Newbie

[starfire]

WoW Sara, you really have a plateful.

Praying that the brain tumor will be nonexistant or at least easy to get rid of without any complicantions.

I'll bet you do have a lot of horror stories if you have had 7 years with no remission at all. I really feel for you.

Please ask questions and research the site. There ar so many here who are willing to share experiences and research specific problems.

Love, Shirley

[Sara East]

Wow! Thank you all for such a great welcome...I've been looking for years for anyone who knew about LC and could sympathize. You all are really nice :) The MRI was good and there were no problems, back to the whole "We don't know why you have these strange blood tests." The day after the MRI I went to NC to visit my dad for two weeks so that's why I wasn't back on here sooner. Unfortunately my best friend since middle school found out while I was there visiting that she has a brain tumor that is really bad and has to have surgery. She will loose her sense of taste and smell and they won't be able to get all of the tumor since it has gotten so big...I was very upset especially since I just went through the whole brain tumor thing and mine was good. I appreciate what Tex and Trace, I think it was, said about gluten. I know they tested me for Celiacs disease and it was negative but they never did the genetic testing or anything else to see if I might be sensitive to it. I'll make sure to mention this to the doc at Boston. So can gluten sensitivity physically cause LC? I know with all the colonoscopies and biopsies I've had, it came back positive for LC everytime....they've even mentioned a bowel resection which at this point I said no. Thanks for all the info and well wishes :)

[JLH]

Ah, that's why our fellow newbie disappeared.

So glad your MRI was good but sorry about your friend.

My 1st cousin's grandson has a brain tumor just diagnosed in the last month or so. That reminds me, I haven't checked his Caring Bridge site in a few days.

Welcome back.

Joan LC

[tex]

Hi Sara,

It's great to hear that the scan results didn't show any problems, but I'm very sorry to hear about your friend's sad news.

Please don't let them talk you into a resection because of MC. That's like burning down the barn to control a few rats. It's a practical procedure for certain cases of Crohn's and UC, but not for MC. A resection can create more problems than it resolves, and in most cases, I doubt that it would resolve the issues, unless you completely bypass the entire colon, which amounts to an ileostomy. Bypassing all, or most of the colon would guarantee that you would have diarrhea every day, for the rest of your life. The reason I know a bit about this is because I've been through a resection myself, and I've researched it's possible use to treat MC - trust me, it's not a practical option for MC.

If you are willing to read and learn, and ask questions here, I feel sure that you can develop a treatment plan that will allow you to control your symptoms, and get your life back. We'll help in any way we can.

Thanks for the update,
Tex

[Dee]

Hi Sara!!!

Happy to hear that your MRI came out showing nothing... WHEW!!
As far as your question pertaining to gluten sensitivity physically causing LC??
No!!!
Dr. Fine stated to me that gluten does not cause MC, but adds fuel to the fire so to speak, meaning it adds to the inflammation going on in the colon from CC or LC..
Keep with us and asking questions and we'll help you out in any way that we can!!

Dee~~~~~~~

[Sara East]

Thanks for the info Tex! I'm sorry you had to go through the bowel resection and what you said about bypassing the whole colon made sense. I've had quite a few surgeries and procedures over the past few years for various unrelated things and I wasn't too keen on the bowel resection..that's part of why I decided to see the doctor in Boston. I'm tempted to try eating Gluten free for a while to see if that helps things. If it does add fuel to the fire like Dee said, maybe I might see a decrease in my symptoms?? Wow that would change my life lol :) When my kids were newborns I would have to hold them while they cried and run to the bathroom every hour or so. Sometimes they would wake up and cry and I couldn't get to them because I was in the bathroom and I felt like such a bad mom for leaving them alone crying all the time.

[tex]

Sara,

The diet is certainly worth a try, especially if you haven't tried it before. Many of us here, (including me), use it as our only treatment, and as long as we don't slip up and eat something that we shouldn't, we remain symptom free, and we feel great. It can take months for the diet to bring remission, for some of us, but many people see improvement in a matter of just a few days or a few weeks. Please try it long enough to give it a fair chance of working, (it takes a while for the gut to heal, especially if you have been reacting for years). If it works for you, (and I'm betting that it will), it will not only decrease your symptoms - it will completely eliminate them, provided that you are careful to avoid absolutely all gluten in your diet.

