To many changes in one day?

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unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/8/2009 10:29 AM (GMT -6)   
Okay... Not having a good day.  Had been doing so well.  Had my first round of D in I don't know how long.  Wondering if I made to many changes to fast?  Pharm recomended I switch probiotics, so I did yesterday, started to back off on the spinach yesterday also. Yesterday was first day of skippin having my can of spinach a day.  ALso Doc wanted me to taper another 5mg of pred yesterday.  Hopin it was just to many changes at once and my body will level back out tomorrow? 
Hate this disease, want to be in remission so I can get my life back.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


quincy
Elite Member


Date Joined May 2003
Total Posts : 30585
   Posted 1/8/2009 10:36 AM (GMT -6)   
you're definitely making a lot of changes, but you want a specific outcome. I think that's what will add to your distress.

It's not that most of us don't go through it, however.

You're tapering pred. While I've never been on it, I would think it would lead me to become obsessive....

Micromanaging yourself will only lead you to more frustration, because you're not a good test subject at this time.

Hang tough and kind of chill for a few days...like a cat...haha. Don't go running aound thinking it's this, no, it's that, what about this, have to do that??? If you know what I mean.

Are you doing the Rowasa as well?



q
*Heather* Status..Asacol  (3 twice daily); flaring since Dec 22, tapered every 2nd nite (Jan 3)
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls, Natural Factors Ultimate).... @ 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 !!!
 


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/8/2009 10:44 AM (GMT -6)   
Definitely try not to change too much at once and maybe go even slower on your pred taper.  Like Quincy said, try not to micromanage.  Try to measure your progress over longer spans of time rather than day to day.  You're still doing better than ever, you're just having a setback.  I've had plenty of setbacks on the spinach diet, but its still (overall) been steady progress.  Wait another couple days see if it isn't still better than, say, the last couple weeks. 
 
Also, remember that even a totally a healthy person can have a bout of D.  Maybe it was just something you ate...
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower & Low-residue diet.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Near total remission
 
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/8/2009 10:54 AM (GMT -6)   
quincy.... yes doing the rowessa.

changes all just seemed to come at once. it was time to go to every other day of the spinach, because of the redness I was getting on my face head and shoulders. Ran into my old pharm who I really trusted and was tellin him what was going on, and he recomended a new probiotic. whats weird was the new place he works doesn't even carry it, but he still swore its the best, had to go back to where he used to work to get it. And my GI has me call him every ten days to give him an update and since I was doing so well, he decided to drop me 5 on the pred. It didn't even dawn on me till this morning that this was alot of changes at once.

Kiss520... something I ate? Means I can blame it on the GF's cookin? I normally do all the cookin because I like to, but last night she wanted to. So... Guess I can blame her. LOL. Actually the meal was quite good, but hey if I can blame her....

Either that or its the stress of this dang dog not eating the cats. LOL
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 1/8/2009 11:05 AM (GMT -6)   

Tapering Prednisone can make you feel worse indeed. You may have more symptoms while tapering and the body needs to get used to the new dosage. It is pretty normal - I had the same! Tapered down when I was feeling better for a longer period of time and then more symptoms started and I got really frustrated. So hang in there! If it is the pred, it is going to get better on its own. Give it a few days and see how you are faring. I can only second the notion: Don't stress out and be patient! I know it is so hard to do, but stressing over things and "micromanaging" (great word!) will drive you nuts, analysing everything, comparing on a day to day basis ... nuh-uh! Also, starting a new probiotic can make the D worse.

Hope you feel better soon - hang in there and try not to think about it, just relax and see where it brings you! UC really really teaches you patience.

Scarlett


Scarlett, 38 yo., TX
Pancolitis since 3/1997
Worst flare of my life from 8/2008 until mid 12/2008 - bye bye flare! Was about friggin' time ...
 
Meds
6 x Asacol a day
0 mg Prednisone (stopped Dec 14, 2008)
75mg 6-MP (started Dec 1, 2008)
Align
Flintstones Complete Vitamins


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/8/2009 12:10 PM (GMT -6)   
What did your girlfriend cook? I noticed that while I was getting better, I still could not eat my trigger foods like fried food, milk, etc. Its really easy to get sloppy when you're feeling better - I did that numerous times and always had a setback.

