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    Old 03-06-2005, 02:39 PM   #16
    quincy
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    Re: New to this board...and need some positive support

    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!!! That's why the no kids.

    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!!


    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...

    quincy
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    Last edited by quincy; 03-06-2005 at 02:50 PM.

     
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    Old 03-07-2005, 02:48 AM   #17
    musicmork
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    Re: New to this board...and need some positive support

    Dear Quincy,

    THIS IS A TWO PARTER BECAUSE THERE IS A 1,000 WORD LIMIT...

    Here's an update for you. Sunday, I had a very bad day. Early on... I once again woke up after only sleeping a few hours and felt really tired....and exhausted.
    My legs were shaky and I had not much of an appetite. I KIND of felt like the way one feels after doing a Phosfo Soda prep.....weak..shaky legs...just awful.
    My girlfriend made me some oatmeal in the morning which I had to FORCE down me. It was bland as can be and I only ate it to have some nutrition. After an awful morning of worry and dispair over dealing with my fears and having a full weak of losing fluids and not being able to replenish them , I was preparing to die. I told my girlfriend that "this was the end".
    My psychiatrist finally called me back (she was returning my urgent phone call put in Saturday)...and I told her my symptoms and asked her what to do. She suggested that if I really felt THAT bad that I should go to the hospital ER and get some help. I asked her "What do you think this is"? She said...well I know that you're very stressed out and that you also have a lot of fear about this latest monster flare up...and the fact that you are losing a lot of fluids might mean you're getting dehydrated. She went on to add...that she also knows..that when UC goes untreated that it can turn cancerous..and so forth.So I told her that when we (my girlfriend and I ) tried to reach my gastro-enterologist on Friday....the woman at the office said to call back on Monday and basically it was a blow off. I also added that even though my gastro doc....is highly respected in his field....that he was not treating me as a patient and that I needed someone who will be more availlable to me.
    She mentiond a gastro-enterologist friend of hers and I jotted the name down. Meanwhile she told me that I can and should increase my Xanax a little during this time ..and she urged me to get help as well. When I asked her what they could do for me at the hospital she said..."Well they will PROBABLY give you IV fluids and send you home with Prednisone"Then she was gone and I felt kind of abandoned by her . So now I am feeling really vulnerable and also thinking I am dying. My girlfriend has been trying so hard to help me through all of this ..but I could see that ever SHE was getting very tired of my constant obsessing and fearing iminent death is at hand. I was walking in a fog like state and my body was weak....I mean REALLY weak.
    My girlfriend said come on ...go take a shower and let's get a change of scenery. I forced myself to take the shower and shave and after looking up all the colon diseases on several internet sites AGAIN...I finally said okay let's go for a ride(Although I told her that I was dehydrated and needed some help).
    We got in her car and my mind was so sleep deprived and body so tired and weak, that I had HER drive). Usually I drive 95% of the time..but I felt she'd be the better choice. We went to drop off something to her friend's house and it was maybe about 7 miles away or so. She took the scenic route..and the WHOLE time all I could say was.."I'm dying I know it "!!! And she would say "You're NOT dying" and I would yell back at her that "this is the end"and I was so combative and rwactive that she FINALLY snapped and started crying. She was fed up with my constant non stop blabbering about how awful I felt and how I kept snapping at everything she said to me. I appologised to her and begged her not to argue with a "dying man". after she dropped off a power cord for a computer to her friend...I asked her to find me a place to urinate as I all of a sudden had some urgent need to do so..(VERY UNUSUAL FOR ME). We got to a SUBWAY and she waited in the car while I went in and used the bathroom. I came back to the car...and told her that we should talk out our argument and get on the same side...I appololgized for snapping at her and told her that it was just my stressed out condition speaking (body and mind). Then we discussed whether to go to the ER or not. I was undeciided because in MY warped mind...I think of hospitals as scary places where people go to die. I said let's go home and let me think about it. By this time I was totally hysterical and scared ...and I took a Xanax when we got home. I went online again and she was eating a salad. I finally came out of my room and after preparing a little overnight case..I said "Let's go to the ER"
    She and I left for the hospital. I was scared and anxious.
    When we parked and went in the line was long and STRANGELY enough I seemed to have calmed down a bit while we went in. We waited a long time to be processed and then after an hour or so...the admitting nurse finally took my temp and BP. I was very surprised to see that my temp was normal and my BP was 120 over 70...perfect!!! That relieved me a lot...and after explaining the whole story to the intake nurse I was rolled back to another waiting area. By this time amazingly..I was settling down a bit and starting to not feel so scared. I saw a lot of other people around me who were in terrible shape and I was worried for them. My girlfriend and I sat and waited and chatted and FINALLY they rolled me into an examination room. I changed into the rear view double tied back gown..and laid on the bed. We waited again..but while we were waiting I was actually getting to relax a little. Finally a young ER doctor came in and listened to ALL of my symptoms and stories of the last week and beyond and he was very easy going and nice. He said .."Okay well we're gonna give you some fluids and take some blood samples ..okay"? And I said...yeah..that's fine. The next guy who came in was the nurse with an IV. He poked my arm about 5 times before getting into my vein...and he started an IV of (I'm pretty sure it was the basic stuff they give people to re-hydrate them).He was a nice guy too...and we talked a bit and then he took away my blood samples and he said he'd be back. So i forgot to mention that during the waiting before i had to use the ER bathroom to move the bowels...and when i sat down on the er toilet(After wiping it down with anti-bacterial wipes which I had with me in my overnight bag)..I proceeded to pass gas mixed with some diahrrea and blood. great huh? What else is new ..I've been passing watery mud all week anyway.
    Back to the room now....my girlfriend and I are in the exam room..and I am on the bed with a sheet over me with an IV in me. As time went on ...and I began to re-hydrate I mentioned to my girlfriend that I think I am feeling better.(By this time I think she was over her anger at me from earlier..and we played some word games on paper).
    The next person to come in was a nurse who was gonna take me to get stomach X-rays. My girlfriend stayed in the room while I was wheeled on my gurney bed (I loved the ride by the way) over to Xray. Did n't have to wait long and they took several pics of my standing and lying on a table that looked like the one that Frankenstein's monster was created on. I was wheeled back to the waiting room...and we waited some more. MY girlfreind was really tired of all the waiting (she can't sit still..hates idleness and she always has to be doing something).
    another nurse came in and took away my urine sample from earlier. It was sitting on the table...and I told her ..I think by NOW it's a fine vintage ...she laughed and left with the sample. Time was going by on and on I was worrying about my test results....HOPING that they would let me go home.
    (continued on next post)

