Newbie with a hopeless doctor

[coffngrl]

Hi everyone, I'm so glad to have found this board and the wealth of information here. I'm a year into a celiac disease diagnosis (anniversary comes in two weeks!) and have been gluten free since the bloodwork came back off the charts positive. I stopped losing weight after going gluten free, but my guts haven't cooperated.

I am on my third gastroenterologist. The first prescribed Bentyl "it's IBS". (IBS is GI speak for "I'm baffled, sorry") to no avail. It did give me some profound side effects like I'm driving along and suddenly have no idea where I am. Great!
Second GI was a condescending asshole and prescribed Levsin. No, seriously. I don't have IBS.
Third GI finally found LC and put me in Entocort, which after a few days was a miracle. I felt normal, and could eat anything except lactose, which still caused the usual lactose intolerance issues.

However, the Entocort caused some side-effects, like I got my period every 2 weeks and lost a lot of iron. After two months on 9mg/day, I began to see swelling in my ankles and other signs of cortisol overload.

A week after stopping the Entocort (no taper), I began to have the terrible symptoms: progressively looser and more frequent BMs, cramping, the feeling of my colon burning inside me.

Doctor 3 prescribed Asacol, 800mg/3x/day and it might have done a little something to make my watery D turn slightly less watery, but then I was waking up at 4am sprinting to the bathroom - gas, loud loud gurgles, and even more trips to the toilet per day.

I have a camping trip planned in 2 weeks and need to be better, but when I asked if I could just go on Entocort again and taper off this time, the doctor said no, double the Asacol. That's 1600mgX3 = 4800mg per day??!!

I've stopped eating any dairy, given up caffeine, greatly reduced histamines even though I have no evidence they're an issue for me, have pretty much eliminated soy but am hoping I can keep eggs. I've given up fresh fruits and veg and all manner of fiber. No results.

My questions: Is half a gram of a drug every day a good idea?
-How long after you eat bad foods do the trots start? For me I run all morning long then by afternoon I'm OK, and as long as I don't take the Asacol I sleep through the night. The Asacol makes that impossible. Next morning, start all over.
-I've tried elimination diets and had no success in stopping my symptoms.

Is it time to find another GI? I'm desperate. I don't want to ruin my vacation! Backpacking for 32 miles will take a really really long time if I have to stop to crap every 15 minutes.

Best.
CG

[brandy]

Hi CG,



Generally Asacol does not work well for us and can make things worse. I can't remember the reasons why....perhaps Tex can elaborate.

I have a camping trip planned in 2 weeks and need to be better,

It sounds like the Entocort worked but the side effects were rough. (That is what happened to me.) Did you go off Entocort 9mg after two months all of a sudden? I think that is dangerous if that is what the doc told you to do. The GI doc should have had you have at least had a small baby taper as Entocort is a steroid.

It sounds like you'd like to get back on Entocort to get you through the trip? You can order direct from India without a scrip but that takes about 3 weeks for delivery. I'd call the nurse today at your existing GI asap and tell her the Asacol is making things worse....on both doses. Tell her you are having nocturnal D in bed and don't make it to the bathroom. Tell her you are having accidents at 4:00 am and not making it to the bathroom and it takes you an hour to scrub the floor. Don't mention backpacking trip as they will tell you not to go. Tell her you spent several thousand dollars on your vacation and you are concerned about having accidents in bed at the hotel. Tell her you would like to get back on the Entocort as you know it worked and you have a vacation in two weeks to get you through the vacation. I'd probably stop the asacol. It sounds like you are doing better on nothing.

Uceris is an option. It is a newer drug that has worked for several people on board here. It is in the same family as Entocort but absorbed differently. I'm not sure if I'd try a new drug right before a vacation.

It may be tough getting an appmt with another GI doc in 2 weeks. Depends where you live. I'd make an appmt as backup. You can always cancel.

Some folks on this board have their PCP's prescribe their Entocort. You might want to try to get appmt w/ your pcp tomorrow and see if he/she will right a scrip for Entocort and give you name of GI you can renew with when you get back from vacation. I've never asked my pcp but he doesn't think much of GI docs and thinks the scrips for inflammatory disease are barbaric and worse than the condition so I suspect he would give me a short term script if I told him I was moving to new GI and to get thru a vacation.

I'd probably explore all 3 of the top options......call nurse at existing GI.......make appmt w/ new GI (you can always cancel or push back)....see pcp and see if you can get Entocort from him.

If Entocort/Uceris work but with side effects move down to lower dose quicker but use immodium in conjunction. Experiment w/ immodium during next two weeks. I'd lean heavily on immodium during backpacking trip.

What are you eating? Consider eating a lot of protein the next several weeks......

