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Posted 12/27/2015 11:33 PM (GMT 0)
Hi Everyone!
I am new to this board - was diagnosed with Left Side Ulcerative Colitis and IBS in May (2015) after a follow-up visit to a GI doctor following a 4 day hospital stay. It is interesting because my whole life I just thought I had a "sensitive stomach" and had to avoid certain foods. Getting a diagnosis was somewhat a relief because I had had many (what I now know are) flares over the years, and just accepted that was my stomach being sensitive or something I ate. The flare that landed me in the hospital was way far beyond anything I had ever experienced before with bloody diarrhea, vomiting, and extreme dehydration.

This is all fairly new to me, and I am still navigating my way through everything.
Currently, I am on Apriso - 4 pills a day. I am scheduled to have a colonoscopy in March to see if there has been any improvement since I started the medication in May.

I just started reading here and many of the topics are really resonating with me - i.e. family members/friends not understanding, social anxiety, etc.

One thing I noticed was that some people have mentioned fiber supplements like Metamucil, etc.
I guess it seems counterintuitive to take fiber when you have a GI issue, but could someone explain in the simplest terms possible what are the benefits to taking fiber supplements and the pros/cons?

I had a small flare the day after Christmas - I don't know if it was eating foods that were outside my normal for 2 days or what, but I did have an episode of cramping and non-bloody diarrhea that lasted a few hours.

I am thinking of adding probiotics, and wanted to find out more about the fiber supplements.

Also, hoping to read more about how others manage, and making healthier choices with my diet in general.

Thank you in advance for any information/guidance!
Posted 12/27/2015 11:49 PM (GMT 0)
There is soluble fiber and insoluble fiber. Metamucil is soluble fiber. Insoluble fiber is things like fruit skins, nuts and some vegetable. Our body can't fully break down insoluble fiber which is rough and can basically act as sandpaper over the inflammed parts of your colon.

I dont believe metamucil has that same roughage as it basically becomes a gel in your stomach and helps bring your poop together and bulk it up a little bit.

I have also found it helps with tenesmus if you have dealt with that at all. Some of us deal with both constipation and diarhhea and it can help both. I have tried to eliminate insoluble fiber from my diet for the time being but think metamucil(soluble) is beneficial.
Posted 12/27/2015 11:57 PM (GMT 0)
is the Apriso working for you?

It sounds as if it is if you've only had diarrhea for a couple hours once since you've started taking it. Diet can definitely mess with your symptoms but is a little tricky to figure out. A lot of doctors will completely dismiss that diet has any effect on you.

Also, you might be able to just opt for a flex sigmoidoscopy in March too. It won't reach your left side but they should be able to get a good glimpse of your healing. Flex sigs are a lot easier prep and you don't have to be put under for.
Posted 12/28/2015 12:00 AM (GMT 0)
If you do add metamucil too, read the directions and start slow. Do not take it two hours before or after your medicine because it can interfere with it. Basically, your medicine/pills can become encapsulated in that gel that metamucil forms and then it never is absorbed.
Posted 12/28/2015 12:02 AM (GMT 0)

miestomaga said...
There is soluble fiber and insoluble fiber. Metamucil is soluble fiber. Insoluble fiber is things like fruit skins, nuts and some vegetable. Our body can't fully break down insoluble fiber which is rough and can basically act as sandpaper over the inflammed parts of your colon.

I dont believe metamucil has that same roughage as it basically becomes a gel in your stomach and helps bring your poop together and bulk it up a little bit.

I have also found it helps with tenesmus if you have dealt with that at all. Some of us deal with both constipation and diarhhea and it can help both. I have tried to eliminate insoluble fiber from my diet for the time being but think metamucil(soluble) is beneficial.

Thank you for the response! This makes sense. And, coincidentally, I did eat some fruit (clementines, pears with skin) and nuts over the last few days, so possible that contributed. I had to google tenesmus - I have had that feeling occasionally, and have had some bouts of constipation, as you said. I think I am going to try the metamucil along with the probiotics. Thank you again!
Posted 12/28/2015 12:05 AM (GMT 0)

miestomaga said...
is the Apriso working for you?

It sounds as if it is if you've only had diarrhea for a couple hours once since you've started taking it. Diet can definitely mess with your symptoms but is a little tricky to figure out. A lot of doctors will completely dismiss that diet has any effect on you.

