Discussions that mention asacol

Bowel Disorders board


I just joined these boards after reading quite a few posts.
In 1997 or '98 (I forgot) I started having some blood in my stool and I went to a GI doctor for an exam. He gave me a sigmoidoscopy that day without a cleanout and even though he only got up about 15 cm he said that there was some inflamation on my bowel. He gave me some meds that weren't strong enough and scheduled me for a colonoscopy. I wimped out FOUR consecutive times (after prepping the night before ) over a period of months and decided to switch doctors.
I started to go to his partner and HE gave me a sigmoidoscopy (he got up around 30 cm high or so) and I had BEGGED him to withdraw the scope.
At that time he diagnosed me with "Distal Ulcerative Colitis " and put me on ASACOL (400mg 4 tabs 3 times daily) AND ROWASA medicinal enemas (medicine in enema form that you squirt into your colon at night and let the medicine coat the walls...anti inflamatory). During the first several years it seemed like my disease was managable and my distended stomach had gone away and the bleeding was intermittent...BUT he still wasn't able to get me in to have a full colonoscopy.

I have had the following symptoms...bloody lower caliber stools(very thin or shapeless)...some distention of my tummy...etc.
Well I am also anemic and he wants me to take iron supplements).
BUT....sporadically within the last few months my symptoms have gotten worse and I am back on the ASACOL ..with Rowasa (I had gone off of it for over a year without telling him yet I continued the Rowasa at night).
SO NOW...I can't seem to digest solid food without having urgencies to empty my bowel...and I am freaking out because I have convinced myself that It MUST be cancer and that I will HAVE to have the colonoscopy and possibly an operation.
I have serious issues about being poked prodded or being put out with anesthesia.
I need real helpful advice as I sit here.
Right now it is 5:40 am in Michigan and I have to see him at 2:15 pm this afternoon. I have been on an all liquid diet since Tuesday (advice from the doctor who was covering for him the other day) and I can't seem to stop having these symptoms.....distended belly with tenderness and slight pain.....urgency to evacuate bowels....diarrhea...(once with some blood).
I am fearing the worst and have been obsessing again and again...searching all over the internet..cancelling work and feeling like my life is going to be hell and eventually ending from disease.
PLEASE SOMEBODY HELP ME FIND SOMETHING POSITIVE TO HANG ONTO.
I AM A 51 year old white male with panic disorder and am terribly worried about the worst case scenarios coming true.
CAN ANY OF YOU OUT THERE READING THIS BE OF ANY COMFORT TO ME?
I have distal UC diagnosed 16 years ago.

I've had 6 colonoscopies, and as Georgette pointed out..the prep is the worst part.

The drugs are the best part, but I ask NOT to be knocked out because I insist to watch the monitor.

You DO want to know if you have cancer or any precancerous cells in your colon. Wishing doesn't change that, and ultimately....if you get more serious with your symptoms, you'll have to have one anyway.

I deal with my UC with 5ASA meds (asacol and Salofalk retention enemas -- same as Rowasa). There's a proper way to use them, and if you don't....it's possible your UC can spread upward.

It's ultimately your choice to have a colonoscopy, but it's a necessary part of dealing with knowing what's happening in there.

I intend on keeping my colon for as long as possible, and I've decided to get REALLY SMART about what I have. I have anxiety as well, but it's never been in dealing with my health...just myself and other people. Go figure!

let us know how your doctor's appointment went today. We'll help you as you go along.

Facing facts is really the positive thing to do....denial and avoidance isn't.

Best to you,
quincy
Hi again....Thanks for the feedback guys....(or girls)

Well I am back from my visit to the Gastro-doctor.

I told him about ALL of the recent symptoms and how much worse they are and he kind of got a little frustrated with me when I didn't RUSH into talking about setting up a colonoscopy appointment.

I actually was so tired and upset at one point at his "I don't need to hear all the details...just tell me the damn symptoms" type of attitude that I actually started crying(pretty sad for a 51 year old man huh?) and telling him "You have NO idea what I have been through..you're a proceduralist"!!! He kind of was taken back by that but he sat back and shut up and let me finish my very accurate log of this week's ingested foods..bathroom habits..symptoms..everything.

After I was done telling him my week's events...we discussed my options for getting a colonoscopy. MY CHOICES ARE: 1.He knows I am the very anxious type (I have panic disorder and take Xanax for it) so he suggested that I be first relaxed with a little VERSED (via IV) and THEN have Propofol introduced (via IV) during the procedure. He said the Propofol will be fast acting and put me into a deep sleep. This would involve an anesthesiologist who would monitor me while he examines me..... OR.....2.If I insist..I can be injected with Versed and Demerol...and be in a twilight sleep and he would be monotoring me at the same time. He said some people wake up screamin from pain or discomfort and many enjoy a sedated state and well...you know.

I told him I needed time to decide which is right for me.

Then he said he's prescribe Prednisone 20 mg per day...to try and get my flare ups under control .He said for me to KEEP taking the Asacol (400 mg tabs 4 pills 3 times a day) and the nightly Rowasa enema.

