I feel like a total idiot!

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pom_mommy
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/28/2009 10:43 AM (GMT -6)   
Hi all. I feel like a total idiot! Everytime I go into a flare it feels like my very first one all over again, and I have been dealing with this stupid UC for 19 years. I get flustered at everything, im confused about what I should do, Im grouchy to my family, and I want to try everything that sounds even remotely possible to work. Im about a month into this flare. I have cut out as many carbs as I possibly can, started taking the VSL#3 and fish oil. I called my GI and, of course, the first thing he says is "get back on Pred." . I took Pred for about 2 years when I was first diagnosed and I absolutely HATE it. I dont think I can stress enough (at least to my family but you guys probably understand!) how bad I dont want to take it. Well, my hubby talked me into getting the prescription but I cant even make my self take it. GI says to take 40mg a day, so far I have taken 10mg twice. That was about 2 days ago and now my symptoms are worse than before. Can the pred. make it worse? Or is it because I took some then stopped? Also, im starving. I've cut back on eating just about everything except meat and I eat 1/2 a thing of yogurt with the vsl3 twice a day. Is the meat (steak & chicken)okay to eat? or should I find something else? Right now im so fustrated I just want to grab a bag of Doritos and crawl back into bed. I would love any advice. Thanks!
 
Lisa 

mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/28/2009 10:47 AM (GMT -6)   
I would try a liquid diet for awhile if you don't want to go to the prednisone. As for the meat, chicken is better than steak during a flare but you should be eating fish as that's the easiest meat to digest and the natural oils should help. Avoiding chips during a flare is also a good idea.
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 10 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine and Iron supps. Also now trying probiotics Bio-K (acidophilus)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/28/2009 11:13 AM (GMT -6)   
Hey, I know what you mean after having this for so long that it can still confuse you! For some people steak will bother them because it's harder to digest so I do agree that maybe you should stick to chicken, fish, rice etc. Diet is so very individualistic. As for the pred, the only thing I think that can be happening is that even though you only took 2 doses, you can be having a rebound effect. I know when I was on the steroid enemas for a year and then off of them for a while, and if I have to start back on them, my body acts like it "craves" the stuff and if I stop them too soon my body is saying whoa wait a minute - give that back! What meds are you on right now and have you ever tried rectal meds?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


pom_mommy
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/28/2009 11:29 AM (GMT -6)   
Yes, I have used the Rowasa enemas. They seemed to work okay but not great. I have also tried Asacol and Colazol, neither worked, and Pentasa, which worked great the first time I took it but the second time didnt seem to have much effect. So right now the only thing im taking is the vsl3 and fish oil. I have been taking 2 packects of vsl3/day and 2 fish oil tablets, is that enought or should I do more? What kind of rice is okay to eat? I also think I might be alittle lactose intolerant but the yogurt is the only thing I can think of to mix the vsl with. Any other suggestions?
Thanks, Lisa

P.S. I was kidding about the Doritos, I know they would kill me right now!!!

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/28/2009 11:32 AM (GMT -6)   
Try cortifoam ... Hope it works :)
 
I think the longer we stay sick the harder it gets...


Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*

Post Edited (bbc) : 1/28/2009 12:50:25 PM (GMT-7)


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/28/2009 12:02 PM (GMT -6)   

Good luck to you - info on yogurt...

 

* Bacterial lactase from live active cultures in yogurt survives transit through the stomach allowing digestion of lactose present in yogurt. This enables lactose-deficient individuals to tolerate the lactose present in yogurt in moderate amounts, (8 to 16 oz) with fewer or no symptoms. (New England Journal of Medicine: 310:1-3,1984).
 
Just be sure to get the yogurt with LIVE bateria - it is good for you.
ElaineNY
68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/28/2009 12:21 PM (GMT -6)   
Try taking 4 or 5 packets of VSL3 per day. I know it gets expensive but it works wonders. You will never get enough bacteria from just eating yogurt

kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/28/2009 1:31 PM (GMT -6)   

MAD - I understand getting good bacteria but what happens if we don't?  Will that heal my UC?  Stop the bleeding?  Just wish I knew!

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/28/2009 1:42 PM (GMT -6)   
kops2da said...
MAD - I understand getting good bacteria but what happens if we don't? Will that heal my UC? Stop the bleeding? Just wish I knew!

ElaineNY


Well depends on what "good bacteria" you are talking about. The good bacteria from human feces can heal your UC and stop the bleeding and maybe if your lucky cure your disease. You have to be in total remission before introducing the bacteria through a fecal transplant so they can implant themselves permanently.

If your talking about "good bacteria" from VSL3 then yes it can also heal your UC and stop the bleeding but will never cure your disease. You will need to continue taking it everyday. These types of manufactured probiotics do not have the ability to implant themselves in your colon permanently.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/28/2009 1:48 PM (GMT -6)   
Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/28/2009 1:49 PM (GMT -6)   
MAD. Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.
Moderate Pancolitis
Dx'd 05/2007
8 Pentasa per day (4/2)
Corti Foam p.m. 5X per week and canasa every other day
Natural anti fungal, anti inflammation supplements and Probiotics.
Bowel Soother and IntestiNew, Fish Oil, Calcium, Multi Vitamin and Melatonin
Eliminated Fructose and Corn Syrup
Reduced sugar in my diet by at least 70%
Reduced wheat products by 70% 
Could never tolerate artificial sweetners
I excersice daily (unless like now : (  I've lost too much weight)
Did I happen to mention I HATE this disease!!!
 
