Another MC Newbie

[Gayle]

I have been lurking and reading commentary here on the “Potty-People” chat since I found this site a few weeks ago. It’s now time to join the list, and thank all of you for taking the time to make your insightful comments. It truly does help to know that one is not alone in dealing with the vexing condition known as Collagenous Colitis.

I am a relative newbie to this condition. My first occasion to experience the “bathroom demands” of this poorly understood condition came suddenly – as in WHAM -- in late March of 2007.

I had been dealing with plantar fascitis for about 5 months previously, and then developed a fairly severe upper-resp infection in early March. Although not absolutely diagnosed by lab work, it eventually came to seem probable that the upper-resp infection, and the resultant months of intractable harsh coughing, was Whooping Cough. Consequently, between these 2 maladies, I had been taking NSAID’s, -- LOTS of NSAID’s -- for several months.

Because of this history, I am fairly convinced that in my case, the sudden appearance of symptoms of C-colitis most likely was the result of very heavy and prolonged use of NSAID’s. That’s a guess of course -- something that will never be known for certain.

From April through July that year I lugged along with my PCP trying to deal with this sudden, strange and life altering condition. There were the usual stool analysis which told us nothing, the usual and customary OTC meds for diarrhea plus anti-spasmodic meds, a couple rounds of the antibiotic Cipro --, all to no particular avail. The number of trips to the bathroom seemed to decrease, but nothing formed, or even close to a Norman, ever appeared.

Finally I decided to go back to the GI practice where I had been a patient earlier. The Doc there wanted repeat all stool analysis of course, -- and he did sent those specimines to a different lab, and then he did a Flex-Sig exam with biopsies. (BTW -- He choose to just do just the Flex-Sig because I had had a routine Colonoscopy just 3 years earlier.)

By now we are at the end of August, ---- and miraculously, my bathroom demands were lessening, I was improving. :-) Because I reported that my symptoms were improving, this GI Doc decided he would choose not to treat me at that time. “However, if those symptoms resume, come right back and we will start treatment.” Those biopsies “were suggestive of” some mild C-Colitis at that time, probably because I was, at the time, entering into spontaneous remission phase.

And --- Hallelujah! I was One HAPPY Camper!!

From that point through the following June things improved back to a very normal state of function. Then once again, on June 17, 2008 -- WHAM -- the bathroom demand scenario started all over again, just exactly the same as the previous year.

And again, this was One UNHAPPY Camper!!

So it was back to the GI Doc. This time I had to have a full Colonoscopy with biopsies done the full length of the colon. The diagnosis on this round, when I was in a full flare, was definite for C-Colitis, and on August 1, 2008 I was started on Entocort.

I’ve been particularly interested in reading the commentary’s regarding various people’s experiences with Entocort, as well as with Asacol. Entocort is a very pricey drug, as everyone here knows, and there are issues there that I am interested in learning more about in that regard also.

Enough about where I am coming from,

Cheers,
Gayle Crow

[barbaranoela]

and cheers back at ya Gayle


Yup at some point here and there we have all been UNHAPPY campers---some worse than others --seeking--reading and looking for answers!!!

I wasnt diagnosed with my first GI---so my issues were like many others--checking all bathrooms--etc- and my best buddy was very DEPENDABLE!!
He gave me all sorts of meds WITHOUT knowing what the heck was my problem--and I didnt get it either so stayed with him--
When I got so bad---as living on the THRONE--I was recommended to a GI in New York City~~~ and he took charge and got me to feeling human~~

Asacol didnt work for me--Pepto was a no-no--and sadly Entocort wasnt on my happy list either---had a very bad reaction to it--

I had to go the PREDNIZONE route for awhile and my salvation was COLAZAL---and I was maintained on that for a few years and now I can say--I am walking the wellness road~~~~
Didnt have to many allergies to food--just lactose for awhile--

I consider myself very fortunate compared to what many *in our family here* have gone thru and are still doing everything possible to get better--

Hang in---U will get more info from the others~~~

One day U WILL be a HAPPY CAMPER again


Barbara

[tex]

Hi Gayle,

Welcome to our internet family. You've had an interesting history with the disease. There's a very good chance that your hunch about the NSAID's is correct, since quite a few of us feel the same way.

