New Collogenous Patient

[lsedels]

Hi,

My Mom (91 y/o) has just been diagnosed with Collogenous Colitis. She has been having severe diarrhea with no formed BMs for about 6-8 weeks ... most recently on the order of 10-15 per day. The diagnosis was made via CT and colonoscopic biopsies. I am so thankful that it isn't something like Colorectal Cancer, but this disease has still impacted her life substantially and in a very debilitating way.

I fully realize and understand that I need to continue to read through the sticky posts and information on this site. I will do so as time allows, but wanted to introduce myself and ask a few basic questions now.

She has been started on Uceris (budesonide) 9mg and has been on it for 3 days thus far. Unfortunately, the gastro delayed doing a colonoscopy and CT on her because he was hoping the condition would reverse and he didn't want to put a 91 y/o through these procedures with the increased risk that goes along with her age. She has tested negative for Celiac, and stool tested negative three times for any other causative agents. She had already switched to Soy and then Almond Milk a long time ago. 4 Imodiums per day had no efficacy.

Her current diet consists primarily of toast/english muffins, bananas, turkey breast, grilled chicken/salmon/swordfish, rice, pasta, potatos, plain cookies, tea, water, gatorade, hamburgers/steak. We have virtually eliminated yogurt, ice cream (this one is killing her), grains/bulk, roughage, vegetables ... although seeing that this hasn't done any good ... she does insist on eating a piece of lettuce every once in a while.

In addition, I didn't like the way she looked about 10 days ago, so I took her in and insisted upon having blood drawn for electrolytes. Potassium came back low. She has since been on Potassium supplements, which she has resisted taking (six capsules a day). Latest result is back in the normal range, but at the low end. We will redo blood again next week. The doc expects that as the Uceris has a chance to work, she will see an improvement.

She is a widow, lives in Florida, but has been living with me in a suburb just north of NYC for the past month. I have essentially been holding a full time job and also been her full time caretaker. In her case. many of the BMs have been uncontrolled (fecal incontinence) and it has been a lot of work. I am pretty exhausted.

So here are an initial set of questions that I am hopeful the group here might be able to help me with:

1. According to what I've read, there is no cure. Yet I also read that budesonide is pretty effective. What are reasonable expectations in terms of results from budesonide and how long should we expect it to take before we see any change? For example, is it reasonable to expect that she could return to "normal"? Is it more reasonable to expect normal BMs with a bad one every few days? It is more reasonable to expect to never have a normal BM again? I realize everyone is different, but what is the experience of most patients with this disease in terms of the ability to return to something reasonably close to what they were before in terms of lifestyle?

2. What are thoughts in terms of budesonide maintenance after the initial 4 week course?

3. She tried the BRAT diet for a few days (this was a few weeks ago) and it really didn't make a difference in the symptoms. Any suggestions on how to identify triggers? Should we wait until the 4 week budesonide course is complete to assess the efficacy of it? And can you make any suggestions as to some very common triggers? Remember, we are talking about a 91 y/o who may not have the wherewithall and patience to start keeping diaries and doing trial and error with every single food that she ingests. Do we still suspect gluten as a likely trigger even with a negative Celiac test?

4. She was taking Culturelle, and switched to Align a couple of weeks ago. Thoughts on probiotics?

5. She complains of nausea/sour stomach, then gets hungry, then goes back to sour stomach ... keeps shifting back and forth very quickly. Fills up very quickly (isn't able to eat what she normally eats). Also complains of a very very foul taste in her mouth and on her tongue ... which she blames on the potassium supplements but the doctor says it's not likely. Are these upper GI symptoms common with this disease (she had an upper endoscopy with the colonoscopy and it checked out ok). The gastro took her off Aciphex (she had GERD well before any of this), saying that it can be a trigger. She still takes Zantac twice a day.

Thanks in advance for your help. Sorry for this being so long.

Larry

[brandy]

Hi Larry,



I'll address your questions.

1.

