OMG - I finally got to my new GI Dr.

[suzieq]

Hi all,

I finally got to my new GI Dr. in North Carolina after waiting since the fall. To recap, my CC flared in August, my new Primary Care Dr. prescribed the Entocort in September and I weaned off of it mid January. A few weeks ago, I started to have problems again, so I looked forward to this appointment.

My new GI dr. does not like the use of Entocort, because of side effects and especially because I have osteoporosis. He is having me do the Pepto Bismol route for 6 weeks. My belly is very bloated and distended, intestines are very active, the last 1 1/2 weeks have been bad.

OMG - he brought up food sensitivities and he absolutely floored me, he totally believes in it!!!!! He asked me what meds I have taken in the past. I told him about the 3-4 courses of Prevpac, I used Advil a lot and I told him about the Fosamax I took for 8 years. I gave him my Enterolab results.

So, I will do the Pepto route and he said emphatically, that I have to be real strict with being gf, sf, ef and cf and to stick to low fodmap foods. I just couldn't believe it. I thought I was doing pretty good with it but must have slipped up somewhere. I also have had a lot of stress issues. I take valium when I feel overwhelmed and he said that wasn't a bad thing.

One other thing, I was bored with what I was eating so I thought that I would try green smoothies. To tell you the truth, that's when some of my problems started. Even though spinach is on the low fodmap list, it's a no no. Now I have a new Nutra Ninja, will have to try some different combos of safe foods.

Thanks for listening,
Susanne

[tex]

Miraculous changes are happening in some areas of the country regarding attitudes about digestive system treatments. Lucky you.

Thanks for the update, and good luck with your treatment program.

Tex

[Marcia K]

Wow, you are very lucky! Good luck on your journey.

[Mrs. Poopy Jeans]

Susanne, how wonderful that you've found a Doctor who isn't just into meds to cover up symptoms. I'm happy for you.

[Polly]

Hi Suz!

I hope the PB works, but if not, you might want to try a trial of cholestyramine. It's cheap and very safe and the only way to know it might help is to try it. There are no readily-available tests to see if it will work. (It works wonders for me).

Good luck!

Polly

[suzieq]

Hi all,

Thanks so much for your replies.

I took Pepto Bismol 6 ad day for 3 days and it didn't seem to help, had the same symptoms. Yesterday I didn't take it at all because I was constipated. This morning I had the "mud" norman and in general I don't feel good. I took 4 Pepto's just before and I will see how I feel later. Does it build up in your system or does it just help day by day? I will ask about the cholestyramine on my followup visit. It's a prescription?

My GI dr. scared me when he told me that I was very bloated and distended and to get myself to a gynecologist asap. I have an appointment this coming Friday. I am overdue, I just hadn't found one yet after moving here. I had a hysterectomy at 39, they removed the uterus and left ovary and repaired the right ovary, I had severe endometriosis. So I'm quite unnerved by his statement and I'm worrying about it, so it's added stress which I'm not handling well right now.

Thanks,
Susanne

[tex]

Susanne,

Bismuth subsalicylate is somewhat slow to leave the body so there is some buildup over time. That's why the high-dose Pepto-Bismol treatment is limited to 8 weeks, to minimize the risk of a toxic buildup.

Yes, cholestyramine is available by prescription only.

Uh-oh! If your GI doc was that disturbed by your bloating, there are 2 possibilities:

1. He is very inexperienced and doesn't realize that many of us look as though we are about 10-months pregnant because of our MC symptoms.

2. He is unusually perceptive and actually has a reason for his concern.

My guess is that the first one applies because he actually hasn't seen very many MC patients. Experienced GI docs who recommend diet changes and decline the use of budesonide are still rather rare, so either he is new at the job or he was cast from a different mold.

Tex

[suzieq]

Hi Tex,

Thanks for the info on the Pepto Bismol.

