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johnh
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 12/5/2007 1:37 PM (GMT -7)   
Hi, all.  My name is John and I'm a 34 year old male who was diagnosed two weeks ago with pancolitis, and BOY, has this been a whirlwind, and a life changing experience for me.  I never knew when I woke up about six weeks ago and started to have a little stomach pain and some diarreah that it would lead to this.  After four visits to my primary care physician, two rounds of antibiotics for what was thought to be EColi, and begging my PCP to refer me to a GI, here I am.  I've gone from aprox. 185 pounds to about 166 pounds in the last several weeks, and I quickly realized that my life is not going to be the same.  I'm currently on 20 mg of Prednisone twice daily and four 750mg Colazal twice daily to try to get it under control...my only problem is I am an "instant gratification" type of person, and of course I want to feel better now!!! 
 
Can anyone out there tell me their experience with the first diagnosis and how long it took for the medicine to "kick in?" 
 
I'm trying to remain positive, and thank goodness I have a desk job where I can sit most of the day and not really have to move around alot (I could never afford to stop working!!!).  However, it's so hard to do, when you go through the same thing over and over and over day after day. 
 
I'm so glad I found this board, so that I can share my experiences with people out there and know that I am not the only one suffering.
 
Thanks....and best wishes to you all. 

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/5/2007 2:00 PM (GMT -7)   
At 40mg of prednisone you should be feeling better pretty quickly. Sometimes prednisone works for people over night, sometimes it takes awhile. I think I started feeling better after a week or two. It took much longer to get out of my flare but it didn't feel like I was dying!

I will definitely say though, make sure to drink plenty of water and watch your salt/sodium intake with the prednisone to help with the weight gain... Unfortunately with prednisone you usually just gain weight in your face and stomach which tends to be really frustrating for people even if you want to gain weight. So I thought I'd just throw that tip out there :)

I don't really remember too much about my diagnosis except that I was pretty terrified... I was 14, and one day I went to the bathroom and the toilet bowl was just full of blood. I'm sure I had been having problems for some time before that but I just don't remember anything before that day. I went out to my mom and told her and that day we went to my PCP who referred me to a GI. My first colonoscopy was the worst. I just remember crying and crying and thinking "Why me?" I thought I was completely alone. I didn't find this website until years later and I really wish I had known about it then because it really is SO helpful!

Remaining positive and knowing you're not alone are the most important things so you're already on the right track :) Good luck, and welcome!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of spine from long term prednisone use

Current Meds:
40 mg Citalopram (for depression/social anxiety)
125mg Imuran
 
Should also be on supplements and probiotics and other UC drugs but I'm just not good at taking pills...


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 12/5/2007 3:05 PM (GMT -7)   
Hi John and welcome!

The pred took a long time to work for me if it even is at all. I also used hydrocortisone enemas (not fun the first few tries) but it worked for me in two weeks, not everyone is the same but rectal meds can I think sometimes help faster and are good to use in conjunction with the other meds. Also when I was first diagnosed the rowasa enemas were really helpful.

I know how you feel about work, I will always have to work and carry the health benefits for my family (husband is self employed) and it's really just not an option for me, though my co if very understanding when I need to take time off for appts or a sick day.

This is a really great place, I have learned so much.

Hope you are better very soon!
Beth, 32
Major Flare Sept/Oct 07 ~ working on remission almost there
UC Diagnosed March 2000 (30 cenitmeters)
Azathioprine 200mg 1xday nightly;Hydrocortisone e's tapering, Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Probiotics.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60/40mg alt days 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Potassium 600mg 2xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.


saskia
Regular Member


Date Joined Dec 2007
Total Posts : 31
   Posted 12/5/2007 3:37 PM (GMT -7)   
Wow. You were hit hard by your first flare. It seems as if your GI decided to hit back hard, as mine did with my first flare: I also took 40mg of pred per day along with a substantial daily dose of mesalamine (5ASA) tablets. I started feeling better within 24 hours and improved steadily over the next 8 to 10 weeks at which point when I felt I was in remission or as close to it as I could get.