I looked him in the eye and asked him...what he REALLY thought...DON"T BS me doc....and he said...he feels in his "heart of hearts" that I do not have cancer and that this is just a worsening of my distal ulcerative colitis.

He then layed me on the examining table and felt around my stomach and lower abdomen for ...well for whatever he was looking for.
Then he gave me a friendly tap..and said..You're gonna be fine"
Then I left and talked to an office worker about when to schedule a colonoscopy and told her I would call and let her know. With my work schedule it would most likely be in about a month. So I figured what's another month after 8 years .
Then I went to my pharmacy and go my Rx filled for the Prednisone.
I asked the pharmacist about SIDE EFFECTS ( I am ALWAYS FREAKED OUT OVER POSSIBLE SIDE EFFECTS OF ANY DRUGS) and she gave me a laundry list.
Well..there were a few that freaked me out a little.
There is one that says one of the side effects could be an irregular rapid pounding heart. THAT WAS IT!!!
I said to myself I am NOT gonna have a heart attack from taking prednisone.
So now I don't know what to do...and I am about to eat solid food for the first time in 3 days.

Has ANYONE had experience with the drugs mentioned above?
Propofol,Versed,Demerol, Prednisone (20 mg tabs)

I am a huge worrier and kind of a big baby...just the way i am wired.

And ideas?
musicmork....


Wow, how do I say this in a supportive way??? Hmmmm, DON'T TAKE THE PREDNISONE!!

Sorry.....I've read sooooo many postings about people who have been on prednisone and cannot even get off it. There are long-term side effects and it shouldn't be used unless one is totally resistant to 5ASA meds, plus others.

you don't have to take the prednisone. My doctor has never even prescribed it for me even at my worst time of 15 times a day of razor bloody diarrhea.

You have a say in your treatment.

But, do use your meds properly, use the Rowasa NIGHTLY, plus the Asacol daily.

Set up your colonoscopy and do it quickly so that you understand exactly where it is extended to and the extent of the inflammation.

For the meds during the colonoscopy, Versed and the Demerol are awesome!!!!!!!!! You can ask for more, and they can give you enough so that you konk out. The Versed is supposed to be an amnesiac...basically it's so that you don't really remember the bad pain if you had it.

Your stress levels will exacerbate your symptoms, but now that your fears of cancer have hopefully subsided, maybe you'll start to relax a bit about now dealing with your UC.

I would also suggest you purchase a good probiotic (keeps the flora of the gut balanced).

As well, there are many who adhere to the SCD (special Carbohydrate Diet) which you might find helpful. I don't, because food doesn't scare me and I understand my symptoms intimately.

Try not to be fearful of eating, for you must do so. Stick with fairly basic foods and stay away from whole fruits and vegetables unless they're cooked well. Salads can be touchy for many, I can eat them now now problem.

Food won't affect your flares at all, they can cause you discomfort because of the inflammation in your gut. Now that you're on your meds, you will start to notice an improvement withing the next week or two.

Are you able to hold in the Rowasa for the full night? If so, that's great!!

You'll be fine, try to keep it all in perspective and know that you will improve.

I refused prednisone early on when first diagnosed when my doc had to go out of town unexpectedly. I told the doc I wouldn't take it, he said he would have put me on pred first thing. I told him I was thankful that he wasn't my doctor.

So, you have some choices. The doctor may interpret your emotional state as a hurry up for you to start to feel better. The pred does work quickly, but usually one is on a dosage far too long (again from my perspective based on what I've read of other posters).

20mg isn't a high dosage, but if you can improve on the Rowasa and Asacol firstly....that would be my first choice -- yes, I'm a hardcore 5ASA user....but it has been 16 years of using it to treat and control flares, so I'm biased.

Hang in there and set up the colonoscopy soon,
quincy
Quincy,

I am taking the maximum dosage of Asacol and Rowasa...and it's not enough right now.

There is only one step up.....and that's a steroid....Prednisone.

Why wouldn't it help me ease my symptoms or even get into a remission if I took it for a short period of a month or two?

Also...I have been searching for other posts about Prednisone and can't find much here.

Do you have any links for me?

Now...I feel a little lost.
musicmork,

How long have you been on the Rowasa and the Asacol?

There's nothing wrong with taking PRed if it helps, and only for a short time of a tapering dosage. It has to be tapered just as any medication does.

I'm against PRed because doctors don't prescribe it, from my perspective, properly.

I think a 10 day tapered dosage is the way to go to start....to kick-start (healing process) or better yet to say kick-stop the inflammation.

My suggestion....KNOW what you're getting into and ask the doctor what he has in mind with your pred treatment.

As well, there is some evidence that pred plus Rowasa is contraindicative, meaning the Rowasa doesn't seem to work as well.

How long have you been using rowasa nightly? How far up is your inflammation?

It took me 3 months of nightly Salofalk (same as Rowasa) for my flare to subside.