     
    Old 03-07-2005, 02:49 AM   #18
    musicmork
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    Re: New to this board...and need some positive support

    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

    Last edited by musicmork; 03-07-2005 at 02:50 AM.

     
    Old 03-07-2005, 03:18 AM   #19
    musicmork
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    Re: New to this board...and need some positive support

    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?

    Last edited by musicmork; 03-07-2005 at 03:22 AM.

     
    Old 03-07-2005, 01:05 PM   #20
    quincy
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    Re: New to this board...and need some positive support

    You're having this now because you're conflicted about what to do. Maybe it's difficult for you to make a decision because you believe you will make the wrong one?

    There's really no right or wrong...it's basically treating all the symptoms as they come along.

    You believe you're going to die.....you have no basis for that. Your girlfriend is amazing I must add.

    Have you been through cognitive behavioural therapy? I think that many of your symptoms are anxiety based. I also think that if you do start the Pred, you'll get some relief from symptoms and your anxiety will subside somewhat.

    Your reaction in the hospital is normal....the anxiety lessens, you feel better. you've been taken care of, everything in your body is normal aside for the UC. Other symptoms aren't necessarily related, and the ones that are can be EASILY treated.

    Discuss with your psych doc about cognitive behavioural therapy. This would mean a lot of work, but when one learns to recognise the irrational thoughts and challenge them there's an incredible sense of control of the good kind.

    What's the thing that scares you the most? Please don't say that you're going to die...that's the most obvious answer.....really, what is the thing you're most afraid of in dealing with your UC?

