what to ask my GI

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/15/2009 12:34 PM (GMT -6)   
my situation - Its neither remission nor a flare that i am having (i would say road to remission is becoming too long).... i get a feeling that medicine is working but not enough, i m not getting into remission and keep getting small re-flares every week or two. If i show a little carelessness with food i eat then i flare up in a day and if not then it takes maybe 2 weeks to show signs of re-flare. Have recently relocated to new place and will see my new GI as soon as possible. I am currently taking 2Xday Lialda (i increased it to 3 per day- but that gave me bad constipation) + 2 x canasa.

Quincy had earlier told me to push for retention enema... any more suggestions what to ask my GI for.
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(


quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 7/15/2009 2:39 PM (GMT -6)   
Hi....it's really not the food...but adjusting it can definitely help in comfort levels and intestinal activity.

Yes, request the enemas and don't let him talk you out of them...you want maximum dosage of medication at the area that's giving you the most grief. Ask for the Rowasa before you consider the steroid enemas....now, that's my preference, others will say on the contrary.
But, you can always use the steroid enemas as your next step.

I had a very difficult first year and it took a while for the meds to do their thing. Try not to make it that remission your goal as you must see that you are having improvement and room for increase of important medications that could help get more of the inflammation under control.

Ask where exactly your UC is located and maybe request a copy of the c-scope pathology report.

Ask the doc if there are blood tests he should be doing such as vitamin D, B12 and liver enzyme blood tests as well as ones for inflammation.
At least to get a baseline considering you are still in a flaring/fragile state.

Also ask for a prescription of dicyclomine (Bentyl)...the lowest dosage to start. It's an antispasmodic and will help with IBS...because I think that's also what's going on regarding the connection with food. It can be very confusing with some symptoms.

Be patient....it takes a while for one to have success with 5ASA meds. If you become too desperate, then you may be jumping the opportunity for using the 5ASA for a very long time and skipping to steroids, etc.

For some, depending on what's going on emotionally, lifestyle, body stress and continual flaring, the 5ASA meds may not be enough, or one just cannot take them at all...and needs to go to stronger immune lowering meds.

As I look back, I am grateful my doc's statement of "be patient" helped, but I will admit I even asked about pred a few times. His response was..."this will work, but it takes time and you are already showing improvement". I was patient, albeit ticked, but it's paid off.

I also must say he didn't start at high dosages of 5ASA either, and my UC has really never been as bad as it was initially. I do struggle with low rectal inflammation and am definitely a med-lifer...I may have to not seek a lower dosage of the enemas but stay at twice a week. That's OK if it works...and with that, I may again enquire about using the 2g for that.

Let me know how your appointment goes...I hope I haven't overwhelmed you with suggestions.

quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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 !!!
 


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/15/2009 3:20 PM (GMT -6)   
THANKS quincy.....you are wonderful.... i think i really wanted someone to tell me to "be patient".... i just dnt want steroid. I had increased my Lialda to 3 initially when i was relocating but i am back to 2 per day again. I will wait for it to work and as you say will fight with the lowest dosage first. I have been little depressed past few days + a lot of anxiety so i guess that is the reason why i am seeing little flareup signs again... i need to learn to keep my mind under control... i think a lot..i am a very sensitive person and little things hurt me & make me worry :-( Thank again for your wonderful reply!
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(


psychocolon
Regular Member


Date Joined Jul 2009
Total Posts : 118
   Posted 7/15/2009 7:37 PM (GMT -6)   
I disagree when people say it is not the foods. Some of us do have major problems with certain foods......probably having some IBS mixed in with the colitis. Others are food sensitive or allergic. However, that is not the reason you have UC. But I am like you and can cause a flare to get much worse with the food I eat one day and then the next day it will be completely better. I do agree with the Rowasa enemas to start with instead of the Prednisone.

quincy
Elite Member


Date Joined May 2003
Total Posts : 30995
   Posted 7/16/2009 1:01 AM (GMT -6)   
Yes, it can be IBS...that's a separate issue!!! I can relate, and food can definitely impact it.  Food sensitivity or allergy...that's a separate issue and should be avoided if needed. 
 
Understand both.

It won't worsen your flare per se regarding the duration of a flare or starting one...food intake and pooing through an inflamed colon can be adjusted to create comfort, etc.

I'm saying, don't make it all about food....it's easy to get focussed or obsessed about that. I'm saying use common sense when eating while flaring and understand that food symptoms will probably be gone in a day or two or lessen once the offending food has exited. Shouldn't take too long considering during a flare and multiple bms.

It's the distress about it that's much the problem...not the food.

One shouldn't be afraid to eat, and there are many who stop eating thinking that'll help. There's moderation for everything and many everythings for a solution to a problem. But, there's never one solution for an entire problem that can continually change or vary. 

quincy


*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 @ 2x 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....(RenewLife Ultimate Flora Critical Care + Primadophilus Reuteri). @ 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) : 7/16/2009 12:08:23 AM (GMT-6)


saposs
Regular Member


Date Joined Nov 2008
Total Posts : 339
   Posted 7/16/2009 10:58 AM (GMT -6)   
my case, i had come to a point where i thought food has nothing to do with my problem, but when i analyzed in detail..i think low fiber food is bad for me... especially pizza..... i have added more green leafy salad to my diet. Low fiber gives me constipation & my GI had asked me just avoid constipation as my flare up starts with a constipation. But i am still not sure if food is a reason for a flare up - there are times when i eat perfectly healthy and still flare up, there are also times when i eat pizza and get perfect poo next day. also if i eat wrong and get a flare up next day then correcting my diet for next few days makes no difference to my flare up and it keeps going bad no matter how healthy i eat.... so m still undecided to blame food or not... so i rather avoid food (pizza) which have given me problem more than once.

I have been a vegetarian always and eat very very healthy, never been into coffee, dnt like tea, never liked alcohol, can't have spices, avoid soda, no white bread only multi grain high fiber..... the max. bad food i eat is a burrito from Chipotle/taco bell/indian food sometimes(these r definitely not bad food :-) ) .... i eat out maybe just once a week...rest cook my food right from scratch everyday..do not eat preserved/frozen food...i drink lots of water :-)
UC forum : Dx Jan'2009: Canasa suppositories 1000 nightly - worked for 2 months then re-flare
13 may: canasa 1000 X2 daily for 2 weeks; 30May: LialdaX2 started on 30th may.
Symptoms: Mucus, blood, constipated (not always), Lots Gas
Also started Probiotic from 23 Mar & fresh Turmeric root from 25 March'09- stopped both on 10th May
Thyroid Forum: Dx in Dec'08, levothyroxine from 50mcg to 75 mcg in June'09 :-(

Post Edited (saposs) : 7/16/2009 10:03:33 AM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 7:55 AM (GMT -6)
There are a total of 3,005,645 posts in 329,246 threads.
View Active Threads


Who's Online
This forum has 161792 registered members. Please welcome our newest member, hanry.
289 Guest(s), 4 Registered Member(s) are currently online.  Details
Bloodyhell, Pratoman, pitmom, Mamatomypeas