All I'm saying is take meds, even Pred (yes, it's an awesome med when used properly)....but I've seen people whose doctors have had them on it for YEARS!! You think dealing with what you have now is tough? Getting off of it is darned near impossible, the adrenal gland actually shuts down and stops producing cortisol..then once it's being tapered the adranal gland has to literally be "woken up" again.

I'm not totally against steroid use, I use it inhaled for asthma. It keeps the inflammation down...but it's not oral. My husband had poison ivy and was given a 10 day taper and it's never been back. It's a miracle med...I don't dispute that.

But, I'm questioning just how bad your flare is and if you've had any improvement so far?

I'm asking questions to you that I'd ask my doctor if he ever prescribed it. It's all subjective, and the decision would still be mine. I also have a few friends who refused pred even through doctors insistance...and that's not with my encouragement either.

You definitely have to do what's best for you...just know that there's other perspectives about it..and it's OK to be confused about it. That way, you'll find the information and make a cognitive decision rather than one out of desperation.

respectfully,
quincy
Hey EVERYONE.....especially Quincy...I've taken Rowasa and Asacol(400mg 4tabs 3 times daily) for years and had fairly good results WHEN I was taking them regularly. Problem was...I would skip doses sometimes for BOTH meds...and well...I went completely off of ASACOL for the last year-2 years and didn't even see or tell my gastro-enterologist. Meanwhile I was using the ROWASA sporadically and I have had so many bloody bowls during bowel movements that I became moderately anemic. Recently...about 11 days ago I went back on the ASACOL and ROWASA and only missed a couple doses of ASACOL for one day. SO...they aren't working. Doc says the Prednisone could work to control the inflamation....until I get in for the colonoscopy.
Problem is...I have been so stressed and sleepless and all ...that since last Sunday I haven't been eating much because my retention of food time has shortened.
For example last Sunday night I had a chicken (boiled not fried) dinner around 6 pm and two hours later I was in the bathroom with diahrrea. Weird though...I have had diahrrea and loose watery unshaped stools all week....and yet I never have had any lower cramping. It's just that i'd be sitting or whatever...and I would have the URGENT need to empty and then i do (and it's diahrrea)...and I feel relieved until the next URGE.
So my questions and concerns are various.
FIRST...of all...I have already lost about 5-6 pounds this week alone.
That is freaking me out along with the daily watery and loose waste.
I DO have a good appetite for food but I am afraid to really indulge because I feel it will just come out after a few hours. I need my food to stay in my system longer.

Should I try some Pepto Bismol?

If I could have a semi -normal BM I'd be ecstatic.
Would prednisone help this to happen?
I KNOW that an ulcerated colon will not hold the waste correctly so it falls through before being formed.
Would Prednisone reduce the inflamation to my bowel and allow it to absorb water and actually form a decent turd? (I don't know of a better word for turd..sorry)

Here's the MAIN reason I am on here.

I am scared out of my mind that I have lost weight...yet I know that I haven't been eating much due to stress and fear.

What I want from you guys is ANYTHING positive to hang onto and I don't want to hear any doom and gloom stories or ....people YELLING at me to RUSH in and get the colonoscopy tomorrow...like an alarmist would be.

I need someone tp tell me that I will be okay...because I am walking around weighing myself before and after every meal and bowel movement. And my girlfriend's scale is always changiing by a pound or so ...so who knows.
I get so damn obsessed and depressed and THEN because of the recent symptoms becoming worse...I fear the worst and have been telling myself and others that I am dying.
I can't be in this frame of mind...I must find SOMETHING for now to calm me down and to find hope and know that things are gonna be okay.
Psychologically...I am a mess and it's GOT to be affecting my body somewhat.

When I left the doctor's office yesterday (Thursday) I felt like 100 percent better until the next morning when I went to the bathroom and looked into the bowl.
Then I started up the worrying again. ONLY NOW...I feel like I don't even have a chance with the Prednisone from all the posts I have read on this site.

I have a shrink too...and SHE says that I should try the prednisone and that it's not that bad of a drug. MY rx is only for 30 days with one refill....and it's 20 mg tablets.
Yes I admit that I read ALL the possible side effects and think that if I take the Prednisone that I will get them.

Maybe I could cut the tablet into quarters...and then take 1/4 pill on day one....2/4 on day two.....one pill on day three...build up or something huh ?

Does this make any sense?

Please...ANYONE reading this....I need someone to step forward and help me to calm down about this.
Let me know that my life isn't going to end soon.

Thanks

P.S. KDOSS3, thanks for the info on Propofol.
Everything you said makes perfect sense. We all are scared when first diagnosed because we don't know what to expect.


Positive......well, you'll be fine (this term is subjective of course, I think you'll be fine, you have to believe you'll be fine, too).

Positive......you've had good results with 5ASA.

positive......if you used your meds properly....you will have continued results.

Positive....food doesn't go through you in a few hours. Food triggers the peristalsis movement, and anything that has moved into the bowel will get rushed out in a hurry because of the inflammation.