I thought this GI Dr. was different. He didn't want me on Entocort because of the osteoporosis and there are too many more side effects. I told him that my GI in NJ and I agreed to disagree that I followed a gj, ef, df, cf diet and he said diet had nothing to do with it. The new GI said that diet has everything to do with it, so I felt comfortable. I remember thinking, however, I'm in a flare, wouldn't my abdomen be bloated and distended? In any event, I will follow up with the gynecologist, I'm over due anyway and hopefully nothing is wrong. That should answer the question about the new GI. On another note, he was approximately the same age as my GI in NJ.

Thanks again,
Susanne

[suzieq]

Hi Tex,

I went to my new gynecologist today, per the GI doctor's warning. Upon the exam today, I was neither bloated or distended, in fact everything checked out just fine. I still have my left ovary, which felt normal. To close this chapter, he suggested that I get an ultrasound to confirm that the ovary is normal. That's scheduled in 2 weeks.

I'm still taking the Pepto, but when it makes me really constipated, I don't take as much the next day. There is still a lot of gurgling and what not going on in there. I have eliminated my white wine that I like, I am weaning off coffee, down to 1/2 cup. I'm following a low fodmap gf, cf, sf and ef diet.

When I go back to the new GI I will ask for cholestyramine, to give it a try. That's the only reason that I'm going back.

I believe your guess is correct that he is inexperienced with MC patients.

Thanks,
Susanne

[tex]

Susanne,

That's good to hear, that the checkup went well. If I interpreted your post correctly and my math is correct, you've been taking Pepto-Bismol for about 9 days now. According to Dr. Fine's published trials with Pepto, I believe he found that the mean time to remission was about 2 weeks (of course this was for 8 tablets per day, every day), so you should be seeing results in roughly 10 days or less if it's going to work for you.

If the Pepto-Bismol does not bring remission, or if you would rather take Entocort, you can actually take Entocort with very little risk, as long as you have never taken any corticosteroid previously and you do not stop taking it until you are finished with it. I'm pretty sure that your doctor is not aware of this, but it is a fact, verified by published medical research. In the quote below, "corticosteroid-naive patients" refers to patients who have never previously taken a corticosteroid. If that apples to you, then you can safely take it with only a very slight risk of minimal osteoporosis damage.

Here's a quote from pages 60–61 of the book Microscopic Colitis:

There is another very good reason why it can be advantageous to continue a treatment regimen with Entocort EC rather than to stop a treatment and subsequently resume it. Research shows that corticosteroid-naive patients suffer significantly less bone density loss (when using budesonide for the first time) than patients who have used a corticosteroid previously, or patients who use prednisone for the first time.3 This implies that discontinuing a treatment with budesonide and restarting it increases the risk of bone density loss. The amount of difference is huge. Schoon et al. (2005) showed that corticosteroid-naive patients taking budesonide average only slightly more than one-fourth of the bone density loss of patients who resume taking budesonide after a prior treatment regimen has been discontinued.

Here is reference 3 from that quote:

3. Schoon, E. J., Bollani, S., Mills, P. R., Israeli, E., Felsenberg, D., Ljunghall, S., . . . Matrix Study Group. (2005). Bone mineral density in relation to efficacy and side effects of budesonide and prednisolone in Crohn's disease. Clinical Gastroenterology and Hepatology, 3(2), 113–121. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/15704045

But as Polly suggested, if the Pepto-Bismol doesn't work, I would try cholestyramine first, before trying Entocort.

Thank you for the update.

Tex

[suzieq]

Hi Tex,

If the GI Dr. were to have prescribed Entocort, it would have been the 4th time I'd be on it since 2011. The 1st & 2nd times I was on it for at least 6 months, this last time 4 months. The Dr. prescribed 6 chewable Pepto's, which I find disgusting, every day for 6 weeks. I'm taking the caplets. Should I take all 6, even if I'm really constipated?

I started choking on my calcium pills back in December and stopped taking them. I even choked on them when I cut them in half. The gynecologist suggested Tums for calcium intake, are these safe for us MC'er's?

Thanks,
Susanne

[tex]

Hi Susanne,

OK, your prior uses would mean that you would be exposed to the "normal" risk of possible osteoporosis damage from Entocort. Compared with prednisone, the risk is only approximately 20 % when using Entocort. IOW it's a reduced risk, but certainly not a zero risk.