    I've been almost there.....definitely not to the extent you're at, but the bottom line (haha, that's a UC joke!) is you believe you're losing control. When I had my first real anxiety/panic attack, I thought I was having a stroke. I told my gastro because I thought it was one of my meds...and he mentioned anxiety. I was truly insulted...that would mean I had problems and not in control..no, it was definitely the meds. So, eventually I sought help, but he pegged it, and it basically took me a year to even accept that I had anxiety. It wasn't tangible, for I had nothing to blame but myself and how I perceived and handled situations. This has been a very long haul for me.

    Now you have to make some decisions and maybe you are somehow afraid to start the learning process? There's many ups and downs, but really to find what's right for you...trial and error is what has to take place.

    Does any of this make sense? I still get anxiety attacks, and they are ALL when I'm feeling "out of control"....but it's all self-inflicted because of my procrastination, being late, ignoring what should be done, and last but not least....not making decisions that I know will make my life easier. My husband is awesome....and I've just come to the conclusion lately...."I don't have to change because I'm accepted by others the way I am".....but I don't like the way I am, so I have to keep going and draw up another plan for continuing change.

    So, how did your day with the 3 dogs go? How many times on the toilet? Same symptoms?

    talk soon,
    quincy
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    Last edited by quincy; 03-09-2005 at 02:00 AM.

     
    Old 03-07-2005, 01:07 PM   #21
    quincy
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    Re: New to this board...and need some positive support

    Oh,forgot to add.....I can't find where it says for you to NOT use Metamucil to help with the diarrhea.

    Could you clarify for me.

    As well, start eating more protein. In the morning instead of oatmeal, try an egg and a piece of rice toast.

    Drink ricemilk instead of milk.

    You need more protein I think.

    ok, I'll stop now.
    q ;-D
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    Old 03-09-2005, 03:52 PM   #22
    musicmork
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    Re: New to this board...and need some positive support

    Dear Quncy,

    After making several calls and leaving messages for my gasto-doc...days later my girlfriend FINALLY got a return phone call. She wa sspeaking on my behalf.
    She told him that I was too scared to take the Prednisone (20mg tablets) and that I wanted him to admit me into the hospital so I could be monitored in case of something awful happening. He told her that he would use his "pull" and get me in.
    All I would have to do is to go to the ER on Monday night...and say that my doctor had sent me there to have a consult with the admitting doctor.
    He would then meet me in the morning on Tuesday after I was admitted.
    Sounds great right?

    Wrong!!!

    Because I was so tired on Monday night I packed my stuff and decided to go there on Tuesday afternoon...( i needed sleep so bad).

    My girlfriend made a few more calls to his office to LET him know that I was at the hospital but was arriving late.

    No return call.

    Finally as I arrived in the ER...Tuesday afternoon..bags packed and all...I checked in and waited ALL day and most of the night to see a doctor. It was extremely busy. While spending many hours in a busy waiting room....(MOSTLY senior citizens)...I decided to make the time go by faster and do what I do professionally. I addressed all the peolple in the room...and got their attention. I said..."What's the matter...it's like an elevator in here..all huddled together and nobody'd talking"? I said Ladies and gentlemen...While I am not sick do you wanna know what I do professionally?
    They all kind of looked interested but a little surprised. A few people said"what"? I said...."I am a musican,comedian, enteratiner...who works every week in senior living facilities" A hush went over the crowd. Now keep in mind that I didn't have a keyboard on me or nor was there a piano in the immediate area...after all..this WAS an ER waiting room.
    I started in on telling them jokes and asking them about themselves...and minutes later..I had the room...all watching me and listening. It was like something out of a movie it was very surreal..but for me it was just another day at work. Everytime a nurse came in to announce a name ..it was like SHE was interrupting my "show". I told them..laughter and music is great medicine...and instead of all of us writing in misery ,anxiety ,and fear...we should be trying to laugh or talk or whatever.
    One man was complaing a lot about the pain he felt and that he has been waiting for the LONGEST time...I told EVERYONE..."YOU SHOULD ALL BE THANKFUL THAT YOU HAVE BEEN WAITING HERE SO LONG...BECAUE THEY TAKE THE WORST CASES FIRST..SO YOU CAN'T BE THAT BAD" "THE LONGER YOU ARE HERE THE BETTER YOU REALLY ARE" They all laughed in agreement.
    For the next few hours....everything changed in the room and as patient''s names were called they left thanking me for my entertainment. (too bad I didn't have my keyboard ...I would have had the whole room singing).

