banners
Kickas Main Page | Rights and Responsibilities | Donate to Kickas
Forum Statistics
Forums33
Topics44,166
Posts519,787
Members14,015
Most Online1,931
Jan 16th, 2023
Newest Members
Erinsmom, brightredmoon, Garvan, GinaB2024, etdragon
14,015 Registered Users
KickAs Team
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)

Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)

QR Code
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.

KickAS QR Code
Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
#501206 03/07/14 11:52 AM
Joined: Feb 2010
Posts: 41
Member
OP Offline
Member
Joined: Feb 2010
Posts: 41
I gave up my Sulfasalazine nearly 3 months ago now.
While on the Sulfasalazine I never ate very much starch and ate no wheat. But when I came off it I tried to cut down starch a bit further.
After a month or so I got a bad AS flare up, so I nearly went fully NSD to get rid of it.
I think I have the AS fairly under control using NSD though Im still a bit stiffer than when on the Sulfasalazine.

One thing that I have noticed though is that Im getting a bit of IBD or proctitis. Could the NSD be causing this? Or is it likely that Im just getting the proctitis now because I dont have any sulfasalazine in my gut anymore. (I used to get small amounts of this before I ever got diagnosed with AS)

I eat an awful amount of dairy to keep up my calorie intake so this could possibly be causing it, or maybe its a bit of starch that I eat in bananas and other hidden starch.

Joined: Aug 2012
Posts: 34
A
Member
Offline
Member
A
Joined: Aug 2012
Posts: 34
Hi john,

I have IBS, but I was a suspect of IBD multiple times, reason for which I have had like 4 colonoscopies already.

When my dr put me on Sulfasalazine his reasoning was the following: it will help control both the IBS/IBD & the AS. He was right! While I am on Sulfa my tummy is happy and quiet; my AS is also kept at bay and I have more flexibility and nights of uninterrupted sleep.

So my instinct tells me that ur IBD acting up is a direct result of stopping the Sulfa and not because of the NSD. Maybe tweaking ur diet even further will eventually calm your intestinal distress.

All my best,
alina.


Diagnosed with AS at 30, HLAB-27+, struggling with chronic IBS since I was 10, still learning how to cope with both...
Meds: Sulfasalazine, ZnCarnocine, Digestive enzymes, probiotics
Joined: Sep 2001
Posts: 6,162
Likes: 13
AS Czar
Offline
AS Czar
Joined: Sep 2001
Posts: 6,162
Likes: 13
Hi, John:

Regret dairy can be as dangerous as starch at times. It is important to get enough EFA (EVOliveOil and especially GLA--borage seed oil)). And try getting more calories from nuts and fats. There is a period of transition from carbohydrate-burner to fat/protein-burner; about 4-6 months. Hard cheeses are safer than fresh ones, as lactose is fermented by our nemesis bacterium.

The proctitis can be exacerbated by not getting enough roughage, and I encourage everyone to consume nuts and especially almonds and don't be shy with them except to be careful with the skins as some react to this.

Please let us know how You are getting along.

HEALTH,
John

Joined: Jan 2010
Posts: 839
Ninja_AS_Kicker
Offline
Ninja_AS_Kicker
Joined: Jan 2010
Posts: 839
Too much diary& the lack of sulfasalasine might be the cause.
Fresh diary must be avoided while IBD is active. Switch to matured cheese like parmegiano or similar.

i control both my UC and AS with diet, it's hard to believe that nsd will trigger a flare, but not impossible.
you should give us your food diary, maybe there's something wrong there.

bananas makes my UC flare. and if you have gut problems avoid rich sugar fruits. btw, you have starch in those bananas.

there are two major rules on IBD problems no matter the diet you're on, starch or no starch - no fresh diary and no sugar. at least the doctors say...

btw, whot diagnosed IBD or proctitis and how? did they do a colonoscopy? other tests?

P.S. If you have IBD almonds might suit you. other nuts i don't think so.


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
Joined: Feb 2010
Posts: 41
Member
OP Offline
Member
Joined: Feb 2010
Posts: 41
Thanks for your input guys.
I dont have UBD as such but I was diagnosed with IBS 12 years ago(AS diagnosis was 5 years ago but have had it at least 10). At the time I used to pass some blood intermittently with diarrhea. When I think back I used to eat pure pasta and rice dishes alot. I prob had a 80% starch diet!
I did have a colonoscopy but at a I wasnt passing blood so I suspect thats why the docs never mentioned anything other than IBS.
I used to have this problem intermittently until I started taking salazopyrin which totally stopped it.

I always thought it was the starch that caused the bowel inflammation and not anything like dairy, gluten, casein etc.
I eat starch every so often when Im out of the house and have no other food options available. I can be lucky sometimes and not flare too much.

Typically for NSD I eat:
Breakfast: 2 eggs
+ yogurt with blueberries/walnuts/honey

lunch: veg soup with lots of cream
+ cheese
+ yoghurt
+ apples
+ tuna/mackerel

Snack: apples + nutmix (brazils, macadamias, coconut etc)

dinner: lamb/beef/chicken
+ veg (carrots, brocoli, cauliflower) + butter
+ cheese
+ yoghurt

+ sometimes a bit of plain icecream.


