Since taking all tomato,onion,peppers and sugar out of Rick's diet, along with all gluten,dairy,soy,eggs and yeast. He has now gotten even worse. Is this a normal healing crisis for MC patients? Or is this some new issue popping up? Thanks you all........I sooooo love having the beloved support around here.
Hi Carrie,
So sorry to hear that he is feeling worse
What does the doctor think of all this? I am sure you stated earlier,but is there a reason he can't take Prednisone? I know its an evil drug, but it is a stronger drug than the Entocort and maybe a quick hit of it may help get him into a remission?
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
I had wanted to stay clear of the evil side effects of Pred, and the entocort had a much safer safety margin. But I'm getting ready to arm myself with research to email the doc about putting him on Pred.
Can anyone tell me their dosage for Pred.? And has anyone taken Pred. with entocort? Rick has been on the entocort for about 5 weeks now, so I'm not sure on introducing Pred yet....I'm reading Bob's post about the 60mg for 2 days,then 50mg for 2 days step down, then onto entocort, that seems to be the normal dosage, just wanted to verify it...
Well, that's certainly a bummer. No, normally a recovery from an MC reaction doesn't involve a "Herxheimer" type effect, (where the patient feels worse before he feels better).
Are you sure he isn't dehydrated, or short of any of the esential electrolytes. It is very easy to become dehydrated, and it's very easy to become short of potassium, for example. I had that happen to me several times, early on. Is he getting enough salt, (sodium)?
I've got to get back to work in a few minutes, and I'm not exactly sure what his diet consists of right now, but, for example, it's possible to get what's called rabbit fever, if the diet is almost 100% lean meat. One can survive on a diet of meat alone, but it has to be fatty meat. If he's eating at least a minimal amount of carbs, then this probably isn't a consideration. If he has ketosis, that's a very suspicious sign, though.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
He doesn't seem to have any hydration problems,I had wondered about an electrolye replacement, but they seem to be loaded with scary things, and our diet is still varied as far as he does fresh fruit ( bananas, blueberries, strawberries) with a gluten free hot rice cereal in the AM. No lunch, then dinner is chicken with skin, pork or beef with some fat and sweet potato or maybe green beans. Since it has just been 2 weeks since we got the enterolab results and took dairy,egg,yeast out of the mix, and just a couple of days without any potato,peppers or tomatos and corn, just not sure what to do........today was so bad that he didn't eat anything for breakfast, just trying to make it to work....major bummer.
I am so sorry you and Rick are going through this. I have basically the same problem. I have been GF, SF, and DF since July. (Supposedly according to Enterolab I can eat eggs and yeast, I guess I should feel fortunate that I haven't had to give those up yet). I have been fructose free since June. I have added corn free recently. I have taken Prednisone starting at 40mg for 5 weeks, it didn't help but a little. He added Imuran then the doctor tapered me off the Pred and added Entocort, and now I am on Imuran 100mg and 9mg Entocort and 2 Lomotil. I still have urgency and D. I used to take 8 Lomotil a day and have D. So it has helped reduce the Lomotil from 8 to 2. (I should be thankful for that) In other words all those steroids and immunosuppressants don't work very well for me. They usually help most people with MC. I pray you all find something that works. I see my doctor again tomorrow. I don't mean to sound like nothing is going to work for Rick just because it hasn't for me. I just want you to know that there is someone out there experiencing a similar situation. It is not just you!!! You are so sweet to do this diet with your husband. My husband is very supportive but hasn't changed his diet.
Pat
P.S. Is Rick taking any Immodium or Lomotil? It helps slow things down.
Incidentally, my brain was apparently not completely in gear when I wrote that last response. The condition that I was referring to that can occur with an all lean meat diet is not called "rabbit fever", (that's tuleremia), it's known as "rabbit starvation", and it can cause life-threatening diarrhea. It got it's name from the fact that a diet of only rabbit meat will quickly cause it, since rabbit meat is short on several vital amino acids that we cannot synthesize for ourselves. D can happen in as few as three or four days, with a diet that is too low in fat. It dawned on me that I had mistakenly called it rabbit fever, after I got back to work. Looking at Rick's current diet, (that you listed), I feel sure that rabbit starvation can be ruled out as a possible cause of his continuing symptoms.
I agree, this is very frustrating, and unexpected. Is it possible that he might have picked up a virus from one of his students? (After five weeks on Entocort, his immune system is probably quite suppressed).
Thanks for your input, I appreciate everything I have gleaned from you all here. It gives me hope that someday we will figure out what works and get Rick into remission. The reason I went on the diet to was that I didn't want anything in the house that might cross contaminate what Rick comes into contact with. This man is my reason for living, we have been together since we were 18, and anything I can do to make his life better is just no big deal in the grand scheme of life.
Rick has taken lomotil and immodium for years, before we started to figure out the diet problems, he used to take 8 immodium a day, just to be able to make it to work. The lomotil never seemed to work as well, not sure why. I did just email out doc to try and get her to okay a script for pred. to see if that might help. If she doesn't, then I will try for one of the other drug options, and we will just keep pluggin along trying to figure this out. Thanks again for the input, you guys are the only thing keeping me going on the right track in dealing with all of this.....