Staying positive is good. Part of staying positive is accepting that you will need to go through a learning process with your GI (and perhaps a bit with yourself as well). I was diagnosed 2 years ago and still am in the process of adjusting meds and figuring out which combination works best. But at least I feel I can discuss my meds somewhat knowledgeably now with my GI. I initially made the mistake of assuming that prednisone could and should be used every time I flared. I am not against pred per se; it is useful in some circumstances, but there are very real and problematic side-effects with long-term or repeated use, such as loss of bone density.

There are many meds to try - different 5ASA d
forms (and delivery methods: oral and enema/suppository). There are other kinds of steroid meds, such as Entocort, which has a reduced systemic effect as compared with Prednisone and thus a reduced level of side-effects, but it may need to be supplemented by a steroid preparation delivered rectally so that the entire colon is covered. There are also immuno-suppressant meds, which GIs often use in combination with the other meds I have mentioned if the other meds do not manage to get the UC under enough control.

A good relationship with your GI is important. While this necessarily involves a GI who listens to you and communicates well, I would encourage you to do research and become knowledgeable about UC and its treatment so that you can work effectively with your GI.

I, too, found the prospect of stopping work a non-starter, but I have also had to come to terms with the fact that some modifications to my working life (especially career aspirations) had to be made.

UC isn't the end of the world, but it does change your world somewhat. However, if you can be an active participant in determining which changes to make, you may perceive the changes in a more positive light.

And don't forget to laugh....even better, share a laugh with us at the predicaments we UCers find ourselves in from time to time.
*saskia*
pan colitis (diag: Nov 05)
Meds: salofalk7 to 10 tabs/day depending on disease status; imuran 75mg/day; entocort when flaring; cortifoam when flaring; pantoloc; VSL#3; vitamin D and calcium; fosomax


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 12/5/2007 4:08 PM (GMT -7)   
If you're in a pretty bad flare - and with a diagnosis of pancolitis, I'd assume you are - you're going to have to get past the "instant gratification" mindset. True healing to the point of remission may take a while and setbacks aren't uncommon. I don't mean to discourage you, but neither do I want you to have unrealistic expectations.

My best advice is to educate yourself. Learn all you can about UC, general digestive health and ALL of your treatment options... not just pharmaceutical meds. Here's a great article to get you started:

http://www.drhoffman.com/page.cfm/171


Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


AlabamaBabs
Regular Member


Date Joined Jul 2007
Total Posts : 172
   Posted 12/5/2007 5:07 PM (GMT -7)   
Hi Johnh and welcome to the board! Your 'story' sounds just like mine back in March of this year: two separate rounds of antibiotics for possible e-coli and then BAM, I'm off for a colonoscopy and find out I have pancolitis. I never heard of colitis before, only chrones. I was placed on Lialda (a 5-ASA mesalamine) and started feeling better within a week's time.

Stress caused me to flare only three months later and my Lialda dose went from two/day to four/day. I had another flare (possibly from antibiotic when I had sinus inf.) and was put on pred.

I will say to you as the others have: educate yourself and try to think on the positives, not on the life changing and alarming thoughts. I learned more from this forum and the google links for my medication and ulcerative colitis than through my GI. I will be honest and also say that sometimes I had to stay away from the forum, b/c what I read scared me, initially. You will also learn what foods work for you and what foods cause more diahrea, etc. You may change meds and doses. I wanted to fight my GI on the pred, but I now know it was for my best.

I believe I am truly in remission (and thank God to be off the pred, too). I don't honestly know how long this will last. I do know that I call my GI nurse a lot and that helps to get immediate gratification for me b/c she does listen and talk to my GI and calls me back that day.