Good luck if you decide to try it. There are a lot of cooking suggestions, and recipes here:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=7

We also have a lot of information on the diet here, and pointers on finding restaurants, if you eat out:

http://www.perskyfarms.com/phpBB2/viewforum.php?f=6

Here's another forum with some menu ideas, and various discussions about the diet, (and also about medications):

http://www.perskyfarms.com/phpBB2/viewforum.php?f=27

Tex

P S Please don't feel that you are/were a bad mom. MC is a miserable, life-altering disease, that can almost completely rob us of all our energy. Until we get the symptoms under control, it tends to dominate our lives, no matter how hard we try to cope.

[Sara East]

My husband and I have been doing some research about the gluten diet, I appreciate the link with the recipes and I will definitely try it since it seems to have helped so many of you! At this point I'm ready to try anything to get off my meds, they just make me SO tired. Right now I'm on the least amount of meds for LC than I've ever been on but they still cost me a lot of money and energy. I'm taking 100mg of amitriptyline once a day, 20mg of bentyl 4 times a day, and 1ml of tincture of opium (DTO) 4 times a day. All of these together keep some of the pain at bay and keep my going to the bathroom down to about 6 times a day. The DTO is really hard to get and my pharmacy makes a big deal about it, checking my ID every time, making me call ahead to order it, sometimes refusing to fill the whole thing, and telling me I shouldn't be taking it because I'm most likely addicted to it. They actually said that to me! When I talked to a manager about how the pharmacists have been treating me, she told me if I don't like it go somewhere else! I was wondering if anyone else has had to take DTO and if so was it hard to get? I tried steroids for a long time but they didn't help at all and I had a really bad reaction to them...every day I woke up with a swollen face and hands, they made me feel emotional, and I shook all the time. I decided I'd rather just have the LC symptoms than the steroid side effects. I think I've tried every drug treatment available. When I have more time I'll have to tell ya'll about the last doctor I saw...he was a complete nincompoop!

[JLH]

Holy cow, is that a chain pharmacy? I trust you took them up on their offer. What a very stupid way to treat a customer.

I hope the diet helps you. I imagine I'll have to be on it, too. I'm kind of watching what I eat. This weekend at the sailing club, I'll need to have a different meal than the burgers etc. they are serving. No Happy Hour food or drink. BUMMER.

[Sara East]

It's not a chain pharmacy, it's the employee pharmacy for employees of the hospital my husband works for. It's the only pharmacy my insurance will cover and they know that, that's why I was so angry at them because they knew what position they were putting me in by saying that. What kind of foods do you have to avoid? Is it greasy foods like hamburgers and fries? I know that and pork really set me off. Also, I have a really hard time with fruits and veggies and that has been tough for me since I've always been a healthy eater and could live on salads, veggies, and fish. Have you had colitis for a while? I used to be a climbing guide and now I can barely leave the house because of how often I have to use the bathroom. Even picking up my kids at school has been hard and I've been late almost every day because I have to go potty at about the time I need to be leaving. Sorry for saying potty lol but my kids are very young and I say that to them and then say it to friends and the doctors too :) My doc always laughs because I have to give her an update on how many times I go and I always end up saying potty.

[JLH]

The FMs named us!

Feb. diagnosed with mild diverticulosis. LC diagnosed in June. I wasn't as bad with the D as a lot of PP. I'd have it maybe 3 times in the morning and sometimes after dinner. I told DH it gives new meaning to the phrase "eat and run."

I ate oatmeal every morning for cholesterol now on Rice Chex thanks to PP info.

I have been on Welchol so far. Never have seen the doc other than for the procedures!

Boy, you have some heavy duty drugs. Can you report the pharmacy manager to his or her superior? That attitude really stinks and shouldn't be tolerated.

I do believe I will be switching doctors......I know for certain DH won't go to her. He's scheduled for July 16th for his first colonoscopy but he'll cancel and get a new one.

[angy]

Hi Sara,
Im a newbie here too, and found everyone to be so helpful and informative. Tex really holds a goldmine of information and has educated me loads within the 3 days i have been on the forum. Everyone here is so caring and there is an amazing energy. My head is still buzzing with a new cc diagnosis and i am just discovering and researching this disease.

Sorry to here about your bad news both for you and your friend and i hope you will find the strength and comfort to get through this..

anjy

[JLH]

Angy, here I thought you were sleeping from being up so late during chat.

