Hi! I am Susan from Chattanooga, TN, and I am NEW HERE!

[Leah]

Jane, have you tried adding some fiber back in to your diet? Salad? beans? fruit? A little may help with the C.

Leah

[jgivens]

Yes, salad and fruit. I am very gassy so I think beans might ruin me, but this is just odd the way I have continued to be constipated like this.

[tex]

my gastroenterologist was horrified. He doesn't like any of his patients to go over 10 days because "bismuth is so close to arsenic on the periodic table." He worries about toxicity.

I wonder if your GI doc might need new glasses. Bismuth is not even close to arsenic on the periodic table. The atomic number (the number of protons) of arsenic is 33, and the atomic number of bismuth is 83. What's close about that? They're not even adjacent to one another in the table. Arsenic is classified as a "metalloid", while bismuth is classified in "other metals".

Tex

[jgivens]

Should I be surprised? I did not even think to question it--didn't go looking at the periodic tables. Interesting. I wonder where he placed in chemistry? Obviously not high.

[Susan P]

Hi,

Thanks to everyone who has given me good, sound advice. I have read every one of your comment's, and my head is spinning since I am so new to this.

I cried last night, and my sweet husband went to the store and bought me some gluten-free bread and some GF pretzels. The bread is kind of gross, so I've been eating pretzels all day...nothing else.

I wish I could afford the stool test, but here is what else is going on in my life. I'm not looking for pity AT ALL, but I'm wondering if stress is also playing a part in my MC.

My mom just passed away. I have MOUNDS of paperwork to do to settle her estate. I have a disabled sister who cannot walk, and I just realized lately that she couldn't see. So, through ALL of my problems, I have taken her to the eye doctor (not good news), and then I took her to a retina specialist (many, many times). Both of her retinas were detached, and her right eye is pretty much gone for good. I sat through a long eye surgery with her, and she is beginning to see a little bit now through her good eye. She has SO many health issues, and I have to take her to the doctor several times a week. Most of her problems are caused by her being a non-compliant diabetic. I don't know whether to hug her or slap her, but I am ALL she has since Mom died. She is living ALONE in Mom's house, which I do need to sell. There is 55-years worth of things in her home, and I'm just not up to tackling that project right now...alone.

My son is a high school SENIOR, and the paperwork and applications, and all that goes with college searching is very intensive work. It's so much work, but he's a straight A student, and I want to help him meet his deadlines, etc. Also, we have to figure out how to pay for his college...although I believe he will receive a LOT of merit money (I pray).

PLUS, my daughter is getting married in November. She graduated from Emory University in Atlanta in 2008 and she works for the Centers for Disease Control and Prevention (the CDC) in Atlanta. She's a brain, and an epidemiologist. A couple of months ago, I went to Atlanta for two weekends in a row to help her find a wedding dress. I was having SEVERE problems then, and I wish I could have that time back to spend with her since I felt like I was a drag.

I feel like a terrible mom, wife, and sister right now. Maybe I'm feeling sorry for myself, but now I feel like my whole life has changed. Forgive me for whining. So, needless to say, money is allocated for college and wedding right now.

Does anyone else feel like their energy is zapped?

I'll be okay. I'm strong. Just worried.

Thanks for letting me vent,
Susan

[jgivens]

Susan,
If you have read Tex's book, you know that stress is a major factor in this disease. There are days when I've been so tired, I didn't think that I could put one foot in front of the other. It gets better, but you have to figure out how to delegate some things. Is you sister considered a senior yet? If so, my suggestion is that you call your local Area Agency on Aging and let them help you find help for her.

Can you ask your daughter if she would help her brother with college applications and keep track from afar of them? If not her, how about the high school counselor. I know that in my area, they can be helpful if they want to be in keeping kids on track with paperwork for college, especially if they know there are extenuating circumstances. These are extenuating circumstances if I ever heard them.

There are many hospice organizations around that offer free grief support groups. If the grief from your mother's passing, is getting to you, avail yourself of one of the support groups.

You cannot do it all. Your last statement about "being strong" may be exactly what got you into your present condition. Delegation of duties is key right now. I have a wonderful quote on my refrigerator. It says:"You are not Atlas carrying the world on your shoulder. It is good to remember that the planet is carrying you."--Vandana Shiva

When i am tempted to save the world, I look at that quote and remember that I am being carried by the planet.

[maestraz]

Hi Susan,
Does stress aggravate MC? Resounding yes! I definitely react more when stressed, and if you read Tex's book, he has plenty to say about the impact of stress.

You really have a lot on your plate right now. I hope you can find a way to reserve time for yourself: I like walking, yoga, knitting, as "Zen" sorts of activities that help me relax. I'm sure others will chime in with stress-reducing suggestions.