Brandy

[brandy]

Hi CG,

Saw Zizzles post. I forgot about the pepto regimen that some people use. 8 peptos per day for 8 weeks. Take 2 every couple of hours. SIDE EFFECT CAN BE TINNITUS. This works for some people. The pepto is used as a stand alone treatment....in lieu of prescription drugs.
Do a search on here for further discussion.

Brandy

[coffngrl]

Thanks for the advice. I'll ask my current doc about Uceris - never heard of that one! I'm not sure on the gambit about the fecal incontinence - it seems like karma could turn that one back around on me!

As far as food, I subsist on my home made GF bread that's brown rice, sorghum and tapioca starch, plus a mainly meat and potatoes or meat and rice diet. I have been eating peanut butter but am going to stop that and see if it helps.

The Asacol seemed to help reduce the bloating, albeit very slowly, but I might be attributing that to the drugs when it was really the concomitant elimination of dairy from the diet.

What I wouldn't give for a doctor who could actually tell me exactly what was happening and how to make it stop! Why are they all so totally useless?

[brandy]

I have been eating peanut butter

Almond butter is a better choice for us as peanut butter is a legume (soy). One of our members Carol just posted she had a problem with one of the brands of almond butter. I'd avoid the brand she was using. Discussion was in the last page or two of threads. I think almond butter was in the title. You can buy the almond butter in sleeves at the health food store which would be good for backpacking.

It takes a lot of protein to heal.

[tex]

Hi C. G.,

Welcome to our Internet family. You have your work cut out for you, with a backpacking trip coming up in 2 weeks, but since self-reliance and innovation are common virtues among the members here, it's probably doable, if you're motivated.

FWIW, with Brandy,

Generally Asacol does not work well for us and can make things worse. I can't remember the reasons why....perhaps Tex can elaborate.

Anyone who is sensitive to NSAIDs (which is many of us) will typically react to mesalamine also, because mesalamine is a derivative of salicylic acid, similar to NSAIDs. Asacol and all of the other 5-ASA medications can cause this problem. As reported by Dr. Kenneth Fine, over 16 years ago, the problem is that for anyone sensitive to NSAIDs, mesalamine can promote the production of leukotrienes, which of course are pro-inflamatory.

Although mesalamine inhibits both lipoxygenase and cyclooxygenase in vitro (and should decrease the production of both leukotrienes and prostaglandins), clinical manifestations and results of fecal eicosanoid analysis in our patient suggest that this drug may stimulate leukotriene synthesis as do analgesic NSAIDs and, in turn, lead to diarrhea or intestinal inflammation (or both) in patients with inflammatory bowel disease.

Diarrhea Associated with Mesalamine in a Patient with Chronic Nongranulomatous Enterocolitis

And there are earlier citations for UC patients, as far back as 1984:

Activation of ulcerative colitis with mesalamine has rarely been reported. In case 1, a 34-year-old man was treated with oral mesalamine, resulting in an exacerbation of colitis that rapidly improved with glucocorticoids and mesalamine withdrawal. Oral cromolyn sodium and occasional low-dose prednisone therapy has maintained long-term remission. In case 2, a 28-year-old man receiving prednisone treatment developed chest pain and myalgias 1 week after initiation of mesalamine that resolved on mesalamine withdrawal. A lower dose of mesalamine with continued glucocorticoids resulted in clinical improvement, and both drugs were tapered. Mesalamine sensitivity was documented endoscopically and histologically by evaluating mucosal changes after two mesalamine enemas during a 24-hour period. There was dramatic progression from quiescent disease to active colitis in 24 hours. Mesalamine sensitivity must be included in the differential diagnosis of ulcerative colitis exacerbations. Concurrent steroid therapy can suppress systemic side effects, making the diagnosis even more elusive.

Exacerbation of chronic ulcerative colitis with mesalamine.

Exacerbation of diarrhoea and pain in patients treated with 5-aminosalicylic acid for ulcerative colitis.

So I don't understand why GI specialists always seem to be oblivious to this problem. Don't they ever bother to read case study reports before prescribing drugs?

Your symptoms (worse in the mornings and less of a problem later in the day) are very typical of most of us if/when our MC is active. The fact that Asacol prevents you from sleeping through the night tells me that you are reacting adversely to it, as per the case study articles cited above.

The Pepto treatment isn't workable for everyone (some of us have neurological side effects from the doses necessary to make it work), but for those who can tolerate it, it was about 85 % effective at bringing remission during official trials, and it typically brings remission within about 2 weeks. Please be aware though, as Brandy pointed out, the tinnitus issue can be serious, if you happen to be susceptible to it. Usually, stopping the treatment will resolve the tinnitus, but in some cases the damage can be permanent. It appears to be your best bet for controlling your symptoms during your backpacking trip, if you are unsuccessful at receiving a script renewal for Entocort or Uceris.