But I also have very little experience with pred, so as someone else said, maybe the taper is making you feel worse. I hope its only temporary, since you were having so much success.
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower & Low-residue diet.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Near total remission
 
 
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/8/2009 12:23 PM (GMT -6)   
She made a homemade burger helper.... rice pasta, lean burger, can of mushroom soup. She's made it before with no problems for me. Like I said though I normally do all the cooking cause I enjoy it. She can cook, but her cooking is more of a chore to her, make it quick easy and filling. LOL. Really hoping its the taper and tomorrow will be better. Today is miserable. Almost like it was a couple weeks ago. 7 trips to bathroom so far today 3 of which were D. And I had been down to 2 and those only in the am. Gut has been noisy and gurgling all day.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/8/2009 12:40 PM (GMT -6)   
Hmmm, must be the pred then. I read some stuff a couple weeks ago about tapering off meds (because I was tapering off Zoloft), and I learned that it is suggested that one goes off a medication 10% at a time every 14 days. Now that was for psychiatric medicine, but I mention it because it seems like doctors suggest a faster taper schedule than what's really needed. Zoloft and Pred are notoriously hard to get off of (for completely different reasons, of course), so I wonder if the same principles would apply for all drugs that require tapering. The website I got this info from is called www.theroadback.org.

Just thought I'd mention it, since so many people seem to have trouble getting off this stuff.
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower & Low-residue diet.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Near total remission
 
 
 
 


Scarlet504
Regular Member


Date Joined Oct 2008
Total Posts : 192
   Posted 1/8/2009 12:43 PM (GMT -6)   
I heard MUSHROOM SOUP and all my alarm systems were ringing. Was it Campbell's Condensed Mushroom Soup? I can't stand that stuff, it is one of my trigger foods and I blame the MSG in it. I can't eat stuff with MSG, maybe you have the same issue? Just a thought. Do you have a food diary? If not, maybe you start one. It is tedious, but so worth it and after a while, you don't mind writing down every bite that you have eaten.

Scarlett, 38 yo., TX
Pancolitis since 3/1997
Worst flare of my life from 8/2008 until mid 12/2008 - bye bye flare! Was about friggin' time ...
 
Meds
6 x Asacol a day
0 mg Prednisone (stopped Dec 14, 2008)
75mg 6-MP (started Dec 1, 2008)
Align
Flintstones Complete Vitamins


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 1/8/2009 12:43 PM (GMT -6)   
Any time you step down on pred, you're liable to have a little reaction. If that's what caused the D, things should smooth out soon. Keep in mind, too, that healing is not a straight path but more like an upward spiral. We all have off days - sometimes seemingly with no explanation - but so long as you continue on an upward trend, you're doing well.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal. Long-term remission with only minor blips.
 
 


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/8/2009 12:47 PM (GMT -6)   
Yeah it was campbells golden cream of mushroom. But I'm pretty sure its what she used before when she made this and I didn't notice any worse effects, course at the time I was already flarin pretty bad so.... Yes I keep a food diary, I'll highlight this as a possible.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


Happychic
Regular Member


Date Joined Dec 2008
Total Posts : 44
   Posted 1/8/2009 1:03 PM (GMT -6)   
I agree with all of the above posts. I sometimes drive myself crazy with the "was it this food" or "should I have drank that?" I never used to worry about any of that before UC. I am always second guessing myself and that is not good! I used to think that I must have brought this disease on myself - maybe too much soda or too much junk (not that I ever ate a lot of junk, but I though it could be). Now that I know that wasn't possible I worry about my meds. Should I add this new vitamin? or just leave things alone as I am in remission right now. I am constantly reminding myself that worrying WILL NOT help and I need to just focus on what I CAN do to stay in remission!

unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/8/2009 5:29 PM (GMT -6)   
This disease is hell... even when we are not sick we can make ourselves sick with worrying about being sick.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/8/2009 6:37 PM (GMT -6)   
unclebuba, don't be fooled that the next morning's issues are always from food eatenthe night before as it may not have anything to do with it. If you happen to be going through some extra stress your BM the next day could be affected. It's a;so difficult to know if an alternative treatment i.e spinach etc is doing anything positive for you if on pred.
 
Yes this disease sux indeed. It's amazing how many people don't have a clue how bad this can be.


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/8/2009 8:06 PM (GMT -6)   
If it is the spinach reduction that caused you problems it may be better for you to reduce the spinach by eating a half can a day instead of eating a full can every other day so you can have it running through your digestive system daily. You may just have to deal with the redness and heat that you are getting from eating a full can a day and continue eating a full can a day for a while till you get closer to remission if you still have problems with one half can a day.

pant pooper
Regular Member


Date Joined Dec 2008
Total Posts : 27
   Posted 1/8/2009 9:21 PM (GMT -6)   

I know that some of you are going to poo poo on what ever I post, so not being a quitter or one to back down here it goes, first find a GI that does not believe in prednisone (horrible for your body, poison) start your day with melons honey dew, cantaloupe or watermelon, peeled apples for snacks, for lunch 3 or 4 bananas, get a good juicer and do carrots spinach celery wheat grass apple parsley, tastes great. Snack on sunflower seeds, walnuts, almonds, make your own trail mix with some dried fruit (get a dehydrator and do it your self) oh by the way do all organic. For diner salad greens, celery and what ever else you enjoy, be careful with the hard veggies if you are flaring , food as medication.

