symptoms are back :(

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dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 5/31/2008 8:41 PM (GMT -6)   
So most of you know the story of my recent flare - but for those who don't here's a quick recap:
 
Flare started out of the blue in March - FIVE days after meeting my new GI and feeling GREAT!  Steroids (40mg pred) weren't working, so doc had me admitted to the hospital for IV steroids and IV flagyl.  Three miserable days later, I'm feeling better and get to go home with a pred taper.
 
Well, now I've completed my pred taper.  about three or four days before I'm due to be done with at 40-30-20-10 taper, I miss my dose of pred!!!  Things haven't been good since then :(  I've been having urgency, loose bms, pink/red-ish mucous, increased bms, night bms (which never went away even while on pred), and cramping.
 
I know I need to call the doc on Monday.  I REALLY don't want to deal with steroids anymore.  I've still got moon-face.  I don't want to deal with the insomnia.  So, what's next?  Do I ask for Remi?  Do I wait for him to recommend it?
 
To add to all of this, my in-laws are coming for a 10 day visit and will arrive on Friday.  We've recently purchased a boat, and as my sunburned self will show, we've spent a lot of time on the water.  I don't want my wakeboard season ruined because of a crappy flare!!!  Grrrr...
 
Advice?
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30407
   Posted 5/31/2008 10:09 PM (GMT -6)   
Seems there's lots going on. Any 5ASA you're able to take?

Can you not use steroid enemas?

Please use mega sunscreen since you're on Aza.

Up the probiotics?

Hope you feel better soon.
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/1/2008 6:17 AM (GMT -6)   
I agree with Q Dawn - maybe you should try the enemas instead of resorting to Remi. Maybe a course of either Rowasa or Colocort will help you get back on track until you finish your taper. I'm sure you know, but if in the event you use Rowasa to get you back on track. Did you know that these can also be used as a maintenance med? It can help keep things quiet in the sigmoid/rectal area to prevent further upset. So hopefully the pred helped your Pan heal and now it's only rectal - sigmoid(ish).
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/1/2008 6:26 AM (GMT -6)   
that's too bad.....maybe you could try the steroid enemas? I personally would go right to the big guns & ask about Remicade... it doesn't seem that there's any benefit in putting the biologics off anymore, medically speaking. Generally when this hapens, the doctor will increase your pred dose for another couple weeks, then try to taper again. Since it's only been 5 days since your last pred dose, it doesn't really bode well for a future taper. And since you don't want steroids again, & you're on the max 5ASA dose plus the immunosuppressor, the biologics are the next step. Whatever you decide, I truly hope you feel better ASAP! Those diapers don't look too cute with a swimsuit...hahaha!!!!!! kidding! cool
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/1/2008 1:17 PM (GMT -6)   
I did start the Rowasa again last night. I was actually able to retain it - unlike earlier in this flare. So, I'll use it again tonight, and call the doc in AM to see what he suggests.

Yup, I'm on the max dose of Asacol. When I got out of the hospital, they upped my Aza from 75mg to 100mg. I don't think there's anywhere for me to go from there with these meds.

Q - thanks for the reminder about the sun and the Aza. I had forgotten. I'm a red head with fair skin, so I normally use a ton of sunscreen, but right now I'm burning through a 45 SPF which I reapply often. Yesterday I was even wearing a rash guard shirt that has SPF in it and got a slight burn. The tops of my hands even burned! Should be better after next weekend - the bimini (giant sun umbrella type cover for the boat) is being installed.

There always seems to be a lot going on in life... Thank goodness for big water toys! Such a relaxing way to spend a day.

Thankfully, if there is an urgency issue while on the boat, I can always bail into the water. Won't be such a fun clean up and could be embarassing as we usually have other people along - but it would work! Also, since we're wakeboarding, my board shorts cover up a lot more than a regular swimsuit bottom :)

I'll let you know what doc says tomorrow. Until then - prepping for the visit from the in-laws (whom I get along with famously - thank goodness).
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/1/2008 7:10 PM (GMT -6)   
Ya know Dawn, when you mentioned you got a boat that is exactly what I was thinking - your poor fair skin doesn't stand a chance! :) After you burn, do you at least get to retain a tan?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30407
   Posted 6/1/2008 10:49 PM (GMT -6)   
You're a bearcat for punishment. The risk is high for skin cancer...please be very careful.