What are reasonable expectations in terms of results from budesonide and how long should we expect it to take before we see any change? For example, is it reasonable to expect that she could return to "normal"? Is it more reasonable to expect normal BMs with a bad one every few days? It is more reasonable to expect to never have a normal BM again? I realize everyone is different, but what is the experience of most patients with this disease in terms of the ability to return to something reasonably close to what they were before in terms of lifestyle?

I'm a 54 year old F with CC. Folks on this forum generally have good results adopting a GF diet coupled w/ Budesonide. Several members are currently on Uceris. I took Entorcort. They both are budesonide but are absorbed different places in the GI tract maybe Tex can explain the difference. Hundreds of members have taken Entocort. Uceris is newer and I believe has not been tried by many members. My experience with Entocort was in 3 days it stopped the D and in 3 weeks I had constipation and had to step down to a lower dose. (I've been in remission for about 6 months and maintain on diet alone now.) Some board members take longer to respond to Entocort. Adopting GF diet coupled with budesonide should get your mother some level of "normalcy." Please note overall it took me about 2 years to heal---4.5 months on Entocort and about 16 months overall to heal from the fatigue etc.

****Please note that there are some prescription drugs that prevent "normalcy." Tex would be better to ask about them.******

2.

What are thoughts in terms of budesonide maintenance after the initial 4 week course?

Please note my experience is with the Entocort form of budesonide. History of this board is folks are generally on Entocort 4-7 months or more. Some folks are on a low dose maintenance course and have been on low dose of Entocort for a number of years in order to get their life back combined with GF diet. Anything less than 3 months of Entocort = high incidence of relapse. I can't comment on Uceris as I'm not familiar with it, perhaps some other members can chime in but seat of the pants 4 weeks on Uceris does not sound anywhere near long enough.

3.

She tried the BRAT diet for a few days (this was a few weeks ago) and it really didn't make a difference in the symptoms. Any suggestions on how to identify triggers? Should we wait until the 4 week budesonide course is complete to assess the efficacy of it? And can you make any suggestions as to some very common triggers? Remember, we are talking about a 91 y/o who may not have the wherewithall and patience to start keeping diaries and doing trial and error with every single food that she ingests. Do we still suspect gluten as a likely trigger even with a negative Celiac test?

Pretty much everyone responds to GF diet regardless of negative Celiac. It can take 3 months or so. i.e. 1 week trial is no where near enough. My parents are 78 so believe me I get it when you say difficulty in changing diet at 91. I'd suggest keep her current diet with the following changes.

toast/english muffins, bananas, turkey breast, grilled chicken/salmon/swordfish, rice, pasta, potatos, plain cookies, tea, water, gatorade, hamburgers/steak.

Swap her toast out to Udis GF bread in freezer section of grocery.
Swap her English muffins out to Udis GF English muffins in freezer section of grocery or health food store.
No butter on anything. She can use a extremely thin scrape of jam on the GF breads or earth balance soy free spread in dairy section of large grocery.
Keep bananas.
Keep turkey, chicken, salmon, swordfish.
Keep rice.
Swap pasta to GF pasta. Tinkyada pasta is safe. Ask at your grocery for location.
Keep potatoes.
Swap cookies to GF cookies. Try to keep to 1 or 2 per day. Sugar slows our healing.
Tea is safe. I'm ok w/ stevia as sweetener in moderation. If she uses sugar use a smidge.
Water is safe.
Eliminate Gatorade. This is way too many ingredients for us. There is a dehydration replacement make your own recipe on the start page of this forum that is safer.
Keep hamburgers and steak. Use GF bread or GF hamburger bun for hamburgers.
Forgot to mention olive oil is generally safe. Use that as a butter replacement on pasta/rice etc.

She will need a lot of protein to heal. When you cook dinner cook extra protein so she has protein for breakfast and lunch she can heat up.
i.e. hamburger for breakfast and for lunch. In general, folks heal faster with a lot of protein.

4.

She was taking Culturelle, and switched to Align a couple of weeks ago. Thoughts on probiotics?

Probiotics help a minority of board members. The majority react negatively or have no change. If you use probiotics stick to culturelle or VSL#(a number here I can't remember.) They are dairy free. Culturelle is cheaper. VSL has to be ordered in by your pharmacist but no prescription necessary.