When taking Pepto-Bismol to treat MC (and this applies to Entocort, also), whenever constipation symptoms begin, that's a sign that it's time to reduce the dose. Failing to step down the dosage in the presence of constipation can lead to symptoms that are worse than the diarrhea for which the treatment is being used.

Yes, chewable Tums or Rolaids are excellent calcium supplements and they can be used (as long as you are not sensitive to any of the inactive ingredients. Here is what they contain:

Tums Regular

Active ingredient — Calcium Carbonate 500mg

Inactive ingredients — Assorted Fruit Flavor:

adipic acid, corn starch, FD&C blue #1 lake, FD&C red #40 lake, FD&C yellow #5 (tartrazine) lake, FD&C yellow #6 lake, flavors, mineral oil, sodium polyphosphate, sucrose, talc

Inactive ingredients — Peppermint Flavor:

corn starch, flavor, mineral oil, sodium polyphosphate, sucrose, talc

Tums Ultra Strength:

Active ingredient — Calcium Carbonate 1000mg

Inactive ingredients — Assorted Tropical Fruit Flavor:

corn starch, FD&C red #40 lake, FD&C yellow #5 (tartrazine) lake, FD&C yellow #6 lake, flavors, mineral oil, sodium polyphosphate, sucrose, talc

Inactive ingredients — Assorted Berries Flavor:

adipic acid, corn starch, FD&C blue #1 lake, FD&C red #40 lake, flavors, mineral oil, sodium polyphosphate, sucrose, talc

Inactive ingredients — Peppermint Flavor:

corn starch, flavor, mineral oil, sodium polyphosphate, sucrose, talc

Inactive ingredients — Assorted Fruit Flavor:

adipic acid, corn starch, FD&C blue #1 lake, FD&C red #40 lake, FD&C yellow #5 (tartrazine) lake, FD&C yellow #6 lake, flavors, mineral oil, sodium polyphosphate, sucrose, talc.

Rolaids

Active ingredients — calcium carbonate (550 mg) and magnesium hydroxide (110 mg).

Inactive ingredients — dextrose, flavoring, magnesium stearate, polyethylene glycol, pregelatinized starch, sucralose and sucrose.

Calcium carbonate is 40 % elemental calcium. Therefore each tablet will contain this much calcium:

Tums Regular — 200 mg calcium

Tums Ultra Strength — 400 mg calcium

Rolaids — 220 mg calcium

Note that Rolaids also contains magnesium hydroxide, aka milk of magnesia. Magnesium hydroxide is 42 % elemental magnesium, so that each Rolaid tablet would contain slightly over 46 mg of magnesium (roughly 14 % of the RDA for women).

Whenever a calcium supplement is used, a magnesium supplement should also be used. The ratio in Rolaids is incorrect, however. Ideally the magnesium/calcium ratio for optimum resolution of osteoporosis should be approximately 1:1.

I hope that this is helpful.

Tex

[suzieq]

Hi Tex,

Thanks so much for this information. I only took 2 Pepto's today because norman visited.

I think I might go with the Rolaids for the calcium and magnesium. I take a multi vitamin that has 50 mg magnesium in it. I don't know if that's enough magnesium. I do take 5000 IU of D3.

I was just remembering when I was in my early 20's, I had to have a barium enema, for what reason I can't remember. I also remember having to take Maalox for a time there too, I guess I always had tummy trouble. I remember when I could eat anything that I wanted to with no problems, those were the good old days!!!

Thanks again,
Susanne

[tex]

Well that's good news. Maybe the Pepto is beginning to work.

That should be enough vitamin D, but more magnesium would probably help to reverse the osteoporosis trend.

I can remember digestive problems at various times too, but I enjoyed over half-a-century of eating whatever I wanted. Then the time arrived to pay the piper.

You're very welcome,
Tex

[Leah]

Are you staying away from fruit and sugar? They both can really cause havoc ( gas and bloat)
Leah