Crohn's Disease & Ulcerative Colitis Support Group

I have never heard of those side effects from asacol and certainly didn't get them. I think is has been really helpful. have you started it yet? My symptoms are a little better, but I feel like crap because of the prednisone (I think, who knows!) I am going on the cortifoam ennemas now and am very hopeful that they will help. I had a colonoscopy a couple of weeks ago and the dr said it was just the lower part of my colon that was diseased so I am hopeful that they will help. I have been sick for about a month now.
two colonoscopy's in a week?! My God, that must have been miserable!!

if you are having a lot of bleeding or diarrhea, asacol probably will not do much for you as it needs to be in your system for many many hours to be absorbed properly, otherwise you will see full pills in the toilet..

also when your in a flare your body is going to manifest it outside and inside your body, which is why your getting rashes and whatnot.. when you are in remission it should get under control

as for prednisone, it will give you the acne you talk about as well as completely mess with your emotions.. its a nasty drug..

as for the sex issue.. when you are in remission i imagine it would not be an issue, but definitely need to use condoms 100% of the time because you cannot let any sort of bodily fluids get inside your rectum, colon, etc because you will have scar tissue and ulcerations etc that will become horribly infected and possibly trigger a flare.
not in remission, i would probably not recommend it as it would probably make things worse..

so yeah.. theres blow jobs etc.. or perhaps you could be the top? lol

if you are not getting anywhere with your GI, get a new one asap!! there are plenty of docs out there, your doc sounds a lot like my old GI who was "old school" and set in his ways.. my new GI is compassionate, willing to try new things, and informative.. this disease is bad enough on its own, if your doc is not on your side, get a new one.

Hey kyle--

if your doc is not willing to write you a letter regarding the medical condition that he is supposed to be treating you for- get a new one. immediately. that's absurd.

my doc wrote a letter for me to an airline to get a refund for a trip I couldn't take. i didn't even ask- she OFFERED. from now on I will hold every doctor to her standard.

side effects from prednisone are AWFUL- I'm sorry to hear you are going through that. I hope it gets better and that you are able to get off of the evilness soon!

I just went for a consultation on surgery-- for the j-pouch surgery you have the pouch formed on the inside of your body from the small intestine. they remove the rectum and attach the pouch made from the small intestine directly to the anus. i wouldn't think that this would affect the nerves (I know that you are supposed to retain control becuase the muscles are still there), but i'd be concerned since the rectum is removed, that there is no protection for that delicate pouch that they form in your body. Personally, if I get the surgery, that's not a risk I would want to take, but I'm also female and straight and after colonoscopies, rectal exams and all this fun stuff involving that area of my body I'm extremely and overwhelmingly self-conscious about that area anyhow. :) I'd just straight up ask your surgeon if you get a consult.

good luck.

Dear Kyle -
I agree with others who have written so far about your Doctor. I hope you'll be able to find another one soon.

If you are considering surgery, it might be helpful to visit the following site: http://www.jpouch.net/
This site might help give you more info on what muscles/parts of the anus are kept in tact following surgery.
This site was helpful for my hubby and I when he was just recently in the hospital with a flare up and when we were considering surgery. For now, my hubby is on Cyclosporine... today is just the 2nd day that he's been out of the hospital... so we are really hoping that it will work in controlling his UC.

About Asacol - I know my hubby was taking that for most of 2008 til July 2009. He did get lots of headaches while on that med. I don't think he has experienced the rashes that you have.

Prior to Asacol he was on Colazol for a few years... and I don't recall the side effects that he experienced with that med.

Best of luck ahead...
-Jen

hi :)First of all hats off for stepping forward and asking all the juicy sexy questions with UC because you know what you are not alone Im sure everyone with UC wonders these questions and may be timid or too shy to step forward. I'm 25 and I was diagnosed with severe UC at 12 and trust me going through teenage years alone are hard enough without the UC being the cherry on top. I too was way too embrassed to tell my dr, parents or even friends...how I mean how do you tell anyone 'hey i cant go to school cause im bleeding from my ass' and have someone really take you seriously or without giving you a weird look and then I felt self conscious. So I know how you feel and can answer all your questions so grab a drink and pull up a seat and lets dive on in. About the rashes, yes i get rashes mainly on my arms, face, back and sometimes stomach and sometimes bumpy but mostly more like a heat rash right before or during my flare ups along with tons of acne. For me my gastroenterologist knew of some cremes for me that soothe the rashes and prevented the spread of them. It was just a topical creme that wasnt oily but lasted pretty much all day, which was great when I was at school and really didnt have a scent which was even more of a plus....i didnt want to smell like diaper rash creme which just an fyi helps with that raw pain you may get from frequent stools or diarrhea...i usually wait unitl after I taken a hot bath at night then put some on and then shower in the morning and that helps soothe, comfort and heal. Ok on the the juicy stuff, yes you can still have anal sex. Now depending on if you are any flare ups or not, cause thats when it hurts more. But in my experience if your partner takes it slow and is patient and sometimes lube you'll be fine if you're having a good day and not having a bad flare up. Now after taking meds for 2 years my body stopped responding to treatment and I had severe UC and I was developing cancerous cells so at 15 years old my parents and I made a gutsy (hehehe) move to remove my large intestines and had a ileostomy for a year so my insides could heal and at 16 had a reversal and got a j-pouch which is made out of my small intestines. So, after having a ileostomy yes you can still have anal sex, i mean not right after surgery i was in alot of pain and it takes a long time to adjust and then its how do you find someone who expects you and loves you with that, but you can now its not the same, but to me it was better. I was more sensitive so it had a new sensation and it me it was weird but more pleasurable. Now thats just me others may have no sensation or feel already irritated enough with frequent stools and diarrhea to want to event try. Try me I didnt want to at first, I mean I had enough pain down there and didnt feel like adding to it. But, I found the right guy whos totally understanding with me that took it slow and allowed me to ease into it and it worked for me. The depression still happens for me, i try to think positive and tell myself well i could have colon cancer or how i am now (gutless) and i use humor, but still there are my gloomy days. I didnt have many supportive friends growing up the few that did stick around only did cause they felt sorry, to use me or cause they thought i was going to die. I was lucky enough to have supportive parents. The only thing I can say is you're going to have good days and bad days like everyone and when it comes to love there are def gonna be guys that dont understand or consider it drama or extra baggage but hang it there the right one will come around that does and doesnt see as a issue at all so just be patient he make be lost and asking for directions.