Positive....when food gets rushed out in a hurry, the body doesn't retain the proper nutrients.

Positive.....once the inflammation has died down, the bowel slows down and learns how to work properly again.

Positive......you'll gain back any weight you've lost once you get the inflammation under control.

Positive......Metamucil Smooth (not the aspartame kind) will help bulk up your stool.

Positive.....eat small meals, chew them well. Eat every 2 or 3 hours. Protein drinks might be an option for between meals.

Positive......experience is our best teacher, no matter how much stuff we hear from other people.

Positive.....it took me 3 months of Salofalk retention enemas (same as Rowasa) to get the bleeding to stop and finally form proper stool, end the urgency/cramping...etc. I then had to taper off the meds and had a remission a few months later.

Positive.....when I was still flaring and on Asacol and Salofalk..I tended to get a bit ticked at times and just skipped dosages. I flared, and realised there's a right way and wrong way in dealing with these meds.

Positive....5ASA is still one of the best meds to deal with UC. It's a good start..but I would like to have you experience them working for you.

Positive....patience is important...my doc kept telling me this and I heard him through my tears of fear. He was right, and I learned to trust the medication, him and most of all...myself in how to use it properly.




--------

You can do all that's required to deal with this. It takes time to accept a diagnosis, symptoms, deal with frustration, realise changes are necessary, but it can be handled well. It's life-long, and that's why I encourage you to learn. What if you gave 5ASA a really fair try and then if it really didn't meet your expectations, you can go on the prednisone?

Give it even one month of proper (NO missed dosages) meds.

I just want to add that high dosages of asacol can also increase diarrhea. But, you could consider to reduce that after your urgency has decreased.

The Metamucil will definitely bulk up the stool. Start with one dosage a day and increase to two for a few days. I've gone as high as 3 daily, but only needed to do that for a few days.

PRednisone doesn't work by building up to a dosage. You might not get the side effects...20mg is a very low dosage. I know people who take 60mg daily.

I really really think you can do this...you can put off your colonoscopy until you see some results with your meds and start to realise your fears have lessened.


My psychologist has always told me......options....having options is what keeps you from feeling stuck, isolated and desperate. Challenge the irrational thoughts and give yourself rational statements about those thoughts.

Your life won't end soon because of the UC, that's for sure.
Trust in yourself. Read lots on UC. Take a day at a time.

Keep things in perspective.

I've been at this too long, so forgive me if I'm too forward.

quincy :wave:
Dear Quincy,

I cried when I read your response to me. It was very kind of you to explain things as well as you do. I finally feel like SOMEONE out there in this world understands my needs...emotionally and physically. I think we will become friends....hopefully for a long healthy time.

As far as my meds working....they aren't. I have been taking Rowasa for years and Asacol too. Now they just AREN"T doing enough...so I am continually having....loose paste like bowel excretions...sometimes one follows the other after ten minutes..but then I am okay for a while. I am a little uncertain as to what you meant by saying that I am retaining my food. Do you mean to say that since my food is digesting...breaking down.....that I am getting some health benefits? I have logged and documented EVERYTHING I eat...bathroom results....times...my weight....etc. I am like my own personal secretary.
Seems like when I eat..sometimes It may be only 30 minutes or an hour and then I get the urgency to move bowels. (not cramps as with typical diahrrea)...it's more of the feeling that ...WHOAHHHHH I bettter run to the bathroom or hold it in. But MAYBE I am excreting something I ate earlier? Niot sure on that one. I will have to look back at my log and see.

BUt sometimes..like at night...I will eat....and then take my Rowasa...and go about 10-12 hours before I have to evacuate my bowels. The only problems are....I get only a few hours of sleep a night (due to worry and stress and whatever) plus I am feeling low..weak...depressed etc.

I gave my girlfreind a 2 page list of my medical concerns and asked her to call my doctors...( my Gastro enterologist...and my psychiatrist) I suffer with panic disorder. I take inderal 20 mg 4 times a day plus Xanax .5 mg a day along with my gastro meds. He also wants me to take iron suppliments for my anemia...but i haven't as of yet. I am considering metamucil...like you suggested. maybe If I saw ANY improvement in BMs I'd be so happy.
Back to my Gastro doc....
I fear he's too much of a proceduralist to really deal with my emotional needs and therefore I am having a tougher time with my feelings of abandonment.
Some friends of mine are trying to use the tough love approach to get me into the colonoscopy. I understand their trying to deal with me. I have always been a hard headed person who is untrusting and fearful of many people and things in this world..and have always wanted SOME control in what I get inviolved in. It's how I am wired. Even though I am stubborn and sometimes impossible to deal with...I know I am a nice guy who is honest and loyal...and gives others SUPPORT that will help and not frustrate. THAT IS THE KEY.
TO EMPOWER and UPLIFT OUR FELLOW MEN AND WOMEN and not scare the hell out of them or GUILT them into things.