If your Mom goes GF and continues with the Uceris or Entorcort she should be able to get her life back and return to Florida. It could take awhile. Also if she does not respond to Uceris after 4-6 weeks I'd switch her over to Entocort. On Entocort realistic time period is 4.5 months to 7 months or even an ongoing small maintenance dose. Generally the younger woman are encouraged to get off of Entocort after a couple of years due to bone issues. If I was 91 F and Entocort allowed me to get my life back and home to FL I would consider a long term low dose maintenance dose.

We have a number of 80 somethings who get their life back and travel etc. It is a realistic expectation.

Brandy

[brandy]

Hi Larry,

Forgot to mention, I'd encourage your mother to read the success story threads. http://www.perskyfarms.com/phpBB2/viewforum.php?f=71.

Also, my Dad just had shoulder replacement surgery. We hired CNAs for a 6 week gig to help Dad out until he could drive. It really helped. It sounds like your Mother is in good shape if she was living alone and wants to get back on her own. If you could hire some short term CNAs to help with the groceries, laundry and cooking for 4-6 weeks it would give you a break.

Brandy

[tex]

Hi Larry,

Welcome to our internet family. I'm sorry that your mother (and you) are having to deal with this disease. Yes, it's a debilitating disease for anyone, and it's especially tough for senior citizens who should be enjoying their golden years, instead of dealing with a disease that can keep us virtually confined to the bathroom if we're unable to control the symptoms.

I was sidetracked for a while before I was able to finish this post, and I see that Brandy has posted before I was able to finish this and post it. Being naturally lazy by nature, rather than to rewrite my post, I'll just leave it as I originally wrote it, but please be aware that I agree with everything that Brandy wrote. It appears that she did a good job of covering everything. Please just consider this as an addendum to what she wrote, and try to ignore the redundant parts.

Potassium deficiency is very common with MC (CC) because the high volume diarrhea associated with the disease causes dehydration and rapidly depletes electrolytes. Dehydration can also make nausea and neurological symptoms worse. I'll take a stab at trying to answer your questions.

1. According to what I've read, there is no cure. Yet I also read that budesonide is pretty effective. What are reasonable expectations in terms of results from budesonide and how long should we expect it to take before we see any change? For example, is it reasonable to expect that she could return to "normal"? Is it more reasonable to expect normal BMs with a bad one every few days? It is more reasonable to expect to never have a normal BM again? I realize everyone is different, but what is the experience of most patients with this disease in terms of the ability to return to something reasonably close to what they were before in terms of lifestyle?

Yes, there is no known cure, but most of us are able to control our symptoms and get our life back, by carefully avoiding the foods that cause us to produce antibodies. The antibodies perpetuate the inflammation that causes MC/CC. It seems that when the genes that predispose to MC/CC are triggered, the genes that predispose to gluten sensitivity are also triggered, and this makes us vulnerable to certain additional food sensitivities which now trigger an autoimmune reaction for us if we eat them. Budesonide (and certain other medications) can mask the symptoms and help to make life less stressful, but unfortunately the only way to stop the inflammation from being generated in the first place is to totally avoid all of the foods that cause us to react, and these foods vary by the individual.

For a few people, budesonide can control the symptoms without any diet changes, but for most of us, at least the most significant food sensitivities must be totally avoided, even when taking budesonide, if remission is to be attained and maintained. And of course, if the budesonide treatment is stopped, then the symptoms will soon return, unless the proper diet changes were made early on in the treatment. If budesonide is going to work, most people see significant improvement within 2 weeks or less, but in a few cases it takes a month or more. It doesn't work for everyone, and it triggers an adverse reaction for some people, usually in the form of neurological symptoms.

Typically, if patients will avoid gluten and dairy products, budesonide will cover the less significant food sensitivities, and it will cover small indiscretions (or minor cross-contamination) in the diet, and the patient can enjoy a near-normal lifestyle (as long as the treatment continues). The better the diet control, of course, the less budesonide will need to be used as a maintenance treatment.

