Another Newbie...

[arizwldcat]

Hello,

My name is Kris and I've been diagnosed with MC (as of 9/30, the date of my last colonoscopy...had two this year...but that's another story). I've had D since January

, but had a spontaneous remission (I didn't realize it then) in April that lasted until July. Of course, it was during this time that my first colonoscopy was done and so, since I wasn't experiencing D then, the doctor didn't do a biopsy. This was about the time of my 50th birthday, and it was "time" for my colonoscopy. When the D came back, I started googling like mad and suspected that my problems were due to gluten sensitivity, not knowing ANYTHING about MC. Went off gluten for a week, and felt a little better, but I have to admit I wasn't as strict as I could have been. The D didn't go away, so I started to doubt my self-diagnosis. Plus, we had to fly to AZ for a wedding the next week and I didn't want to be on a restricted diet when I didn't know whether that was truly my problem.

When I got back from AZ the end of September, I went to see the GI doctor (it had taken a full 2 months to get an appointment! grrr...), who, to his credit, knew precisely what I had. He told me that he thought I had MC and was going to order a colonoscopy to confirm. Voila! He was right.

While I think my doctor is great for knowing exactly what my problem is, I am a bit nervous about my followup appointment today. I have done lots of research (and lurking on this board for a couple of weeks), and what I'd like to do is try the Pepto treatment that Dr. Fine recommends. I'm also going to ask him to order the stool test, but if he won't, then I'm going to do it anyway. Never hurts to ask, though. If the Pepto treatment doesn't work (along with the gluten free diet, which I'm sure I'm going to need), then I'm willing to pursue other options. I've already been on Asacol since the colonoscopy, and while it seemed to work at first (I had 2 days of "norman"), I've returned to the watery "D" I had before. I am on a rather low dose compared to others (only 1 pill 3x a day), so perhaps it would work better if it were increased. I do seem to have a bit of nausea with it, though. The good thing is that while I have explosive D, I usually don't have a lot of pain with it. And I've found that doing breathing exercises and relaxing allows me a little extra time before I have to make a mad dash. My reservations about my doctor stem from his response when I told him I had extensive loud gurgling and he told me that was "normal"...(excuse me...I've been alive for 50 years and this is nothing "normal!!!"). But perhaps he's like lots of other doctors who are still learning about this disease. So, I'm off to visit him in about 45 minutes. My husband, bless his heart, has read a lot of the research and agrees with my decisions, and is going with me for moral support.

So, if you've read this long exposition, thank you...and I just want to say that I appreciate this board!

Kris

[Polly]

Hi Kris and !

So glad you posted! Your story sounds quite familiar, and it seems as if you are already taking charge of your own health and planning what you need to do. Good for you! It will be interesting to hear what your doc says today. Most likely, you won't get any support for diet - docs just don't know about the connection, unfortunately. But YOU do, because you have been lurking here with our MC "family" and have been finding out what really works. It often takes months for the gluten free diet to work - also, as you've seen, there are frequently other food intolerances present,too. But don't worry.........there is plenty of advice and support here to help you regain your life.

BTW, Dr. Fine no longer recommends Pepto-Bismol, because he feels one should jump right to the GF diet. Also, that is a low dose of asacol you are on. Asacol did nothing for me, but some here have had luck with it. If that doesn't work, most try Entocort next. If you do diet at the same time, there's a good chance you can eventually manage your MC with diet alone after stopping the Entocort. Looking forward to future chats.

Love,

Polly

[starfire]

Yes, you can feel very fortunate (as I do) that you have not experienced a lot of pain with MC. I had horrible nausea though. I have not had nausea from Asacol. Yes, your dose is low. I don't know if an increase would help, though, since you are experiencing nausea only since starting the Asacol.

Sure glad you found us. Please let us know how your apt. goes. Most of all GOOD LUCK and good researching. You have certainly started on the right track.