    Finally...around 7 hours after I had originally arrived... MY name was called.

    Now remember the ORIGINAL agreement was for me to be able to go into the hospital and be monitored while taking my pills and if I needed an IV of liquids..I would get that too..not a big deal....right?

    Long story short I was whisked over to an area where this VERY PUSHY WOMAN ER DOCTOR took my info and then tells me that they are gonna start me on an IV liquid drip AND IV steroids. WHAT???????????????
    That's not what my doctor told my girlfriend.
    This woman...we'll call her Dr. P ( for pushy) says to me....here's how we do it in the hosptial....and that's that!!! I said I don't like this...I wanna talk to my doctor.
    She said fine I will call him and let you speak to him.
    Next I am put in a room by some nurses' aid and she says to strip and put on a gown. "I am not doing ANYTHING until I talk to my doctor"!!!
    Doctor P somes back and says "I just talked to your doctor ..he says that you do as we say or find another doctor" He wants you to take the IV steroids with NOTHING to eat for a few days to give your bowel a break..and then he'll PROBABLY want to do a colonoscopy"!! I said WHAT???????????
    That is NOT the agreement I had understood before I came in here. She said...well "If you just want to take the prednisone pills and be able to eat...than you don't need to be in a hospital "!!! I said oh man..this sucks...I don't like this at all. (I was being railroaded). Dr. P says to me...Well...you'd better do something..you don't wanna wind up wearing a BAG do you"?
    That was the final f------g straw for me. I said ...How come you didn't let me talk to my doctor like you said I could"?
    She says "He didn't want to talk to you"!!!
    Finally I said "Look. I know I have some real issues but I wasted my whole day here for nothing. How about you give me an IV and take some blood and send me home"? She said..No. You were just here two days ago and you test results looked excellent".
    "Okay here's the deal I said" Call my doctor back...and ask him if i can go home and take the Prednisone pills..and IF they for some reason don't work..I will come back...whattya think"?
    She says..."Sounds okay to me" Let me call him".
    She comes back and says..Your doctor says you can go home and take the pills for 7 days and then come into his office for a follow up. I said "Fine..okay".
    Meanwhile, I told Dr. P ( who was softening up just a little) about all my anxieties and concerns about taking the prednisone at home...and she said...that I shouldn't really have any problems with side effects on 20mg daily...just remember to take it with a meal of bland food...and the earlier in the day the better. She went on to say "If you develop a fever or stomach pains come back here to the ER".
    I said okay...and took my patient release form and my luggage and left.
    When i got home my girlfriend asked me "what happened"?
    After I told her she was REALLY ****** at my ooctor for telling her ONE thing and doing another.
    So...last night I chilled out and ate some mixed brown and white rice with a tiny bit of butter...and talked on the phone a bit and went to sleep.
    I did not take the prednisone (from fear) and I had more mixed rice for my lunch today. Meanwhile I have NOT had to rush to the bathroom in many many hours. It is now close to 7 pm est on Wednesday..and I am sitting here typing this ...just waiting for the time to come to go to the bathroom...amd see what's up. I have continued on all my ASA drugs...and bascially slept most of the day away catching up on some MUCH needed sleep.

    SO NOW my plan is..to take the prednisone asap. But WHERE is a safe place to be while I take it? What happens if I take it and get sick?
    I am so lost right now about it.
    My doctor is a lame duck and I am ****** at him. Besides my girlfriend ( who lives with me but works during the day) I have nobody to help me through this hell. Sounds dramatic?
    Well ....If anything WERE to happen...I can't reach the doctor because he doesn't return phone calls until days later.
    I know what you're thinking....GET ANOTHER DOCTOR.
    But time is important and he's all I have at the moment and I really need to get crackin' asap.

    Any suggestions?

    Mark

     
    Old 03-09-2005, 07:38 PM   #23
    aslo
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    Re: New to this board...and need some positive support

    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

     
    Old 03-09-2005, 11:52 PM   #24
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    Re: New to this board...and need some positive support

    Hi there....I was getting concerned! Interesting hospital visit you had!!!!! No wonder you were able to sleep so well.



