The Entocort is working well

[Joefnh]

It has been almost 4 weeks and I can say that I now feel better than I have in over at least the last 10 years. While the D is a symptom that began last November, I have had the joint pain, muscle pain, fatigue ( I would go to bed 1 hour after getting home) and mental 'fog' since 1997. Since taking the Entocort all of the symptoms have 100 % subsided.

Has anyone else experienced any of the non-GI symptoms?

--Joe

[grannyh]

I became exhausted when collagenous colitis hit.. heck who can sleep when you are running to the john 24/7! I don't know that entocort has helped with any other aspect of my life.. but the last five years have sure been better than the three I spent with steps of a toilet:)

Glad to hear you are doing so well.. just still watch what you eat.. you don't want to press your luck to early:)
grannyh

[Joefnh]

That's good advice Grannyh. Its easy to overdo it when you are feeling well.

I hope I can get back to 4x4 off-roading and camping this summer. It has been awhile


I will have to say based on a lot of input from this site, I will be starting a GF diet soon. From what I have read the Entocort can mask the symptoms of a gluten sensitivity. I should start a GF diet before tapering off of the Entocort in another month.

Thanks again

--Joe

[Gabes-Apg]

Joe
fantastic news!

for 10 years or more with IBS phasing into MC - lethargy was my biggest issue.

in ibs days if i was overtired i would get constipated and the digestion would not behave unless i had good quality rest.
now in my mc days, if i am overtired i notice the texture of the BM's get softer and they occur more frequently, and i get the aches and pains especially of a night. Good rest and minimal stress and it is all good.

it is definately a whole of body experience (and not in a good way)

[Joefnh]

You are right Gabes this disease is a whole body experience. I do not think the GI doctors fully understand this.

I hope to be well enough this summer to take up some long overdo outdoor activities.

Thanks again Gabes

--Joe

[grannyh]

I didn't realize you were planning to stop taking entocort. You do realize the diet route can take months up to a year to work. In the meantime, you may also find that you have to eliminate other things... ie.. dairy, soy, etc.

There is no fast way to a new life without diapers.. be patient no matter which route you take.
grannyh

[Joefnh]

Grannyh it was my GI doctor who wants me to taper off of the Entocort after 2 months. I did not realize that the diet would take that long.

You bring up a good point though on the time-frame to take this medication. I have my follow-up with my GI on the 23rd of July and I will plan on asking him what his plan is if the taper off routine causes the symptoms to return.


I do plan on starting the GF diet next week. I have be dairy free for at least 8 years

--Joe

[harvest_table]

This is great news Joe! I can feel your excitement and understand it.

Entocort played a big part in my recovery process as well and I also started a GF diet at the same time. I took the medication for about 6 months.

For years, prior to a CC DX I too experienced extreme random muscle and joint pain, exhaustion, sleepless nights...these appear to be rather common symptoms that often pre-ceed and/or accompany GI disorders such as MC.

So glad your feeling better..

Joanna

[tex]

Joe,

Most GI docs will prescribe a different drug, if Entocort doesn't "cure" MC. It just doesn't seem to occur to them that 8 weeks of Entocort EC is not sufficient to "cure" the disease. After all, the label directions clearly say to use it for 8 weeks. Some GI docs, though, will prescribe it for longer periods, if the first regimen results in a relapse, after the drug is stopped. If Entocort works for you, then you will find no other drug that works better, so if your GI doc refuses to prescribe it for extended use, then do what most members in that situation do - ask your PCP for a prescription to Entocort. Once a patient has been taking it, on the advice of a GI doc, most PCPs won't hesitate to prescribe it for one of their patients, if they ask.

Since you are getting such good control with Entocort, it's not impossible that the GF diet might become effective much faster than usual. Who knows? You might be luckier than most of us.

I recall that you mentioned in an earlier post that you might ask your GI doc about the GF diet, at our next appointment. Unless he is very, very open-minded, please don't be surprised if he ridicules the very suggestion that something in your diet might trigger MC symptoms, and argues that the GF diet would be a waste of time for someone who doesn't have celiac sprue. If he doesn't, then he is way above average.

Tex

[Joefnh]

Tex that's great advice. Believe it or not my GI doc did bring up the possibility of a gluten free diet at our appointment. Not immediately but he is considering doing another upper GI endscope with biopsies to look for signs of gluten sensitivity. Not sure how that would work, as my blood tests in February did not show signs for celiac disease. Can they see signs of gluten sensitivity in the biopsies?

Hopefully the endocort with a GF diet will allow me to reduce or eliminate the meds soon, but I will not count on it.

Tex another question, will the entocort reduce the thickness of the collagen that is seen in CC?

Thanks

--Joe

[tex]

Can they see signs of gluten sensitivity in the biopsies?

Yes, if you have villus attrophy, but if your blood tests were negative, then you probably won't have villus atrophy, either, so when your doc sees that, he will almost surely nix the GF diet idea. He still thinks that you might have celiac disease, and that was probably his sole reason for mentioning the diet.

Tex another question, will the entocort reduce the thickness of the collagen that is seen in CC?

Now that's a good question, and one that I don't believe that I have ever seen specifically addressed, anywhere in the literature. Theoretically, it shouldn't, since it only has anti-inflammatory properties, (IOW, it somehow induces the immune system to reduce it's production of lymphocytes). However, in the real world, IF Entocort EC can bring remission, then it will have to normalize cellular histology, in the colon, which implies that in the long run, it will have to normalize collagen bands, in the subepithelia, also. No one knows how budesonide works, so I don't have the foggiest idea how it might go about reducing the thickness of collagen bands, but it will indeed have to do that, if it is to bring remission. IOW, normalization of histology is a technical requirement of the state known as remission, by definition.

Tex

[Olivia-Micro-Colitis]

Yeah! Go Joe!

[grannyh]

Since my colitis attacked after taking visicol as colonoscopy prep.. I have never had another colonoscopy so there is no telling what my colon looks. I expressed the opinion that I would never take another colon prep of any kind after my experience.. my GI doc laughed and said ... in your shoes I don't disagree with you! He has never suggested that I reconsider.. He said since entocort has worked for 5 years.. if it ain't broke..don't fix it:)
grannyh

[Helovesme]

This is my 4th week on Entocort. I am a new person. I have also been gf for the same time. I have had two bad days, one because of beans and once was an accidental gluten. I KNOW not eating gluten is helping, because the day I ate it, I was sick for two days! I am not having D all day. I had horrible excema on the bottoms of my feet, today it is 100% healed. I use to itch all over, that is gont too! I was tired all the time, I now have energy again. I just had blood tests to see how my thyroid and B12, CA, etc. are doing.

Blessings,

Bev

[JLH]

That's so great to hear, Bev.