It's a shame that your GI doc made you suffer for six weeks without treatment, while he was playing "doctor games", (doing another colonoscopy, and killing time, when he already knew that you had CC). Time often seems to mean nothing to GI docs, though, (unless, of course, they happen to be the ones with uncontrollable diarrhea).

Sorry to be nosy, but we're always anxious to learn about Entocort, also - so did the Entocort put you into remission? Are you still taking it? Did you ever try reducing the dose, or tapering it down and stopping it completely? Have you made any dietary changes other than to avoid lactose?

Again, welcome aboard, and I hope you can find the answers here, that you are seeking.

Tex (Wayne)

[jodibelle352]

WELCOME GAYLE!

I joined the Family of PP a year ago this month. June 21,2008 to be exact. LOL
At that particular time I was truely a mess! Continuous D 15-20 times a day, abdominal pain, severe depression, SEVERE weight loss and all alone with a disease I had NO CLUE and knew NOTHING about. To put things 'point blank' I was a train wreck after being derailed!

Constant nausea with some vomiting, the constant fear of needing a bathroom and having none available or hoping nobody was using mine, and the ultimate embarrassment of having an accident at the most unexpected time where it was devistating to say the least.
Everyone here is a FAMILY in every sense of the word. We share our fears, daily experiences, flares, medication changes etc. You are in the very best place to receive the support as well as information that you will need to cope with this disease.
I am on Entocort at the present time and doing very well. I do still have flares of the uncontrolable D at unexpected times. It's not daily and sometimes I can go for a few weeks but WHAM! when I least expect it there it is. I started out on 9mgs. daily and am at this time taking 6mgs. daily. I've tried several times to get down to 3mgs. daily but have been unsuccessful but am going to try again soon to decrease my dosage.
Things I have learned about having CC is it doesn't matter how many stool samples are taken they don't give the doctor's a dx's of CC no matter how many they make you give! You will sit and spin waiting for a dx's through a stool sample. IT AIN'T GOING TO HAPPEN! You need a colonoscopy to get a dx's through a biopsy.
Another thing I would like to share with you is that wether prescribed Entocort or Asocol BOTH are very expensive medications. That's why I'm going to try once again to lower my dosage by trying some different approaches that other family members on these boards have suggested. I have not yet done this as I'm still a little troubled about trying again and failing.
Gayle, I welcome you once again to our family and I know you will be successful in getting the answers you are looking for.
Love and God Bless:
Jodi

[Gayle]

Thank you all for the welcoming messages.

In response to querys about my experience with Entocort, -- and Asacol:

Yes, (PTL) --- I do achieve complete remission with Entocort.

My Entocort experience has been good. In my case there have not been any significant difficulties with the drug. However, as a historically dysfunctional sleeper, it does seem to me that Entocort intensifies sleep issues. Also, by around 5-6 weeks into therapy, D problems have become C problems, which I have to pay attention to. Wonder if others also get to this point with this drug, and if so, how they manage that?

My initial round of therapy with Entocort began last August for the duration of 8 weeks. The Physician said -- as he prescribed this med for me -- that some people will use this medication at the initial rate of 9mg/day for 8 weeks, and that will be the end their problem. He also said that there are other people who find they need to be on a lesser maintenance dose for a while…but let’s wait and see how things work for you. AND, he added, that with this quasi-steroid drug, it would not necessary to wean off the drug. It can be just discontinued at the end of 8 weeks. So --- At the end of 8 weeks, with my situation well under control, I was happy to discontinue the drug

Things went along just fine from the end of September into early November when again, ominous signs began to reappear. By the end of November I was back on Entocort at 9mg/day for another 8 weeks. After 8 weeks (which was the end January) I reduced the dose down to 3mg/day.

I then had a Clinic visit scheduled in early February with a different Gastroenterologist, who incidentally, frowned on the practice of abruptly discontinuing this drug when using it for this condition. I was to continue with the Entocort at 3mg/day for another month while attempting to move to Asacol for maintenance.

Whoops!!! After 2 weeks on Asacol I was again experiencing severe D even while I was maintaining on low dose Entocort. It would appear that I seem to be “one of the roughly 5% of people” that do not tolerate Asacol.

