Hello...Ive just been diagnosed.

Well....I would like to first say hello. I was actually posting in the IBS section on another site for the last few months. Now I know I was in the wrong site. Here is the quick and dirty on who I am......Below was my intro to the IBS board, but I figured its alot easier to cut and past it here rather than retype it. (ya ya...im a lil lazy)

****I don't know were else to turn. Im new to this site and am not sure if this is the right forum or not, so plz forgive me if Im in the wrong spot.

I am a 38 year old male who now carries an emergency nap-sack and a port-a-potty in the back of his truck. Approximately 12 years ago, I do believe I had my first attack after eating at Pizza Hut. In a matter of 15 minutes, I had to have my friend stop his car 3 times as he rushed me home. Since then, its gotten worse over the years. I always feel bloated/nauseous almost all the time. I am constantly looking for washroom signs or places to hide "just in case" I used to love driving around with my friends skiing, scuba diving, golfing and just going out and having fun....now I cant even drive with my wife in the car. If I even start thinking that I have to go anywhere with anyone I instantly feel more ill and have to use the washroom. Which makes it sound like I have now become the owner of a phobia....oh joy. I gave up lying to my friends and family about why I cant make it to family functions or why I cant go golfing with my best friend.
I have had test after test, sample after sample, and finger after finger done over the last 10 years...most recently, I had a colonoscopy at the end of Nov/06 and everything came back fine. All the biopcies came back fine. I am suppose to be a perfectly healthy 38 year old male. Then why am I unable to control my bowels. I know I have trigger foods, which I try and stay away from, but it just seems to be getting worse.

about 7 years ago, I went for a year of having NO junk...all health foods....no take out, chocolate, pop, alcohol, even my cigars with no cheating. It was all vegies, fish, rice, boneless skinless chicken, vegie burgers and NO BREAD. I went from 200 lbs to 148 lbs in one year. The symptoms got a little better but still hung around. Was a great diet.

about 3 weeks ago, I started taking "DIGESTRIN" to see if that worked, but have now stopped until I get this weird stuff under control. Has anyone else tried DIGESTRIN?

**CAUTION...GETS A LITTLE GRAPHIC....SORRY**

Normally, my attacks are very quick to come on (have less than 1 minute to get to a facility) and my BM is extremely loose and oily. I never feel like I have had a good evacuation and always feel like there should be more. (even though I swear I saw my shoes shoot out once) about a month ago I had an attack while working out in the yard, well actually 4 attacks in about 1 1/2 hours. Since then things have gotten a little un-nerving. I am having almost uncontrolable BM's, with unbelievable gas, that first started out being "D" but then turned to a mucus and now for the last 2 1/2 weeks have turned to mucus with some blood. Needless to say, I have been freaked right out, but when I went to my family doc yesterday, he didnt look concerned at all....told me to take 50mg Dicetel 3x / day for 1 week, if that doesnt work bump it to 100mg 3x / day. He said that there is nothing left for him to do and if this doesnt work then I get the joy of getting scoped again.

So....PLEASE, PLEASE, PLEASE. I am 38 with a wife and a 20 month old baby girl. I do not want to pass this on to my beautifull baby. (physically or mentally) If anyone can tell me anything that will give me any sign of hope, I would be very greatful. I just dont know what else to do, Ive lost my zest and really would like it back.****

As the above was writen a month ago, a few things have changed. After the "Dicetel" never worked and my symptoms presisted, I got to the point were I was not going to take anymore. After 3 weeks of my doctor's reseptionist messing up my referrals to get in to see a specialist, I finaly said screw it. I went out of my way to make my symptoms as bad as I could, (ended up losing 25lbs in 3 wks) went up to the emergency hospital twice in one week and finally on the second visit the oncall doctor tracked down a surgeon, who was actually in the O.R. The surgeon came in and talked with me,(after he was done opperating) talked with me for about 5 minutes and booked me in for an emergency colonoscopy. So, finally, after 12 - 15 years of being told that its all in my head and given anti-depresants. I have now been diagnosed with Colitis. Apparently there is suppose to be different types but all I was told by the surgeon after the opperation was that I have moderate colitis from the rectum to the transverse colon. I was told to start taking a medicaion called "Asacol" immediately.

It may sound silly but it feels like a HUGE weight has been lifted off my shoulders. At least "NOW I KNOW" Im not crazy and it wasnt all in my head. Now the healing can begin. So please, if anyone has any insight, opinions, experiences or anything that might help. I would love to hear from you. 

I would also like any opinions on medications.  What is bad, what is good.  Ive been told by my doctor that if the Asacol does not work, they are going to go to Steroids (probably Pregnasone) and if that doesnt work they are going to bag me. **YIKES*a lil nervouse**

Thanks, talk to you soon.

