Newly Diagnosed and Happy to Find This Board!

[ErinD]

Hi!

I was diagnosed with MC as of 1/8/08. My story is a little long but thought i would share.

about 15 years ago i was diagnosed with IBS-D. I only had problems with it if i ate certain foods, so avoiding them kept me feeling healthy. If i did eat a problem food, i would have diarrhea quite soon after for about an hour and then be done with it.

This past july i became ill with Nausea, severe diarrhea and abdominal pain. After two weeks of this i went to my doctor and went through the usual battery of tests including bloodwork, X-Rays, Abdominal CT Scan, Ultrasounds with nothing found. After 2 months of this and 10lbs lighter, she finally sent me to a GI doc.

The GI doc did an upper endo/colonscopy and after the procedure told me nothing was found (no celiac, no uc, no crohns) and it was just a severe case of IBS. She put me on Bentyl, Librax and Prevacid (for nausea) and told me to come back in two weeks for my follow up. The only help i found was the prevacid for the nausea but all other symptoms were the same. At the same time i also started faithfully following the IBS Diet. I went back for my 2 week follow up and she asked how i was doing, when i told her really no different she said it was not IBS but Microscopic Colitis that was found on my colonoscopy biopsies and she put me on Asacol for a month and told me to stay on the Prevacid. I did feel somewhat better but not 100%. When i went back to my month follow up and told her that she said, 'well i guess its not MC as the Asacol would have made you better, so its just IBS and go back on the bentyl'. I was surprised since the Asacol had made it somewhat better but felt she was the doctor and knew, so i stopped and went back on Bentyl. All symptoms came back and i felt horrible.

At this point, i decided to get a second opinion and found the top GI doc in NH at Dartmouth Hitchcock. He met with me and agreed he did not think it was the IBS and was concerned it was Crohns in the small intestines so he ordered the Pillcam and put me back on Asacol. (again i found some relief being back on it). I had the pillcam and no Crohns found. He again started with the IBS route and told me to go off the asacol and try Levsin for 10 days and call him back. I did and again, felt horrible. By now, it has been 7 months of these symptoms and i have lost 20lbs (i was small to begin with and really didn't need to lose that!). I called him back and told him and he wanted to do another colonoscopy to do more biopsies for the MC. He felt it was too soon to do another one (I just had it done in Oct) so he reconsidered his options and decided he wanted to just treat me for the MC that the prior GI found before and he put me on Entocort to see if it would help. So far it has made a big difference. The number of times has cut down dramatically, they are somewhat 'solid' and my abdominal pain and nausea are much better. I have to call him in 3 weeks to let him know how i am doing and he will go from there.

Now for my questions! (if your still with me here )

1. How long does it take for the entocort to really 'kick in'? (granted i have only been on it 3 days but i am seeing some improvement already)
2. Any bad side effects from it? I am really afraid of some of them, and if i do get them, do they go away when i stop taking it?
3. What do i do about diet? I have stayed on the IBS Diet as it says it's also good for colitis and crohns, however i am not sure if i have really seen any benefit from it...
4. I am debating enterolab testing, but wondering if i should just try the gluten free diet regardless? My blood work and endoscopy biopsies were negative for Celiac but still wondering if gluten could be affecting me.

Thanks for listening and i look forward to posting more as i learn more about this disease!

[barbaranoela]

Hi Erin------how similar is your story to mine and no doubt to many of the others here--

When U post U can write a book and we will read it---

Anyway ---to make it short----I went thru a GI who did nothing for me---only said I had MCC---and he really didnt knowe what to do!!!
Spent many years--foolishy, with him---and like U lost weight---small framed also--(U can read everybodies stories)
Finally I went to NYC---and there I got results---and was treated---yes I have MC--
1. pepto --cant take--bismuth allergy
2.New Gi aggressively had to treat me---with PREDNISONE and ASACOL(this didnt work for me) so I then started Colazal--and that helped me--
I had a few food triggers and ingrediants in different items over the counter meds.---also was maintained on Colazal for about 3 years---
3. Sadly Entocort made me sick---
4. many here have had the entero-lab testing---

Im glad U found us----because U will be getting some Xpert posting on the questions that U presented---
There are megga informed peoples here that will give U ADVICE and answer anything U ask--
so grab a cuppa and keep your eyes peeled for all the replies to start poppin in--

There is hope----

Barbara MCC

[JJ]

Hi Erin...you came to right place for support and info. I have suffered with CC for several years. My doc tried many things, Pepto, Asacol (I am alergic to it) and finally Entocort. I have had good luck with it and feel great....but....everyone is different I decided to not go GF, but have not ruled it out in the future.