By mid-April D. was again running full force again. Restarted on the Entocort, again at 9mg/day. Instructions were to make sure I go at least 2 full weeks beyond a full remission of symptoms, and then reduce the dose to 6mg/day “for a while”, before reducing again to 3mg/day “for a while”. It seems there is no EXACT recipe for dealing with this condition.

So that is how things have gone with me and my Entocort. It was mentioned here by someone that it seemed to be approximately 5 weeks off of the Entocort was when she began to get into difficulty again. (Excuse my paraphrasing please.) That rang a bell, as my experience has been rather similar in that regard.

Consequently, I am feeling as though I am on an Entocort Merry-Go-Round --- trying to find the right ticket to end the ride --- hopefully with more permanence.

Cheers,
Gayle

[tex]

Gayle,

I vote for your second GI doc - he seems to be much more knowledgeable about MC and Entocort. Most people can "get away" with discontinuing Entocort abruptly, after 8 weeks, but that's kind of pushing the envelope, since we all tend to react somewhat differently to various meds, and somewhere along in that time frame, some people can reach a point at which their adrenals have become somewhat dependent on budesonide, and because of that, tapering the dose before discontinuing the drug, is a much safer policy.

I believe that the main point that most GI docs do not get, is the fact that MC cannot be cured, it can only be controlled. For some reason or other, they continue to expect an 8 week treatment to "cure" the disease, even though all they would have to do is to tally up their true success rate with their patients, to see that an 8-week treatment does not bring a lasting remission in the vast majority of cases, (contrary to their claims). They seem to be like Charlie Brown, trying to kick that football, (just before it's yanked out of the way) - they keep hoping that it will work as planned.

Concerning the "C" phase of MC, that is much more common than the medical community realizes. Many of us have the problem of alternating D and C, while reacting, and meds can also cause the shift, or amplify it. Either way, it is still a reaction, and a sign that the disease is still active. If you're taking Entocort when it happens, probably the most practical "solution" is to reduce the dose somewhat, to find your point of equilibrium, if one exists. Dairy causes C, for some people.

As far as adverse reactions to Asacol are concerned, based on our collective experience, I would say that the number should be somewhat higher than 5%.

To date, according to our collective experience, the most successful treatment seems to be a combination of diet, and Entocort. Most members find that 2 months of 9mg/day is inadequate for sustained remission, even when followed by a reduced dose. The members who have not had to back up and start over, usually take a full dose for 6 months to a year, and then slowly taper down, while paying attention to what their body tells them, (rather than what their GI doc tells them), as they slowly taper the dose. Many can then maintain on 3mg per day, or every other day, indefinitely. Stopping completely will only work if every food intolerance has been removed from the diet, and the gut has had sufficient time to heal, (often a year or more). Those with the most severe sensitivities, seem to require a combination, even for the long-run, (maintenance).

Asacol as a maintenance med has it's own issues, not the least of which is a risk of chronic pancreatitis. Most GI docs are unaware of this risk, but we have had more than one member who had the problem. As best we can tell, when diet control alone is not sufficient, Entocort seems to be the safest, most reliable maintenance med, and at minimal doses, seems to have the least risk of side effects. But, since we are all students of this disease, we continue to learn as we go, by comparing notes with each other.

Tex

[Gloria]

Hi Gayle,

I just posted a reply to Courtney's thread "Prednisone Trial/Entocort Questions" regarding my experiences with Entocort. It sounds like you've also read my thread "Weaning off Entocort." When I started that thread in October of 2007, I expected to be posting to it for just a few months, but alas, I'm still "weaning off Entocort."

Your experiences sound similar to mine, though I've probably eliminated many more foods from my diet in my quest for remission. I am a genetic double DQ1, which means I'm genetically disposed to having multiple food intolerances. There are a few other members on the board with this genetic makeup and we've all had a difficult time achieving remission.

I've found it helpful to maintain a food/elimination diary to determine which foods are causing me problems. It's quite possible that you are intolerant to other foods and once you eliminate them, you'll be able to remain in remission after going off Entocort.

As others have mentioned, you've come to the right place. Feel free to ask any questions. This is a great support group and we are here to help you.

Gloria