Many of us here, who follow a strict diet so that we totally avoid all of our food sensitivities, have normal BMs, and no other significant symptoms, and we're pretty much able to enjoy a normal life (other than the diet restrictions), and we're able to do so without any need for anti-inflammatory medications

2. What are thoughts in terms of budesonide maintenance after the initial 4 week course?

If the budesonide controls her symptoms, she might be able to reduce the dosage to a maintenance rate, and continue that way indefinitely. At her age, she shouldn't need to worry about the budesonide causing an osteoporosis problem (especially if the Uceris works, so that she doesn't have to switch to Entocort). If she is willing to change her diet to cut out gluten (along with dairy), the odds are very good that she would be able to enjoy a close-to-normal lifestyle indefinitely, with or without the budesonide (depending on how carefully she is able to follow the diet).

3. She tried the BRAT diet for a few days (this was a few weeks ago) and it really didn't make a difference in the symptoms. Any suggestions on how to identify triggers? Should we wait until the 4 week budesonide course is complete to assess the efficacy of it? And can you make any suggestions as to some very common triggers? Remember, we are talking about a 91 y/o who may not have the wherewithall and patience to start keeping diaries and doing trial and error with every single food that she ingests. Do we still suspect gluten as a likely trigger even with a negative Celiac test?

Most people make the same mistake. It takes months for the BRAT diet to bring remission for most of us, and most people don't stay on it long enough to give it a chance. Gluten antibodies have a half-life of 120 days, so they continue to dominate our immune system reactions for months after gluten is withdrawn from the diet. That's why short BRAT diets rarely work.

The most common triggers are gluten, dairy, soy, and eggs, in that order. If you can justify the cost, the fastest, most reliable way to track down her food sensitivities would be to order a stool test kit from EnteroLab, in Dallas, TX. Their tests are the only ones that provide reliable results for the types of food sensitivities that are associated with MC/CC. The blood tests offered by most labs (particularly the celiac screening blood tests) are pretty much worthless for determining food sensitivities for someone who has MC. There are no blood tests that will reliably detect non-celiac gluten sensitivity, and even the official celiac screening blood tests will only detect fully-developed caliac disease. They will not detect an early stage of the disease, and it typically takes many years for the disease to mature. The most beneficial tests for most of us are included in the Panel A1 + C1 tests offered by EnteroLab. The combination is offered at a discounted rate, at the link below:

https://www.enterolab.com/StaticPages/T ... #PanelA1C1

Yes, food sensitivities can be tracked down by using an elimination diet, but the stool tests are much more accurate, faster, and reliable.

4. She was taking Culturelle, and switched to Align a couple of weeks ago. Thoughts on probiotics?

Very few of us are able to tolerate a probiotic while we are reacting. For most of us, they do nothing to help, and for many of us, they make our symptoms worse, so we are better off without them. After we are in remission, we are better able to tolerate them, but we probably don't need them after we are in remission.

5. She complains of nausea/sour stomach, then gets hungry, then goes back to sour stomach ... keeps shifting back and forth very quickly. Fills up very quickly (isn't able to eat what she normally eats). Also complains of a very very foul taste in her mouth and on her tongue ... which she blames on the potassium supplements but the doctor says it's not likely. Are these upper GI symptoms common with this disease (she had an upper endoscopy with the colonoscopy and it checked out ok). The gastro took her off Aciphex (she had GERD well before any of this), saying that it can be a trigger. She still takes Zantac twice a day.

That's very common for many of us here. Nausea/vomiting was a big problem for me when I was still reacting. Filling up quickly indicates that she has gastroparesis (slow gastric emptying), and that's also somewhat common with MC. It's also a common problem with diabetes. With MC though, the problem tends to disappear after we change our diet so that our gut can heal, and we get our other symptoms under control. Many of us eat 4 or 5 small meals each day, rather than 2 or 3 larger ones.