q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/2/2008 5:54 AM (GMT -6)   
I just thought of something. My dermatologist recommended this sunscreen b/c it has zinc oxide. Anyway it is "Blue Lizard." It has a 30+ spf and says on the tube "very water resistant and good for sports."
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 6/2/2008 5:58 AM (GMT -6)   
I looked over this post, almost everyone is talking about med.
I strongly believe that you must approach the problem from all sides.
Diet should be very limited, brown rice,potatoes, root veg, chicken, spinach(I read it here, it is great).peeled pear, bananas.
NO SUGAR OR REFINED FOOD!!!
iron, Advantage Digestive (highly recommend) fiber pills, and very important - PROBIOTIC !! (VSL#3 is the best)
Give it a try for at least 1-2 months.
My son started to show signs of remission. Thank G-d.
Good luck!!!

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/2/2008 6:53 AM (GMT -6)   
Hey Dakota,

I am so sorry you are going through this. I am doing the steriod e's and some days I think I am getting better and some I think I am getting worse, I just don't know. If I am not significantly better, I have to call my GI this Wed (will have been on the e's for two weeks) and I don't want to go back to a high dose of pred. I am on 10mg right now.

I'm on azathioprine and my next step is remicade, I already passed those tests but I am afraid to try it, b/c if it doesn't work then I have to go the surgery route, which I am not ready to face yet.

Before doing that I do want to get a second opinion.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/2/2008 7:31 AM (GMT -6)   
Tan? What's a tan? The closest I get is the freckles merging together! Well, I get a very light tan, which looks like my husbands skin tone when he hasn't had sun for months... I'm very anxious for the bimini. I was BUMMED when we couldn't get it put on this weekend.

Tab - thanks for the blue lizard tip. I'm going to check at my local Walgreens for it.

Beth - yes, I fear going back on pred. I'm so sick of the side effects - thin skin, loss of hair, acne, sensitive teeth, insomnia, mood swings, etc. The rollercoaster (feeling better, feeling worse) is just wearing me out!

Time to call the GI and leave a message for his nurse...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/2/2008 9:14 AM (GMT -6)   
Okay - talked to the doc. He gave me two options. 1-Back on the pred at 20 mg for a S-L-O-W taper and increasing the Imuran. 2-Remicade. I voted for 2.

Now I'm freaking out!!! I know it's the best choice for me, because the pred is destroying my body. I also know that Remi has worked wonders for other peeps. I just hope it does the same for me... I'm okay with this, but for the next hour or two, I'm going to freak out.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/2/2008 10:00 AM (GMT -6)   
Don't freak! When does he want you to start? Will you keep taking the Imuran?
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/2/2008 10:12 AM (GMT -6)   
He's going to have the nurse call me back - I'm guessing they'll schedule things soon. I don't know though - they might have to deal with my insurance company first. Although insurance has been pretty darn good with working with me - they didn't say much about my hospital stay.

I'll stay on my current meds for a while - then taper down. Down to what? Not sure yet. I am a bit concerned about being on the Imuran along with the Remi - that's where I've read the lymphoma would be from... I'm making a list of more questions to ask.

The freaking out part has has passed. It was pretty short. I just want to feel "normal" again. This being scared to go to the bathroom because of seeing blood and having pain is getting old!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/2/2008 10:19 AM (GMT -6)   
Good! Definitely make a list of questions for the nurse/doctor. That way when she calls back you are prepared!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/2/2008 6:47 PM (GMT -6)   
Waiting for the Remi appt until they can get some insurance stuff straightened out. Sigh... I hope it doesn't take long and I can get it early next week. BMs are painful. Will keep up with the Rowasa for now. Gosh I hope something helps soon!

