PLEASE Help Get Me Re-Started

[TREESE]

Hello, Carol and Tex - Carol, Your post was EXACTLY what I needed and no, it was not in any way "too much information" as you feared.

You thoroughly cleared up my understanding of Budesonide and Diet which was of great concern to me.

And also about mushy vegies.

And thanks for sharing your thoughts on the possible need for Second Entero Labs Testing. I know they are moving right now, but I will strongly consider getting re-tested again to see what happened over the course of the 3 years when I was eating Everything I thought was healthy without any consideration for gluten or dairy, etc.

I actually was following a professional Dietician's advice in doing so. She was trying to help me gain weight. It did add weight, but at what cost. She said all her Colitis patients were able to eat those things and even her Cancer patients could eat eggs. Just a low fiber diet, she said, was all that was necessary for Colitis patients. So I followed her advice and added so many foods back that I was not eating when I was on my GF Diet. It felt great....until it didn't. UGH!

Thank You, Carol! How deeply grateful I am that you took the time to be as detailed as you were about
the Budesonide process and diet.

And Thank You, Tex, for supporting all that Carol said to me! This Forum is a true saver of lives; physically, emotionally and mentally!

I'm sure I will write again, but I understand that the forum will be closed for a short period. Good Luck with the Upgrade, Tex!

Blessings,
TREESE

[TREESE]

Hello, Carol, Tex and Forum Friends - As you know, I am on Budesonide and I hadn't moved my bowels in 4 days.

So, I introduced a new food, overcooked carrots, last night hoping that would help, and they gave me relief from that constipation this morning. It was a fairly normal looking BM. But I was unsure if carrots were too much for me since they did make me go. So I instead introduced a small red potato this afternoon. This evening I had a gassy and not so good BM. Soft, but still formed and small. Was it the carrots or the potato???

Here is where I now need help...
To introduce a new food, the boiled carrots for example, if I suspect they might cause soft stools because they relieved my constipation, do I stop them and try a different new food like the red potato on that same day? Or wait 3 days more before I try the red potato and just go back to chicken and rice again until then?

I'm afraid because I am still losing weight on only chicken and rice. Down to 88lbs now. Please HELP!

CAROL - TEX - Friends, please help

Gratefully,
TREESE

[carolm]

Hi Treese- I’m glad you felt this was helpful. A dietician will probably not view microscopic colitis as an autoimmune disease and will not approach it from a standpoint of reducing the immune system response that caused our gut inflammation. And that makes all the difference in my opinion.

Best wishes,
Carol

[tex]

Hi Treese,

Carol is quite correct, of course. Dietitians who understand how to properly specify safe diets for MC patients do not exist (at least not in this country).

When we have an unwanted side effect from a prescription medication, what do doctors do? They prescribe another medication to deal with the side effect. That's an incorrect and convoluted response, in my opinion. The correct response would be to replace the first medication with one that doesn't cause the side effect.

You seem to be making the same mistake. You're attempting to correct a side effect of budesonide, by adding a food to your diet. The correct response would be to lower the budesonide dose. The proper way to taper a budesonide treatment is to lower the dose at the first signs of constipation.

You're trying to introduce new foods too soon. Your gut needs to heal a while before trying to introduce new foods If you want more calories in your diet, eat larger helpings of foods that you know are safe, rather than playing Russian Roulette by adding new foods to your diet during recovery. At least that's my opinion. Others may have a different opinion.

Tex

[TREESE]

So, Tex, you and Carol are saying to stay on chicken and rice for now and when I get constipated to tell my Doc so he can lower the Budesonide dose. Makes sense. I was never on this medicine before, so I greatly appreciate your feedback.

He cut me back to 2 Lialda from 4 today, but is adding some anti-spasmatic medicine (DyCyclamine?) to see if that will help. But from what you just said, that doesn't sound like a good step either.

Are you familiar with that one? Please Comment!