The bad taste could be from yeast overgrowth, of from acid reflux, both of which are associated with MC. The yeast should fade away as her gut heals, and the best way to prevent reflux problems is to avoid or at least minimize foods that are known to cause acid reflux (spicy foods, coffee, alcohol, etc.), avoid eating 2 or 3 hours before bedtime, and avoid sleeping on the right side (because when we sleep on our right side, the top opening to the stomach, the lower esophageal sphincter (LES), is lower than the stomach, and if the sphincter muscles have been weakened (because of using a proton pump inhibitor, or because of weak stomach acidity), this can allow stomach contents to backflow into the esophagus.

As we get older, we tend to lose the ability to produce adequate amounts of stomach acid, and this can cause poor digestion, resulting in indigestion, heartburn, nausea, and acid reflux. The reason why it causes acid reflux is because the clenching strength of the LES is determined by the pH of the stomach contents on the back side of the LES. The lower the pH (IOW, the greater the acidity), the tighter the LES clinches. If the acidity is weak, the LES doesn't have much incentive to remain tightly clenched. That's why PPIs weaken the LES, because like any muscle, if we don't use it, it becomes weaker over time. It's possible that your mother might need something to increase stomach acidity, rather than Zantac to reduce it. When a patient complains of reflux or stomach pain, doctors virtually never bother to test stomach acidity — instead they prescribe a PPI or an antacid, which may be just the opposite of what the patient actually needs. The truth is, very, very few patients actually have too much stomach acid, but that doesn't keep doctors from prescribing acid reducers right and left, because drug reps promote PPIs and H2 antihistamines — they never promote stomach acid enhancers (such a Betaine HCL), because they're cheap.

I hope that some of this is helpful. Again, welcome aboard, and please feel free to ask anything.

Tex

P. S. Regarding the distinction that Brandy mentioned, between Uceris and Entocort EC, Entocort becomes activated in the lower third of the small intestine (the ileum), and the colon, whereas Uceris does not become active until it is well into the colon (presumably past the right-side colon). This is because Uceris was designed primarily to treat UC, which typically first develops at the distal end of the colon (at the rectum), and progresses backward up the colon.

By contrast, MC can affect any part of the digestive system, and it typically occurs in scattered patches, that are often more concentrated in the terminal ileum and the right-side colon. Because of this distribution issue, for some patients, Uceris may not work as well as Entocort. If it works, it is the preferred choice, because by not becoming activated in the small intestine, none of it is absorbed into the bloodstream. By comparison, research shows that up to 19 % of budesonide in Entocort can be absorbed into the bloodstream. While this is much, much less likely to cause systemic problems the way that the other corticosteroids tend to do, it still poses a slight (greatly reduced) long-term risk of adversely affecting the adrenals and/or increasing a risk of developing osteoporosis. Theoretically at least, Uceris should sidestep that problem, so that is why GI docs prefer to prescribe it in cases where it might be effective, especially if long-term use might be a consideration.

[lsedels]

Hi Larry,



I'll address your questions.

1.

What are reasonable expectations in terms of results from budesonide and how long should we expect it to take before we see any change? For example, is it reasonable to expect that she could return to "normal"? Is it more reasonable to expect normal BMs with a bad one every few days? It is more reasonable to expect to never have a normal BM again? I realize everyone is different, but what is the experience of most patients with this disease in terms of the ability to return to something reasonably close to what they were before in terms of lifestyle?

I'm a 54 year old F with CC. Folks on this forum generally have good results adopting a GF diet coupled w/ Budesonide. Several members are currently on Uceris. I took Entorcort. They both are budesonide but are absorbed different places in the GI tract maybe Tex can explain the difference. Hundreds of members have taken Entocort. Uceris is newer and I believe has not been tried by many members. My experience with Entocort was in 3 days it stopped the D and in 3 weeks I had constipation and had to step down to a lower dose. (I've been in remission for about 6 months and maintain on diet alone now.) Some board members take longer to respond to Entocort. Adopting GF diet coupled with budesonide should get your mother some level of "normalcy." Please note overall it took me about 2 years to heal---4.5 months on Entocort and about 16 months overall to heal from the fatigue etc.