    Quote:
    Originally Posted by musicmork
    So...last night I chilled out and ate some mixed brown and white rice with a tiny bit of butter...and talked on the phone a bit and went to sleep.
    I did not take the prednisone (from fear) and I had more mixed rice for my lunch today. Meanwhile I have NOT had to rush to the bathroom in many many hours. It is now close to 7 pm est on Wednesday..and I am sitting here typing this ...just waiting for the time to come to go to the bathroom...amd see what's up. I have continued on all my ASA drugs...and bascially slept most of the day away catching up on some MUCH needed sleep.

    OK, I'm not getting something You're doing well, but you want to take the pred? Sounds like the 5ASA is working inspite of what you're thinking.....waddyathink?
    Actually, I'm really impressed!!! I think you're dealing with your UC in a way we all do. How often bms today? How about last night? You're still using the Rowasa and retaining it all night? if yes on all accounts, I'm twice impressed.

    You're getting better all the while you're focussing on not wanting to take the pred. Maybe that's a good tactic...ya think?

    Or...

    am I getting the wrong impression and your symptoms haven't changed at all?

    quincy
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    Old 03-10-2005, 04:41 AM   #25
    musicmork
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    Re: New to this board...and need some positive support

    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

    Last edited by musicmork; 03-10-2005 at 05:03 AM.

     
    Old 03-10-2005, 05:46 AM   #26
    aslo
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    Re: New to this board...and need some positive support

    Mark,
    You really shouldnt be afraid to take the prednisone. 20mg is a dose that could be prescribed for a bad case of poison ivy. The side effects you read about are for long term use of higher doses. You probably should take a small multi vitamin with the prednisone. Here is what is will most likely do to you.
    It may make you a little more stimulated for a while, but your xanax should help with that. But after a day or two, I think you will see a more normal bowel movement. It is an anti inflammatory. The swelling in your intestines will calm down, your poop will become firmer and less of them. Bleeding will probably stop, less cramps and pain. It helps with UC, Chrons, and other g.i. problems. It is prescribed in much higher doses for bad poison ivy, asthma, and many other conditions.
    Considering the way you feel and your fear of the scopes, I think it is your best option. Reactions usually happen with much higher doses, for a much longer time. I really think from experience, its going to help your intestinal problems a lot. Take it with milk or food to avoid a little stomach upset.
    If you are really that afraid, you could also take 10mg the first day, then once youve seen youre o.k., take the 20 as your doctor recommended.
    prednisone, by the way is a lab form of something that exists naturally in your body. I think ive read that about 7.5 mg is similar to what exists in your body. So, taking 20 mg is a moderate dose, but enough to start reducing the inflammation. The first time i took it was for asthma/pneumonia, and it kept me out of the hospital, and probably saved my life. The next time it was for asthma again, and as a bonus it practically cleared up my colitis, when nothing else was working.
    So, try a 10mg the first day if you wish then go up to the 20. I think in a week you will feel much better and see a more normal stool.
    Get better.
    Aslo

     
    Old 03-10-2005, 09:24 AM   #27
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    Re: New to this board...and need some positive support

    Dear Aslo,

    Thanks for the input about the prednisone. I really wish I had a gastro-doctor who was more responsive to me as a patient. I mean MY guy...although he is highly regarded as a surgeon and so forth...just isn't there for me. When I need to get in touch with him...he's NEVER available and it's very frustrating. ANOTHER thing is...his Rx that he wrote me for Pred just says take one pill (20 mg tablets ) a day and there are 30 pills in the vial with one refill.
    It doesn't even seem like he has any kind of withdrawal plan for me .
    How can I get the permission to take 10 mg for the first day?
    There's nobody monitoring me and I feel lost and afraid.
    It's NOT as if he said...call me with ANY concerns or problems...because he just doesn't care anymore about my concerns....I mean if you've read my recent posts...he never returns calls and his staff are generally clueless about what to tell me or anything so i feel abandoned.
    Also...WHAT if I find the prednisone is intolerable for me.......? I CAN'T just take a pill for a day or 2 or 3...and then Quit can I?
    Maybe I should ask my pharmacy what to do.
    I am wondering what they will tell me.
    Can you break these pills in half? Are they homiginized? Will it be advisable for me to take a half of a pill the first day and then build to the full dose?
    Would 10 mg a day work as a daily dose? I have so many questions that people will say"Well..just ask your doctor"...and then I would have to say"MY DOCTOR IS NEVER AROUND AND WON'T RETURN MY CALLS ANYWAY"
    I feel like I am so screwed.
    Oh and here's another question for you....
    It says on all the prednisone information labels..."Before taking Prednisone tell your doctor or pharmacist if you are allergic to it or if you have any other allergies" .
    Well how does a person KNOW if they've never taken it before?
    Then If I DO finally take it...I gotta take it and sit around waiting for an adverse reaction all day?
    There's just so many worries that I have with this drug that I may make myself worse. Besides...I don't like the idea of taking it all alone with nobody around in case I feel something awful. My girlfreind works during the day and isn't here until after 6pm. I feel like my life is on hold and I have cancelled some gigs already and will have to continue to do so.
    Mark