HI and welcome to Healingwell! I'm sorry to hear how long and horrible your road here was but you are not alone. You are not crazy! Have a look through some threads and you will find yourself nodding in agreement and learning a whole lot. One thing to remember is that this disease is different for everyone and ends up being a lot of trial and error.

As for meds. Most of us are on asacol or colazal which are similar. Prednisone is what the docs like to do after that and you will find horror story after horror story about it. Many of them my own! But it is a love hate relationship many of us have with steroids. They do work for alot of people but it can be hard to get off of them, not for everyone, but for some. They also have horrible side effects. I am suprised your doc went straight for a bad after that...there are two more classes of meds to try...immunomodulators (immuran, 6mp, azatrhopine) and then Remicade which is usually the last stop before surgery. Surgery is an option for many though. If you want to learn more about what surgeries ther are try j-pouch.org...lots of good info.

I hope this isn't overwhelming you right now but I wanted to try to answer your questions the best I can.

Congrats on the baby! To ease your mind a bit the chances of passing UC down to children is low, under 10%.

This disease sucks and it can make you feel very alone. Just know we are here as a shoulder to lean on and a place to find personal stories and advice.

Hi

I can tell you I'm just starting to get better after having ALL THE SAME SYMPTOMS AS YOU! Hang in there. The asacol worked for me in as little as 6 weeks. Please if you're not taking fiber take it. I take straight psyllium which is a bulking agent without a laxative effect. The maker is NOW it's apple flavored power. In 3 days my stools became formed again.

I have a mild case of colitis and switched form asascol 2 years ago (went med free for a year) now on Colozal 4 a day. I tried doing it without medication and I had accidents everywhere I went! I've been on my new meds for 3 weeks and I'm confident I will make it to the toilet and more better, I'm not having the urgency. I'm 37. This just started for me 3 years ago after eating alfalfa sprouts that nearly killed me one night ( I didn't wash them and ate them raw on my salad, shame, shame) Stress made things worse for me.

You are not alone ever in this. I thought I was the only one until I posted here too. It will get better. Please try the fiber too!

Linda

Hey and Welcome! The first thing I want to tell you is there are alot of medications options that you can try before they "bag you." There are maintence meds (like asacol), steriods (pred), immune suppresents (imuran, 6mp) and then there is Remicade. Oh and don't forget all the rectal meds. Just wanted you to know there are lots of options out there before surgery.

Most importantly be dilligent about taking your meds! Alot of us, myself included, have gone into a flare b/c we stopped taking our meds. Keep us posted on how you are feeling.

WOW.....the feedback has been absolutely amazing here.  Thank you all for replying so quickly.  I have only been on my meds now for 3 days so Im still a little nervouse about all this, but the more replies I get the better Im starting to feel.  Im just really starting to miss taking my little daughter to the park and walking with my wife, but Im sure this will take a turn for the better soon.

Thanks again for all your support, my thoughts and best wishes are with all of you.

This is a freakin fantastic site.  Thank you KIM123 for telling me about it.

Everyone has covered most the bases I see but I just wanted to extend a welcome your way and to tell you that if you should have any questions or concerns, please don't hesitate to ask ok?

FosterDad, welcome! I am the mom of a 16 year old with UC. She got sick in September 2006 and was diagnosed in October 2006. We didn't even know what UC was before that. Even after the diagnoses we just assumed it would take 2-3 weeks for things to get back to normal. Reality check! Anyway, this is an amazing forum and incredible people. It does take time to understand the different drugs people are talking about. Ask lots of questions. Post on the good days and the bad days. Try to find the best possible GI you can. I think that has helped my daughter the most. (This forum has helped me the most!) Speak to your doctor about adding rectal meds before you start prednisone. There is also steroid rectal meds. By the way, I haven't found anything on this forum that has truly grossed me out. If anything it has made me more aware of what people are truly going through.

I hope you are feeling better soon.

Hi FosterDad,

I just wanted to welcome you to the forum. I was just diagnosed in March and this site has been a great resource for me.

Do you have ulcerative colitis or just colitis? Ulcerative colitis is a chronic disease, but if your doctor told you that you have colitis, it may not be a chronic thing (although it seems like you have had symptoms for a long time). I don't know much about colitis, but I know it is different than UC and it can be treated with Asacol. Have you had stool samples taken to rule out infections and parasites? Usually, doctors do this before diagnosing you with UC. What dose of Asacol are you taking? You can list your meds in your signature if you wish.

I take 400 mg Asacol, 12 pills a day. It has helped me a great deal. It took about a week for the Asacol to start working and a few weeks until I started seeing more major improvements in my symptoms. I'm still not in remission, but doing a ton better than I was a few months ago. It is supposed to reduce our risk of getting colon cancer as well. Rectal meds like Rowasa are also an option. They are suspension enemas (you keep them in all night) of the 5-ASA medication. I was really scared to use the Rowasa at first, but it's not as bad as it sounds and they help a lot of people here.

Hope you start feeling better soon.