He also wants me to get a blood test for Celiac and a 2nd test where you swallow a small camera that sees inside your intestine to better check for Celiac, in case the blood test missed it.

And a 24 hour Urine Test. I'm exhausted!

If you can Reply before the Site goes Offline for the Upgrade, please do!

Thank you so much!
TREESE

[tex]

Hi Treese,

Yes, keep the diet simple and give it time to work.

You can lower your budesonide dose yourself, but if you prefer to ask your doc, ask your doc.

Most people don't have a lot of luck with anti-spasmotics.

If you've followed the GF diet for more than a week or so, a celiac test is going to give a negative result. It's irrelevant anyway. A GF diet is the standard treatment for Celiac disease.

The camera test rarely finds anything, except more money in the gastroenterologists bank account.

Tex

[TREESE]

Hello, Tex - Congrats on the successful upgrade! And hello again to our Forum Friends...

I am Only eating Rice and Chicken because even one change seems to bring the D back. I do need time to heal, as you and Carol have said.

I phoned Dr Fine and ordered my 2nd Entero Labs yesterday. He said the Budesonide won't interfere with the Results.

QUOTING CAROL:

During that time I was creating my gf, sf, df diet and, because I had my diet in order, I didn’t rebound back into a flare once I stopped Budesonide. It was after I had my safe diet established and was off of Budesonide that I started ‘testing’ foods to add them back in. So, you don’t need to be on Budesonide to make diet changes. I made diet changes both on and off Budesonide.

I only have 2 safe foods right now. So, if I get Constipated on only these 2 foods, it may be time to cut back on the Budesonide, if I am understanding Carol and You correctly. Am I understanding you correctly?

Thank You,
TREESE

[tex]

Yes. Most of us find constipation to be a worse symptom than diarrhea, if it becomes chronic.

Tex

[tex]

Treese,

Actually, I haven't upgraded it yet. This version can't be converted (at least not by conventional methods) because it and the version that I will have to upgrade to are mutually incompatible to the respective versions of the php interpreter code that each other runs on. I just managed to get a temporary reprieve by convincing one of the server administrators at the hosting service to roll back the php version of the server to the highest php version that this board will operate on. But the upgraded version is not compatible with that version, so I can't make a conversion using conventional methods. So we're still using the old, unconverted version, until I can figure out a way to convert it.

Tex

[TREESE]

Hello, Tex - I totally misunderstood about the upgrade, sorry. If I had computer knowledge about such things, I would definitely share it with you!

You brought up something about Constipation as being a worse symptom than diarrhea if it becomes chronic. Is Chronic Constipation a part of how CC manifests itself, also? And not just as Diarrhea?

I ask because today, I think I went 10 steps backward in that my GI had told me on Thursday to cut my Lialda back to 2 tablets again (from 4) and to stick with the 3 Budesonide caps because I told him I felt it was too much medication since I was constipated a couple of times. BUT....after 2 days of cutting back, I had WD big time. 1st time in a few months it was that bad. Better off Constipated, no?

Thank You!
TREESE

[tex]

You brought up something about Constipation as being a worse symptom than diarrhea if it becomes chronic. Is Chronic Constipation a part of how CC manifests itself, also? And not just as Diarrhea?

I ask because today, I think I went 10 steps backward in that my GI had told me on Thursday to cut my Lialda back to 2 tablets again (from 4) and to stick with the 3 Budesonide caps because I told him I felt it was too much medication since I was constipated a couple of times. BUT....after 2 days of cutting back, I had WD big time. 1st time in a few months it was that bad. Better off Constipated, no?

A few of us have constipation (no diarrhea), and some of us have alternating constipation and diarrhea. I had alternating C and D.

This is just a guess, but you might be one who gets little or no benefit from budesonide, and you were getting your control from the Lialda. In my opinion, it's counterproductive to be taking two anti-inflammatory medications to treat MC at the same time, because if they work, you don't know which one is working, and if they don't work, you can't tell which one is not working, and if one is keeping the other from working properly, you can't tell which one is keeping the other from working.