I promised my girlfriend ( I live with her and her son and our three dogs) that today I would take a shower and go outside....( even though i am so exhausted from lack of sleep...nutrition...or whatever).
I promised myself also..that today I would GO somewhere...change my environment and try to get my mind on something BESIDES monitoring my symptoms and worrying and making long phone calls to friends.

I want to keep up a dialogue with you because..you just might be the proverbial "needle in the haystack" person who can help me go through this...and of course I would reciprocate help to you as well.

You seem VERY intelligent and well read....and knowledgeable about these medical problems.

I would like to know a little more about you...basic things that you would like to tell me.

A little about ME... personally....I am 51 years old...male..live in Michigan in suburbs of Detroit area.
I am a professional musician/comedian /entertainer...and work a LOT with seniors. I have many bookings throughout the year. I play keyboards...trumpet...and sing...and tell funny stories or oddball jokes.
(I used to perform as a professional stand up comedian from 1986-1992)...and I truly am very funny and talented ...worked with some BIG names too..(not trying to brag).
Then the work dried up and I went into music...in the mid nineties.

I am going through maybe one of the toughest times in my life right now...and am feeling really needy...as you can tell.

Hoping to hear back from you...with more insight and help.

Thanks SO much,
Mark
Hi musicmork,

Your response is touching...but really, I want you to "get it" and start being proactive in your treatment and not feel like a lost cause. I know that feeling, and any connection where at least someone understands is very helpful and not so isolating.

To me....positive means what is the reality. So, if I know the facts, I don't act irrationally toward them. Stress will do a number on UC, and I've been where you are in the past..and I'm not going back, that's for sure. Oh, I just turned 50 this past fall....different perspective about life for me, and I've wasted so much time on "not living"...I'm looking forward to my 50's. Weird.

Tiredness is the norm with UC.....you'll get used to it, as long as you PERMIT yourself to listen to your body and be a working partner instead of worrying about each symptom.

Anxiety will exacerbate those symptoms, as well as any meds that calm down anxiety. Like a double whammy.

To get energy....lighten up on your worry load. I read you're giving yourself a break from yourself....good thing. Find the options available to you so that you can get out. Make yourself a detective and problem solver instead of a worrier. Make this your new statement..."what are my options incase this happens....be on the ready and prepared" instead of "What if".

No, you're not malnourished....just eat small meals daily. You don't need the hospital for an IV...just make sure you're drinking some water. Give yourself time to heal and for your body to recover.

Start the Metamucil.

Don't panic....it's a waste of good energy...do you realise how much energy you're focussing on the wrong issues?

I have some days that I have NO energy. I overdo some days, and spend the next day recuperating. When I sleep too much I'm drained. I'm better on less sleep. I do have anxiety and focus on many other things...but believe it or not, it's not my health. Go figure.


I laughed when you mentioned running away. That's the flee response to a stressful situation. I ran out of the doctor's office when I was 6...having the doctor chase after me, I almost got hit by a yellow VW Beetle. I was taken back and given my flu shot. Bleh! I never ran out of doctors' offices again.

Avoidance is a way I deal with issues...in the form of procrastination. We all do it...but your fears seem to me to be loss of control. You're actually overcontrolling, and it'll backfire where UC is concerned. You will learn that.

Did you know that many of us with UC also have irritable bowel syndrome? The pencil thin stool (good because you're having formation ) could be from inflammation in the rectum, or from stress which is contracting the rectal/anal muscles. The brain is indeed attached to the butt!!!



OK....question time ;)
What to you says that your meds aren't working enough?
What are your expectations?
Do you want instant relief so you just don't have to deal with it? That's your anxiety talking, do you not see that?
Helping others...hmmm, that'a a way for us to not deal with ourselves. We don't have the emotional baggage attached and know that we don't have to deal with it.

Do you take any vitamins? What about probiotics? I think they will help with the bowel flora. Most UC patients take them.

Your 5ASA meds ARE working.....just make sure you use the Rowasa nightly.



OK, I'm 50, female and married for 26 years. No kids. A small cat with a big attitude...she keeps us in line.

I have asthma diagnosed in '83, it runs strongly on my mom's side.
I had my right lung collapse 3 times. In Sept '75...I was admitted to the hospital (1 month stay) where had 3 separate tubings but my lung wouldn't stay reinflated. I HAD to have the surgery to "crazy glue" it to my chest wall to prevent it from collapsing again.

I had a hysterectomy in '92.....what a relief no more periods...flaring was impossible to control when periods hit.

I have aches and pains all over...have since I was a kid. At age 11, I developed BPPV in my right ear (which is a postural vertigo). I've had many bouts throughout my life, had a great doctor but he retired. In 1999 I developed it in my left ear and was dizzy 24/7 for almost 2 years. The new doc didn't help me any, and I've taken to treating myself. Awful when I feel I know more than he. Surgery wasnt' going to be an option (snipping the ear/brain nerve)...which was the only one he gave me. I'm since FINE, with a few attacks which I treat myself.