Good luck with finding the right "thing" for you...many have gone GF and it has helped....take care...JJ (Jill)

[MaggieRedwings]

Hi & Welcome Erin,

Well you have come to the right place and will be among friends on this obnoxious disease. I have been here for 8 years in May - Polly & Barb correct me if it is 7 - and have done the route of pepto, Asacol, Lomotil, and a couple of others I actually forget with no relief in that time. I went on Entocort a while ago - I think in Mid July - and have wonderful success with it. I am now down to 3 mg every 4 days and doc would like me off entirely but he knows me well and works with my decisions. Important to have the right doc - regardless of what condition you have. I have had no side effects that I can see from the Entocort.

I also observe a total GF Diet and in my sign off you will see the intolerances. Many of us are MI.

Please sit down and as Barbara says grab a cuppa, toss off the shoes and learn as much as you can here.

Welcome again and visit often.

Maggie

[tex]

Hi Erin,

Welcome to the board. You've already received some great responses, so I'll just add my 2 cents worth.

Based on the experiences of many members, Entocort is probably the most effective, safe medication that can be used for MC. It seems to have very few side effects for most, (not all, of course), patients, and probably about 70 to 80 percent of patients who use it are able to find relief. And yes, if it causes any side effects, they will normally go away when you stop taking it. Some people see a big improvement in a day or so, while others may take months, so you seem to be having optimum results.

That said, I've never taken Entocort, or any other similar med, because I wasn't even aware of it back when I was reacting, and I settled on the diet, and have stuck with it. We are all different in our response to meds, diets, or whatever, because there are many causes for MC, (it is not a neatly-defined, or "well-behaved" disease).

There is no cure, (though some people go into spontaneous remission, and remain symptom free, without the need for treatment of any kind), so most of us have to maintain some type of treatment, (either diet, or a medication, or a combiniation), for the rest of our lives. Once our gut heals, as long as we maintain our treatment, we remain symptom free. Those who go the medications route, are usually able to eventually cut the dosage rate way down to a "maintenance" level, which minimizes the risk of any adverse side effects.

The biggest problem with the IBS diet is that it is normally a high fiber diet, and fiber and MC do not mix very well at all. Most of us following a diet have listed our food intolerances either below our avatars, or in the signature block of our posts. The most common food intolerance of course, is gluten, (and there is speculation that we are possibly latent celiacs), followed by dairy products. I think I read somewhere on Dr. Fine's site that his research showed that something like 85% of people with MC, are gluten sensitive, if my memory is not playing tricks on me. The most difficult cases are multiply intolerant, (MI), and many MIs are also intolerant to soy, corn, and even grains in general. A few are intolerant to eggs and/or other food items.

While some of us are casein intolerant, (casein is the primary protein in milk), most of us are also lactose intolerant, until our gut heals, simply because the inflammation in our small intestine prevents the normal production of certain enzymes, and lactase is the first enzyme to go when this happens. While the lactose intolerance is usually temporary, the casein intolerance is usually permanent, so that puts all dairy products off limits for those of us who are casein intolerant, if we are trying to control our symptoms by diet alone.

As Barbara pointed out, many/most of us have had "mixed" results from being treated by most GI docs. Most of them just don't understand MC. They consider it to be "just a little diarrhea", and place it in the same class as IBS. It is not, of course, in the same category as IBS - it is an inflammatory bowel disease, (IBD), quite similar to Crohn's and UC. It is not as severe as Crohn's or UC, of course, in the sense that it does not penetrate as deeply into the epithelial layer of the intestine as they do, and therefore does not cause any bleeding. The inflammation is just as real, however.

Everyone here learns from the experiences of the others, and makes her or his own decisions about which path they want to follow to get their lives back on track. It can be done by diet, or meds, or a combination of the two, depending on what you are most comfortable with, but we learn by trial and error what works best for us, as we fine tune our individual treatment programs.

The Enterolab tests are very reliable, and Dr. Fine, (the founder of Enterolab), also has MC, which is presumably why he has done so much research on the subject. Many insurance companies will not pay for those stool tests, so if money is tight, even Dr. Fine himself will tell you that you can do your own testing, without having to pay for any tests, by simply cutting all potential food intolerances out of your diet, and then, after the D stops, or at least diminishes, try adding those foods back into your diet, one at a time, to see what effect they have, if any. Jean has developed a testing procedure called the elimination diet, and she also has a wealth of other diet information that you can read in this forum:

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

Please don't hesitate to ask anything that comes to mind, as we've all been there before, and no one in the world really understands this disease, unless they actually have it.