It is a "wild and crazy" time after getting diagnosed isn't it? Thank heavens for the net and all the info we can research. I found EnteroLab and then the PP after the other MC bbs.

I've printed stacks and stacks of stuff to read but the very BEST info is right here.

I hope the EnteroLab nurse got through to my GI today. I do not know why doc wouldn't order the tests even after I said I was going to do them even if she wouldn't order them. I know there's a slim to none chance of BC/BS paying anything but we won't know unless we try.

[angy]

lol!! i was a bit dazed.

I wish enterolab was in scotland...

i take my hat off to sara ...shes been dealing with her problems for 7 years. What a brave lady!!

[tex]

Sara,

Please don't shoot the messenger here, but I think I can explain to you why those pharmacists are so concerned, (whether they are right or wrong, is another matter entirely). Please bear with me while I go through this. First, the use of the abbreviation DTO is highly discouraged, due to the fact that doctors have made errors that had fatal results for their patients, when they misinterpreted the meaning of DTO. It is supposed to mean Deodorized Tincture of Opium. However, some people wrongly interpret it to mean Diluted Tincture of Opium, (as in the case of paregoric, which is 1/25th the strength of laudanum, (which contains approximately 10 milligrams of morphine per milliliter). Paregoric, contains only 0.4 mg of morphine per mL, (which is the equivalent of 4 mg of powdered opium, per mL of solution). By comparison, deodorized opium tincture contains 10 mg per mL of anhydrous morphine, which represents the equivalent of 100 mg of powdered opium, per mL of solution.

The "normal" adult dosage of laudanum, for the treatment of diarrhea is 0.6 mL, (which is equivalent to 6 mg of morphine), by mouth, four times a day. This means that a normal daily dose is 24 mg of morphine, which is the equivalent of approximately 240 mg of opium. You are taking 40 mg of morphine, which is the equivalent of 400 mg of opium, which is no big deal, since higher doses are recommended for refractory cases.

Here's why the pharmacists are concerned: Opiate dependence, (not necessarily addiction), is running at epidemic levels in this country. There may not be such a thing as a "safe" maximum dose, below which dependence, (or even addiction, which is not the same as dependence), is not a possibility, with long-term use. Typically, those who become dependent through medical use of opiates, average somewhere around the equivalent of 400 to 500 mg of morphine per day, (the opium equivalent would be ten times as much). By contrast, studies show that most addicts on the street, (IOW, those using it for recreational purposes, rather than medical reasons), mostly use around 100 mg, (though some use much more, obviously). Almost invariably, continued use, requires more of the painkiller, in order to get adequate results. There is no upper limit on the amount that can be administered. IOW, the proper dose is the minimum dose that gets a response for that particular patient.

That said, not all users become addicted, and morphine addiction due to legitimate medical use, is not extremely common, but it does occur. Opiate dependence, on the other hand, (due to medical use of a painkiller), is much more common.

While I agree that it is the responsibility of a pharmacist to point out the risks involved with taking opiates, it is not their duty to advise you to stop taking it because you are "most likely" addicted to it, (that would be your doctor's responsibility), and the manager who told you to go elsewhere if you are not happy with their behavior, may have been realistic, but she was definitely inappropriately rude. First off, you are not "most likely addicted to it". It's possible that you be dependent on it, but that is not the same as addiction. All those pharmacists who told you that, need to go back to school, to learn the difference, or keep their mouths shut, and the manager who made that rude remark, should be reported to upper management, so that they can schedule her for a crash course in "manners".

Considering the symptoms you described for the use of steroids, they are definitely not an option for you, since you had both physical, and neurological adverse symptoms.

Everything that you are taking to control your MC, (unless you are being prescribed the amitriptyline for it's anti-depressant effects), has constipation listed as a side effect, and so they are all being prescribed to you solely on the merits of their possible side effects, rather than for their explicit ability to control inflammation due to an inflammatory bowel disease. So yes, I wholeheartedly agree, it is time to try the diet, and get away from those medications, provided that you can fine tune the diet so that it will do the job for you. If the diet works for you, it will eliminate the source of the inflammation, and your gut will heal.

We can certainly relate to your experience with a doctor worthy of the label of "nincompoop", and we love to read stories about nincompoop doctors, since so many of us have encountered at least one or two of them, while trying to locate the rare doctor who actually understands MC.

Tex

P S Don't throw away your climbing boots just yet - we have "graduates" who are now running marathons, after fine tuning their diets.