My introduction/experiences

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Chester_Lampwick
Regular Member


Date Joined Dec 2008
Total Posts : 53
   Posted 12/17/2008 10:27 AM (GMT -6)   
I'd like to introduce myself.  My name is Roger, and I'm a 36 year old caucasion male from Hamilton, Ontario, Canada. I was previously very healthy, never suffering from any kind of chronic illness. My experience started very suddenly in July 2006. One evening I was wiped out with flu-like symptoms. The next day I was fine, except that I had frequent painful gas episodes that smelled like nothing I had produced before. Odor changed from sharp cheese to rotting produce. There definitely was a distinct increase in volume.  Hard to describe but the location of gas seems to be at my belt-line rather than my bum as it was previously.  I started having around six liquidy poops per day with but rarely any blood. I did note that at the time there were legionnaires disease outbreaks in my city as well as  C. Diff problems in our local hospitals.
 
I tried to deal with this for three months before seeing my doctor.  She ordered a tool sample.  I guess the tests didn't indicate anything that my GP could treat. She referred me to a GI specialist, which took several more months (March 2007 I believe).  It took a few more weeks to be scoped. They specified Go-lytely as the prep, which  is terrible. I had to send my wife back to the pharmacy to buy Pico-Salix, which is great.
 
The results of my scope were that I had Ulcerative Colitis the entire length of large intestine. I was prescribed 2x500mg Salofalk 4 times a day, tapering to 2x500mg Salofalk 3 times a day. My impressions of  Salofalk?  Oh my god, what's with the purple stains around my toilet?
 
During my follow up Aug 21, 2007, the Salofalk had just started working.  After about three weeks, I had an almost  solid BM.  So, perhaps my GI assumed I was going into remission.  No future appointment was scheduled, but she was very clearly going to be on maternity soon.  My symptoms have continued to be only slightly less than what they were originally.  I guess I'm still flaring after about 30 months.  I still wake in the morning having to get to the toilet as the first order of business, and not to pee.  I usually have to go again before I leave the house for work.  I'd say I'm still around six diarrhea episodes a day, but I can go to an all-day event and not have to move my bowels once. Also, what keeps me from getting up during the night? Is there a brain/body connection?  
 
Other things make me wonder if UC is the cause or effect.
 
Previously I had hypertension and phantom chest pains. Panic attacks perhaps?  Also, have neck aches, and dry skin.  I have always had stressful conditions. During my teen years, I had insomnia. I have (undiagnosed)parauresis, or shy bladder syndrome. Is there an anxiety connection, and is UC my latest outward symptom?  Should I be seeing a therapist?
  
I have had less frequency and firm stools after taking Zithromax for bronchitis on two occasions. The sudden onset of UC makes me think I was "infected". I've read an IBS book by Marl Pimentel that dealt with SIBO. I believe I have/had this, even if IBS is not IBD, antibiotics do make me feel better.  I tried show this book to my specialist, but she dismissed it without looking, claiming some people are quacks.  I should have pressed this further, as Pimentel is the Director of the Gastrointestinal Motility Program and Laboratory at Cedars-Sinai Medical Center. I'm sure that's good credentials.

I am getting a little tired of having to deal with this, so I tried to book an appointment with my GI.  Since I haven't seen her in over a year I have to be referred by my GP.  So, it's going to be February before I can get in. Kinda frustrating.

Male, Age 36
UC since July 2006 - entire large intestine
_____________________________________________________________
Current Meds:
2x500mg Salofalk three times daily
 
 

 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 12/17/2008 2:50 PM (GMT -6)   
Hi..welcome to the forum! I was 34 when diagnosed. It totally sucks.

One thing I'm disappointed about is that your doctor didn't prescribe you any rectal meds. Call, request a prescription to try the Salofalk retention enemas to be used at night. Get refills...use them till you're NORMAL...then start tapering.

DO NOT go for the prednisone the doc might prescribe or for him saying that rectal meds don't treat the entire colon.

While I don't have pancolitis....my UC flares are very minimal. I've used 5-ASA meds for 20 years, and my doctor has never even prescribed me pred once.

Please consider a long-term plan. You do react well to 5-ASA meds...continue the ride with also using the rectal meds. If you are willing to the commitment..they can serve you for a very long time.


Do try a fibre supplement to help keep your colon in good condition.
Do get on probiotics.
Do ask the doc for dicyclomine (I started with 10mg) which is an antispasmodic to help with those throbbing/cramping/spasming issues.

My take on it...welcome again to the forum.

quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


Chester_Lampwick
Regular Member


Date Joined Dec 2008
Total Posts : 53
   Posted 12/17/2008 2:59 PM (GMT -6)   
Thanks Quincy.

What are rectal meds exactly? It sounds kind of gross. What's involved? I definitely want to try the antispasmodics. Is that a common treatment?
Male, Age 36
UC since July 2006 - entire large intestine
_____________________________________________________________
Current Meds:
2x500mg Salofalk three times daily
 
 

 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 12/17/2008 3:17 PM (GMT -6)   
the antispasmodics are not a treatment...per se...they help smooth the gut spasming, stomach spasming, the rectal spasming. They will not help the inflammation, but they will help the discomort...BIG TIME!! for me anyway...yep, I've used them for the 20 years as well...

The rectal meds..yes, yucky and I still grumble when I use them just because..lol.

The Salofalk (in Canada) comes in liquid form and suppository form. Don't waste your time with the suppositories unless you're using them for tapering or fur supplement or very low in the rectum inflammation that's stubborn. I hate them, oh, and they leak if heaven forbit you have gas. ugh.

I use the 4g dosage. It's about 3 ounces of liquid that's inserted into the rectum via the anus. Lay on your left side, relax, insert the nozzle fully, squeeze the contents at a steady rate, withdraw and cap it again, wipe your butt with toilet paper, lay in the position for half an hour.

You may experience the urge to purge....you may have nausea...just squeeze the butt cheeks and white-knuckle through it. It will subside.

You may experience gas in the night..more like a concentration. In the morning, your bm may be more explosive and PU!

If you can retain it for at least a half hour after doing it...that's great. I was able to retain all night from the start, but have expelled 3 in the 20 years, but after the half hour mark.

Do a search on Salofalk enemas.

They do have to be tapered...I have a process that works for me...tried a lot of different ways until I recognised my butt makes the decisions for me..lol!

Hope this helps.

Oh, do you have a copy of your biopsy results? If yes..what does it state?


quincy
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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 !!!
 


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 12/17/2008 4:47 PM (GMT -6)   
Except if there is no inflammation in the rectom then rectal meds really won't do much of anything and rectal meds are just that, they treat the rectom and even the foam doesn't get far enough up to the colon to heal it. It needs to be clarified first if there is proctitis involved (inflammation ofn the rectom) before using rectal meds, because using rectal meds without inflammation will not guarantee that proctitis will be kept at bay.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30586
   Posted 12/18/2008 4:05 AM (GMT -6)   
entire length of the colon would mean rectum involvement. UCers...and I'll say 99.9% to save face, have rectal involvement.
*Heather* Status..Asacol 6 (3 twice daily); enemas every 5th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate)....1 each  @ bedtime
~various digestive enzymes as needed
~Ranitidine (reflux);  Effexor XR 75mg(depression);  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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