PLEASE Help Get Me Re-Started

[TREESE]

Thank you, Tex! You have shed light on the Doctor matter and about the Fed Ex/Entero Labs matter both!

A bit of Good News: This is now the 3rd day in a row I haven't had a BM! No diarrhea and no BM at all!! Hoping when I do, that it will be formed....fingers crossed!!

Gratefully,
TREESE :)

[tex]

Three days without a BM sounds like constipation. It's usually time to step down the budesonide dose when the first signs of constipation appear, for most MC patients, anyway. IOW, if you're still taking the Lialda, continue taking it, and reduce the budesonide to 6 mg per day. If there's no BM tomorrow, you may need to reduce the Lialda dose, also.

Tex

[brandy]

Treese, do exactly what Tex said.

If no bm drop down to 6 mg on the budesonide otherwise you will have severe constipation.

[brandy]

He recently (maybe 2 months ago) upped me to 4 Lialda tabs from my ordinary 2. Then when that didn't work, he added the Budesonide and said that when it came time to wean me off the Budesonide, the Lialda would make that process easier.

Treese, read what you posted above. You were on 2 Lialda and that did not work. Then you were on 4 Lialda and that did not work. So Doc added budesonide.

It sounds like you are now getting constipated which means the diet and budesonide is most likely doing the work.

I thought I'd throw the whole Lialda thing out there for you to think about.

[TREESE]

To thank ALL of you who replied to my 4 days without a BM Post! I can't always get in touch with my GI and you folks make ALL the difference in the World to me!

I had 1 hard boiled egg this morning with my chicken and rice for breakfast and had a BM shortly after. None since. I say none since because usually 1 leads to a follow up 2 and 3. But not today. Maybe the Meds are actually working finally!

I will observe now and if I have another period without any BMs, I will definitely get a hold of my Doctor.

Actually, This Monday, I have a Colonoscopy. So I will be doing the emptying out Prep on Sunday. Gatorade and Miralax. Will keep you updated. Thank You!

Gratefully,
TREESE

[TREESE]

Good Morning, Friends on the Forum - Last Post, I was preparing for a Colonoscopy because of a CC Flare-up after 5 years.
Still on Budesonide and 4 Lialda. The Colonoscopy biopsies again showed CC.

For 11 days post Colonoscopy, I was eating fairly normally again without any diarrhea and was so elated! But not having moved my bowels in 11 days, I called my GI and he said I could try a few prunes and to just keep eating normally. I tried broccoli. Had 1 normal BM but then the soft, stringy light brown BMs returned 2 and 3 times a day. And one by one, I have had to stop all normal food again. Back to Rice.....

Now what????? Keep taking Lialda? Keep taking Budesonide? Eat Rice for a month? How long does one eat rice for?
I am down to 91lbs from 103lbs. 5'5" tall.

PLEASE ADVISE! Thank You!

Bless you ALL,
TREESE

[tex]

What do you call "normal food"? Do you know for a fact (such as EnteroLab results) that rice is a safe food for you?

Tex

[carolm]

Hi Treese,
I’m sorry to hear you are in such a big flare that you’ve had to take Lialda and Budesonide both. I agree with Tex and Brandy that you need to go with the foods that people react the least to- turkey, lamb, very soft cooked vegetables (like carrots, squashes, green beans) and sweet potatoes. I could also tolerate red potatoes, so that was one of my staples. If you haven’t had the Enterolab tests then you really need to avoid the big 4 allergens- gluten, soy, dairy and eggs. Avoid gluten free breads as they have a lot of additives and it’s too early to know you react to gums or other additives.

Eat simply- turkey soup with carrots or lamb chops with green beans and a baked sweet potato. Get calories where you can- like using olive oil for pan frying or roasting vegetables. I was able to tolerate Earth Balance soy-free spread which has a great buttery taste. Eat several small meals a day. My slow cooker was my best friend when I was recovering and on a restricted diet. I made many soups and stews.