I have depression/anxiety. I've inherited way too many familial stuff, thank goodness the schizophrenia passed me by!!! :rolleyes: That's why the no kids. :nono:

I've seen a psychologist for many years to get through issues of ME, the death of my parents, change in career, anxiety, the depression. I'm on Effexor XR (75mg). I use depression to counter the anxiety. Interesting stuff...and not as scary as it was. I love sunny days, but I'm not a sun/heat-lover. I'm a night owl as well. Hard to balance the two. I need to embrace that I function in both instead of forcing myself to accept one over the other.

In '86 I had diarrhea for 6 straight weeks and lost 20 pounds. It was probably the first bout of UC..but didn't go through testing. In '89, the bleeding started and was finally diagnosed with UC. I've only been on 5ASA (asacol and Salofalk enemas). It took me 2 years to start to understand how the meds worked effectively for me, I've had no bleeding during flares for 13 years. My doc is awesome (same one for 16 years), and he's very left-brained thinking as yours is. He has reassured me many times and I'm grateful for his philosophy which I've adopted in treating my UC.

I too am funny. Although I went through a very "serious about me" period, I was happy to have my sense of humour back.
It's my defense mechanism when in stressful situations. I also use it pertaining to my health...I don't want people to think I'm "sickly". Because when I'm feeling good, I feel good. We who have "suffered" and see the world from a warped perspective tell it like it is. The best comediens are the ones who suffered the most emotionally. As well, we can say anything that's taboo when it's under the guise of humour.
It serves us well, that's for sure.

Congratulations on your professional success!! :bouncing:


You will be fine and learn to deal with this. Try not to be a victim of yourself in this, but learn the tools so that you can function better. It's life-long....you have two choices...try to control it (which is counterproductive), or try to live WITH it. Seems obvious to me, but keep in mind that there's a learning process which takes time to acceptance.

Hang in there... :cool:

quincy :wave:
PART TWO: After another hour...the doctor comes in and says...You are a little anemic but everything looks normal...your liver...your urine...your white blood cells...your xrays. I grabbed his hands and said "WHEW THANKS" I felt like I had just been granted a stay of execution by the governor.
I asked him about a zillion questions and he answered ALL of my concerns. Mainly..what do I do now? He suggested that if I wanted to feel better that I should begin taking the Prednisone as had been prescribed by my gastro enterologist. (They had put in a page to him because he is associated with the hospital I was in ). He also suggested that I take the iron pills.
He said he agrees that I should get a colonoscopy and find out what is really going on in there...and then I informed him that the IV had made me feel MUCH better and that I had a lot of apprehension about taking it..but he said to me that for a short term it would be a big helo to me. He was finally paged away...and he left. The IV nurse came back and he was pretty nice guy as well. I asked him a bunch of questions about taking prednisone and he told me that HE had taken it years ago for some kind of cardiac inflamation and it was a huge help to him. He said that in HIS experience most people suffer from side effects more when they are on it for a long time....as opposed to a short term thing. He disconnected me and I thanked him for all of his help and told him the IV had really helped me BIGTIME!!! he said...yeah I know ..I gave you a pretty good dose of fluids and you should have enough in your bloodstream for at LEAST a few days now. I got dressed and we walked out to the parking lot. I felt so much better..that I was driving the car and I asked my girlfreind "are you proud of me"? Her response was yes..but she said she's be more proud when i take my meds and when I get a colonoscopy.
So..we get home and she made me some noodles to eat..(I was hungry again but didn't want to eat anything spicy or hard on the system).

So NOW...you'd think things were fine huh?

Not exactly. I want to take the Prednisone asap (So I don't have to go through another week of this) but I want to be monitored while on it. I
am trying to figure out a way to do that . Ya see...I really need some kind of supervision . I would even GO INTO the hospital for a short time just to get on the stuff and feel a little more "secure" and not alone. My girlfriend REALLY needs a break from dealing with me all week. She really has taken a lot and has been a great caregiver. The iron tablets are not such a big deal.
Oh and ...While I was talking to the doctor at the hospital I mentioned that someone on an internet website had suggested that I NOT take metamucil becuase I'd be having OTHER problems. That was what his opinion was.

LASTLY...and here's the thing....I noticed when i went to lay down in bed tonight that my heart was kind iof racing and beating a bit hard. I didn't want to exaggerate it so I tried to ignore it. I took my Inderal and my xanax...and la little later I took my 4 pills of 400mg ASACOL (I had missed an earlier dose) and my ROWASA. I laid down and fell asleep.

YEP...I woke up AGAIN after only a few hours...and my heart was beating fast and a little hard....just like when i have panic attacks.
Damn!!! CAn't I catch a break? I need to sleep and my body keeps waking me up everytime i sleep for a few hours.
I the last week..I have not slept for more than 4 hours a night...and I still can't stay asleep for any longer. MUST Be anxiety related?
I dunno. So I woke up tonight around...oh 4 am or so.....and I walked over to the puter...and read your post Quincy. I just came back from emptying another quick watery splotch of mud in the toilet bowl. It is NOW 5:36 am...and soon my girlfreind will be getting up to go to work...her son will be off to school and I will be here ALONE..with just the three dogs..and a rapid heartbeat( a little slower now) and a bunch of decisions to make....alone.
I HAVE to find a way to take the Prednisone now (until I can get myself in for a colonoscopy)......I am thinking that in the short run it will reduce my inflammation and give my bowels some help....hopefully with no side effects.
I deserve a break.
I think I'll take a Xanax and try to rest again.