Also, you might be able to just opt for a flex sigmoidoscopy in March too. It won't reach your left side but they should be able to get a good glimpse of your healing. Flex sigs are a lot easier prep and you don't have to be put under for.

So far, the Apriso seems to be fine. I started it in May and this has been the first "flare" I have had since starting it. Also, I missed a few doses last week because I was dealing with an upper respiratory infection and was taking cough/cold meds - I did not take antibiotics.

I wonder why the dr. ordered the colonoscopy vs. the flex sigmoidoscopy? I should ask about that because this will only be the 2nd colonoscopy I have ever had and it is all new to me.
Posted 12/28/2015 12:09 AM (GMT 0)

miestomaga said...
If you do add metamucil too, read the directions and start slow. Do not take it two hours before or after your medicine because it can interfere with it. Basically, your medicine/pills can become encapsulated in that gel that metamucil forms and then it never is absorbed.

Thank you for this tip! I would not have known.
I usually take the Apriso in the middle of the day.
Maybe take the Metamucil at night?

Also, do you have any recommendations for probiotics?
I know there are a lot of brands out there, not sure if some are better than others or if it is just trial and error to find out what works best?
Posted 12/28/2015 12:20 AM (GMT 0)
A lot of people use VSL#3. You have to order it online and it is quite expensive but it is the best of the probiotics it seems. If you have been doing pretty well on Apriso alone then you can probably opt for a cheaper probiotic. Read some labels, look for ones with a lot of active bacteria, like millions to billions.

I use Culturelle which is available in stores and a bit cheaper. I'd space out the probiotic with the metamucil too because like your medicine it could get stuck in the gel.

This recent little flare up can be attributed to the holidays too. Travel, stress, eating foods you aren't normally eating can contribute.
Posted 12/28/2015 12:22 AM (GMT 0)
I take florastor that was recommended by my GI.
Posted 12/28/2015 12:26 AM (GMT 0)
And if you arent flaring then fruits/nuts can be tolerated more and probably wont cause a flare up.

Your doc also might have suggested the colonoscopy because you have been basically symptom free since May. They like to check out everything and then they can declare you in remission. If you tell him you've had a flare up recently or have more of them before March then he might not see the need for it and a flex sig might be more appropriate at that time.
Posted 12/28/2015 12:34 AM (GMT 0)

miestomaga said...
A lot of people use VSL#3. You have to order it online and it is quite expensive but it is the best of the probiotics it seems. If you have been doing pretty well on Apriso alone then you can probably opt for a cheaper probiotic. Read some labels, look for ones with a lot of active bacteria, like millions to billions.

I use Culturelle which is available in stores and a bit cheaper. I'd space out the probiotic with the metamucil too because like your medicine it could get stuck in the gel.

This recent little flare up can be attributed to the holidays too. Travel, stress, eating foods you aren't normally eating can contribute.

Thank you for the recommendations. I will look into the VSL.
Yes, I am hoping that the flare up is due to holiday overeating and stress and my illness last week.
I can't imagine going through what I went through last March ever again. My heart goes out to those who deal with that extent of the UC on a regular basis. It was an absolutely horrible and scary experience, and that is why I want to try to get a handle on this the best I can.
Thank you again - this is all very helpful information!
Posted 12/28/2015 12:42 AM (GMT 0)

miestomaga said...
And if you arent flaring then fruits/nuts can be tolerated more and probably wont cause a flare up.

Your doc also might have suggested the colonoscopy because you have been basically symptom free since May. They like to check out everything and then they can declare you in remission. If you tell him you've had a flare up recently or have more of them before March then he might not see the need for it and a flex sig might be more appropriate at that time.

I actually usually don't eat much fruit - another thing I would like to change about my diet. If I do, it is frozen berries or a banana that I put over Greek yogurt. But typically I don't eat apples/oranges/etc.
I ate clementines on Christmas Eve and Christmas Day, then flared the day after Christmas.

Nuts I do eat, but usually just almonds or cashews. I had walnuts and hazelnuts that were roasted - still in shell and had to be cracked. Not something I eat except for at Christmas time.