I hope that you can get your symptoms under control, so that you can enjoy the upcoming trip. Again, welcome aboard, and please feel free to ask anything.

Tex

[UkuleleLady]

Hi CG, welcome to our family.

A friend here, Fiona, had tinnitus and was in a living hell for months due to the pepto treatment. I would tread with caution as this can happen. She has recovered but it took time. Sorry the entocort gave you trouble. I was able to take it, and it helped as I tweaked diet over the course of the past year and 1/2.

Have you considered enterolab testing? I know it is expensive but can fine tune items like eggs, almonds(!), rice(!) and other seemingly benign foods that can present problems for those of us with numerous food allergies. Rice, eggs and almonds kept me from getting well in the beginning. Because you are a celiac who is already GF but who now finds she has MC, it could be pretty beneficial to weed out your most inflammatory foods.

I *know* you don't want to hear this, but, perhaps consider canceling your trip or finding a cabin nearby to stay in. Hiking 32 miles and camping is a tall order for someone in the throes of MC. Pushing it might be detrimental to your health and wellbeing.

Best of luck,
Nancy

[Marcia K]

Hi, CG. I have LC and I did the Pepto treatment. It worked for me with no side effects. My G.I. prescribed 6 tablets/day for 8 weeks but after a few weeks I cut it back to 4/day because I was having the opposite problem. I also cut out gluten and dairy immediately and after reading Tex' book I cut out many other foods. So far I have been good as long as I watch what I eat. I hope you are able to get things under control and are able to go on your trip.

Marcia

[lisaw]

Hi CG:

Hope you can improve enough to feel comfortable going on your trip. Maybe 6mg/day to start would be enough for you, with fewer side effects, if you can get an Rx.

The almond butter brand Brandy was referring to is Marantha. I also used to eat a lot of peanut butter, but switched to almond butter, as peanuts are related to soy and can be problematic. I also eat sunflower seed butter without issue.

I have been on Entocort for 4 months, started at 9mg, 6mg after about a month, and am on 3 mg now. For many people it works very quickly, but it took a while for me, but have improved a lot.

Lisa

[nerdhume]

I was on Uceris for 2 months and then stopped without tapering on the advice of my GI. It worked fine for me and I have been in remission since then. I have had problems with the ragweed season. That allergy seems to overload my system and I have to take allergy meds daily, otherwise I am ok and would recommend Uceris to anyone with good insurance (cost about $1600 per month).

[coffngrl]

Thank you all for your help! Tex, I have no idea why doctors can't be bothered to do any type of research whatsoever. I told her when I saw her first that NSAIDs were a problem for me. I've never been able to take ibuprofen without massive stomach pain. Duuuuh! SCIENCE IS GOOD.

Funny story - I called the doctor's nurse (the only way to speak to the doctor), and said the Asacol was giving me fits and suggested Uceris. She called in an Rx without any problem. I hope it has fewer side effects! Do you all take it with food or without? I know the coating is pH dependent, so I wonder if an empty stomach would help it get to the right place without dissolving too soon and being taken up in the bloodstream.

When I was on the Entocort I could pretty much eat what I wanted except dairy and have no D. But was that a good idea? If I avoid allergens like soy, nuts etc will it help my guts actually heal while on the steroids or not?

I want to be able to go off these when it's time without immediately going back to being miserable which, not ideally, will be just in time for the holidays.

Thanks y'all!

[tex]

When I was on the Entocort I could pretty much eat what I wanted except dairy and have no D. But was that a good idea? If I avoid allergens like soy, nuts etc will it help my guts actually heal while on the steroids or not?

Yes, definitely avoid the foods that cause you to react. Most members here view their time on budesonide as a symptom-free opportunity to get their diet organized and get the healing started. If we wait until we're weaning off the budesonide before we change our diet, we will virtually always relapse, because healing takes time (and corticosteroids don't actually heal the intestines, they just mask the symptoms). As long as we continue to eat the foods that cause us to react, the inflammation continues to be regenerated, and no significant healing can take place.

Well, the Uceris will probably get farther down the GI tract sooner if taken on an empty stomach, but the problem with Uceris is that it is designed to activate in the distal (lower) half of the colon. The reason it activates so late is because Uceris was designed for UC, where the inflammation begins at the extreme distal end of the colon (at the rectum), and progresses backward. With MC, the area that typically shows the most concentrated inflammation is the terminal ileum (near the cecum) and the right side colon (areas that are passed up by Uceris). Still, Uceris seems to help many MC patients, because with MC, the inflammation occurs in scattered random patches, and suppressing the inflammation in the lower half of the colon (together with the diet changes) may be enough to bring remission from symptoms in many cases.