I picked up the Blue Lizard sunscreen this afternoon. Going to try that next trip to the lake!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Getting close to remission!?!?!
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 6/2/2008 7:10 PM (GMT -6)   
One other point I wondered about: is Asacol the best oral 5-ASA for you? Is there a chance that Colazal or Lialda could help more to reduce your inflammation? For example, Judilyn got her break-through taking Colazal with Remicade-- right? Beaming positive vibes your way, & do take care with the sunblock, eh??? / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/2/2008 7:46 PM (GMT -6)   
Old Hat: I did try Colazal when I was initially dx'd. It did nothing for me, except give me some yellow liquid poo! I have been on Asacol since Sept '03. Maybe after 4 1/2 years it's losing it's effectiveness? Sigh... I just don't know anymore. I really thought the Imuran and Asacol combo was my miracle drug combo... I did have a good year with it - almost to the day! It was within a couple of weeks of when I came off of the pred in 2007.

Thanks for the positive vibes - I'll take any I can get right now.

Sunblock and I are trying to be good friends! I think I really need to dig out my water resistant watch and set an alarm for every hour or 90 minutes to reapply. But who knows - maybe with the addition of the bimini I'll be okay.

I'm really trying not to second guess everything right now. Maybe I should try another pred taper (my teeth are begging me not to) - maybe it was something I ate (although food doesn't seem to send me into a flare) - maybe I moved around too much - maybe I didn't sleep enough - maybe I took my meds an hour too late - maybe if I hadn't have missed that ONE dose - maybe this - maybe that... Every time I catch my self in the maybe - what if cycle I tell myself to STOP! It doesn't do me any good. I could try any number of different combinations and each and every one could end up with the same result. Or maybe because this disease is what it is - crazy! - one combination could work one time and not the next. The frustration!!!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


quincy
Elite Member


Date Joined May 2003
Total Posts : 30407
   Posted 6/3/2008 12:50 AM (GMT -6)   
Are you still using the Rowasa?
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~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 !!!


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 6/3/2008 5:01 AM (GMT -6)   
I know what you mean about the what if game. I have been doing that myself lately. Good luck with the Remi, you are gonna have to come tell us if and when you have it. I'm curious if this will be your magic bullet as it has for so many others.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Allergies-Singulair
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections
To help Healingwell - click here: DONATE
 
 
 
 

 
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/3/2008 7:13 AM (GMT -6)   
I am using the Rowasa - last night was night three. No improvements yet, but I really wouldn't expect any after three nights. I'm really just trying to hold myself together right now.

I'll continue to update about the Remi as I find out more. I know that before I can get it, I have to have a chest x-ray and TB test.
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5167
   Posted 6/3/2008 10:35 AM (GMT -6)   
Yep, I know someone with Crohn's colitis who does extremely well on Imuran-Pentasa combo. It must be your right-side inflammation that makes Colazal ineffective. Hang in there! You did have a period of upheaval moving, which is a known stressor even to totally healthy folks. Pat yourself on the back for trying valiantly to stay "caught up" with everything & stay as positive as you can. Hope you'll get another good UC break real soon. We're all rooting for you! / Old Hat

dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/4/2008 8:16 AM (GMT -6)   
I had the first part of the TB skin test this AM. Will be "read" on Friday AM. Need to have a chest x-ray as well. Hopefully the Remi treatment will be next week. Not exactly what I want to do while my in-laws are here, but I really don't want to feel crappy while they're here either!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/4/2008 9:21 AM (GMT -6)   
I may be right behind you but want to increase my pred first. uuugh! Teeth sensitivity stinks!

Let me know how everything goes!!!!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/4/2008 6:37 PM (GMT -6)   
Well, I picked up the orders for the chest x-ray. Will do that tomorrow AM. Also had some paperwork to sign after reading all of the - BEWARE! stuff about remi. Crap - I don't care right now! I just want to feel better.

The nurse thinks it will be at least a week before I can get in for the infusion :( So, I might have to do the pred again just to survive another week. Today was AWFUL! I was at a client site, in a meeting, my boss was there too, and I had to ask - in the middle of the meeting - WHERE'S THE BATHROOM - and bolt!!!! Didn't make it in time - thankfully just a tiny accident. Wrapped my undies in TP like a panty liner and went back. Sigh... Thank goodness for extra undies in my purse and I was able to change when I got back to the office.

The cramping is awful and my bentyl isn't touching them. It's been over 8 bms so far today - lost count... No appetite - don't know if it's just the disease or my fear of eating and being too far from a potty (BTW - doctor's call that anorexia).

I'm very glad that I made it through another day! Tomorrow should be busy. I hope to survive it too!
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate

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