For example, you may need a full Lialda dose to maintain control. The budesonide may have just been causing constipation.

Another possibility is that the you have developed a sensitivity to the Lialda. There's published medical research showing that mesalamine (the active ingredient in Lialda) causes diarrhea for some IBD patients who are sensitive to NSAIDS or their derivatives. If someone is taking two medications and one of them begins to cause diarrhea, the other one will not be able to stop the diarrhea. So there's little to be gained by taking two medications at the same time. It just confuses the issue. Your GI doc needs to get his act together and figure out what's causing the problem.

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

Tex

[TREESE]

Hello, Tex - I hear what you are saying about the Lialda and Budesonide taken together.

You mentioned the option of taking just a full Lialda dose. Would that be the 4 Tablets I was taking? Or is a Full Lialda dose higher than that?

Also - The GI said that the Colonoscopy biopsies showed that the CC was nearly gone. He attributed it to the Budesonide. He said at our last visit that he doesn't think the Lialda does anything really. You can see why I get so confused.

Do you now or did you take Lialda yourself? Do many Forum people take Lialda for flare-ups to help the gut to heal? Or to maintain the gut even after remission? Or do you or the others take Budesonide with flare-ups?

Thank you again! Deeply grateful Always for your guidance!
TREESE

[tex]

Hi Treese,

I've never taken any medical treatments for MC. I've only made diet changes. So I have no experience with Lialda. It wasn't even developed until years after I reached remission, so I've never seen a label. But I would presume that a full dose is 4 tablets. For most people, budesonide is much, much, more effective for treating MC than any form of mesalamine. Lialda (or any form of mesalamine) is usually a long, slow treatment.

Your diarrhea may be due to bile acid malabsorption (BAM) or chronic stress. Cholestyramine treats BAM. Relaxation techniques treat stress.

Tex

[carolm]

Hi Treese- Budesonide will help with the immediate symptoms by reducing inflammation in the gut, but the flare will return once you stop Budesonide if you are eating foods you are intolerant to. It is the diet that heals, not the medications.

Tex has conducted surveys with the participants on this board and approx 95% of us were gluten intolerant, followed next by dairy (70%, if I recall correctly), then soy, then eggs. After that, other intolerances are individual (night shades, nuts, corn, meats, etc). This is why the focus on diet is so strong- it will get you to remission. The meds will not.

I did not take any maintenance doses of Budesonide although some people who could not reach remission by diet alone took 3mg every 3-7 days and felt it helped them. Those cases are rare. You might use the search tool above and search for ‘maintenance dose’ and hopefully those discussions will come up.

In an effort to treat motility issues I was having in remission I did try Lialda, 4 tablets a day, and on day 3 I developed the acute intolerance reaction they describe in the medication literature- fever, severe headache, chills, nausea. It took me 12 hours of laying in bed shaking, hurting, and pushing fluids until it resolved. That was my one and only experience with Lialda. Maybe someone who had better experiences will chime in. From my perspective, taking Budesonide for few months will help slow the weightloss and reduce inflammation, and allows time to get the diet in order. Eventually you’ll have to discontinue it but a rebound is preventable if your diet is free if food that make you react. Then you will heal.

Hope this helps-
Carol

[TREESE]

Greetings, TEX - YES, I do believe that chronic stress has a large part to play in this flare-up. And I have begun to address it ever since that first time you mentioned it to me a few emails back. I went so far as to find a Counsellor to speak with through my Health Plan. I take your guidance that seriously!

Believe me, I would never waste your (and the forum's) time if I didn't intend to look into everything you so thoughtfully and generously offer me from your experience! This is serious to all of us here and I treat our correspondence with the utmost respect! Thank You...so very much!

Gratefully,
TREESE