****Please note that there are some prescription drugs that prevent "normalcy." Tex would be better to ask about them.******

2.

What are thoughts in terms of budesonide maintenance after the initial 4 week course?

Please note my experience is with the Entocort form of budesonide. History of this board is folks are generally on Entocort 4-7 months or more. Some folks are on a low dose maintenance course and have been on low dose of Entocort for a number of years in order to get their life back combined with GF diet. Anything less than 3 months of Entocort = high incidence of relapse. I can't comment on Uceris as I'm not familiar with it, perhaps some other members can chime in but seat of the pants 4 weeks on Uceris does not sound anywhere near long enough.

3.

She tried the BRAT diet for a few days (this was a few weeks ago) and it really didn't make a difference in the symptoms. Any suggestions on how to identify triggers? Should we wait until the 4 week budesonide course is complete to assess the efficacy of it? And can you make any suggestions as to some very common triggers? Do we still suspect gluten as a likely trigger even with a negative Celiac test?

Pretty much everyone responds to GF diet regardless of negative Celiac. It can take 3 months or so. i.e. 1 week trial is no where near enough. I'd suggest keep her current diet with the following changes.

toast/english muffins, bananas, turkey breast, grilled chicken/salmon/swordfish, rice, pasta, potatos, plain cookies, tea, water, gatorade, hamburgers/steak.

Swap her toast out to Udis GF bread in freezer section of grocery.
Swap her English muffins out to Udis GF English muffins in freezer section of grocery or health food store.
No butter on anything. She can use a extremely thin scrape of jam on the GF breads or earth balance soy free spread in dairy section of large grocery.
Keep bananas.
Keep turkey, chicken, salmon, swordfish.
Keep rice.
Swap pasta to GF pasta. Tinkyada pasta is safe. Ask at your grocery for location.
Keep potatoes.
Swap cookies to GF cookies. Try to keep to 1 or 2 per day. Sugar slows our healing.
Tea is safe. I'm ok w/ stevia as sweetener in moderation. If she uses sugar use a smidge.
Water is safe.
Eliminate Gatorade. This is way too many ingredients for us. There is a dehydration replacement make your own recipe on the start page of this forum that is safer.
Keep hamburgers and steak. Use GF bread or GF hamburger bun for hamburgers.
Forgot to mention olive oil is generally safe. Use that as a butter replacement on pasta/rice etc.

She will need a lot of protein to heal. When you cook dinner cook extra protein so she has protein for breakfast and lunch she can heat up.
i.e. hamburger for breakfast and for lunch. In general, folks heal faster with a lot of protein.

4.

She was taking Culturelle, and switched to Align a couple of weeks ago. Thoughts on probiotics?

Probiotics help a minority of board members. The majority react negatively or have no change. If you use probiotics stick to culturelle or VSL#(a number here I can't remember.) They are dairy free. Culturelle is cheaper. VSL has to be ordered in by your pharmacist but no prescription necessary.

If your Mom goes GF and continues with the Uceris or Entorcort she should be able to get her life back and return to Florida. It could take awhile. Also if she does not respond to Uceris after 4-6 weeks I'd switch her over to Entocort. On Entocort realistic time period is 4.5 months to 7 months or even an ongoing small maintenance dose. Generally the younger woman are encouraged to get off of Entocort after a couple of years due to bone issues. If I was 91 F and Entocort allowed me to get my life back and home to FL I would consider a long term low dose maintenance dose.

We have a number of 80 somethings who get their life back and travel etc. It is a realistic expectation.

Brandy

[Sheila]

My mother was diagnosed with CC in her 80s. She tested negative for celiac disease and decided to have Enterolab testing done. Her results indicated gluten intolerance. She insisted she couldn't comply with a gluten free diet and thought it was unnecessary since she had a negative celiac blood test. Budesinide worked for a while but, because her diet remained the same, the WD resumed. My mother ate an extremely healthy diet and couldn't conceive how it could make her sick. She came down with a horrible, itchy rash over one-half of her body. Doctors couldn't come up with a diagnosis. She passed away at age 92, still suffering with fecal incontinence. It was exhausting and disheartening.

