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Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 6/6/2009 9:47 AM (GMT -6)   
I'm new to this and I was just hoping for some advice. I've been following things on here for a couple of months and alot of the information has been invaluable.
After 8 years of being told I had IBS, and haemorrhoids (maybe I wasn't pushy enough), I have developed fistulas, which I was referred to a colorectal surgeon for, I explained my history and and after a proctscope I was referred for a flexi-sig (mar 09), the biopsy results came back as severe ulcerative proctitis.
My symptoms are mainly mucus, occasional blood, frequency(approx 10 times a day), abdo pain, horrendous wind and very urgent urgency! I occasionally get diarrhoea.
The surgeon started me on two weeks of colifoam enemas and 800mg of asacol TDS indefinately, I also started myself on a probiotic, and zinc supplement. I have experimented with my diet and eliminated alot of wheat from my diet I am also uable to tolerate any fruit or veg at the moment. Against my better judgement he stopped the enemas after two weeks without tapering and the symptoms (although not fully resolved) returned with avengance. I saw the surgeon again on the 22nd of May, he held his hands up and said that he would refer me to a GI medic and restarted me on the enemas, I have been scheduled for surgery for the fistulas on the 15th of July.
I saw the GI medic on the 4th of July, he has discontinued the colifoam enemas and commenced me on 30mg of oral pred daily, tapering over a month, 1g pentasa supps nocte, and the asacol continues. He requested a poo sample to rule out infection, although he did admit this was unlikely. I have also had routine bloods taken and my blood clotting factors are slightly elevated (I understand that the asacol can do this), also my c-reactive protein and ESR are elevated (again, to be expected?), otherwise they are normal.
I was wondering if tere was anything else that you could suggest that may help.
Many Thanks.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 6/6/2009 2:41 PM (GMT -6)   
Hi....welcome to the forum!

I'm not getting why the doc put you on prednisone rather than on a 5ASA enema. But, doctors do that.

Where is the fistula to/from?

It's possible you may eventually be diagnosed with crohn's rather than UC since fistulas are more related..although not unheard of with those without UC.

It's good you're seeing a GI specialist.....do your homework regarding fistulas and surgery, UC/CD meds...make a list of questions and work with the doc to find the best med regimen for you.

Both inflammatory disease and meds can cause some increase in liver enzymes....if it persists, then other tests should be done to eliminate/focus on what could be going on.

Keep us posted.

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 6/6/2009 5:28 PM (GMT -6)   
The surgery is to determine where the fistulas track to, they track from around my bottom hole and there are palpable collections behind them, there are currently three of them, but no involvement with the sphincter (which is a relief). The surgeon said they will send specimens to elimnate the possibility of chrones, although he assures me my bottom does not look like a chrones bottom!
I am only 2 days into taking the oral pred and my tummy already feels more settled, however I am slightly concerned as today I have passed some blood clots, which is a completely new thing for me, is this normal?
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009.
Currently taking, 800mg asacol TDS, 1g Pentasa supp at night, 30mg pred (tapering over one month)
Probiotics, zinc supplements, Cod liver oil.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 6/7/2009 1:07 AM (GMT -6)   
Hi....yep, the bleeding would be normal if there is inflammation that's moderate to severe...unless you do have hemorrhoids?
The clotting could be mucus increase with blood in it...and if your frequency has subsided a bit, then the blood may pool/stay in the rectum longer compared to before, therefore looking more like clots.

It seems you are improving with the meds, and it's good your tummy is slightly better than it was. Low in the rectum "assult" can have tummy issues like nausea and pain more so than when inflammation is additionally farther up causing diarrhea.

I have a friend with what's called fistulising (fistulizing) crohn's...with multiple fistulas as well. She's had a few different surgeries, I think some have healed, others not...but because she has this particular type of CD, they're going to be a part of her life. She's my hero, truly!

She also does have an area of CD higher in her colon...so flaring is like a double whammy.
She's on Remicade (but not on a regular schedule), methotrexate, plus Asacol and a rectal steroid foam. On occasion, I think she requires metronidazole and other antibiotics.

All cases are different, however....and she has a very good doctor. Interestingly, the anorectal surgeon didn't even notice the fistulas....d'uh! She had to point out the possibility.


Please post after your surgery if you're up for it.....I'm interested in how you're doing.

quincy
*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Sore Tum
Regular Member


Date Joined Jun 2009
Total Posts : 144
   Posted 6/7/2009 2:29 AM (GMT -6)   
Thank you quincy, I have to admit the prospect of surgery and a potential diagnosis of Crohns is making me very anxious.
I had made my peace with it being UP, I'm guessing the management doesn't differ too much?
Just a question about the pred, I'm getting some lower back ache (kidney area) and my lymph nodes (neck and groin) are up, is this too normal?
30 year old, female.
Diagnosed with severe ulcerative proctitis, Mar 2009.
Currently taking, 800mg asacol TDS, 1g Pentasa supp at night, 30mg pred (tapering over one month)
Probiotics, zinc supplements, Cod liver oil.


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 6/7/2009 3:21 AM (GMT -6)   
Hi...I don't know if it's normal regarding pred regarding experience because I've not been on it.

You could put out another question regarding pred side effects regarding kidney and lymph nodes.

The other possibilities is that you may have an infection (with the fistulas or something else going on) and the pred hasn't been in your system long enough to suppress the symptoms...which is a good thing if it is an infection elsewhere, or you're fighting off something like a virus, etc.  So much going on "out there"....easy to pick up.

I think that's one thing for sure you should call the doc about on Monday  to possibly get it checked out asap.

Depending on what you have and if you can get it controlled I think determines management. Yes, most meds are the same for UC/CD...again, depending what one's needs are and what meds one can or cannot take.

I too would be fearful of the surgery, the healing can take some time from what I remember of my friend's surgeries, depending on what happens during the procedure.

You have a lot going on, and I truly feel for you. I hope you have good family / friend support through this.

At least you're under good care and things are being dealt with.

I again urge you to do research on fistulas....as well check into the CD forum on Healingwell and enquire regarding fistulas with CD, medications, surgeries..etc. There are a few who have experience to share I'm sure.

The waiting is truly the most difficult, but I do hope once the doc knows what's going on that your treatment regimen will be underway to have you feeling better soon.

quincy


*Heather* Status: mild flare enemas tapered to every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

Post Edited (quincy) : 6/7/2009 2:26:02 AM (GMT-6)

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