Again, welcome aboard, and please don't hesitate to post about your progress, (or lack of progress), as that information is very valuable to others who will read these forums in the future. Plus, the rest of us all get a lift to our spirits, when we see someone making progress in this fight against MC, and that makes us smile.

Tex

[starfire]

Erin,

So sorry your needed to find us though.

You have really been round and round with the Docs haven't you.

I would gladly take Entocort again if it were needed. I took that and Asacol at the same time, then weaned off the Entocort. The Asacol controls the symptoms alone now.

Hope you find help and encouragement here.

Shirley

[kate_ce1995]

Docs can be totally useless in this. Mine told me the biopsies that showed MC didn't mean anything. I found this group and self healed myself by eliminating ibuprofen as my pain reliever of choice. I have since gone gluten free and found that relieved many muscle aches that I thought was aging (I was only 29 when the MC cropped up and the muscle aches had been getting worse for several years. Before I got really truely off gluten (it took me about 3 years before I finally committed myself to the diet about a year and a half ago...i.e., I'd be gf most of the time and then cheat about 1x a week and have a donut or pizza or whatever) it didn't seem to trigger D, but now it does.

You've found an incredible group of people. All of us have found different roads, but through the collective experiences and support here, most have found a path for them here.

Where abouts in NH are you? I'm in Vermont now (was in MA when I was diagnosed, and didn't have a good doc to recommend anyway ).

Katy

[Pat]

ErinD,

I never would have stuck to the GF diet if I had not done the Enterolab testing. I have not had solid BM's yet but have noticed the really foul smell is gone. I too had the IBS-D DX over 8 years ago. Then a year ago a new doctor DX'd me with MC. I tried the Entocort for 6 weeks with no resolution of symptoms and no noticeable side effects. I tried other meds but no help. I finally was tested for lactose intolerance and fructose intolerance. Neg on the lactose but pos on the fructose. After going FF I noticed no more gas, gurgling, bloating and a huge reduction in muscle aches. I was really thankful to get rid of those symptoms. I then had the Enterolab testing and was found to have gluten,casein, and soy intolerance. So now I eat GF, DF, SF, and FF. The FF is the hardest. I've tried eating corn free and rice free but that didn't help either. And I would lose more weight. As long as I stay DF I have no reflux. I am still working with this new doctor (the second one after the one that made the DX of MC) I believe that when I go to my next appt Jan 25 that he will put me on Prednisone for 3 months and then find an appropriate med to put me on indefinitely. I am also working with a nutritionist. She says this is a life long thing and I just have to find what works for me. I also have lost weight that I didn't have to lose. I just pray that something works soon. Good Luck!

Pat

PS. No question is too silly. This group will talk about anything!!!! They give me hope!!!

[ErinD]

Thank you to everyone who has replied to my first post. I have been reading this board and have found very informative information on this disease.

I did end up going ahead and ordering the test kit from Enterolab so i should hopefully be getting that soon. I will be curious to see what (if any) intolerences i may have. In the meantime i think i will stop following the IBS diet since it has done nothing for me. I didn't realize the high fiber was actually bad for MC, especially when all the other doctors prior kept pushing fiber on me and telling me i must not be taking enough since it was making things worse!!!

I am located in Southern NH and found a great doctor at Dartmouth Hitchcock Medical center in Lebanon, NH. I am glad i kept searching. I knew what my IBS symptoms would be and this certainly wasn't anything like it. Frustrating that there is still not much known about this and how quick doctors are to dismiss it as IBS.

I will definitely keep reading and posting as this board seems awesome.

Thank you again!

-Erin

[Polly]

Hi Erin and

So glad you found our little family. I don't have much to add, since you have already received lots of great advice.

I think you are very wise to order Dr. Fine's tests. You will get a wealth of information and know exactly what foods you may need to avoid. I am one who had negative blood tests for celiac disease but positive stool tests for gluten sensitivity with Dr. Fine......I am extremely sensitive to gluten. Others here have found the same.

I'll bet that you will probably be sensitive to gluten. Hopefully, that will be the only one, but if you do have other sensitivities, do not despair. (I am the Queen of Sensitivities here!). There is a lot of advice and support here to learn how to eat well despite sensitivities.

I agree that Entocort is relatively safe, even though it is a steroid. I think I read that 90% of it stays in the gut and does not get out into the body where it could cause all of the problems that prednisone does (like cataracts, osteoporosis, weight gain, etc.). Glad to hear you are having some success.

Love,

Polly

[Peggy]

(and you only get that status for a few days LOL)

Glad to have you. You'll get lots of advice from the experienced here, don't be afraid to ask anything!

Peggy