Hey, kwic, I'm sorry to hear you'r e in the UC/CD club, too, but welcome aboard!

Different meds work for different folks, so you may find the asacol is great for you & you may not. It worked fine for me for more than 10 years so I don't knock it. Then my disease moved higher in my colon & the asacol granules could not reach it there. Now I am taking pentasa, 4x/dy.

Go find the PDR (physicians desk reference) online and read about asacol. "Some" people have hair loss or other side effects from it--I think this is rather rare actually. There are always some people who cannot tolerate this or that drug no matter what their disease is---your doctor should not have said those things about the hair etc as though everyone can expect it.

As far as your skin manifestations go, my daughter has this--in her case it is called atopic dermatitis. She gets little red very itchy bumps on her arms, especially inside her elbows and knees, and they worsen greatly when sheis under stress. She has very good results from certain creams and lotions---Gold Bond Ultimate Healing Aloe is the best. The rashes are an autoimmune thing the same as CD is. No surprise you have both really.

Others have said the same thing about anal sex---you tend to get a rather sore anus from all the diarrhea and I can't engage imagine wanting to engage in that kind of activity down there! I sure wouldn't---I am a straight female, married 30+ yr, and even doing things "the usual way" is not something I feel like, when having a flare.

You have another concern, btw--regarding the anal sex thing. You are very likely to have not just a sore bum from D, but will likely have open sores in your rectum and farther up, either all the time or from time to time---it's what this disease does. You are not in a position to have other folks' body fluids going into those sores carrying their viruses & germs, whether those viruses are HIV, Hep C, or what. (No puns about "position" intended!)

Additionally, you are quite likely to wind up taking immunosuppressive drugs (prednisone tops the llist but there is also azathioprine, etc) either from time to time during a flare, or on a daily basis. You cannot afford to allow yourself exposure to other folks' body fluids such as what occurs during anal sex. The same is true of heterosexual sex; you have to watch out not just what you are doing (comfort) but most important, with whom you are doing it, if you are taking immunosuppressants!

For you, it's the number-of-partners thing---if you mess with many, you increase your chance of troubles exponentially. You know the deal---you are also having sex with everybody they ever had sex with, etc.,blah blah blah--but if you take immunosuppressants, it matters even more.

I first developed symptoms more than 20 yr ago, during a very stressful time on my life. And I have found that stress worsens things. In fact, I don't know anyone among my friends or acquaintances with a serious chronic or life threatening disease who didn't develop it during a period of high stress. Breast cancer, MS, CD, you name it.





I hope you find the right combination of meds that works for you!

Hello there Kyle, my name is Ari and I am 19 and I too spent about a week in the hospital after having the same sympotms as you. I was diagnosed with UC when I was 14. I don't get the rashed but I was diagnosed with mild eczema when i was in grade school and I always thought that's what the little itchy bumps were. I too always feel slightly under the weather in the morning and after i eat too much.

As for the diets go when I was first diagnosed I was on a strict no "ruffage" diet which was quite difficult because I love fruits and vegetable and nuts. But the skins and seeds and the inability to digest nuts made it hard to enjoy while i was in remission. Also I have never heard of the nicotine patch thing.

As for having anal sex after an ileostomy I'm sorry I cannot be of more help, I haven't had to resort to surgery which I am very thankful for. I'm sorry that jerk stopped talking to you because of something that is no one's fault, that was a harsh move on his part. I have been dating my boyfriend for 6 months now and I barely told him about my UC and what it's like about two months in to our relationship. Since then we have had anal sex twice and we were very cautious and he was very gentle with me and we made sure we took everything slowly and safely by using condoms and lots of lube. Because quite frankly with conditions like ours there is no such thing as too much. ;D

I hope this helps in any way. If you have any questions for me feel free to ask!

hi . i have had u .c since 1990. tried many diets and i find that bland ones work best 4 me . i eat potatos , rice , cereals with low sugar content ,,, i read in a book that too much sugar may irritate colitis .
i avoid fruits as they contain acid . also fizzy drinks and alcohol are an irritant . never been told this by a dr . but found out 4 myself!. my consultant in England was not that good .
im in Spain now and the consultat here is wonderful . i have alot more faith in him .

hes taking me off steroids and putting me on a tablet that i got to take every day. above all , i try not to get stressed as although that is not the cause ,,,,so they say , it certainly makes me worse .
i have used aloe vera before , its anti inflamatory.

sorry i have not helped much , i would like to add that i have been on Asacol and been ok on it to .
if i think of anything else i will write again , please take care .