Weary of Entocort for Microscopic Colitis - HELP!!!

[FX35]

Not sure where to begin.
I've had stomach issues as far back as I can remember. Was diagnosed with Microscopic Colitis several years ago, which actually feels worse than Crohn's Disease at times. Have been taking Entocort when I'm desperate and it doesn't always work. There are nights that I don't sleep because I'm in the bathroom most of the time.
Have been taking an antidepressant (Nortriptylene) for about 6 to 8 years, mainly to help with headaches & one of the side effects is suppose to be constipation which obviously doesn't happen & am wondering if it's making the Colitis worse. My doctor isn't helping since I feel most of them don't know any "natural" ways to help & rely on meds for the answers. If there were any type of surgery to make this go away, I'd do it!!

 

[valleysangel92]

Hello, welcome to the forum

From your post I get the impression that you are only taking the entocort a day or a few days at a time when your symptoms are severe, is this correct? If so then that's why it's not working. Entocort is a steroid and needs to be taken exactly as your doctors have advised, it doesn't work if you only take one or two doses.

Also, it depends where your inflammation is as entocort is designed to work in a specific area and it might be that you have inflammation in other areas as well which the entocort isn't helping. As far as steroids go, it's actually a milder choice and has far less side effects and risks than the more usual choice of prednisolone.

I know the medications seem scary but unfortunately colitis is a condition that can be difficult to treat. As for natural things you can try diet changes and supplements, but these are unlikely to be enough on their own and should be a part of a comprehensive treatment plan. What is it that makes you so against having medications?

 

[FX35]

Thank you very much for your response. (I just discovered this forum/site today). Yes, you are correct. I only take the Entocort when I have severe symptoms. I tried taking it awhile ago for two weeks straight & the symptoms returned.

I am not a fan of medications because they treat the symptoms & not the cause & have numerous side effects. (When we're desperate, I guess that is what we do in the interim). I've been taking the Entocort for 4 days now & no relief & have been taking this drug off & on since approximately 2007 or 2008. I find it unbelievable in this day & age that no doctor seems to know the cause & there is no "natural" remedy. Doctors can be wonderful but they are "in bed" with the drug companies.

You may be very correct with your statement that inflammation is in another area. I have a message into my doctor.

 

[valleysangel92]

That could be why you aren't feeling any benefits. Usually it's given for at least a few weeks at a time. It works by lowering the inflammation and if you come off it too soon or too fast then yes the symptoms will return because the inflammation will come back.. It's really important to take steroids as directed, coming off them too soon can actually be dangerous, the dose needs to be slowly lowered.

This is why we need other medications to work as maintenance medications. These medications do work on the cause of the inflammation. For example, I'm taking an immunosuppressant called 6 - mp (mercatopurine) which works by dampening the immune system and therefore preventing the damage it causes. Of course this doesn't work for everyone, there is a lot of trial and error needed but if you can find the medication best suited to you then the cause can be controlled and you can achieve months or years of remission. I know there are long lists of side effects, but these are only a potential not a definite and the risk of untreated colitis is just as bad if not worse.

I don't think that the doctors are ' in bed ' with drug companies. At least not where I am. In the UK, it would not make sense for this to happen. The nhs cannot afford it.

I know you say that you would willingly have surgery if it would get rid of it, but surgery is a huge thing and has risks of its own. If colitis is not treated then there can come a point where surgery is the only option, and that's not a nice place to be.

I know our conditions are different, I have crohns, but I have already had surgery once because I had scarring that was causing blockages. Although it was not a terrible experience because it was not an emergency, it is still something I would rather avoid repeating for as long as I can. Remember that once you have part of your bowel removed it can't be replaced.

I think you should have an open and honest discussion with your doctor, tell them your concerns and have them explain each of your options to allow you to make an informed choice

 

[FX35]

I see. I will take your advice and also speak with further with my doctor. Since you are in the UK I would imagine that the health system is quite different there but here doctors and drug companies work in tandem. There are exceptions of course.I'm already had several surgeries in my lifetime so if I can avoid that course of action I will.thank you again for your feedback and I will keep you posted!

 

[valleysangel92]

One other point, remember that if you are not confident in the care your current doctor is giving you or if you feel that they cannot justify the treatment they are giving you then you always have the right to seek a second opinion

 

[FX35]

Yes. Thank you & sorry for the "off wording" in my prior message as I was typing & utilizing voice text from my phone.
I appreciate you taking the time to respond.

 

[FX35]

By the way, I've had periods of almost a month with no symptoms while not taking the Entocort. Strange.

 

[Farmwife]

Welcome to the forum.
My girl also has microscopic colitis. Right now the doc is leaning towards Crohn's.
You said in your first post that your microscopic colitis is worse than Crohn's, have you been diagnose with Crohn's? Just wondering how you know its worse?

I hope you feel better soon.
I also hate meds for the most part but I'm thankful when they work and my little girl gets her life back.

 

[FX35]

Wow. I'm so sorry to hear that a young child has to deal with this!
I guess I was comparing it to Crohn's because I know someone who has it & the description she gave was about the same & she was taking the same medication (Entocort) along with some others. I know that Crohn's is an autoimmune disease & I don't believe Colitis is but, it might as well be for all of the misery it causes.

 

[Farmwife]

That's true about different types of colitis.
Did you have a colonoscopy done?
Did they say what the colitis is caused from?

 

[FX35]

Yes. I do have regular Colonoscopy's. Have been diagnosed (twice) with Microscopic Colitis along with Mild Gastritis. Many medications that were prescribed for me had negative side effects so I have relied on Entocort which works sometimes as I don't like to take daily & when I have tried to do so, the symptoms return when I stop. It's not something I choose to take everyday for the rest of my life as it is a sterioid which may be better than prednisone but, neverthless. I am not a fan of too many meds.

As I mentioned in a previous post, it is absolutely amazing how many people suffer with these diseases and no one seems to have answers as to causes!