After she passed away, I got sick and was diagnosed with CC, negative celiac test, positive Enterolab for gluten, soy, dairy and eggs. I had genetic tests done and was found to have a celiac gene and a gluten intolerance gene. Obviously, my mother had celiac disease as well. Had she known that, she would have changed her diet.

Please try to convince your Mom to try a gluten free diet. I watched my mother suffer for years and it was heartbreaking. It would be wonderful if she had genetic and Enterolab tests.

Good luck and good wishes,

Sheila W

[Gabes-Apg]

Larry
you have done well to support your mother thus far.

I can imagine how your brain might be spinning after reading some of the posts here, Plus Brandy, Tex, Sheila's replies and wondering what the hell do I do now!

deep breaths. MC can be awful. and it is frustrating that most of the medical fraternity dont full understand it, and have limitations in how they can help patients (and patients families)

Sheila has explained the importance of avoiding Gluten. there are hundreds here that tested negative to the celiac blood test, but felt 20 times better not ingesting gluten.
The Budesinide will help, and might reduce the amount of fecal incontinence. It wont stop the secondary issues that gluten inflammation causes, joint aches, foggy brain, lethargy, pain/cramping, gas, gastric reflux, skin issues, etc etc
Healing can only occur with all major triggers are removed. I can understand given your mothers age, making drastic diet changes is difficult. With the replies that have been given and any other information you have got from other posts/discussions, this is something you may want to discuss with your mother, and any other family members to decide how much change you wish to make.
Brandy has provided some good replacements options to adjust the current eating plan.
It generally takes months (not weeks) to see improvements to diet changes.

The other important thing when your brain has some time to contemplate, IBD's are genetically linked, when you have some time maybe consider getting enterolab type testing for yourself. If you do carry the genetics, there is a high probability of you getting MC. Making some changes to your eating plan/lifestyle now may protect you from getting chronic symptoms later.

All the best to you, your mum and any other family trying to deal with this.

[DJ]

Ditto! Most of us have more than one sensitivity but gluten is the big one. Cutting back on gluten is not adequate for a MC'er with gluten sensitivity. Elimination is key.

[tex]

Larry,

Since Sheila and Gabes mentioned genetic testing, I thought that I should point out that EneroLab offers a better gene test than most labs, at less than half the cost of what most labs charge for a similar test. The reason why I consider the EnteroLab gene test to be much better than the tests offered by their competitors is because most labs only test for the 2 most common celiac genes. EnteroLab not only tests for the celiac genes, but they also test for any non-celiac gluten-sensitive genes and report them to you. You get a lot more useful information for your money.

Obtaining a test sample for the gene test is simple. It only requires rubbing a cotton swab on the inside of the cheek to collect DNA material. After it dries, it is then sent to the lab. Here's a link to the test that I'm referring to:

https://www.enterolab.com/StaticPages/T ... .aspx#gene

Tex

[Leah]

You're doing a great job with her Larry. This is such a tough situation. Everyone here has given you great advice. Gluten free is a must. 100% gluten free. Read labels. Raw fruits and veggies are too hard on an inflamed gut, but well cooked ones …especially squashes and carrots work well for many of us. Keep meals small and simple. Processed foods are usually not good at the beginning of this journey. I even stayed away from GF bake dgoods for the first six months of recovery.

I was on Entocort for 6 months. I started to wean down the dose after one month and continued in that vain until I was off of it. It seems that at least 4 months is needed to prevent recurrence… But that only holds true if her diet is adhered to.

You may want to purchase Tex's book. Just click on the picture of it in the upper right hand corner of this page. It explains so so well.