Shirley

[ant]

Dear Kris

Welcome from the Far East. I hope your Doc appointment goes well.

Best wishes, Ant

[arizwldcat]

Things went pretty well at the doc's. He was totally supportive of the Pepto ALONG WITH the gluten free diet. In fact, he said, he'd spent lots of time in Asian countries and says that gluten free is probably a really good idea for most people anyway. (Their diet is basically gluten free and there's basically no celiac's over there). He knew all about the correlation between MC and Celiac's/gluten sensitivity, and he ordered a blood test for Celiac's (which I know will probably come back negative) and wanted to wait for the results of that before ordering the stool test, which he'd never heard of. He'd (of course) never heard of Dr. Fine but was truly open to hearing about him, so I was happy about that. I think I'm going to go ahead and order the stool test today, because I'd rather know sooner than later what my sensitivites are. After I send in my sample, I'm going to dive right in to the Pepto treatment and the GF diet. I also have a follow up appointment for 2 months; if the Pepto and GF diet aren't working at that point, I plan to go ahead with the Entocort.

[starfire]

WOW, I'm impressed with your doctor!!!
Did he have anything to say about the Entocort?

I'll bet it feels good to be doing something yourself about the MC.

Shirley

[arizwldcat]

Well, the first thing he wanted to do was order Entocort, at which point, I stopped him and asked if I could try something else first. He laughed, but listened (spent 45 minutes talking to me), and then said he always learns things from his patients and if this works for me, he's going to recommend it to others.

[tex]

Kris,

Welcome to our internet family. Wow! You have a very open-minded GI doc, which is most unusual, (as GI specialists go). Good for him, and good for you, for finding him.

The reason why Polly mentioned that Dr. Fine no longer recommends the Pepto-Bismol treatment, is because Dr. Fine discovered that an unacceptably high percentage of patients experience adverse reactions to it. The diet accomplishes the same goal, it just takes longer for the gut to heal, without the therapeutic effect of the Pepto, (it's a mild antibiotic). For those who can tolerate 8 weeks of treatment with Pepto-Bismol, though, his research showed around an 85% remission rate, (when used in combination with the GF diet), which is extremely good, as medication responses go.

Finding a GI doc who listens to his or her patients, and actually admits that he/she learns from them, is like finding an oasis in the desert. Finding a GI doc who also believes in the value of the GF diet, probably falls under the same odds as winning the lottery. You are very, very fortunate. Most of us would love to find a doc such as that, but we know that it will never happen.

As long as you don't develop neurological symptoms from the Pepto treatment, it shouldn't harm you, and there is an excellent chance that it will bring you to remission. After you achieve remission, you may find it necessary to remove some other proteins from your diet, (besides gluten), such as casein, and possibly soy, but you can cross that bridge when you get to it. If you should discover that the Pepto treatment is not for you, after all, then as the others suggested, Entocort is probably the most effective "safe" medication available for treating MC.

Good luck with your treatment, and congratulations on finding one of the best GI docs in this country. Please feel free to ask anything.

Tex (Wayne)

[arizwldcat]

My doctor is great, I agree. I practically lived on Pepto when I was in college (a few years back...lol), and no adverse reactions then, so I have high hopes. I just ordered the stool (gluten) test from Enterolab. If I end up having problems with the Pepto, the doc said to call him and we can start the Entocort sooner.

I have a history with diet...in 2006, I lost 90 pounds and have kept it off successfully since then with a careful (and I thought, healthy) diet of whole grains, fruits, veggies, and lean protein. Giving up bread (and my favorite food: cake...or should I say icing with cake under it) will be difficult, but perhaps I can find substitutes that will do. I don't eat sweets that often, anyway, but enjoy an occasional treat.

Thanks for the warm welcome, everyone! I am glad this board is here!!!

Kris

[hoosier1]

Welcome Kris,

I am echoing the good advice from the others.

Regarding giving up foods that you like, I also gave up gluten, and specifically, bread.