I remember when I was first diagnosed, everything seemed to revolve around pancolitis. I can honestly say that there are days I don't even think about it! I like to keep track of how many soft stools or diahrea bouts I have per day, but some days I forget!! It will get better, so hang in there and keep reading and writing posts and learning!!
AlabamaBabs
Pancolitis diagnosed 5/07 
4 Lialda/day since 8/01/07
Started 40 mg. Prednisone for 2 wks on 9/16/07 and tapering by 5mg per week  40, 35, 30, 25, 20, 15, 10, 5, 5 every other day, 5 every three days, and DONE as of 11/26/07 for pancolitis.  Placed on pred pack for 5 days for bronchitis on 11/27 decreasing daily from 60mg, 50mg, 40mg, 30mg, 20mg, 10mg and 5 mg. 
 


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 12/5/2007 8:09 PM (GMT -7)   
Hey John

Welcome. I remember it all so vividly, even though it was 46 years ago when I was 15. It was during the Christmas holidays. I had been out ice skating. Came home and went to bed early cause I didn't feel good. After about an hour in bed, suddenly I had the worst cramping and diarrhea and it didn't stop. Twenty four hours later and it was getting worse and what was coming out of me was black. It scared my parents. I had had a minor surgical procedure for sinus problems so they took me back to the doctor who did that thinking it was a reaction to the med he put me on. He just said it was no big deal, told my parents to give me aspirin for the fever. A few days later I was worse and we want back and he did the same. By this time, I had lost about fifteen lbs and my dad took me to our primary. He took a look at me and put me in the hospital. By the end of the first week I had lost 30 lbs and needed six blood transfusions. And still it took two more weeks and what seems like a zillion barium enema x-rays to diagnose (there were no colonoscopies in 1961, at least not in my hospital).

I spent a full month in the hospital and on prednisone for a long time......high dose for a while and then mostly minimum. But the good news is that a year later I went back in to the hospital for a check up, or so I thought but my parents told me later that the doctors told them they believed my colitis was so hot and it was pancolitis that surgery was the answer. However when they did the test they were shocked that my colon had improved so much and was down to just left side. So that was the good news....it can get a lot better.

It never does go away completely but here I am at 62, having lived a normal life, went to college, taught school, family...the whole thing. I have mild flares a few times a year. And occasionally have had a HOT flare. For me, the older I got the less intense the flares.

Good luck and hang in there.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


JewelsOK
Regular Member


Date Joined Jun 2007
Total Posts : 364
   Posted 12/5/2007 8:22 PM (GMT -7)   
Welcome, John. Sorry you had to find your way here. My experience with UC is just with my kids (I have two with UC). My son took almost 2 weeks to see improvement on 40mg of prednisone. We ended up having to move his morning dose to closer to lunch as doctor thought the pred. was passing through before it could be absorbed (mornings were his worse time). He improved quickly from there.

I hope you are feeling better very soon and I am so very sorry about your diagnosis!!
Julie - Mom of Son 16 UC dx 07/02, Sulfasalazine, Imuran, folic acid, L. Reuteri, Zyrtec, Iron, Biotin, Vit/Min
& Daughter 8 UC dx 08/07 Colazal, Prednisone, 6MP, Iron, Vit/Min.


Robert.K
Regular Member


Date Joined Nov 2007
Total Posts : 137
   Posted 12/5/2007 8:47 PM (GMT -7)   
Hello John,

Lots of interesting information has already been shared with you from other patients of UC in here. I am kind of tired and didn't really anticipate posting anything this evening, but I will share a little bit and possibly add another post or two in the near future.