Back on Salazopyrin after taking a break for 2 years. Might try going dairy free. Sugar & bread are the main killers for me!
Joined: Jan 2010
Posts: 839
Ninja_AS_Kicker
Offline
Ninja_AS_Kicker
Joined: Jan 2010
Posts: 839
do remove your yougurt for a time from your menu and check the differences. replace with almonds.

anyway - if you have ibs you heat like hell...sorry for saying this: youghurt&fruits together ? uhuhuhu that's a 150% fermentation process verry painfull for a ibs guy. or fruits and meat (fish)? same !

eat fruits alone as snaks and see if you react to some of them.

eat cheese with vegies or meat with vegies - and let your stomach process what you eat - if you mix alkaline foods like fruits with acid foods like meat - you will not digest this food, it will pass partialy undigested in your colon - and you'll have IBS symptoms.


34. Some rheumys say AS stage 1-2 some others say USpA
Also UC - rectocolitis.

UC curently in remission since feb 2011.
AS/USpA remission march-aug 2011. Flare - sept-nov 2011 (antibiotics). Remission now...

Modified NSD/SCD. Cook your own !
____________________________________________________________
Mesalazine-Salofalk 500 mg/day

And the list of my medication has become verry short after some years on this diet smile
Joined: Aug 2012
Posts: 215
S
Second_Degree_AS_Kicker
Offline
Second_Degree_AS_Kicker
S
Joined: Aug 2012
Posts: 215
Originally Posted By: Alina
When my dr put me on Sulfasalazine his reasoning was the following: it will help control both the IBS/IBD & the AS. He was right!


Apologies if I've missed something but why did you stop the sulfasalazine if it was helping control the IBS/IBD and the AS?


AS, IBS, reflux oesophagitis and dysphagia, PCOS/insulin resistance, asthma...
Currently managing my AS with humira, methotrexate, low starch diet and exercises. Also taking omeprazole, metformin etc.
Joined: Mar 2002
Posts: 9,533
Likes: 8
Offline
Joined: Mar 2002
Posts: 9,533
Likes: 8
Originally Posted By: Shirley
Originally Posted By: Alina
When my dr put me on Sulfasalazine his reasoning was the following: it will help control both the IBS/IBD & the AS. He was right!


Apologies if I've missed something but why did you stop the sulfasalazine if it was helping control the IBS/IBD and the AS?


Change to azulfadine if on sulfasalazine.. same drug, but enteric coated and works better.


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
Joined: Apr 2002
Posts: 2,485
Z
Colonel_AS_Kicker
Offline
Colonel_AS_Kicker
Z
Joined: Apr 2002
Posts: 2,485
~~~ Pruritis / Proctitis ~~~

Too much sugar or carbs can give me proctitis :-/ Its been a real pain in the bum for a long time. I'm very interested in your report that Sulfa drugs may help prevent this!!

Tried going to a specialist - was mostly a useless waste of money.. good to know I don't have any overtly obvious serious disease causing the symptoms. Useless in terms of finding root causes.

==== my observations ====

-- helpful --
***** water flush. drink 2 cups of plain water on an empty tummy. First thing in the morning is an ideal time.
*** Castor oil topical. Not preventative unfortunately
**** Hot bath
*** Fruit fast works. Not a long term solution, but could be a good clue.
** Avoiding fat seems to help
** Curash topical
** Eating sweet foods first or on an empty tummy is helpful
???? Spinach seems to help
???? Miso seems to help
????? bicarb water on empty tummy
????? Lufenuron (chitin inhibitor) seemed to help markedly, which pointed to fungal infection as probably cause. I'm trying Lufenuron again and will get a clearer idea this time I hope.

-- Harmful --
**** Chocolate - sugar & fat
**** Sucrose
**** Alcohol
**** Rice (including glutinous rice unfortunately). I found that glutinous rice was safe when combined with egg to make pancakes - strange eh.
*** Banana
*** Fatty/oily foods followed by / or mixed with sweet foods within 3 hours. Mammal fat seems to be an issue here.
* MMS seems to have temporarily worsened this by destroying flora / reducing competition and thus encouraging weed organisms / pathogens


what I can eat on the diet (click here) -- my blog -- contact me (PM is broken)
"Some men, in truth, live that they may eat, as the irrational creatures, 'whose life is their belly, and nothing else.' But the Instructor enjoins us to eat that we may live." -- Clement of Alexandria (about 200 AD)
Joined: Feb 2010
Posts: 41
Member
OP Offline
Member
Joined: Feb 2010
Posts: 41
Thanks for your tips Alinus.
Im spacing out my fruit from my main meals with meat etc. For the last week ive been taking a soup for lunch which has mostly cocounut milk & a few veggies in it. That way Ive been eating fruit just after lunch.
Ive been doing very good now the last 4 days or so. I think the coconut soup must be pretty good.

Im eating nuts with alot of my fruit snacks too. They seem to go together well. And Im keeping my weight on now which is great!


Back on Salazopyrin after taking a break for 2 years. Might try going dairy free. Sugar & bread are the main killers for me!
Page 1 of 3 1 2 3

Moderated by  Dotyisle, Kiwi, Moderator 

Link Copied to Clipboard
Who's Online Now
0 members (), 302 guests, and 99 robots.
Key: Admin, Global Mod, Mod
Recent Posts
Its been a long, long time
by Richard - 02/27/24 10:49 AM
AS questions from a newbie
by Karma_Coconut - 02/09/24 02:25 PM
Popular Topics(Views)
3,361,975 hmmm
1,319,726 OMG!!!!
709,316 PARTY TIME!
Powered by UBB.threads™ PHP Forum Software 7.7.5
(Release build 20201027)
Responsive Width:

PHP: 5.5.38 Page Time: 0.026s Queries: 35 (0.011s) Memory: 3.2531 MB (Peak: 3.4573 MB) Data Comp: Zlib Server Time: 2024-03-29 07:00:46 UTC
Valid HTML 5 and Valid CSS