Re: Just DX Proctitis, constipation, no diarrhea

[Guest guest]

I have poor digestive motility now, a combination of upper GI disorders and neuromuscular issues. So I deal with chronic constipation. Actually I've rarely had to deal with diarrhea my whole life, as I've always had a sluggish digestive tract.

Yes, SCD has helped tremendously, although I still do some extra things to help keep things moving through my digestive tract. I was on a motility medication, Zelnorm, when I started SCD 5 years ago. The FDA pulled Zelnorm from the market 2 years ago, but fortunately I'd been on SCD 3 years by then so just increased my magnesium supplement and was able to keep things moving even without the Zelnorm. I do have bouts of severe constipation more often since going off Zelnorm, about once every 3 months (the neuromuscular issue), but the episode only lasts two days instead of 7, which is a huge improvement.

To be honest I'm on SCD more for the management of my upper GI symptoms than my constipation (right upper quadrant pain and nausea), but of course the constipation plays a big part in my comfort level throughout the day. I use Miralax daily (osmotic laxative) and take a magnesium supplement frequently. In the past year I've been able to tolerate dried prunes several times a week, and that is helping.

So, my overall experience with constipation has been that the SCD has helped, but I also need additional help since I have poor motility. Also I have needed to be careful with some of the permitted foods on SCD -- some increase my constipation so I avoid them.

Kim M.

SCD 5 years

Sphincter of Oddi dysfunction 5+ years

neurological issues 3 years

>>>>>>>>>>>>>>

......Does anyone else have experience with these kind of atypical symptoms (no diarrhea) and do you think the SCD is still worth committing to at this point?

[Guest guest]

Thank you so much, Kim. Are you a religious follower of the SCD, then? I am

confused by instructions to follow the first phase of SCD since I don't have the

main symptom, D. In other words, where to begin?

I have found luck with a magnesium oxide powder, which is the same active

ingredient as is in Miralax, I think.

What you describe as motility issues seems like that may be my issue. I just

don't get that peristaltic action that is typical of an urge to move the bowels.

My first GI just said I had a " very efficient " bowel which sucked all the

moisture out to the point of total dehydration. Great.

I wonder if the proctitis could have been brought on by glycerin suppositories,

which I used to use 2x a week, at least.

Glad to hear you can tolerate the prunes. Those really seemed to help during my

pregnancy, when I had no blood, mucus, and was less constipated that ever and

eating most everything!

I am starting a glutamine supplement, too, to hopefully heal from the inside.

thanks again for your reply

> So, my overall experience with constipation has been that the SCD has helped,

but I also need additional help since I have poor motility. Also I have needed

to be careful with some of the permitted foods on SCD -- some increase my

constipation so I avoid them.

>

> Kim M.

> SCD 5 years

> Sphincter of Oddi dysfunction 5+ years

> neurological issues 3 years

>

> >>>>>>>>>>>>>>

> ....Does anyone else have experience with these kind of atypical symptoms (no

diarrhea) and do you think the SCD is still worth committing to at this point?

>

[Guest guest]

>

> Hi all-

>

> I am new here and was diagnosed with mild proctitis in Dec. after months of

blood and mucousy yuck when I went to the toilet. I've been constipated my whole

life, really.

>

> Haven't started SCD in full yet. I know what a commitment is and I'm still

nursing my 10 month old baby. Nor have I taken Canasa or Lialda as RX'ed.

>

> Does anyone else have experience with these kind of atypical symptoms (no

diarrhea) and do you think the SCD is still worth committing to at this point?

>

> I've also scheduled food sensitivity testing with my GI.

>

> thanks!

>

Hi! I'm still really new to the whole SCD thing, too - but my first dx was

proctitis in 2005 - with just blood and mucus and some urgency at times - no

pain, or anything else. I used Canasa off and on as needed with really no

change to diet (and needed it more often as time progressed) and then had a bad

flare this past summer that put me in hospital for a couple of days. I was put

on a host of meds and dx'd with full ulcerative colitis. Not all that bad

compared to some experiences, but enough for me to know I NEVER want to

experience those type of symptoms ever again. I really wish I had known the

disease could spread and had researched other options and started the diet

earlier. I was told that lactose free might help me, but wasn't strict about

it, because I wasn't very informed about how much food affects our guts.

Personally, I really wish that I had started the diet at the first sign of

symptoms and think that maybe my flare last summer could have been avoided.

Hope you find my experience a bit helpful in making your decision.

[Guest guest]

I was a fanatic adherent to SCD for four years; I'm in year 5 being on SCD. I still eat 99% SCD foods, but I've added one occasional illegal (dark chocolate) in the past year. I also occasionally (once every few months, more or less) eat at a restaurant, and don't suffer too many days afterwards; I know I'm getting some illegals in the food even though I always select a broiled fish and some cooked veggies. I didn't dare eat anything at a restaurant until this past year.

Anyway, because of my functional upper GI disorders, and my poor digestive motility, I can't eat anything high in fat or fiber, and have to eat bland. Because of my poor motility I need to supplement with magnesium, and I use the osmotic laxative Miralax (contains no illegals, although it is a synthetic, polyethylene glycol). Magnesium oxide should work. I use magnesium glycinate, but there are several forms of magnesium available. My body is happy if I have 50mg of magnesium per day, but my kidneys don't like it, so I have to skip a day every 2 days.

In your case, I would start introducing foods slowly, see which foods work for you. I didn't follow the www.pecanbread.com stages, but they are a helpful guideline. You will undoubtedly find that some SCD foods are tolerated well, others are not...

