Elderly sufferers of MC, LC ... special concerns

[Roger]

Hello, Again after a long while since my last post. I am a member of this group taking part in the discussion on behalf of an elderly relative who is much less inclined than me to use the internet.

Though I have much to catch up on with the postings of this very active support group, that which I have read recently seems to have little mention of elderly sufferers of MC, LC and their special concerns, including:

I admire the efforts many in this group have made with adjusting their diets, e.g. to remove gluten, soy, dairy and so forth, even to the extent of posting recipes, detailed lists with "safe" and "prohibited" foods and food additives, etc. Very helpful information that I appreciate. The experiments, even the risks entailed with such work, lead to my admiration; but, my concern is each person might just have to do such kitchen experiments to determine his or her own specific list of foods to avoid, etc. That seems potentially a lot of work, especially for my elderly relative.

She must keep dietary matters simple with meals such as a hard-boiled egg (luckily she can handle this, unlike so many others in this group!), canned tuna, grapes, red meat, a particular white bread (gluten-free apparently) from a neighborhood bakery. Because of a back problem and weakness in her legs, she cannot stand for long periods at the stove or at the counter preparing special ingredients.

The concern then is getting adequate sustenance with the double whammy of having to avoid so many foods and having to keep matters with food simple.

A further complication is my relative's nausea. Though her doctor prescribed anti-nausea medication, it lately seems to help very little, so sometimes even the sight or aroma of particular foods brings on nausea! Frustrating is a paradoxical affinity towards baked goods, many which of course are prohibited. (I am trying to find for her ready-made, gluten-free baked goods that might nonetheless be appetizing.)

Food is a top concern, but it doesn't end there. But to try keep this first posting in a long while somewhat brief, I'll break off for now with plans for further postings on the other special concerns of elderly MC, LC sufferers.

If any members of this group consider themselves elderly, with special concerns, I'd especially want to hear from you!

With heartfelt gratitude ...

... Greg

[tex]

Hi Greg,

Well, we have no elderly members, unfortunately, though quite a few of us have accumulated a lot of miles on our chassis.

If diet is a problem, and she can't get any help with cooking, then maybe a medication such as Entocort EC might be in order, to help control her LC symptoms.

The following site offers some suggestions on how to deal with nausea, associated with food, however, it's not a gluten-free site, so her diet considerations will have to be incorporated, if you are going to follow the suggestions there. For example, the suggestion about starting the day by eating a few crackers, is a good one, but the crackers will have to be gluten-free, if she is gluten sensitive, and Entocort EC will not control her symptoms without diet changes.

http://www.recipetips.com/kitchen-tips/ ... miting.asp

In general, the symptoms of LC, and the diet sensitivities that it can cause, are not age-related. LC is an equal-opportunity disease, affecting the old and the young, alike. It affects each of us somewhat differently, but that variety normally has nothing to do with the age class of the patient.

Tex

[Roger]

Thanks, Tex.

My relative is already on Entocort; however she wants very much to phase it out. At her age, with the other medications she's on and their added side effects, the side effects of the Entocort seem especially enhanced. Age inherently may even be an issue.

I advised her in the direction of going for an appreciable time with an especially scrupulous approach to diet, meaning to make no exceptions on dairy for example, not even a milligram of cheese! But I'm concerned that some things still slip through the cracks, as in going to a social gathering, being offered food that likely will be a problem and accepting it nonetheless to not offend the host. Thus, the need for entocort to deal with the symptoms brought on by a little gluten here and dairy there. I base my suspicions on what I've read on this forum: For many, just a little prohibited food or additive will trigger a reaction or take a person out of remission. I wonder again if an elderly person may be especially sensitive in this regard. First though, how firm are the grounds for my suspicions?

Warm Best Wishes,

Greg (my first name; middle name Roger)

[tex]

Quite a few of us have adverse reactions to Entocort. The most serious ones are neurological, such as vertigo, balance issues, blurred vision, confusion, cognitive issues, etc. I can't see any connection with age - members of all ages report those problems, if they are "allergic" to Entocort. Neurological issues are usually dose-dependent, but most members who react adversely to Entocort, end up discontinuing it, anyway. If that becomes necessary, then strict attention to diet is usually the only practical alternative. Some MC patients can get reasonable control of symptoms from one of the 5-ASA medications, (Asacol, Lialda, Colazal, Pentasa, etc., but those drugs are usually not as effective as Entocort, and obviously they're not exempt from side effects, either.

Slipping up on the diet, and having problems eating away from home, are not age-related issues, either. If you do much reading on this board, you will see that virtually everyone has those problems, if they let their guard down. We even have a member who joined because of her 2-year old daughter, (who has MC, and who is now 3, and in remission), and she reports the same problems - even though her young daughter is well aware of what she can eat, and what she cannot, she will sometimes cave in to peer pressure, and eat something that she should not, especially at parties, or other social events. It's an ageless problem - it's human nature. We're all subject to it, if we run short of will power on some days. Trust me - it's not easy, for any of us, at any age. I'm pretty sure that it's the most difficult, for the very young, because as we age, we tend to become more accepting of changes that we have to make in our lifestyle, to accommodate health issues.