-Mark
OH YEAH QUINCY....

I forgot to mention......I had recently started back up on Asacol about two weeks ago. The Rowasa is something I have been on and taken sporadically.

I have actully started on these meds 6 years ago or more. That's way back when my colitis was...well it was not so horrible.

Now whatever it is....it's much more inflamed.

I have given it my best try here..but my colon is SO inflamed that these drugs aren't doing enough.

My gastro -doc knows this and that's why he wants me to try the Prednisone ALONG with the ASACOL and ROWASA.


NOW ONE MORE THING:

During this last whole week of hell....and months before...I rarely had any rapid heartbeating symptoms...in fact NO rapid beating symptoms at ALL even in the last two weeks!!!

SO WHY all of a sudden am I having this now?

Panic attacks again? Something else?
Boy, do I relate. I am 52, and probably a worse panic/depressive case than you. My bowel problems also involve neuropathy, and even after my scopes, I couldnt believe it, he saw nothing. I am in constant panic. This has been going on one year. Tried lots of things including accupuncture. I think of very little else, and have visions of my own demise. If i think of my daughter and wife that i love dearly, I get hysterical and cry for hours.
Can I be of any help to you? I dont know.But, first of all. I went in terrified, hyperventilating for the gastro scope and colonoscopy(my second), three weeks ago. Definately go for the propofol (sp?). There is no time lapse. The doctor asked me to put the mouth guard in my mouth, I felt the burn of the med from the iv, the next second(to me), i was asking the nurse where the doctor went. Its that good.
Now, your doctor is more reasonable than mine giving you prednisone. Yes it has longterm side effects, but you should feel better in a matter of days. If you are extremely lucky, it might be enough to clear it up quite a bit, if you could continue it. Did you notice any difference with the Asacol? It tends to make my condition worse, and Im not the only one, so you will have to judge that for yourself.
In a way you are doing much better than i am. If he saw uc, you wont know you had the scope, he'll put you on meds and a diet, and your mood will improve. You will be done for the time being.
I am looking at tons of frightening tests to come, losing my business, and most of all my mind.
Take the pred, it will help, do the scope (you wont believe how easy the actual thing is, you wont know you were even asleep basically) and you will probably be on your way to recovery.
Best wishes, keep us posted.
Some things in the meantime. Try a little banana each day, less carbs, no sugars, mostly a little meat and cooked vegetables, one half a caltrate tablet, and take some walks. Youre going to be fine. I wish i felt the same for me.

Aslo
Dear Quincy,

Okay lemme see..Tuesday night...I ate brown and white rice mixed.around 10pm.
Wednesday afternoon...I ate brown and white riced mixed......Wednesday night I ate brown and white rice mixed with chicken.
Later on I ate some cooked carrots and also a handful of all natural CHEETOS.
Do you think that I may be all stopped up from rice?
It is now 7:40 am on Thursday and I was up all last night because well..I did kind of sleep ALL day on and off Wednesday.

I have only gone to the bathroom ONE time since my last post. Nothing great to report except a quick burst of gas and a tiny bit of mud...no blood visible.
So, I guess I am constipated? Is this a bad thing? Better? Worse?Think about it...I went from going to the bathroom 10 times a day or more..to nothing? And I have this feeling that WHEN I go...it will be back to the same old formless mess. But yes..I am taking all my Asacol and Rowasa.
Update.... Just went to the bathroom at 8 am and it was a plethura of small bits with the consistancy of toothpaste....but no visible blood. Very disheartening to know that my bowels can't form a healthy bm even after more that a day of not going.

I NEVER thought that I'd be reporting my bowel movements daily on a website.
Amazing huh?
Mark
Mark,
I went through 3 g.i. docs in the last 6 months. Im thinking of a bumper sticker. The road to hell is paved with gastroenterologists. Two actually yelled at me on the phone, one in response to my telling him Ive been sick for a year, have pretty much lost my business, and im having panic depression conditions. Then he started yelling.