Once you know for sure what your safe foods are and your digestion becomes more stable then you can try adding a new food by trying one serving for two or three consecutive days. If you don’t have a negative reaction then it’s probably okay. But only change one thing at a time. If you add too many things at once you won’t know what worked or what caused problems, and you’ll just be confused.

Remember, you are healing and developing a lifestyle that will reduce inflammation and help you get your health back for the long run. I’ve been gluten free, soy free and dairy free for 9 years now and I’ve been in remission for 7 years. I will never eat gluten, soy or dairy again if I want to stay in remission. The sacrifices are well worth the effort.

Best wishes,
Carol

[TREESE]

Hello, Tex

I had the Entero Labs done 5 years ago and it only showed a mild reaction in 3 areas; walnuts, cashews and oats.

So, after the Colonoscopy I began eating GF Bread, GF Rice Chex with Rice Milk, Flounder, Over-cooked carrots, white potato, baked potato and sweet potato. Even a ground turkey burger in the toaster oven, not fried. A little Smart Balance Margarine on it and salt. And I kept eating the plain white rice and chicken, too.

I thought it was all good because I wasn't having any BM at all after the Colonoscopy. But after 11 days, bam!

What do I do now???

Most Sincerely,
TREESE

[TREESE]

Hello, Carol - Please see next Post. Sorry for the mistake......

[TREESE]

Hello, Carol - And Thank You for offering your thoughts and experience!

So you are suggesting I eat turkey (or lamb) and over cooked carrots and maybe a sweet potato even now? At this Stage? Did you have to be in remission first to be able to eat all that variety?

Do you cook your lamb or turkey using any other fats like maybe coconut oil? Presently, I am boiling my chicken. Was hoping I could just put it in the oven somehow.

PS I love a Cup of Coffee! And peanut butter is always such a big help with gaining weight for me. But haven't had either now, of course. Are any of those things in your diet, now that you are in remission? And what about bread? Do you eat any Bread? I really do use a lot of it when in remission.

How grateful I am for your assistance, thank you!

TREESE

[carolm]

Hi Treese,
Yes, I think you can eat those foods even now, assuming you don’t react to them. When in a huge flare I avoided gluten, soy and dairy, then when I stopped taking Budesonide I found that I was also reacting to eggs. I found 5-6 safe foods and that’s all I ate for 6 months, then added one food at a time as I described above. I also was sugar free, low fiber and caffeine free for much longer. I ordered a low-acid, decaf coffee online and that helped me reintroduce coffee.
I was able to pan fry foods in olive oil or coconut oil, early on. Not deep fry but enough so food didn’t stick. I made my own turkey sausage ( it’s very easy). Rice is not an issue for me so I did eat rice, and eventually rice pasta.

In remission I’ve been able to eat eggs again and pork, even though my first Enterolab tests showed some minor reactivity. (My 2nd Enterolab tests showed no issues with pork). I rarely ate any kind of bread. I am just now (after 7 years of remission) starting to experiment with baking gluten free breads. I don’t react to almonds so I have made muffins using almond flour, but not until my gut settled down after several months. I eat almond butter, but have avoided peanuts because peanuts are a legume like soy.

Tex provided this link in one of his posts. Did you have time to check it out? It’s about the basic eating plan for when you are in a flare. https://www.perskyfarms.com/phpBB2/view ... hp?t=22328

It will feel like two steps forward and one back. It could take several months to heal and get into remission. If your gut isn’t settling down start looking for hidden sources of dairy and soy in any processed or precooked food, and in any vitamins or supplements.

Kind regards- Carol

[TREESE]

Hello again, Carol, Tex and Friends on the Forum -

Thank you so much again for your Reply in particular to this present situation, Carol! You are really zero-ing in for me! Yes, I did read the Link that Tex kindly sent me, but one of the things that confuses me still is being on Budesonide and being in Stage One of eating. Yours and those of Tex's replies and others have been very helpful and if I may ask just a few more things, please, I think I would be so much more clear on what I'm doing.