There is plenty of soluble fiber in the permitted foods. You also get plenty of insoluble fiber if you are able to eat raw foods.

Kim M.

SCD 5 years

>>>>>>>>>

Thank you so much, Kim. Are you a religious follower of the SCD, then? I am confused by instructions to follow the first phase of SCD since I don't have the main symptom, D. In other words, where to begin?

[Guest guest]

I'm in the same boat as you, except that I've had proctitis for about 5 years with no spreading of the area of inflammation.I've seen some noticeable improvement with the diet to the point where I am not constipated 90% of the time.

What helps most is cooked vegetables and fruits. I have to watch how many nut products I eat in one day, but I think those help as well.I did the intro diet for a few days when I started the diet, and I fall back into eating those types of foods if I have a flare.

I just had what I think was the 6-month flare, but it has died back down and everything is normal. I'm going to the GI anyway, since I just moved to another city.Before I did SCD, I concentrated on getting the junk food out of my diet and the GI I was seeing said " whatever you're doing, keep doing it. " as there was less inflammation-- so even eliminating fried and processed foods helped me. Reducing stress helps me as well. I definitely think too much stress makes things worse. I've been practicing meditation lately, and that plus exercise helps a lot in keeping the stress level down.

I'm on Canasa, and it helps at times, but I think the diet is what's helping the most.  I'd say give the diet a try, as it may relieve your constipation.--

Hi all-

I am new here and was diagnosed with mild proctitis in Dec. after months of blood and mucousy yuck when I went to the toilet. I've been constipated my whole life, really.

Haven't started SCD in full yet. I know what a commitment is and I'm still nursing my 10 month old baby. Nor have I taken Canasa or Lialda as RX'ed.

Does anyone else have experience with these kind of atypical symptoms (no diarrhea) and do you think the SCD is still worth committing to at this point?

I've also scheduled food sensitivity testing with my GI.

thanks!

[Guest guest]

Thanks so much, everyone. On the subject of flares: how long after a food is

eaten will a flare occur? I assume bleeding is the flare? (Hard to understand

again, since no D.)

Will that come on as soon as 30 minutes after?

Starting the intro today....

..... and I fall back

> into eating those types of foods if I have a flare.

>

> I just had what I think was the 6-month flare, but it has died back down and

> everything is normal. I'm going to the GI anyway, since I just moved to

> another city.

> Before I did SCD, I concentrated on getting the junk food out of my diet and

> the GI I was seeing said " whatever you're doing, keep doing it. " as there

> was less inflammation-- so even eliminating fried and processed foods helped

> me. Reducing stress helps me as well. I definitely think too much stress

> makes things worse. I've been practicing meditation lately, and that plus

> exercise helps a lot in keeping the stress level down.

>

> I'm on Canasa, and it helps at times, but I think the diet is what's helping

> the most. I'd say give the diet a try, as it may relieve your constipation.

>

> --

>

>

[Guest guest]

I didn't have proctitis -- my diagnosis was full-blown ulcerative colitis, but my symptoms were close to yours.  No diarrhea, some bleeding.  I did have some urgency, and a lot of gas -- I don't know if you've had that.  My bleeding and gas got particularly bad after a month of medication after my first-ever colonoscopy, and I went on to SCD.  I was really confused about the fact that I didn't have diarrhea either, so how to know when to move off the introductory diet?  But I hated the intro diet anyway, so I moved off of it after one day.  The diet has helped enormously!  However, constipation (or really, just the lack of stool -- I never have any pain, but psychologically I start to panic when I haven't had a stool in 3 or 4 days) has been an issue for me ever since starting the diet.  Sometimes it gets a little better; at the moment its not so great.  But mostly the bleeding has stopped altogether, as well as the urgency and frequent trips to the bathroom, so something is going well.  Anyway, I just wanted to be one more voice assuring you that the diet can help even if you don't have all the normal symptoms. 

 

Ann (from Iowa)

[Guest guest]

Yes, for me, bleeding, constipation starting up again, and occasional mucus is the flare.If I eat a lot of illegals(--yes, I blew it about 3 months into the diet when I had a mini-binge of chocolate and french fries)--I will bleed the next time I use the bathroom (bm).  I haven't had the symptoms start up immediately, it's usually the next day or beyond.

Sometimes, even if I'm adhering to the diet, I've had intermittent bleeding, but it's usually really minor, and then goes away. Good luck with the intro diet. I'm hoping that you see improvement in your symptoms. I certainly have have seen things go to completely normal most of the time, and this is after 6 months on the diet.

--

Thanks so much, everyone. On the subject of flares: how long after a food is eaten will a flare occur? I assume bleeding is the flare? (Hard to understand again, since no D.)

Will that come on as soon as 30 minutes after?

Starting the intro today....

..... and I fall back

> into eating those types of foods if I have a flare.

>

> I just had what I think was the 6-month flare, but it has died back down and

> everything is normal. I'm going to the GI anyway, since I just moved to

> another city.

> Before I did SCD, I concentrated on getting the junk food out of my diet and

> the GI I was seeing said " whatever you're doing, keep doing it. " as there

> was less inflammation-- so even eliminating fried and processed foods helped

> me. Reducing stress helps me as well. I definitely think too much stress

> makes things worse. I've been practicing meditation lately, and that plus

> exercise helps a lot in keeping the stress level down.

>

> I'm on Canasa, and it helps at times, but I think the diet is what's helping

> the most. I'd say give the diet a try, as it may relieve your constipation.

>

> --

>

>