RE: lack of energy, when I was at my sickest, I felt like I had flu or mono. I could barely get off the couch, and it took me a long time to regain some stamina.

I hear you on the GF bread. I think they're all yicky, and eat them only a few times a week. Udi's is good, and I also like Schar. Rudi's would be my third choice. You really have to toast GF bread to make it palatable.

You will be so glad you found this site. The people here have helped me a lot in my recovery and ability to cope with MC. I can't tell you how many answers I've found, suggestions that have turned out to work, etc. Plus, these folks really are kindred spirits--they've all walked the walk, and know exactly how you're feeling.

I notice that Entocort/budesonide doesn't seem to have been mentioned yet in this thread. This is a steroid that doesn't have the whole-body effects of prednisone, and many, including me, have had good results with it. But the dietary modifications are key. I got used to gluten-free with minimal problem. Dairy, not so bad; almond milk is really good, (and there are even almond milk yogurts and ice cream). Earth Balance is a very acceptable butter substitute. But giving up cheese was really hard, and IMO, there are no acceptable pseudo-cheeses out there.

Hang in there! It sounds like your husband is ready to get on board with helping you feel better, and that's a big plus.

[Susan P]

Jane,

Thank you so much for your kind, reassuring words. I am carrying a lot of stress, and I am trying to delegate some of my duties, but then I feel guilty.

I forgot to mention that I also the head of my son's baseball team, and I have an entire program book of ads to design, which will take weeks. I also design and manage their website. My friends on the team have forced me to give up some of my tasks, which really helps.

I just joined this forum a couple of days ago, so I know things will get better. I really loved your quote on your refrigerator.

I'm so tired, and I've been sleeping a LOT, which isn't like me. I'm usually always on the go.

I am going to become educated and take charge of my own disease. I just need a day or two to get used to the idea that I don't really know what to do just yet.

Again, thanks for listening...I'll get there.

Susan

[Susan P]

Hi,

How can I post my profile picture?

Susan

[Martha]

Dear Susan,

Wow, you need a lot of . I'm so sorry for the loss of your mom, and also for the added burden of caring for your sister. Your surely do have a lot on your plate.

Controlling MC does take a lot of patience and persistence, but it is possible.

Gluten-free bread: Suze is right; you need to toast it. I like Udi's and Rudi's. Schar tastes really good, but it contains soy, so it might be just as well to stay away from that until you determine if you are intolerant to soy. I have found that eating soy makes me very tired and sleepy, and several others on the forum have mentioned that as well.

Love,
Martha

[tex]

Hi Susan,

I'm sorry about the loss of your mom, and all the other extra burdens that you're carrying these days. The added stress definitely adds to the inflammation that causes the disease.

I can't add much to the great support that you have already received, except to reinforce the observation that this disease is often associated with extreme fatigue. It can take almost all the energy that the body can muster, just to try to heal the damage done to the intestines and other organs by the chronic inflammation associated with the disease. And until we remove all of the problem foods from our diet, we continue to generate new inflammation. And if that isn't bad enough, to add insult to injury, the malabsorption problems connected with the disease rob us of much of the energy that we should be getting from our food — instead, much of it ends up in the toilet.

There is a place in your profile where you can upload an avatar image. The system can be picky about accepting image files that don't meet the specs, though, so if you would rather not waste any time fiddling with it, just attach an image file to an email to me (you can do that by clicking on the email button at the bottom of this post), and I will be happy to convert it into an avatar and upload it for you.

Tex (site administrator)

[KD]

Susan,
I have had MC for 4 years now and I am not one of the lucky ones. Have tried soooooo many dietary changes but have never had more than a week or two of normal stools at a time. I am gluten, dairy, yeast, soy free. Recently had some homeopathic allergy tests and am now coffee, corn, egg, chocolate, tomato, lettuce spinach......and a whole bunch more FREE. I hope you have better luck. I have also failed meds Asacol, endocort, bile acid binders and Pepto. Don't want to discourage you just want you to understand this disease has a mind of its own and each of us react differently. I have been able to manage with 3-4 bouts of d a day but have times when it gets worse like lately. The worst is having to get up at night!! I would love to be able to sleep through the night without a trip or 2 to the bathroom!!!!!

I was most interested in your frequent UTIs. I am an RN and recently became certified as a Holistic Integrative Health Nurse. I run my husbands Chiropractic office and give lots of diet and supplement advice. I learned about a wonderful supplement called D-Mannose to keep people from UTIs. It works by coating the bladder walls and making them slippery so the bacteria cannot stick. I am amazed at the results we have seen and you may consider getting some to keep on hand as soon as you have symptoms. Most people are able to avoid antibiotics. Some of my patients who have chronic UTIs take it every day for prevention. One of my patients has to self cath 4 times daily and since she has been on D-Mannose she has not Han any UTIs for about 5 years.

