I started to respond to Brevin’s question about fibre supplements, but the comment was getting too long, so I figured I’d make a new post about it. I just started using fibre supplements during my last hospital stay. I hadn’t needed them before but after the incident with the blockages, I was losing way too much fluid (I had to stay in the hospital on IV), so I had to take fibre supplements to slow things down.

On a bit of an educational note, if you’re looking at different brands and options, I think the key is that you need a “bulking agent”. The psyllium in Metamucil is a bulking agent, as are a few synthetic fibres (like inulin in Benefibre). In general, the synthetic fibres need smaller doses to achieve the same results. I also looked into more food-like options, such as cereals with psyllium fibre. The problem is, while the nutritional information tells you how much fibre the cereal provides, it doesn’t tell you how much psyllium fibre in particular you will get from a serving. My understanding is that this matters – not all fibres do the same thing. The bulking agents actually absorb water, but other fibres don’t. There is a useful comparison chart found at the University of Iowa Hospital website (http://www.uihealthcare.com/topics/digestivesystem/constipation.html), although I think it is likely more useful in the USA, since the brands and doses are not necessarily the same in Canada.

Below I outline my opinions on fibre supplements. Remember that these opinions have been formed in the last week or so, and therefore I don’t have the most extensive experience, although I have thought about fibre supplements a lot lately since they were linked to my hospital release and I plan to head back to work on Monday. Also, as a researcher, it bothers me that I changed more than one variable at a time (I started using Benefibre and changed the times I took the supplements almost at the same time – which factor is most important?). However, these are just my experiences and I believe there are lots of varied personal experiences (otherwise, the doctors wouldn’t have to try things out and wait and see what happens, there would be hard and fast rules about what works).

- Metamucil orange flavoured supplement (the only type of Metamucil the hospital carries) is totally disgusting. It gets very thick and you can’t disguise the taste. Also, for anyone who has had to take Pico-Salax before a surgery or colonoscopy, the taste gave me flashbacks.
- Metamucil “wafers” (read “cookies”) actually aren’t bad. However, if you have to take the dose I was recommended (the equivalent of 2 packs of liquid 3 times a day), you have to eat 9 cookies a day, which equals 9 cookies or 540 calories of cookies. That is a lot of calories to add to your diet if you need to be concerned about those things (the resident was concerned in the long-term, though I need to gain about 10lbs right now). Also, you get sick of the cookies quickly. They do fit into my purse nicely and serve as a snack, which is positive.
- Metamucil also comes in caplet form. There was some concern about their ability to dissolve quickly enough in my short intestinal tract, but there were no problems with the dissolution. However, I had a lot of pills to take (8 pills 3 times a day) which is daunting.
- The Metamucil caused a lot of discomfort and cramping, although it did achieve the desired effect of slowing down my digestive tract (enough to get released from the hospital).
- Benefibre is so, so, so much easier to take. I have only been taking it for a couple of days, but it seems to be working well (maybe not as well as the Metamucil, but it is also not causing the cramps that Metamucil did). I have only dissolved it in liquids so far (though I’m going to try baking it into muffins later!), and it definitely dissolves better in warm liquids (the results with hot tea were much better than with cold water). In the tea, you really can’t tell the difference. In the cold water, it didn’t all dissolve, but it was still infinitely better than the Metamucil liquid. I only have to take 2 teaspoons 3 times a day, which dissolves easily in a regular cup of tea.
- I have been playing with the dosage times over the past few days. In the hospital, they gave me the Metamucil with meals. I think the logic is that it needs to mix with food. However, that was resulting in me taking all the supplements between about 8am and 6pm and then none for 14 hours. This was causing unequal results (lots of liquid during the evening and almost none during the night and day). I have since started taking the supplements at breakfast, late afternoon and bedtime and it seems to be better.

These posts might also help out:

• January 9, 2009 -- My Friend Fiber (1)
• January 26, 2009 -- Just a quick note about pills (1)
• January 10, 2009 -- Suggestions for Carers (Things I found helpful from my partner) (5)
• January 6, 2009 -- Learn From Experience: Easily Find The Right Medication (0)

Chewable multivitamins are better absorbed

After I had Step Two of my three surgeries, I was expelling waste rather quickly. Too quickly, it seemed. I was afraid I couldn’t adsorb anything so my surgeon recommended chewable vitamins. Although they seem childish, you can absorb them better because you’ve chewed them first!

Even now, after takedown, I still take 2 chewable vitamins a day, and, if I feel I need it, I take a chewable Imodium as well.

And, in case you’re wondering about the safety of taking Imodium after takedown (this is important, you should NOT be taking imodium if you are having a flare without your doctor’s approval), my surgeon said that some people take it 10 times a day! If you take it twice a day, like Mark, this news should make your morning and night routine seem a little better.