This actually made me realize that I had a pretty bad flare a few Christmases ago - I had to leave a co-worker's post-Christmas party at her house because I felt the diarrhea/nausea coming on and had already "gone" twice while there.

I don't have an appointment scheduled before the colonoscopy, but might call to talk to someone and see if I should go in just in case this was a flare up.
Posted 12/28/2015 9:43 AM (GMT 0)
You should definitely call your GI and let him know that you had or are having a flare. It kind of seems weird to me that you haven't seen him in awhile and arent scheduled to see him before the colonoscopy in March. I see mine at least once a month, sometimes more, although I haven't ever technically been out of the flare that started over a year and a half ago and got me to start seeing doctors in the first place. I assume once you are doing well/in remission then you don't need to see them as often.
Posted 12/28/2015 11:40 AM (GMT 0)
I have been taking Metamicil (2tbs) every morning for about 5 years now. I originally started taking it as a source for fiber with the side benefit that it bulks up your stool. It took a while to get use to. When I first started, I had lots of gas. Probably took about 6 weeks to settle down. Might be a good idea to start out slow. Mary
Posted 12/28/2015 1:16 PM (GMT 0)
Hi Circe

It can be quite difficult to separate symptoms of UC from those of IBS but it's great that your GI is treating you for both. If you don't know this already the one big diff. between the two is that bleeding is associated with UC whereas IBS is not linked to blood. If you have cramping and multiple non-bloody D after eating/drinking that sounds like IBS.

Fiber pills: very good advice from miestomaga about fiber pill intake timing. Also not all fiber pills are the same. Many people have to find the one that agrees with their gut. Metamucil upsets my gut but Citrucel (or the generic of it) is OK. Some people take psyllium seed and other prefer psyllium husk. Because fiber from food causes constipation for me (weird huh) taking fiber pills is necessary for me.

Diet modification helps both my IBS and my UC and makes my worst symptoms disappear. Keeping a food journal can help you pinpoint the foods/drinks causing problems. Since you've had a sensitive gut for years you probably already know some of these. My celiac test said I am not celiac but removing gluten/wheat from my diet made bleeding stop. The lactose test likewise said I am not lactose intolerant but removing most milk products made gas/bloating go away.

Like you I don't eat much fruit, due to fiber and fructose in my case. But veggies are a great way to get vitamins and meat has a lot of vitamins too.

Rectal meds: If you are bleeding you need to use mesalamine enemas at night and Canasa suppositories daytime. Pills don't reach this far and direct contact of medicine rectally is the best healer.

Probiotics: VSL#3 is the only probiotic with medical studies backing up it's claims. Expensive but worth it. See if your insurance will cover VSL#3 DS. DS stands for "double strength" and it is double expensive. If insurance will not cover it you can order VSL#3 directly from the company. Get the "sachets" not the pills, they have the highest dose of probiotics. You can mix the dose in applesauce or mix it with water and drink. I take probiotics in the evening when stomach acid is lowest.

Welcome to the forum.
Many of us have both IBS and UC and use diet/food for symptom relief.
Hope your gut is acting better soon.

Post Edited (imagardener2) : 12/28/2015 6:19:00 AM (GMT-7)

Posted 12/28/2015 8:04 PM (GMT 0)

imagardener2 said...
Hi Circe

It can be quite difficult to separate symptoms of UC from those of IBS but it's great that your GI is treating you for both. If you don't know this already the one big diff. between the two is that bleeding is associated with UC whereas IBS is not linked to blood. If you have cramping and multiple non-bloody D after eating/drinking that sounds like IBS.

Fiber pills: very good advice from miestomaga about fiber pill intake timing. Also not all fiber pills are the same. Many people have to find the one that agrees with their gut. Metamucil upsets my gut but Citrucel (or the generic of it) is OK. Some people take psyllium seed and other prefer psyllium husk. Because fiber from food causes constipation for me (weird huh) taking fiber pills is necessary for me.

Diet modification helps both my IBS and my UC and makes my worst symptoms disappear. Keeping a food journal can help you pinpoint the foods/drinks causing problems. Since you've had a sensitive gut for years you probably already know some of these. My celiac test said I am not celiac but removing gluten/wheat from my diet made bleeding stop. The lactose test likewise said I am not lactose intolerant but removing most milk products made gas/bloating go away.

