I have been living with pain for a year now, and with exception of one week in June, I have always been in pain; pain that is unbearable that at times, I have briefly thought about dying.  But, I just think about how kids, kids that are so young, and how they deal with it.  If they can find the strength, then I can too.  I cannot imagine how a young child can deal with this pain or understand it.

The only thing that does work for me is percocet, but it makes me drowsy, so if I take it, then I have to block out 2 hours of my day to make sure I don't have anything important to do.  But even percocet doesn't competely take the pain away.  one of my docs recommended I go up in dosage.  I am on the lowest dosage, 5mgs, and refuse to go any higher.  That can make addiction that much possible.

If you ever find a remedy for rectal pain, please share that with me. I can give you my email address if you like. I've tried Lidocain 5% ointment, desitin, prep H wipes, prep H creams, prep H gels, a product called Monkey butt... and others.  I said it before, but I wish they made a pain killer that is a suppository that goes straight to the source.   I also have BAD abdominal pain, but the pain meds takes care of that.

Thanks,                                                      

 Reply posted for anthonygutz.

Hi, I was diagnosed with proctitis in May 2009.  I had really bad rectum pain which wouldn't go away with any of the rectal suppositories.  They put me on Lialda and that seemed to work for a while but, the pain never went fully away it was just bearable.  The pain has come back and I am looking how to take the pain away.  I did have surgery in June and the Hydrocodone seemed to take the pain away.  However, I think that is addictive so I am not sure that is a root you want to go.  But if you need a quick fix that seems to work.  I have tried Tylenol and that doesn't do anything.

 Reply posted for anthonygutz.

Hi - sorry to hear you're having such a hard time.  I know all about the butt pain - I use a cream called Calmoseptine - it's not really a medicated thing, but is full of peppermint (so something) and is immediately soothing.  Acts as a barrier too, which is good when you have to 'go' frequently.  I'm from Australia and you buy it from the local Chemist - but I think you can get it in the US too - here's a web link.  Try this- I'm sure you'll get some relief.  Good luck.

http://calmoseptineointment.com/

 Reply posted for anthonygutz.

Have you tried sitting on an inflated tube.  They give them to pregnant women after they give birth, that is really good because you are not actually sitting on the area.  I was using Lidazone, and now Analapram HC, both are internal, that provides relief from pain. 

 Reply posted for JG71.

Hi,

Yikes about the Colonoscopy.  I had one in September of last year and another one in May of this year.  I don't think I have any fissures.... but they did denote I have Perirectal tenderness, whatever that means.

The percocet, I know is addictive.  I see it all the time on T.V about how people get addicted without even knowing it.  My doctor is not concerned at this point as I am on the lowest dosage and don't take it all the time...but i know how that stuff can sneak up on people.

My doctor was concerned at the very beginning about prescribing the percocet because, as you said, can make me constipated.  I WISH that was the case!  I am always in the restroom and wish it would cause some constipation, but it doesn't.

You mentioned .02% nitroglycerin cream.  What is it?  I mean, I know its a cream, but does it numb the area down there or soothe it?

Thanks for getting back to me.  I am sitting on two heating pads right now trying to get some relief.  This is such an embarrasing disease I tell ya!

Good Luck Tonight (with the prepping) and good luck tomorrow with the procedure.

 Reply posted for anthonygutz.

Hi Anthony,

     I get a lot of rectal pain, actually that is where my Crohn's is mainly.  I am in the 20% group that get rectal strictures (a narrowing of the anal canal and retcum due to scar tissue over years of trauma).  I have to go every two years or so to have a rectal dialion and I am scheduled to have one tomorrow along with a colonoscopy.  Yes, I am "prepping" today :o(

You should have the docs take a look in there, make sure you don't have an infection, a stricture or fissures.  Fissures can be very, very painful and unfortunately they open up each time you go to the bathroom, that is why they take forever to heal.  Maybe a low residue diet for a while along with stool softeners will help you.  I don't know if they told you, but Percocet is a strong narcotic, and it isn't only addicting after a period of time, but it makes you constipated too, which will increase your issues.  If you are taking lots of Percocet to alleviate your pain, YOU HAVE to take the stool softeners.  (Unless you have constant diarrhea obviously).

My doc gave me some .02% nitroglycerin cream, ask your doc about it, see what he/she says.

Good luck,

JG71

 Reply posted for marzipan.

Yeah, I have tried heat and ice.  It works, but after like after 30 minutes and by that time, the percocet is kicking in as well.  The percocet and heat just takes the "edge" off I guess and makes the pain bareable.

I guess, like most people, I am looking for something more immediate.

I am just growing tired of the pain. 

 Reply posted for anthonygutz.

Hi, I'm not a man but I wanted to offer some advice anyway.....

You've tried heat, what about trying ice packs?