If you are concerned about your vitamin absorption, then, don’t be shy, grab the Flinstones and chew away!

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• January 6, 2009 -- Learn From Experience: Easily Find The Right Medication (0)
• February 11, 2011 -- Belladonna Wars? (7)
• December 8, 2010 -- Cleveland Clinic, Day 1 (6)

1. Help with food. I found the diet after surgery to be extremely restrictive. Since I generally ate very well prior to surgery, meaning lots of whole grains, fruits and vegetables, I found it very difficult to stick to the low-residue diet I was prescribed. In addition, I was told to consume as much protein as possible, not what someone who isn’t a big fan of meat wants to hear. My partner spent a lot of time planning meals and snacks, grocery shopping, and cooking, which made a huge difference.

2. Letting people know about my “situation” in advance. I found it important to prep people before we went to someone’s house or out to some social activity for a couple of reasons. I looked very sick initially, and a little warning saved all the awful “What happened to you?!” reactions that just reminded and reinforced how sick I looked. In addition, if we were going to someone’s house to eat (particularly if it was for more than one meal, such as staying for a weekend), prepping about the diet requirements was important. I disliked telling people about my complicated requirements, but it was easier for someone else to do it for me.

3. Setting up a reward system for bad UC/Ileostomy days. Problems with the ileostomy leaking (the adhesive coming of and the wafer losing it’s seal) is incredible frustrating and I had it happen to me quite a few times. It happens less now, although it still happens occasionally. My partner was always great about comforting me afterwards. We are both very busy, but when that happens (after I take a shower and get everything in order) we watch TV together and take the night off from work and chores. It has come to be a reward that balances out the awfulness of a blow-out.

4. Patient reassurance. Many times I have felt extremely overwhelmed by the situation and my partner has always been willing to patiently reassure me that things will get better and I can handle whatever comes my way. This is also true for how I feel about how I look, which has also been a huge deal for me (though truly I think the hair bothers me more than the ileostomy).

5. Entertainment. In those long, long days of recovery, my partner put lots of time into finding me things to occupy my time, such as books to read and TV and movies to watch. It made the recovery period so much better.

These posts might also help out:

• June 14, 2009 -- Fibre Supplements (8)
• February 6, 2009 -- Week In Review (0)
• January 26, 2009 -- Just a quick note about pills (1)
• January 19, 2009 -- Care Pages (4)

Worst Toilet in Scotland

It has been a while since I was on a good fiber schedule due to the unrest in our life with selling the house, moving, and being insanely busy. But now that we’ve settled back down in our new town and into our new home, I’ve been able to get back into a routine. And I’ve started taking fiber again.

I prefer to take Metamucil powder and drink it once a day in the night (not sure why at night but that is when I seem to remember). I like taking fiber because it makes my BMs way less watery, which is helpful for making me feel more normal due my more solid movements. However, there is a down side and that is the gas that I do experience and am having to get used to having. Fiber makes me gassy. During the day this means that often I think I need to have a BM but when I go the bathroom it is just gas and sometimes “splatter butt” (you don’t need me to explain splatter butt do you – if you had/have UC you know splatter butt). The gas doesn’t hurt but it can be a bit annoying to have such loud gas and then the light splatter. But again, a far cry from being sick with UC or anything else. I guess the point of my post is that fiber is my friend.

In honor of the bad UC days, here is the classic scene from Trainspotting: The worst toilet in Scotland.

These posts might also help out:

• June 14, 2009 -- Fibre Supplements (8)
• March 31, 2009 -- Gas after 1 step surgery (3)
• January 28, 2009 -- Meet My Hernia (2)
• January 26, 2009 -- Just a quick note about pills (1)

When you’re in the middle of an active flare, and you’re taking 20+ pills a day, you need to keep track of what’s what. This method will also help if you are the kind of person to empty doctor samples out of the ridiculous over-packaging and store them in an empty prescription bottle. An added bonus: quickly and easily find what you’re looking for without searching through the entire medicine cabinet!

Here are the abbreviations I used when I was still struggling with Colitis:
A – Asacol
P- Prednisone
C- Calcium
ZL – Zoloft
zzzzzzzzz – Ambien (get it? like the Zs for sleeping)
FO – Fish Oil
MV – Multi-vitamin
Sy- Symax Duotab
H- Hyosciamine

These posts might also help out:

• July 20, 2011 -- 2 Years Post TakeDown (6)
• February 25, 2010 -- Commenter with Questions (13)
• February 8, 2010 -- A little insight on my insides. (13)
• January 26, 2009 -- Just a quick note about pills (1)