Like you I don't eat much fruit, due to fiber and fructose in my case. But veggies are a great way to get vitamins and meat has a lot of vitamins too.

Rectal meds: If you are bleeding you need to use mesalamine enemas at night and Canasa suppositories daytime. Pills don't reach this far and direct contact of medicine rectally is the best healer.

Probiotics: VSL#3 is the only probiotic with medical studies backing up it's claims. Expensive but worth it. See if your insurance will cover VSL#3 DS. DS stands for "double strength" and it is double expensive. If insurance will not cover it you can order VSL#3 directly from the company. Get the "sachets" not the pills, they have the highest dose of probiotics. You can mix the dose in applesauce or mix it with water and drink. I take probiotics in the evening when stomach acid is lowest.

Welcome to the forum.
Many of us have both IBS and UC and use diet/food for symptom relief.
Hope your gut is acting better soon.

Thank you for your response imagardener2!
Yes, this episode on Saturday was non-bloody - probably went about 4-5 times, but cramping and definitely diarrhea, no blood though, thank goodness!
That is good (I think?) to know that it is most likely the IBS and not the UC flaring up.
I did definitely eat and drink more than usual in the days leading up to Saturday - had some wine on Christmas Eve and champagne on Christmas and I do think that alcohol has correlated with my stomach issues in the past.
I was in CVS today and was a little overwhelmed with the fiber supplements. I finally got a small container of the Metamucil powder. I thought that might allow me to better control the doseage and work my way up, rather than a pill that would be a set dose.
I don't eat meat, except occasionally chicken and turkey and fish, but one of my goals this year is to improve my overall health, hoping to eat more fruit and vegetables but will have to do trial and error, since I'm not sure which (if any) will disagree with me.

I have never tried any enema or rectal meds - my dr. never discussed them with me and Apriso is the first/only med I have tried. Curious if that is something that I should consider.

I found the VSL on Amazon and have an Amazon gift card from Christmas that I used! I ordered direct from VSL but I ordered the pills - I didn't see the sachets on there... Well I got the 60 pill bottle - was over $50 but my gift card was for $50 and I got free shipping so it cost me less than $10. Will see how it goes and then go from there. Can a dr. prescribe them? My insurance and prescription plan are pretty good so that might be a good route to go to save $$$. I am single and have only my income, but luckily great insurance and prescription plan - I definitely needed it after the hospital stay.

Thank you again for your response - this board is very informative and supportive. Sometimes I feel embarrassed or don't want to discuss with friends/family/co-workers. This is a great place to go to ask questions from those who have "been there" since I don't think people who haven't would truly understand...
Posted 12/28/2015 8:40 PM (GMT 0)
I would be careful adding a lot of fiber when flaring. When you're flaring, your intestine is inflamed which makes the inside diameter smaller, raw and bleeding. Fiber bulks up stool and fiber is also abrasive, not good when flaring. Often it's said to avoid high fiber diets when flaring.

As you approach remission, and your uc symptoms are lessened, fiber can be very helpful. Fiber can slightly decrease bm urgency and frequency, and improve stool firmness; all a huge help-
Posted 12/28/2015 9:59 PM (GMT 0)

iPoop said...
I would be careful adding a lot of fiber when flaring. When you're flaring, your intestine is inflamed which makes the inside diameter smaller, raw and bleeding. Fiber bulks up stool and fiber is also abrasive, not good when flaring. Often it's said to avoid high fiber diets when flaring.

As you approach remission, and your uc symptoms are lessened, fiber can be very helpful. Fiber can slightly decrease bm urgency and frequency, and improve stool firmness; all a huge help-

Thank you iPoop (lol @your name!) - I have never used a fiber supplement before.
I seem to be OK today, didn't eat much yesterday after Saturday's flare and didn't really have too much of an appetite.

How long would you suggest waiting before beginning fiber?

I did eat today - cup of peach Greek yogurt for breakfast, 1/2 of a turkey burger with lettuce & tomato & ketchup and 1/2 of the bun for lunch, bowl of Healthy Request Homestyle Chicken Noodle Soup for dinner.