    Last edited by musicmork; 03-10-2005 at 09:38 AM.

     
    Old 03-10-2005, 11:20 AM   #28
    aslo
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    Re: New to this board...and need some positive support

    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.

     
    Old 03-10-2005, 11:48 AM   #29
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    Re: New to this board...and need some positive support

    p.s.
    I am also panic ridden as I mentioned. I am also self medicating with 20 mg prednisone at this time for similar reasons.
    When I take it in the morning I feel a bit more nervous. If i took a sudafed, for example that would be worse, heart palpitations etc.
    The pred tends to feel a little like a slight stimulant at those low doses, so it will probably make you feel slightly more anxious. Doing your regular routine, maybe some deep breaths, a xanax or a half, should keep you o.k.
    Then maybe 15 mg would do little.
    Im not trying to scare you more, just trying to equate it out for you. It might be like drinking a coke or having a little coffee, or you might not notice anything. I find with the panic, I can notice any little stimulant. This dose should not be extreme though, especially the 10 if you try one day of that.I know its easy to say, but try not to worry too much and give a small dose a try.

     
    Old 03-10-2005, 02:14 PM   #30
    musicmork
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    Re: New to this board...and need some positive support

    Well this afternoon I went to my pharmacist to get more Rowasa.
    I told the pharmacist (her name is Laurie) that I was wondering if I could get on the Prednisone slowly...and she said yes.
    I also told her that my doctor is not available to me and that on my medications it says....in case of questions or concerns please contact your doctor or pharmacist. So since my pharmacy is closed on saturday and Sunday I asked Laurie if i could call her in case of any problems. She said no...that she can't give out her home number to customers and that she is busy on weekends and unavailable. So I said...hm now I really feel abandoned. She said you could always call a CVS or Rite Aid. Yeah like that's gonna really help.
    So I put in a call to my shrink and tried to get in to see her this afternoon but she called back and said her book was filled.
    Meanwhile Laurie said I could take 5 mg Pred for 3 days then 10 mg for 3 days and then 15 mg for three days and the 20 mg....building up to it.
    I said okay. I also told her that i have lost about 20 pounds in the last two weeks or so.....she said "That's not good'
    I said I wonder if I am dehydrated and she says "you don't look dehydrated but the she did the pinch test on my skin and it didn't fall right back down so who knows?
    My weight loss in such a short time worries the hell out of me but if I get too worried i'll be running around screaming "I'm dying I'm dying". It's important to note that last Sunday I was at the ER and was given IV fluids. Afterwards I felt so much better....but my bloodwork did NOT show dehydration. I am drinking a lot of Gatorade and water. My bowel movement frequency right now has reduced dramatically. I only went one time in the last 24 hours.
    So..there are two more issues I have to deal with. One is..I have a dental abcess and I never had the tooth pulled. So I put in a call to my dentist and am still waiting. Also...I have a cardilogist but I haven't called him yet and maybe I won't have to but right now I feel so alone and lost.
    I called my girlfriend at work and she doesn't have the answer. I am feeling more despair ...isolation...and abandonment than I have ever felt in my entire life. I am depressed now and thinking that I must be really sick if I am so weak and have lost so much weight in such a short time. of course that could be from not absorbing enough fluids from my UC or whatever the hell is in me.
    I am out of ideas and hope.
    I feel once again that I am going to die.
    Mark

     
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