That's okay Sweetheart, I knew what you meant. Growing up hunting swamp rabbits in Miami as a kid, I knew all to well about rabbit fever. And I had read about rabbit starvation, and also feel like that is not our problem. I'll check into the homemade hydration, at this point, we are doing shotgun medicine, try everything and hope something helps...
Rick has not felt bad at all, other than stomach issues, which aside froma short relief when we first started taking things out of his diet, it is sliding right back to where it was. But I guess it is always possible that he picked up something from one of his students. Being trapped in a small studio with so many people each day, maybe I just need to soak him in Clorox before he leaves for work. Seriously, he has tried to be very good about germs and uses my favorite hand sanitizer each time after he comes into contact with someone....
I went to the doc last Tuesday, for an annual fasting blood test, to get a CBC, (to make sure my thyroid hormone supplements are still working reasonably well), and for the next couple of days I had D, and felt a little "off" - not really sick, just not quite right, and I'm not taking an immune system suppressant.
There's a fly in the ointment in that "homemade" electrolyte drink - it contains sugar. Virtually all of them do. It's not safe to use this formulation without the sugar, though, because of the presence of baking soda in the mix. Any electrolyte that contains baking soda has to very carefully "balanced", and the baking soda has to be totally dissolved, or serious damage to the stomach and intestines, (especially the colon), can occur.
In looking around, here is a "home mix" that does not contain table sugar, but it does contain corn sugar and fructose:
1 quart boiled water
3 Tbsp. orange juice
1 tsp. salt
2 Tbsp. corn syrup
Here's another that contains corn syrup:
1/4 tsp salt substitute
1/4 tsp salt
1/2 tsp baking soda
3 tablespoons + 1 teaspoon Karo Syrup
2 quarts clean water
(may add Kool Aid or Splenda to taste)
Personally, I believe that anything with HFCS is not a particularly good choice for use in an electrolyte drink, because unlike glucose, fructose is almost entirely metabolized in the liver, and when fructose reaches the liver, the liver pretty much stops everything else to metabolize the fructose.
The bottom line is, there are no easy solutions for those of use with multiple food intolerances.
Hugs,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'll try mixing up one of those and pouring some down Rick. ( okay, not literally, but it sounds funnier that way ) I just talked with him ( he is still working in the studio tonight ) and he said that he is still feeling okay, just the same old issues, so must not be a bug, I hope.
I think your very right about the no easy solutions, seems like everytime I turn around, there is another hurdle. ( finding out that brown rice that is enriched can contain gluten just blew me away ) I have decided that the local grocery store is like a mine field. Just trying to make it through without getting nailed by the evil food products...( there has got to be a video game idea in that )
Hi Carrie,
I've been on Entocort for almost 9 months (6 mg. right now) and I've only had one cold this winter. My cold was much less severe than my husband's. I think he might have had the flu that's going around with the lingering bad cough. I have been worried that with my suppressed immune system, I'd be more susceptible, but I've made it through the winter without any other illnesses.
I also work in a school, so I'm around sick students a lot, too. I have to touch the computer keyboards that they're using and I sometimes cringe when I see Kleenex by them. I can wash my hands frequently because I'm no longer tethered to a classroom.
Yes, grocery stores are land mines. I'm impressed that you've eliminated so many different foods already. It doesn't sound like the Entocort is doing the job for your husband. It was making a difference for me after about 4 weeks. I agree that you need to talk to the doctor. Good luck!
You never know what you can do until you have to do it.
I have been reading your post about your experience with entocort with much interest, since Rick seems to have similar intolerances also. Hopefully both of you will be in remission land very soon.
Hi Carrie,
I am currently in the tapering stage of Prednisone. My doctor started me on a regimen of 30mg for 2 weeks. I felt better within 2 days of starting the pred and have felt good since. Last week he tapered me to 20mg and still so far so good. I am waiting to hear back from him on what the next step is but i think he said if i was good for a week on the 20mg he was going to add a maintenance drug to the protocol (most likely Asacol, but i am going to ask about Pentasa) and try the two for a week. If that works well then he would do another prednisone taper.
Luckily i have had no side effects from the prednisone. My cheeks got a little fuller but i had lost so much weight they had gotten withdrawn so i am ok with that. I have only gained 1 lb so far but my mental and phsyical well being has improved dramatically.
I really hope they can find something for him soon. I know how horrible it is to feel so sick for so long
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Glad your feeling better and doing okay on the tapering dose of Pred.
We are still waiting for the Dr. to call back with a verdict of rather she will put Rick on pred. Hopefully we will hear something tomorrow. The drama of " As the Stomach Turns" continues....
I do feel encouraged about finding things that he can eat, I made it to Wild Oats Friday and found egg replacer, sweet potato chips and breakfast bars and some cookies that were all safe and tasty. At least he has some more food options now...Win, Win
Seriously, he has tried to be very good about germs and uses my favorite hand sanitizer each time after he comes into contact with someone....