So far so good, but like you said don't want to introduce the fiber too soon, as it will be the first time I am trying it and I just had some sort of episode (not sure if it was IBS or UC flare) on Saturday night.
Posted 12/29/2015 2:24 AM (GMT 0)
I'd say when you're down to 3-4 bms a day, and getting mushy/semi formed bms. You need some fiber daily, even when flaring, just be mindful. Good luck!
Posted 12/29/2015 2:49 AM (GMT 0)
Welcome to the forum....
You really need to add a rectal med to your regimen.




What isn't true is that Metamucil powder or psyllium powder is only soluble fibre. It's both. Metamucil is made from the husks, ground up very, very fine....it's not going to act like sandpaper unless you're taking a lot of it with little water throughout the day...and it would probably cause more constipation than anything.

I use it with meals...to become "food". Unless you're taking medications that say take on empty stomach (usually a half hour to an hour before eating), it won't interfere.
It definitely will not interfere with any enteric meds. Those medications and food travel at different times.

Start slow...yes. Since you purchased the powder, use a teaspoon for a few days and increase to the recommended tablespoon.

Probiotics are awesome...many are recommended on empty stomach. Taking them at night before bedtime can help you avoid any discomfort during the day should that be an issue as well. I've not taken powders, but they might recommend do take them with meals.

q
Posted 12/29/2015 5:07 PM (GMT 0)

quincy said...
Welcome to the forum....
You really need to add a rectal med to your regimen.




What isn't true is that Metamucil powder or psyllium powder is only soluble fibre. It's both. Metamucil is made from the husks, ground up very, very fine....it's not going to act like sandpaper unless you're taking a lot of it with little water throughout the day...and it would probably cause more constipation than anything.

I use it with meals...to become "food". Unless you're taking medications that say take on empty stomach (usually a half hour to an hour before eating), it won't interfere.
It definitely will not interfere with any enteric meds. Those medications and food travel at different times.

Start slow...yes. Since you purchased the powder, use a teaspoon for a few days and increase to the recommended tablespoon.

Probiotics are awesome...many are recommended on empty stomach. Taking them at night before bedtime can help you avoid any discomfort during the day should that be an issue as well. I've not taken powders, but they might recommend do take them with meals.

q

Thank you quincy!
Any suggestions for rectal med? I have never used any and dr. did not recommend.
I took 1 tsp of the Metamucil for the first time today. So far so good! I took it after I ate breakfast - Greek yogurt & berries. Will stick with the teaspoon as you suggested for a bit to see how I tolerate it.
Posted 12/29/2015 5:33 PM (GMT 0)
I took fibre supplements for over a decade, they helped give me formed stools but sometimes they'd still be too skinny (though I do have IBS as well as IBD) it never stopped me from urgency or frequency issues but it did cut some of my frequency issues down some. Just be sure to drink plenty of water with fiber supplements...we should be drinking extra water daily anyway to help avoid dehydration that we can be prone to getting.
Posted 12/29/2015 6:41 PM (GMT 0)
Good to hear the fibre is going well for the first day.
Which kind exactly did you get....?
If all goes well, you could add another tsp with supper in a few days. Then slowly increase each dosage at both meals.

Rowasa retention enemas is the rectal med I suggest....or the generic version (since you're in the US).

They can be supplemented with the suppositories if needed or used during tapering.

There's a process in the tapering scheduling, which we can explain once you're (hopefully) on them. As well...to remain on them at a determined schedule would also be helpful. or the suppositories for maintenance should you like them better.

q
Posted 12/29/2015 6:56 PM (GMT 0)
OK...after I took the Metamucil it had a strange aftertaste.
I looked at the ingredients and realized I bought the sugar-free kind and that it has aspartame in it.
I try to avoid all artificial sweeteners if possible - not that real sugar is much better, but I just don't like the aftertaste or side effects of artificial sweeteners. One of them, I think xylitol(?) makes my stomach upset.

Looks like I may have to return this canister of Metamucil and see if I can exchange for regular.

Are the Rowasa retention enemas by prescription or over-the-counter? I have never done an enema or suppository before, and am a little nervous - what is the purpose of it?
Posted 12/29/2015 7:02 PM (GMT 0)
This is why I take the pill form, no added extra junk and easy to ingest with a full glass of water...try the Metamucil with psyllium husk capsule form, they have huge bottles at Costco by the way if you find they agree with you and they should, as I too am anal about artificial sweeteners and junky fillers.
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