I am 25 years old, now. I initially begain experiencing symptoms of UC back in July or August of 2005. It started with always having an urgent and loose bowel movement every morning. Then the urge to go to the bathroom became more and more frequent and more and more urgent as time went on. By September, enough was enough and I decided to see my general physician. I had the standard blood and stool samples to check for common offenders, but the tests came back negative. So I was referred to a gastroenterologist and upon an initial brief "physical" examination, the specialist put me on 40 mg of prednisone per day with 2.8 grams of mesalamine (Asacol) per day. I wasn't very compliant with my medications, as at the time I had an irrational resistance and fear of medications. I was under the naive impression that I would be able to correct my illness through manipulating standard lifestyle variables and living more healthfully. This didn't turn out to be the case. Anyways, I had a flexible sigmoid endoscopy in October of 2006 and was told I had Crohn's disease. I think saw another specialist as the first specialist I had seen was older and implied that he would be retiring soon, and that I should seek out a younger specialist to monitor me over the long-term as this would be a long-term health problem for me. I had a small bowel follow through (barium enema drink) and colonoscopy in March of 2007 and was told I had ulcerative colitis. To make a long story short, I have been sick for the majority of the past two years and have yet to find a drug treatment that will hold me in remission. I guess my situation is towards to more severe end, but I am hoping that the next drug treatment I use (infliximab/Remicade) will be the answer to my UC difficulties.

To share experiences of mine that are more relevant to your current situation, I will tell you that I have used prednisone five times in the past two years for at least two months to control acute phases of my UC. I have also had mixed results with the prednisone. The first time I ever used it, I experienced significant relief within a short timeframe... I think I might have even felt "perfect" in regards to my colon health within 7 to 10 days. I did suffer pretty noticeable side effects, though. I felt very hot, like an internal sensation of burning, due to the stimulation of metabolism that prednisone has on body tissues. I also experienced hair loss and difficulty sleeping. Superficially, I had a big moon-face and felt bloated in the abdomen. It made me feel self-conscious. There was another time, though, that prednisone didn't really do anything for me at all. After using it for two weeks at 40 mg/day, I eventually ended up being hospitalized because my symptoms were so severe and I was losing a lot of blood and weight. I am currently on prednisone again to control another flare, tomorrow will be my eighth day on 40 mg/day, and I am having moderate success. My pain and frequency has decreased, but not as significantly as I would like. It is weird how prednisone has affected me differently during different episodes of its use. Just as I am experiencing not-so-impressive benefits from the prednisone this time around, the side effects are also less severe than I have experienced before during a couple of prednisone phases. I have little difficulty sleeping and feel much less of an internal burn this time around than before.

As for mesalamine (Asacol), I think it takes two to four weeks(someone please correct me if I'm mistaken) for it to provide you with a benefit, *if* it provides you with a benefit. Hopefully you will have strong relief from the Asacol and won't need to try out other medical options as Asacol is a very well tolerated and very safe long-term drug. Asacol provides me with minimal relief, and I have been using it for the greater part of the past year, as a dose of 4.8 grams per day (6 x 800 mg tablets, daily).

If you do need to stop working, temporarily, you can apply for employment insurance benefits to cover you. Hopefully you job can pay you some sick days, as well? Keep us up-to-date and I hope things work you quickly and relatively easily for you.

johnh
New Member


Date Joined Dec 2007
Total Posts : 7
   Posted 12/6/2007 7:47 AM (GMT -7)   
Thanks to EVERYONE for taking time to reply.  It helps so much just to know that I am not alone and there are others out there who can relate. I'm trying to be positive and do the best I can, knowing that it is not going to be an easy road....sometimes at night, when I can't sleep, I imagine myself drinking a large cold glass of chocolate milk (crazy, huh?)...it's weird how you crave things so badly that you KNOW are going to make you feel bad.....but sometimes, that's what cuts through the cramping pain.
 
I have been doing some reading online and educating myself, and my GI is very, very good and attentive.  I know I'm going to get better, and I'm going to keep telling myself that!!
 
You guys are wonderful.  Thank GOD for finding this forum. 
 
I'm sure we'll all be speaking again soon.
 
Good health to you all.

auntmoo
Regular Member


Date Joined Dec 2006
Total Posts : 43
   Posted 12/6/2007 4:05 PM (GMT -7)   
:-)  Hi, and welcome.  I too had issues of ' instant gratification'.  Wow, how soon you see that mentality has to go away.  I needed to learn patience and let meds work because I would stop and start and get upset and sad.  Finding a mixture of meds that help you feel well takes a while.  I am now learning that after a year and a half, slow learner..hehe  Hang in there and you will do well!