We are all here to help each other. Good luck and keep us posted on her progress

Leah

[nerdhume]

Larry,
Welcome to the board. I agree with all the great advice you have received from the others. Just wanted to add that I was on Uceris for 2 months and it stopped the WD immediately. While I was on it I changed my diet completely. Uceris is designed to break down in the colon so it has minimal effect on the rest of the body. At her age your mother could probably just stay on it indefinitely.
The enterolab test is very important if you don't have patience for a very detailed food diary. Mine came back sensitive to dairy, gluten, soy and eggs. I found it harder to stop the soy than the gluten. Soy is in everything!
As for the genetic tests I would suggest doing it not only for her, but for yourself, you need to know what's in the genes.
Ask anything you need to know here, there will be more help on this group than you can get from anywhere else.

[lsedels]

Thank you all for your help. I really appreciate it.

I started speaking with her and having her read some of the responses yesterday. She is overwhelmed. It all seems so complicated to her as a 91 y/o especially. But I think I have piqued her interest in starting a GF diet. Not sure that she's gonna like it. And not sure that she's happy about it taking weeks or months to discover whether something is a trigger or not. But there is at least some interest and motivation. The Uceris is not really working thus far (after 4 days) which concerns me. One of my major concerns is the inflammation that was found at the Cecum ... and whether she really needs Entocort. Although at her age, I do think the risks of Entocort are higher. This is something that I think I may want to take her for a 2nd opinion on (to Mount Sinai in NYC as soon as she can go out for a few hours without having to "go").

I will respond to some individual posts also because I do have some questions and comments. Just wanted to thank you all.

[lsedels]

Larry,

Since Sheila and Gabes mentioned genetic testing, I thought that I should point out that EneroLab offers a better gene test than most labs, at less than half the cost of what most labs charge for a similar test. The reason why I consider the EnteroLab gene test to be much better than the tests offered by their competitors is because most labs only test for the 2 most common celiac genes. EnteroLab not only tests for the celiac genes, but they also test for any non-celiac gluten-sensitive genes and report them to you. You get a lot more useful information for your money.

Obtaining a test sample for the gene test is simple. It only requires rubbing a cotton swab on the inside of the cheek to collect DNA material. After it dries, it is then sent to the lab. Here's a link to the test that I'm referring to:

https://www.enterolab.com/StaticPages/T ... .aspx#gene

Tex

What is the difference between this test using a swab from the cheek vs. the stool tests? Which are recommended? Has anyone ever been successful in getting an insurance company to cover any of these tests?

[tex]

Larry,

The swab test is for DNA analysis, to determine what type of genes the patient has. Our genetics define what diseases we may be vulnerable to develop, but they cannot tell us whether we actually have any particular disease — only that we are a possible candidate. But knowing which genes we have, can help us to make decisions to ward off certain diseases that might otherwise be in our future, if we don't take corrective action. And knowing which genes we have can help us to decide how seriously we need to consider certain issues — is something really a threat, or not?

The stool tests are to detect and define food sensitivities. They look for antibodies to the foods most likely to cause us to react, and pinpoint those that do cause a reaction. The stool test results help each of us (allow each of us) to design an individual diet that will stop the inflammation, and allow our gut to heal.

Yes, this disease (and treating it) can be very overwhelming because of all the details, but we just have to approach it in an orderly fashion, improving our treatment program as we go. Obviously, we can't understand everything right up front. We have to learn as we go, and keep improving. That's why we're all here, to learn from each other what works for others to control this disease, when our doctors can't help us.

We learn to live life one day at a time, and stop worrying about what we may have to do tomorrow. Tomorrow will take care of itself, if we do a good job of living today.

Tex

[Leah]

I'm sure at 91, this would seem almost impossible to wrap her head around. Most much younger people also have a hard time with it.

If you take gluten out of her diet, she will probably show an improvement within weeks, but it takes months to rid the body completely of antibodies. Maybe if she sees SOME improvement, she will be more likely to stick with it. For now, the easiest way to do the diet is to keep her diet very simple. Cooked proteins, cooked veggie, white rice, potato. I kept eggs in, so I eat eggs in the morning or sometimes GF Chex cereal with unsweetened almond milk. As we feel better, then we test foods one at a time back in. And although after 2 1/2 years of being gluten dairy, and soy free, i have been able to add many things back into my diet. There is light at the end of the tunnel.

It sounds like she needs to try Entocort instead.

Leah