I LOVE bread and recently returned from San Francisco, the home of sour dough bread!!!! I didn't eat it, but I sure wanted to.

So per the recommendation of the others on this forum, I purchased a bulk quantity of Pamela's Gluten Free Bread Mix, pulled out the once trendy bread maker, and in one short hour, have a really good loaf of fresh bread. It does taste different from normal bread, but I have quickly acquired a taste for it. It makes excellent toast.

My wife, who is not gluten sensitive, loves it more than I do.

So, give it a try. It is a very good substitute for the original.

Rich

[Gloria]

WELCOME KRIS!!!

Your doctor sounds great!! My doctor is pretty open-minded also, and has told me that he learns from his patients. That said, when it comes to treating my MC, I am on my own with determining food intolerances. I believe that everyone has to do their own sleuthing; the GI is there primarily to issue prescriptions when needed.

It sounds like you are being very proactive, especially if you've already ordered the test from Enterolab. Keep us posted; we are always interested in members' solutions and problems. We are here to learn from each other.

Gloria

[MaggieRedwings]

WElcome to the family Kris.

I am so happy to hear that you have found a doctor that is so open to listening and yes - actually agreeing - with your potential position of going gluten free. He is a find and keep him at all costs.

As for me pepto back in the day was recommended first along with Asacol and both did nothing. I am currently non-med free and manage this with diet alone.

Good luck to you and you will find the bread will become a want less and less.


Maggie

[Gabes-Apg]

Gday from Australia Kris



as maggie said, your doctor is a keeper, hang onto him

giving up certain foods can be hard, it changes your routine, when you have a bad day your comfort foods are not there anymore, with a bit of time you will figure out reasonable replacements. my bread replacement that i bake is more like a muffin, i can cut it in half and lightly toast it under the grill and have eggs on it.

there are loads of sweet treats out there I have managed to find lollies and chocolate that are GF/YF/DF/SF (although i am trying my hardest to not have sugar)
there are some great recipes in the 'dees kitchen' section of this web site.

You will find what works for you! and when you figure out what works and what doesnt stick to it

take care

[Linda in BC]

I am a little late in welcoming you , Kris, as I missed your post first time around. but

WELCOME!

I am wondering how you have made out with the pepto. That was amongst the first things I tried many years ago, and I did the 2 month 2 pills/3x /day regime. It worked absolutely fine while I was on it, but as soon as I stopped it was back to major D all the time. I was not one of those lucky ones for whom it brought remission. Come to think of it, I don't think I have read of anyone on this board who has been one of those " lucky ones". but I do hope it works for you!

After thirteen years of this, I went on Entocort a few weeks back and have had a great positive experience with it. Mind you , I am still taking it.. the proof will be in the going off, right?

Good luck to you in your search for remission.

Linda

[arizwldcat]

Good news, for me...

I posted a while back that I went into remission again before I even took the stool test. But I went ahead and sent the sample in, and got the results back...

Guess what?? I am "normal"!! Not gluten sensitive at all, according to the Enterolab. My guess is that my particular case of MC is caused only by NSAIDS (I stopped using them after I got the diagnosis in October, and 2 weeks later I went into remission!) I've been eating gluten free for a couple of weeks now, but am slowly adding gluten back in (but will always limit it...mostly a calorie thing) to my diet. I went back on my fish oil caps with no adverse effects, and so far so good.

I have one last follow up with my doctor in 2 weeks. I almost feel bad that I didn't get to try the Pepto, but I think in my case, it was enough to stop the NSAIDS and perhaps that will be valuable info for him as well. Now I need to figure out what to do for pain relief. Tylenol works for many things, as does heat therapy. I've learned from this experience to WAIT before taking anything for pain. Many times it resolves on its own. And Yoga definitely helps with aches and pains!!!

Thanks again, everyone, for the warm welcome I've received. You helped me a lot when I needed it!!