Carol, You touched on this a bit in your last post. It's Regarding Budesonide;

Do I stay on it until the diarreah stops for like a week or must I keep taking it while I am doing the Stage One Eating experiments?
Example: I am eating rice and chicken without "D" for 4 days now and I see my GI Doctor This Thursday (Today is Tuesday). Do I stay on IT until I can safely add a vegetable or a potato or do I do that experimentation part without being on the Budesonide any longer?

Secondly, someone please explain to me what an over-cooked vegetable actually means. I like carrots. I buy frozen. So, instead of following the cooking direction time, do I double it? Must it be like mush like mashed potato mushed? Same thing for string beans. How do I know what over-cooked consistency is?

Lastly, for 3 years I was eating cheese and yogurt and whole grain bread and peanut butter before this flare up. Why didn't my body react to them to warn me that I was not tolerating them well? Are they always just to be avoided regardless whether or not my body warns me about them? I was in remission 2 years before I added them back in. Do I take the Entero Labs again? I took them in 2015 and they hardly showed any reactivity to anything. No reactivity to Soy either.

Carol, I know I am asking a lot of you, but if you would, please in your patience, Reply!

And I also ask Whomever might have knowledge of these things to also Reply if they would!

Most Grateful,
TREESE

[carolm]

Hi again,
I’ll start with the easy question- well cooked or overcooked just means soft so that it’s easier to digest. Raw vegetables can be irritating to an already inflamed gut, as can too much fiber. Your gut needs as few irritants as possible.

As far as Enterolab tests- something has you in a flare that is so significant that you are on 2 prescription meds, seeing a GI specialist and not seeing much improvement. If I were in your shoes I’d want to know exactly what I am reacting to. While the vast majority of people on this forum reached remission through diet changes alone, and many did it without Enterolab, for me my Enterolab results were like the fast track to getting my diet in order with confidence. I recently re-did mine because I felt I was possibly getting gluten from somewhere. Sure enough my gluten numbers were up. But I had absolutely no reactivity now to corn, almonds, rice, walnuts, pork, chicken, beef, cashews or eggs (so I looked for the source of gluten and didn’t waste my time and energy eliminating anything else). Tuna was the only other food I reacted to and it was minor. Our results can change over time. Tex originally did not react to soy but on his follow-up testing soy showed up as an issue. I think you are the only one who can decide if you think the Enterolab tests will give you valuable information you need to go forward.

Re: Budesonide - how long to take Budesonide really depends on how your body responds. I took 9 mgs per day for probably 3 months, then started having constipation and cramping. I dropped down to 6 mg and stayed there for 3-4 weeks until C and cramping showed up, then I went to 3mg daily until I felt I could titrate down; so then I took 3mg every other day for a week, then 3mg every 3rd day for a couple of weeks and then stopped. 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. Hope this helps.

As far as why your body didn’t tell you- who knows? Our bodies try to combat the irritants until it simply can’t any more. Example: Two years ago I thought I could eat cheese again and was elated! Starting eating cheese 4-5 times a week. Life was good. Then in week 6 of my cheese eating euphoria I got hit with a truly awful flare of constipation, crazy amounts of mucus, cramping, nausea and fatigue. My body didn’t tell me in week 3, 4 or 5 that this was a bad path, but it hit its limit and I really paid for that. It took me about a month to recover from my cheese-filled delusion and I had to drop back to my basic soft, bland diet as part of that recovery.

By now you are probably sorry you asked. ???? This might be too much information, but it is the path I took. This is a challenging disease and while the broader guidelines are helpful to all of us, the fine tuning is individual. I hope I covered all of your questions and hopefully others will chime in too.

Best wishes,
Carol

[tex]

That response is so complete that I can't think of anything useful to add. Carol is quite correct when she suggests that the basic diet changes work for most people, but difficult cases usually require individual diet fine-tuning.

Tex