 

 

U.S. Marine Corp. Ret 25 Years

Remicade every 8 weeks

Currently working in Iraq


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/9/2009 9:35 AM (GMT -6)   
day two.... and its startin out good... hopefully it will stay this way.
spinach.... yesterday was my on day, today my off day. If its bad again tomorrow, then I'll have a pretty good idea I can't skip a day and will try half can a day and see what happens. Might just be easier to deal with red face.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/9/2009 12:52 PM (GMT -6)   
My money's on the pred.  It takes a long time to build up a nutrient supply in the body, and (likewise) it would take a while for it to leave you.  I very much doubt that one day without the spinach would be the cause of your setback, especially considering that you're showing signs of having nearly too much magnesium in you.  I hope its the pred, since you've had so much success with the diet.  Let us know what happens...

Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower & Low-residue diet.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Near total remission
 
 
 
 


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/9/2009 1:41 PM (GMT -6)   
Kiss, when your ingesting a lot of mag sometimes your blood levels can get on the high side and cause redness and heat but your body stores may still not be high enough. The blood is what gathers ingested nutrients from the digestive system and transports them throughout parts of the body so it makes sense that after ingesting them levels would be temporarily (1 or 2 days in my experiance) raised in the blood.  People can get their blood tested for mag and be at normal levels but the body as a whole still have a deficiency. So sometimes its better to ingest a little less magnesium over a longer period to gradually increase  body stores to avoid the redness and heat rather then ingesting a lot to try to get levels up quickly. And I think the magnesium running through the colon from the spinach can help when body stores are not high enough yet so my money is on the lack of spinach for the day he skipped:)

Post Edited (Cfromutah) : 1/9/2009 3:52:53 PM (GMT-7)


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/9/2009 2:45 PM (GMT -6)   
we'll know tomorrow probably. today has been a great day. No urgency, no cramps, only one bathroom trip in the morning. Also no stress, with the weather, I stayed home again. My clients sure don't like to stand in the barn and hold horses when its this cold and snowing out. LOL. I don't mind... I'm working, but they have to stand there and hold the horse so they get cold.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/10/2009 9:15 AM (GMT -6)   
well looks like it might have been both causes. LOL. Yesterday was a day I skipped spinach, and today I have had four bathroom trips already this morning, but no D. Must have been the pred drop that caused the D, and skippin spinach doesn't seem to cause D but causes lots of trips. No urgency, not the sprint for the throne... just the gut gurgle and know I need to find one. I think today I will eay a full can, maybe aa full one tomorrow also to get back on track, then try the half a can a day route. See how that all works.
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


Cfromutah
Regular Member


Date Joined Mar 2007
Total Posts : 369
   Posted 1/10/2009 10:03 AM (GMT -6)   
so we both get to keep our money, cool!

unclebubba
Veteran Member


Date Joined Dec 2008
Total Posts : 510
   Posted 1/10/2009 10:10 AM (GMT -6)   
LOL... and I have a game plan. Hope this keeps working... SHould I eat more carrots a day since I'm going to be going to a half a can?
 
38 yr old male, NE Ohio
 
diagnosed in aug 2008
30 mg predisone, 9 balsalazide, rowesa enema, 2 gemfibrozil, 1 norvasc, 1 metoprotol, 1 allopurinol, 2 probiotic, 2 aloe vera
gluten intolerance... attempting to live no/low gluten
 
**********
update: down to 25 mg pred a day as of 12/25/08
**********
update: down to 20 Mg pred a day as of 1/7/09


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/10/2009 10:25 AM (GMT -6)   
It's really hard to tell if anything may or may not be helping when one is on pred.
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 1/10/2009 10:44 AM (GMT -6)   
C - I suppose it was ridiculous of us to be betting on his bowels anyway! Ha! Oh well, we have to make this disease interesting SOMEHOW. ;-)
Katie, 30.   Chicago 'burbs.
DX:  Pancolitis as of 9/08 (Proctitis as of 1/08)
Current Treament:  Spinach/sunflower & Low-residue diet.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Rowasa, Bentyl, Cortenema, Asacol, Iron, Zoloft, Acidophilus.
Status:  Near total remission
 
 
 
 

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