Possibly, in the future, your relative will be able to purchase a pill that will cover any such diet slips, and prevent a reaction. Dr. Fasano, (University of Maryland), has completed his test trials, and presumably the data have, (or soon will be), presented to the FDA, for approval of this drug, to be marketed by Alba Therapeutics. This pill is designed to prevent the release of zonulin, in the digestive system, and will effectively prevent reactions to gluten. There are a number of similar projects for alternative treatments, nearing completion, but this is the one that shows the most promise of actually working. It is the best hope for gluten-sensitive individuals, who sometimes have problems with self-control, and who regularly, (or occasionally), have reactions, because of traces of gluten in their diet. Here is the last completed trial:

http://www.clinicaltrials.gov/ct2/show/ ... 960&rank=1

Tex

[Gabes-Apg]

Greg/Roger

another aspect i noticed when reading the posts on this site, is that frequently for MC people, what works now may not still work in 2 years time, as our bodies change (age) then the reactions and triggers change slightly.
tolerance and intolerance to meds change, and this could be affected by meds taken for other health conditions.

my understanding from what i have read on this site there is a 'cocktail' of things that can cause triggers
- medications
- other health conditions and their subsequent treatment
- short term conditions such as flu or dental issues
- diet / ingredients
- stress

the decisions each of us make in relation to management of MC takes into consideration the ingredients of the cocktail above, along site financial, quality of life, acceptance of management techniques chosen.

There is no guarenteed solution and no easy solution. (and by the content of your first post this is maybe not what you want to hear)

Your relative is very lucky to have a pro-active willing to help person like yourself.

[wonderwoman]

What comes to my mind is she/you could order GF items on line and they are delivered right to the door. I did a google search on order gluten free foods and came up with a lot of sites. They tend to be pricey, however, it might help her out with the main meal since she has back problems and can't stand long to prepare items.

An example is http://www.glutenfreemall.com/ and there are many more.

I was at a GF Expo this weekend sponsored by the National Celiac Foundation and there were delicious GF soups samples given out. It was dehydrated and you just added water. There was Lasagne and other delicious main coarse items. All of these could be ordered and sent to you.

I don't know your location but we have GF entrees and bakery in the frozen section at some of the larger grocery chains. We have Trader Joes, Sprouts Farmers Market, Frys and Whole Foods.

[harma]

My experience on this board (about 8 months now), reading all the messages here, that age is not of real influence on this disease. I mean in the way people experience it. The age of members varies here from toddlers to grand parents and everything in between. Almost everybody is struggling with questions as medication or no medication and in case the choice is medication, what kind of medication. A lot of us are not cheering by the idea of taking steroids (including me). Another question is diet or not, gluten free, milk free and/or soy free. Besides that as long as the gut is not healed it is complicated search of trial and error what other foods (besides the intolerances) you can stand or not. For a lot of us the list of what we can't eat is long. For older and younger members

Another question is do you do the enterolab testing or not. Some do, others don't.

All these questions are IMO not age related, but is something we all have to face. And also a lot (again not age related) experience other symptoms caused by the MC than just diarrhea.

In certain life phases, some things can be more complicated. For example if you work and you are gluten, soy, egg, yeast and milk free. That means all the food for the day have to be prepared the evening before en brought for the whole day. Or as gabes does, cook meals for the whole week on Sunday afternoon. Quite often this also means eat your hot meal (lunch and/or dinner) cold.

Side effect of the enterocort are also something of any age. I am in my early forties and had horrible side effect of a dose of 2 pills a day. Thanks god, I can survive on a lower dose.

Gluten, soy, milk (and what else) free cooking can be very simple and very quick. Just cook or bake fish, meet (beef, pork, chicken), rice, vegetables. The adding of spices and herbs is not needed, also not the adding of 10 other ingredients. My biggest appetizer is still apple sauce (herbs and spices are still too complicated for my gut). Vegetables also can be bought in yarn or cans. Ready in few minutes. Fish also can be bought in cans. Okay not the yummiest food, but easy and quick. Also gluten free and very cheap, rice crackers.

I have to admit Greg, I got a little bit irritated by the sentence in your message "which I have read recently seems to have little mention of elderly sufferers of MC, LC and their special concerns, including". This board is for everybody young, old, men, women, working - retired people. With special concerns for everybody, also the elderly people with MC. Because the concerns are the same, as I have tried to explain before. Although great what you are doing for your elderly relative.

harma

[Joefnh]

Harma thanks for your well thought out post. I am 44 and was diagnosed with CC (MC) and Crohns just this last April. In talking with Gabes, she has adopted a simplified food list that is also GF/DF/LF/LF diet.

I initially tried just avoiding gluten etc. but was eating a wide variety of foods; this while helped somewhat did not settle down the symptoms, especially after eating. I am now in my second week of the simplified foods approach, and find that it works quite well. Given that my energy levels are still quite low I have also borrowed the idea of cooking all the weeks meals on the weekend; this step alone has made the work week far more tolerable.