~ChristieAnn67~
Regular Member


Date Joined Dec 2007
Total Posts : 151
   Posted 12/7/2007 12:57 AM (GMT -7)   
johnh said...
 
 
Can anyone out there tell me their experience with the first diagnosis and how long it took for the medicine to "kick in?" 
 
Hi John,  i"m so sorry for what you've been going through...but believe me,  you've come to the right place.  We can all relate!      My first diagnosis came with what I thought was the "stomach flu".   But after several days of bloody diarrhea,  and being bed ridden with body aches,  fatigue, and some minor stomach cramps,  I began getting THE WORST stomach cramping I've ever had.   It was to the point I couldn't even move or take a sip of water without cramping so bad it would bend me over in pain.  Finally,  my team leader at work saw me when I came into work,  and sent me over to our urgent care center immediately.  Then it began,  the many tests....blood, stool,  flex sigs, and a colonoscopy with biopsy.   That first day,  they ran a sed rate, and while normal is somewhere under 20,  mine was like over 70.   So,  my doc put me on prednisone.   My symptoms began to improve within 24 hours.   Prednisone has always worked like that for me (at least until my last flare)....it was my best friend, and my worst enemy all in one.  I loved it because it worked so well, and so fast (and gave me energy). But hated it because of all the adverse side effects,  the night sweats,  insomnia, bone pain, moon face,  extreme hunger, etc etc.    Anyways, my biopsys showed left sided Ulcerative colitis.    Then, came the chore of finding a maintenance med for my colitis.   I couldn't be on prednisone indefinately, we use it only for acute flares.    I tried so many maintenance meds...sulfasalazine,  asacol,  imuran,  and 6-mp.  All of them gave me adverse side effects,  or didn't help my colitis at all, except for the 6mp...so I was on that for awhile, then when I began flaring again,  had to add something,  so he added pentasa.  I was doing well on it for awhile,  until Oct of this year.   I began a flare,  and my usual prednisone dose did not even touch it (which was a first for me),  so we upped the dose higher , and still I cont to worsen.  So he changed to a stronger steroid called decadron,  and still cont to worsen.  Finally ended up hospitalized on IV steroids,  was doing ok, but then back slid once again,  so then we started remicade.  And I began to improve.  Turns out, that my disease had progressed which is why the prednisone wasn't working I guess.   Anyways,  sometimes trying to find your best meds or combination of meds is a total trial and error procedure.  What works well for one person,  will not always work for the other.   All I can say is if you cont to have symptoms, and seem to worsen,  don't let it go.  Keep bugging your doc!!  Daily if you have to.  And definately educate yourself on meds, treatments,  and ulcerative colitis, read everything you can get your hands on.  You can never have too much knowledge.  It only empowers you!!    Good luck on getting better.  My fingers are crossed for ya!!   
~Christie 
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Medications
Remicade infusions ~ Nov. 2007,  6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg daily, Nexium 40mg twice a day, Lantus insulin 45 units daily, Novolog 10 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, and Calcium daily. 
                 
                                                     
 
 
 
         


quincy
Elite Member


Date Joined May 2003
Total Posts : 29852
   Posted 12/7/2007 12:02 PM (GMT -7)   
Hi John..welcome to the forum.
You could/should ask your doctor to add some rectal meds to the mix.

You're on prednisone....tapering will take a while..and you may have some regression of symptoms.

Eventually, you'll realise that the "want it now" way of thinking doesn't work so well. Learning patience will go a lot farther.

Is your UC throughout or limited?

I've never been on prednisone....just 5ASA meds ... Asacol (oral), Salofalk retention enemas (rectal). I learned patience with meds a long time ago...with the encouragement of my GI, who was right. It's paid off for over 18 years.

quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 4th night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!

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