I am not a doctor, i cant tell you what to do, but I do know about pred and such and will tell you the best I can.
You are right, a typical schedule is something like a burst, 20 mg morning, 20 mg afternoon for maybe a week, then 20 mg morning 15 mg for a few days, then 20 mg 10 mg, etc. depending on how long the doctor wants to keep up the schedule.
But Some doctors will put you on a steady amount for awhile, weeks, months even, then taper you down. The tapering is to allow your adrenal glands to resume their job. Another method is 20 mg one day, nothing the next, 20 mg the following day, again allowing your immune system to come back as it were.
By the sounds of your description it sounds pretty assuredly that he wants you to take 20 mg a day until he talks to you next.
Again, it is ridiculously unusual to be allergic to it, except for very rare cases.
It is a synthetic version of a natural hormone, cortisol. It is in your body anyway.
Heres the way i look at it. You cant ignore the scopes, the medications, and every treatment for the condition, it probably will not go away on its own.
So if you are hesitating on the scope, at least try the prednisone.
You can break the pill in half for the first trial. Take it in the morning with food. I doubt you will notice much of anything. Unfortunately, 10 isnt enough to really help, 20 may. Some people are on 100 mg a day or more. Then it becomes a problem in time.
You know, many people have a hard time with Asacol. It is a strong aspirin related substance, so in retrospect, you took a chance with that, so why not the prednisone ?
I am not underestimating prednisone. People who are on it, off it , on it again, for long periods do get nasty side effects. But most people have little problems with small doses. Even children are given it for certain conditions.
The only thing i think you can expect is a little more nervousness for a bit after you take it. Shouldnt be bad, just a little keyed up.Especially since you are panic prone. It will calm down as the day goes on. Take your xanax accordingly.
My suggestion, again, Im not a doctor. But your doctor did prescribe it.
Try the half tablet to ensure yourself you are o.k. next day do the 20 mg in the morning with food. Try to stick with it a while and contact your doctor.
See if if helps your stool. If you need to come off the 20 after a few days, go to 10 for two days, then a 5 then nothing. If you are on it for weeks, drag the tapering out a little more.
I know people that go from 20 to nothing and feel o.k.but its not a great idea, you should taper.
Try to eat the rice, a part of a banana, avoid dairy, alchohol, coffee, less carbs. Many people take acidopholus supplements, but Im not sure if it helps me or not. No sugar. No desserts. No soda.Be careful with other prescriptions.
Keep us posted. It is a horrible disease, no doubt. My first time I had it almost a year, and then was great for 8 years. I dont know what the heck is wrong with me now.
Its amazing Mark, I too feel like Im going to die. Even had a dream with my daughter looking at me in my coffin. Nice huh?
Good so you are going to try the pred, 5 mg to 10 etc. I think you should.
Please dont worry about the low dose pred right after you swallow it.
My problems are, had mild colitis a year ago, took pentasa(like asacol) 5 days later developed numbness, shooting pains and muscle spasm everywhere. Discontinued the Pentasa, and I still have all that a year later. Just about lost my business, developed panic attacks and depression. I have one soft mucousy stool per day, no matter what I do. Pred takes away the mucous and makes it firmer. Scopes show NOTHING. Cant believe it.
As far as your body, you are probably eating very little compared to before, and have had many poops, so some of it is to be expected.
I really hate to mention this, but maybe your small intestines are involved as well, ie chrons. I really hope not for both of us.
Taking any supplements? Sublingual b12 would be good, small multi vitamin.
Lots of water, the gatorade is good and bad. There are also some good digestive enzymes in health food stores. Just the fruit vegetable type like
bromelin etc, no acid. They are like rolaid rolls. You chew them before meals, and it helps digest the food better. They are made from natural things and are safe.
So if I have this right, you are not going to do any scopes or medical tests ?
The strange thing about people like us is we are scared to death we are dying, yet we cant do the testing we need to get healthy.
For whatever its worth, one nut case to another, I dont think you have cancer or are dying at this point. You do have intestinal irritation and inflammation, he saw it.Did you have the blood tests for Chrons, UC and Celiac?Anemic? Let me know what you plan to do?
I will pray for the both of us.

Aslo
I was only diagnosed with uc about 9 years ago. At that time it was mostly at the bend of the transverse descending colon. Now, it would appear I may have chron's, but it is not diagnosed. My symptoms with UC were the runs, soft stool, blood, darker stool, things not even resembling stool., much cramps, nausea, pain, things like that.

I tried all the meds back then asacol, rowasa enemas, sulfasalazine. They all made things worse,(rowasa is an exception). What finally killed it was I had a lung infection and was prescribed a long prednisone burst, and one week of biaxin, and for some reason, that did it. Had it over a year, that took care of it for nine years.
Dear Aslo and Quincy,
I'm sorry to hear about your friend being banned.
I'm SURE he's watching your posts and thinking of you.
Maybe I can fill in for him?
I hope you two are finding strength and ways to deal with the emotional baggage that comes along with these awful life altering health issues.
the one thing I can say is ...I have had a lot of support from a local group I joined in the early nineties. I met a lot of fine people there and decided to let them help me to help myself. I recently had a terrible flare up concerning my UC.
The doc wanted me on Prednisone but I was afraid to take it. But since I have been on a strict regimen of taking my Asacol and Rowasa I have had much improvement even though I STILL will have to get a colonoscopy in the future and I have never had one( I was always too scared).
Just take things one day at a time and you will see how some glimmers of hope will enter into your world.
I will be thinking about you and your progress.