I also take Entocort 9mg a day and fortunately have found that the side effects have been very minimal and quite tolerable; although I am looking forward to being able to taper doen off of this medication in the near future.

This disease does seem to offer equal opportunity affliction. As we age, things can medically start to stack up and this disease coupled with other normal age related medical issues can make treatment a more daunting task. I believe Greg is discussing the frustrations of both caring for his relative, as well as the medical complications that can come about with an individual in advanced years.

--Joe

[tex]

I believe Greg is discussing the frustrations of both caring for his relative, as well as the medical complications that can come about with an individual in advanced years.

That's my point. All the other stuff is geriatrics. Geriatric issues are separate and distinct from the domain of microscopic colitis. They're simply a fact of life that comes with aging.

Tex

[harma]

Of course I understand when people age combined with other health issues dealing with MC can be tough. That was not my issue. It is just, young or old, to control the disease you have three option: meds, diets or combi diet/meds. Side effect of the meds are possible at any age and sorting out the diet is not easy and fun at any age either.

[Fiona Ellis]

I have just joined this as my mother has been diagnosed with MC and is having a serious bout, with potential dehyrdation. Very weak, having had prendiscalone for 3 weeks with severe side effecst, inflamed gullet so coudl not eat much, so interested to hear about the other steroid Budasilone ?. will now try to get her to change diet, harder at 80 , but she is eating nothing at present..anddoctor has advised only potato , rice or bread, no eggs, dairy .
any tips form others on how to nurse and care for someone..? Fiona

[tex]

Hi Fiona,

Welcome to our internet family. Budesonide, (in the form of Entocort EC capsules in the U.S., or Budenofalk, in many other countries), is generally much safer to use than Prednisone, (it has a much lower risk of side effects), and is usually just as effective as the other corticosteroids, for treating inflammatory bowel disease. Still, a few people have problems with budesonide, also, because all medications carry some risk of adverse reactions.

Eliminating all bread, (and any food that contains any wheat flour, rye, or barley), is a good plan, and avoiding all dairy products is also a good idea, because most of us with MC react to those foods. A few of us are sensitive to eggs, but unless you know that she is intolerant of eggs, it probably isn't necessary for her to avoid them, (unless they obviously make her sicker). Eggs are a good source of protein, and she needs protein for her intestines to heal. About half of us are sensitive to soy, and soy derivatives. Dehydration is the biggest risk with MC, so please be sure that she is drinking enough water, and replacing her lost electrolytes, especially sodium and potassium. Bananas are a good source of potassium, if she can tolerate them.

In the long run, she will also need vitamin supplements, especially the B vitamins, and most importantly, vitamin B-12. Also, she is probably very low on vitamin D3, so she needs vitamin D3 supplements, in order to help with her healing, (something in the neighborhood of 4,000 to 6,000 IU per day, unless she is exposed to a lot of sunshine, which will also help to replenish her D3.

If you need some good gluten-free recipes for reference, one of our members is a professional chef, and she has posted several hundred recipes, which are free of gluten, dairy, and soy. She also has posted cooking tips, and how to make substitutions, etc. You can view her recipes here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

Again, welcome aboard, and please feel free to ask anything that comes to mind.

Tex (Wayne)

[ant]

Dear Fiona

to you and your mother. It can take quite some time for the gut to heal even with medication and diet. But if you/your mother is able to determine her food intolerances and stick to avoiding them she should start on a path to improvement. I would guess that one option is that if you have a freezer and microwave you could pre-prepare dishes that could be heated up easily in a microwave.

All best, Ant

[Fiona Ellis]

thanks for the advice and good wishes. we have started the Pepto Bismol today .I wanted to check whether this works with Immodium. Lopramide..or if best to stop the Immodium ? It does not particualrly seem to be stopping the diarrohea anyway.
On food she has had 24 hrs without food, and may try some rice or potatoes today.
She is really weak and so vitamins must be good too.. I will ask docter about entocort next week. Its a long weekend here so no chance of that before wednesday.
Fiona

[tex]

The Pepto treatment works, provided that the GF diet is also used, and assuming that the diet is continued after the Pepto treatment is completed. Actually, as long as a patient does not have any adverse symptoms to the Pepto treatment, it is quite effective. You might be interested in reading this old thread where we discussed this previously:

http://www.perskyfarms.com/phpBB2/viewt ... +treatment

If the Pepto treatment works, symptoms should be much better within a few weeks. As far as I am aware, it should be safe to take Imodium or Loperamide together with Pepto-Bismol, but it shouldn't be necessary, as the Pepto is a pretty potent tratment by itself, (bismuth subsalicylate actually has some antibiotic properties). Her doctor should know if it is safe to take them together, so it might be a good idea to ask him, (after the holiday), but it should be safe to take them together until then, if you feel that they are needed. Also, if the Pepto treatment plus the diet works, your mum shouldn't need Entocort, but if she still has diarrhea after the 8-week treatment, then Entocort would be a good choice.

Good luck with the treatment. Rice and potatoes are generally safe foods for most of us, and chicken soup is excellent, during a flare.

Tex