*Recent Changes In Blue*


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 1/28/2009 1:54 PM (GMT -6)   

Well, I tried two others - Primal Defense which is supposed to be one of the best and Phillips new one.  My doctor gave me sample of Align and I went back to it because the others did not do anything I could see but give me LOTS of gas.  That is why I asked about bleeding.  Align has stopped my diarrhea and that is great but I still have bleeding and mucous.

ElaineNY


68 yr. old granny
New diagnosed with proctosigmoiditis - 6/2008
 Colonoscopy 10/28 showed only 2 cm. left to heal in rectum - going to try Proctofoam first.
Probiotic Align, Prilosec for GERD
Inderol for hypertension,Xanax,Lipitor, multivitamin, calcium w/D, Tylenol
January 9 - doctor changed me from Protofoam to hydrocortisone enemas for two weeks - wish me luck.
 
 
 
 
 


MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/28/2009 2:15 PM (GMT -6)   
bbc said...
Encouraging about the VSL3 but I have heard other here say it did nothing for them...why does it work in some and not others? I do take two very good probiotics Health Trinity ($90.00 for 60 caps + I take ruteri)I've not had one GI doc (gone to 3 so far) ever recommend or even discuss VSL3...I will ask my new GI tomorrow about it.


Well i don't know why it does nothing for some, perhaps they are not taking enough? VSL3 is actually the only manufactured probiotic that has gone through many vigorous testing and trials that are documented and have proven results in 85% of patients tested.

Lots of info on these studies for VSL3 can be found online, here’s just one of the.

http://www.hospitalpharma.com/PressReleases/pressrel.asp?ROW_id=380

MAD
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/28/2009 2:20 PM (GMT -6)   
Oh and another thing, Docs won't tell you about VSL3 because that’s not what they use for therapy. That’s exactly what my GI told me. My GI Doctor discussed it with me only after i brought it up. Then he tells me he was involved with some clinical trials with VSL3 and it seems to work. Go figure!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 1/28/2009 2:26 PM (GMT -6)   
Keeping in mind, what works for some doesn't always work for others.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


pom_mommy
New Member


Date Joined Jan 2009
Total Posts : 8
   Posted 1/28/2009 3:25 PM (GMT -6)   
Red, what kind of rice is good? Is it just the plain white rice or brown rice? What about the flavored rice, like Rice-A-Roni stuff?

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/28/2009 4:10 PM (GMT -6)   
I'm not particular about what rice I eat as long as it is natural. I try to stay away from Rice a Roni. Some of its packaged rice contains things like corn syrup and monosodium glutamate as well as other not-so-good ingredients. Rice containing turmeric, an anti-inflammatory ingredient, is good.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/28/2009 4:12 PM (GMT -6)   
MAD said...

The good bacteria from human feces can heal your UC and stop the bleeding and maybe if your lucky cure your disease. You have to be in total remission before introducing the bacteria through a fecal transplant so they can implant themselves permanently.

Didn't Borody's papers use subjects that had been resistant to other therapies and who were NOT in remission?  If we were on remission from some other treatment, I can't imagine resorting to fecal bacteriotherapy.  Not that I am squeemish about it or about helminthic theraoy, fo which I am a big fan already.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
12.5ish mg pred, 100 mg Imuran TCM (acupuncture & herbs)
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circuminboswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade
 
 
 


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 1/28/2009 4:51 PM (GMT -6)   
Regarding the meats, it seems that if it is something your body is used to, it's responds OK. But if you don't eat red meat generally then you try to eat some, it will tear you up. That's just anecdotal experience and observations (myself and other people).
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; started diet without gluten, soy, dairy, tomato etc. Replete$$ probiotic powder, then Forte, now a stronger one (50 billion). Doing much better, but still having some bad days. 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/28/2009 5:04 PM (GMT -6)   
I personally like white rice but I imagine you can eat others but like Subdued said, I don't think the Rice a Roni rice would be a good choice. You know what's really good? If you like cream of Mushroom, chicken etc then you combine a can of soup (doesn't matter really to tell the truth) with a can of white rice (Minute Rice) and a can of water if you are using a cream based soup - 1/2 can if not and heat on the stove. I got that recipe from my MIL a long time ago and she calls it souped up rice. It's great to have with broiled or baked chicken or fish.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers -Celebrex and Tylonel Arthritis
To help Healingwell - click here: DONATE
 
 
 
 

 
 


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/28/2009 10:56 PM (GMT -6)   
If you are in a flare, white rice is better because it doesn't have the husk that brown rice does.
When buying yogurt try for yogurts that are all natural without the preservatives and gelling agents especially carageenan. Carageenan should be avoided by everyone especially people with intestinal problems...it's evil...
Same with the prepackaged rice...avoid the not natural stuff. Add lots of garlic and turmeric.
21 yr/old Uni student. Vancouver, BC
Imuran 150 mgs/day

Prednisone 10 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag, CoQ10, L-glutamine and Iron supps. Also now trying probiotics Bio-K (acidophilus)

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