The advantage of Uceris (over Entocort) is that none of the budesonide is absorbed into the bloodstream, so there should be minimal risk of adrenal damage and other side effects. (With Entocort, up to 19 % may be absorbed into the bloodstream, which can eventually cause adrenal suppression). This also allows Uceris to be discontinued abruptly (cold turkey), with no tapering of the dose, as is required with Entocort or any other corticosteroids.

You're most welcome,
Tex

[Gabes-Apg]

Hi there, welcome to the group.

No matter what med you are taking, healing will be limited (almost non existent) while ever you consume foods that are triggers, and/or have medications that are tigers, and/or have high amounts of stress in your life, or are in contact with environmental triggers.

A small number of people have reported very quick resolution to symptoms once ALL triggers are removed, this is about the 3-5 week period
For a large number it takes months.

Hope the uceris helps you. If it was me, I am not sure I would brave that type of trip with the issues you have been having. Be prepared that adrenalin used during the trip may lead to worse flaring when you return.

[coffngrl]

Thanks Tex, Gabes. So Tex, since you seem scientifically-inclined, what constitutes healing and what is merely alleviation of symptoms, at a physiological level? If I put cortisone cream on a rash, and the rash disappears, isn't the skin healed? How is that different from the guts?
Not trying to be contrary, just curious.

Of course I understand that a food sensitivity won't disappear when on the steroids, just like an allergy won't vanish just because you take some Claritin. So what exactly happens over time when you heal up and you are now able to eat foods that used to disagree with you?

And Gabes, I'm kind of an idiot when it comes to physical activity. I do stupid things like race bicycles, sign up for a 10k run when I've never run that far, so backpacking 32 miles is just another dumb thing that I'll do and survive, then feel good about it. If I survive, if not, well, I won't have to worry about MC anymore!

[tex]

If I put cortisone cream on a rash, and the rash disappears, isn't the skin healed?

No. Examination of biopsy samples under a microscope will show that the cellular damage is still present (though improved). Whether or not healing actually occurs will depend on whether the rash is diet-driven or due to some other agent. IOW, healing will depend on absence of continued or repeated exposure to the antigen that caused the rash in the first place. A lot of skin issues are due to food sensitivities.

How is that different from the guts?

It's not dramatically different. The primary differences between the epithelium of the skin and the epithelium of the intestines are the absence of a mucosal layer, and a different type of barrier layer (to control/prevent the transfer of materials across the barrier either into or out of the skin). The skin uses a layer of squamous cells whereas the intestines use a layer of vertically-oriented enterocytes) Otherwise the various layers are very similar.

With proper treatment, resolution of most clinical symptoms of MC usually occurs within a period of weeks to months (though some see success sooner, while others take much longer). Certain neurologically-based symptoms take longer to resolve (fatigue and brain fog, for example).

Healing refers to a restoration of the original cellular histology of the mucosa of the colon, as verified by the examination of biopsy samples under a microscope. IOW, the physical damage to individual cells must be absent for healing to have occurred. Kids heal quickly (a few months to a year. usually), but adults take much longer (3 to 5 years or more). The older we are, the longer it takes to heal. This is true for all IBDs, including celiac disease.

It's surely true for other AI diseases as well, except that most people never heal from AI diseases (except for a few celiacs who are actually strict enough with their diet) because their doctors never advise most AI patients to cut gluten and casein from their diet.

So what exactly happens over time when you heal up and you are now able to eat foods that used to disagree with you?

As the antibody count goes down, the production of proinflamatory mediators decreases, the T-cell count goes down (which decreases the inflammation), and the mucosa of the intestines slowly loses it's hypersensitivity. As it does, we are once again able to better tolerate once-aggravating foods such as fiber and difficult-to-digest foods. This process does not reclaim the ability to tolerate the foods that cause the production of antibodies, however. Once those genes are triggered, we will remain sensitive forever to foods that trigger the production of antibodies (and those genes are triggered when the genes that predispose to MC are triggered).

I don't know if you realize this or not, but you are very typical of most of the members of this discussion board. That doesn't mean that we are all athletic zealots (though many of us are) — what it means is that we are all (in one way or another) overachievers, risk-takers, and perfectionists. In our previous life we thrived on stress (or rather we thrived despite stress), but unfortunately stress is a primary prerequisite to the development of MC. Most of us achieve stable remission by recognizing that fact and shifting down a gear or 2. We shift back up again, after we are in long-term remission.

Best of luck with your adventure. We'll be waiting for your report that all went well.

Tex