worsening symptoms - what meds are next?

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Annie76
Regular Member


Date Joined Jul 2007
Total Posts : 66
   Posted 10/7/2007 12:39 PM (GMT -7)   
Hi again,
I have currently been in a flare since April.  I do have good days and bad but I go to the bathroom between 15 and 30 times a day.  I can't get the bleeding under control, my bm's are soft but mostly formed but before the bm's come, I poop almost a liquid.  I got a notice in the mail that I am due back for a followup appointment with my GI and I am scared to death of what meds he will put me on.  Always before the Asacol and Rowasa worked in eventually putting me into remission but I can't seem to get on top of it this time.  I don't feel I should go on Pred.  I am already over- weight and trying hard to lose.  I have the beginnings of osteopena and don't want to risk further bone loss.  Everyone I talk to has a different opinion of what I should do but of course, they don't have this disease.  It is all so confusing!  Does anyone have suggestions on what meds my GI will suggest when I go for my visit?  To top it all off, I have a hernia and have to have it operated on.  What a mess.  Sorry to be such a drag but I have had enough!
left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years
Current UC Meds:  12 Asacol per day
                          1 Rowasa enema at night
 
Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules
 
In a flare since the middle of April


quincy
Elite Member


Date Joined May 2003
Total Posts : 29843
   Posted 10/7/2007 5:57 PM (GMT -7)   
Hi Annie....when is your appointment with the GI?

When your symptoms increased about a month ago...were you on the ASacol at that time?
Did you start the Rowasa at that time as well...or were you on them nightly and then start to have flare symptoms.

If the Asacol and Rowasa were to be working...they would have put a dent into the amount of bms you're having daily. Seems not to be the case if it's up to 30...and increased steadily throughout the month.

Are you still dizzy?

It seems more is going on with no symptom relief since being on the 5ASA. It could be that you're sensitive to the 5ASA. It could be that you have a gastro infection.

You should get stool samples checked and maybe the latest information that's been presented on the forum....for Fusobacterium Varium.


quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd 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 !!!


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/7/2007 6:11 PM (GMT -7)   
Usually the next step, if 5ASAs are not working, is immunosuppresants - 6MP or Imuran. Yes, the idea is scary. These are big drugs and the choice to take them is not to be taken lightly. It means regular bloodwork to check kidney and liver functions. However, for some people, like me, they are a great thing! I found I was steroid dependent and the 5ASAs themselves were not working for me. After a month of hemming and hawing and reading posts and asking questions, I decided to go for it. Another thing - they don't work immediately :( They take 3+ months to build up in your system and work properly, so usually during the wait, some prednisone is required to tame symptoms.

While on pred you should make sure you're taking 1500mg of calcium with vitamin D and doing some weight bearing exercise to combat the bone density loss.

Don't get all worked up. Discuss your fears and concerns with your doc. (Ask about Quincy's suggestions too.)
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Annie76
Regular Member


Date Joined Jul 2007
Total Posts : 66
   Posted 10/8/2007 7:01 AM (GMT -7)   
Thanks for your input. I will definitely ask to have stool samples taken. I have been on the Asacol for years. I upped my dosage to 12 pills daily in June. The Rowasa was also started in June. It seems like recently I have had more gas and it takes about an hour or so in the morning to actually have a real BM. I go to the bathromm several times prior to that but it is just a mucous/watery mix. I had a few suppositories left over and for the last three nights I have used them. There seems to be less gas.
left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years
Current UC Meds:  12 Asacol per day
                          1 Rowasa enema at night
 
Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules
 
In a flare since the middle of April


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/8/2007 11:09 AM (GMT -7)   
The next step is not necessarily immunosuppressants. Have you ever used hydrocortisone enemas? Those do not have the immediate systemic effect that Pred or other oral steroids do on the body, but they can bring fast topical relief to left-sided UC suffering. It depends on how far up your inflammation goes + its severity. If the descending colon is severely inflamed, it could take 3 months of daily Cortenemas to bring that to remission. (Been there / done that!) / Old Hat (nearly 30 yrs with left-sided UC; currently on 5 Colazal daily for July flare in descending colon; should be back in remission again soon)

Annie76
Regular Member


Date Joined Jul 2007
Total Posts : 66
   Posted 10/8/2007 11:48 AM (GMT -7)   
I have never used the hydrocortisone enemas. Do they have any of the side effects of oral pred? I think only the first 35 cm. of my colon is affected by UC. Thanks so much for the suggestions, everyone.
left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years
Current UC Meds:  12 Asacol per day
                          1 Rowasa enema at night
 
Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules
 
In a flare since the middle of April


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 10/8/2007 2:14 PM (GMT -7)   
I have never used the steroid enemas, so I forgot about those - Thanks Old Hat!

Annie - about the gas... Just making sure that you're expelling the air from the enema bottle before administering. If no, the excess air could be contributing to gas.

Another thought: I found I had more gas with the Rowasa the more my colon healed. It was kind of a hint to me to start tapering or using less than the full amount - half the bottle, perhaps.

From what I've heard - the steroid enemas do have the side effects of oral pred, however, since your body is not absorbing so much, the side effects are less or take longer to come into play.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Annie76
Regular Member


Date Joined Jul 2007
Total Posts : 66
   Posted 10/8/2007 9:26 PM (GMT -7)   
I don't think I have really been healing very much. I still have blood and mucus. I am going to try to use one of the few remaining suppositories that I have left tonight. They seemed to agree with me better right now and produces less gas in the morning. Does anyone ever use pills, enemas and suppositories in conjunction with each other? I just really don't think I could handle pred. - for many reasons.
left-sided colitis diagnosed after 3rd pregnancy 11 years ago: was in remission for 5 years
Current UC Meds:  12 Asacol per day
                          1 Rowasa enema at night
 
Other Meds:  Lipitor, Multi-vitamin, asadophilus, cinnamon capsules
 
In a flare since the middle of April


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 10/9/2007 9:24 AM (GMT -7)   
If your inflammation is in the 1st 35 cm., then the steroid enemas could well be your ticket. In my experience, relief from bleeding/mucus/urgency was fast + the main side effect I noticed came about 2 months or more into treatment: thinning hair. One has to taper the enemas if on them longer than 3 weeks; you cannot quit the hydrocortisone jobs cold turkey at that point. But-- the gastro might offer you the option of Budesonide enemas, a steroid that has much less systemic effect than hydrocortisone. So-- I'd say don't be afraid to consult the gastro if your current meds are not relieving your symptoms-- there are other options besides Pred out there. / Old Hat

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 10/9/2007 10:14 AM (GMT -7)   
Hi Annie,

I love the rowasa enemas but can't take them, try those first. For my first meds, I was on sulfasalazine and rowasa and the rowasa got me better in the first few days.

I just started hydrocortisone enemas 1.5 weeks ago and after a week noticed some difference in getting better, a couple of green stools mixed in w/my red ones and have had less urgency. So far today I have only had 4 bms (since midnight) and none since I left the house this am. I want to jump for joy (but am too tired = ). I would say bm's went from 15-25 to 10 to 15 and today only 4 so far...........yippee!
Beth, 32
UC Diagnosed March 2000
Hydrocortisone enemas 1xday
Lialda 2.4mg 1xday since 8/24/07 ;prev. Asacol 4800mg day,Calcium and Vit D 500mg 3xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20mg 1xday, Diovan 80mg 1xday. Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.

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