Good luck to you with the MC I also found EnteroLab and Dr. Fine's website helpful finerhealth.com.

[Leah]

Nice picture Susan :)
So sorry to hear that you have so much on your plate. Reading your posts made my head spin. No wonder you are having such a hard time dealing with it all!

Since you seem to be very, very busy, you might want to try the Pepto bisol treatment since it is over the counter. Some on this forum have had great success with it. They start with 8 chewables a day. Then they wean down the dose as the D eases up. I used the prescription Entocort. I was lucky because it worked right away. Once the D was under control, I started having energy again. Just know that the drugs help you live your life WHILE YOU MAKE THE DIETARY CHANGES... otherwise, you are likely to relapse once you are off the drug. I think three months is all you get with the Pepto.

I agree with everyone about the bread. It must be toasted to be edible. For my first six months, I didn't eat any GF "products" at all. They usually have way too many ingredients in them to know what might be aggravating your symptoms. If I were you, I would just keep my diet very simple. Meats, eggs, rice, cooked veggies.....Hopefully things will settle down soon.

Take Care
Leah

[Susan P]

Hi,

I guess I am still in somewhat of a denial, and I may be grasping at straws, but what is the difference of someone who just develops MC from an auto-immune disease and someone who KNOWS their MC has been caused from antibiotics?

When I was hospitalized in September with colitis, the GI dude KNEW it was from an antibiotic. I asked him if this would cause any problems and his answer was NO.

I went four months, but was on THREE more antibiotics for my UTI infections, and I just finished my last antibiotic in January of this year when all of the diarrhea began...again. It lasted 5 weeks before I went to the doctor. Since then, and with my GI visit and a colonoscopy, I have never had normal bowel movements again (gosh, it's hard to type these words to strangers).

BUT, some days I have no diarrhea, and it definitely has lessened to once or twice a day.

My neighbor is a nurse, who used to work doing colonoscopies, and she SWEARS that they would have tested the MC for food allergies during the colonoscopy.

Darn...what to believe. I have been gluten-free for two whole days (big deal, right), and my diarrhea was worse today than a week ago, even though it was only two bouts.

So, I guess if you get stabbed with a knife by someone else, or if you accidentally fall on that knife yourself, that the result is the same...no matter how it came to be? (Wow, that was a creepy analogy). LOL.

Anyway...in denial here. I just want to talk to my doctor and tell her what I've learned. SUPPOSEDLY, she is one of the best GI's in the country, and has been named just that. She has traveled to meetings where she trains other GI's on the disease.

Venting again...I hope you understand.

Susan

[tex]

what is the difference of someone who just develops MC from an auto-immune disease and someone who KNOWS their MC has been caused from antibiotics?

You can't develop MC from an autoimmune disease, but you can develop it from the same health environment that can trigger other autoimmune diseases. IOW, all autoimmune diseases may have a common genesis (if my theory is correct). Our genetics determine which one or which ones we will develop, if certain environmental conditions develop.

I asked him if this would cause any problems and his answer was NO.

That GI dude clearly does not know what he's talking about, because antibiotics are a major cause of MC.

and she SWEARS that they would have tested the MC for food allergies during the colonoscopy.

Yes, it's possible to test for IgA antibodies to certain proteins by means of biopsy samples from the colon, but outside of research environments, that is apparently rarely done. I've never heard of it being done before in general GI practice. Most doctors rely on blood tests or skin tests for detecting food sensitivities, and those tests can provide valid results for classic food allergies (which can result in anaphylactic shock). But those tests are totally worthless for trying to determine digestive system food sensitivities.

Here's the low-down on drug-induced MC. Many drugs can cause MC, and for some patients (who discover the problem soon enough and discontinue the drug relatively quickly), discontinuing the drug (and avoiding it forever in the future), can bring lasting remission. In those cases, remission will typically occur within a few days after use of the drug is discontinued. If the reaction is allowed to continue long enough, though, food sensitivities will usually develop, and withdrawing from the drug will not bring remission (IOW the food sensitivities will be permanent, once the genes are triggered). For some unlucky patients, this can happen rather quickly. We even have one or two members who have drug-induced MC and who were able to reach remission with only temporary diet changes, but as the years passed, (and they continued to eat whatever they wanted), food sensitivities became a major problem.

Antibiotics are not like other drugs, in that they are only used on a relatively short-term basis in most cases. And as long as the regimen is short-term, they usually don't cause the development of MC (though they can certainly trigger a relapse). It's repeated or long-term use of antibiotics that are more likely to trigger MC. In general, if diarrhea persists for more than a few days following the discontinuation of an antibiotic, you can be sure that the genes have been triggered, and the reaction will be chronic, unless the diet is changed.

We totally understand — virtually everyone goes through the same stages of grief, following a diagnosis of MC. It's a huge pill to swallow.

Tex