right buttox soreness??

Have you been taking entocort for 3 years? You need to stop and find a different medication. This is a steroid and long term use is really not wise.

I get "cold sores" sometimes and they always coincide with an immune system blip - like a cold, or my period. My stomach reacts badly to them, too. Sorry.

Your back soreness could be a lot of things. Muscular? Joint pain due to gut inflammation?

You should have been on a mesalamine a long time ago, but perhaps you are intolerant of that (Pentasa is usually give to those with ileitis).

6MP would be preferable to staying on Entocort. You should have a blood test first called tmpt to see if you will tolerate the 6MP ok and then after that have ongoing blood work. My tmpt test came out good, but I still had elevated liver enzymes and had to stop the 6MP. Sorry you aren't feeling well

Bmorgil,Where did you get the statistic that "over 60% of people with Crohn's are on a strict Vicoden program?" I find that ridiculously hard to believe! I don't doubt that it works for you, but I don't believe that is a typical way to manage Crohn's disease and it would do nothing to prevent spread or containment of the disease.

thank you everyone.  my gi and I have been discussing endocort for a long time.  he was going to switch me to 6mp 4 months ago but I was doing well so he changed his mind.  we both know it's time to look at something else.

i'm not looking forward to finding the next meds....I don't do well changing drugs??

stay tuned!

Well actually it is 57.7%. It was a long time ago but, I'll search around and find it again for you. You may find it ridicules but my Doctor and I don't need any more proof. It does NOT treat Chron's. It masks the symptoms. It allows you to do things you could never do without too much worry. If I can't find it that would be a shame it is an eye opener. I was diagnosed in 2004. After 8 surgeries it has been helping me function ever since. Definitely does not deserve "Ridicules". I am just going to do what I did the first time as you should also do. Google Vicodin + Chron's. I believe it was the Mayo clinic. There are many references by many people on many forums that will say the same thing. It blocks the symptoms of Chron's. Opiates are dissolved directly in the digestive system slowing it down and stopping the cramping. This is and always has been a well-known fact. Why do you think when you’re in the emergency room on the floor you get put on some form of opiate drip? When you google it you will see the predominate concern is addiction. Don't even try it if you have an addictive tendency. You work closely with your Doctor and count your pills every day. You only get your scripts from the Doc. A little aggressive on your response don’t you think. As with any internet story...... check the data. "Silly suggestion?" yes yours is and I hope those who are looking for help pass right by what you wrote.

Post Edited (bmorgil) : 1/27/2014 9:35:06 PM (GMT-7)

 

You are a Veteran member and this is what you have to say? Let's talk crazy. Relieving the pain and stopping the 10 B movements a day without curing the root cause is the definition of masking the symptoms. I would suggest you check the HW survey that shows 57% of the surveyed members, take some type of Opiates to control Chron's. Mayo Clinic put me on them! they use it for most of their patients. Some are given it for total Chron’s symptom management and it works. Over 2 times the members surveyed use it. That would be because it’s affective. Crazy? Yes you are. And leaping before you look. This survey might help you remember what you must have forgotten. And yes, I most definitely condone the use of Opiates for Chron’s relief. There is no cure remember? No cure, I'll take mask the symptoms any day and have for 10 years. 3 a day max. There is no high especially after a few weeks. Vicodin is very easy to use unless you’re an idiot who eats them to get high. I have gone weeks without taking them and there is no physical addiction. You should know that. Shame on you for posting that one of the best ways to deal with it is crazy. You dash the hopes of those who try. Yes it is an Opiate and a mild one that the Doctor can phone in for you. If you have any will power and smarts at all you won't feel a need to take it when you don't need it.

 

https://www.healingwell.com/community/default.aspx?f=17&m=2219522

Post Edited (bmorgil) : 1/27/2014 9:31:03 PM (GMT-7)

NancyP.

I see you posted this question back in November. Hopefully by now your doctor & you have found a cause for the soreness & been able to treat it.

When you mention the tail bone pain, I feel I have to share my experience, but I don't want to scare you. I had pain that started in my tail bone back in Nov of 2007. The GI at the time said it wasn't related to my Crohns, & to seek treatment for it from my primary. I did for a year, & the pain worsened down there with no resolve. After about a year, it was found that I had a fistula that was tracking toward my right bum. Because of the delay in finding it, I have been on a whirlwind & my life has been turned upside down for the past 6 years. I ended up with an ostomy & numerous surgeries.

I can't help but think if the doctors had found the fistula sooner, it could have been a much simpler fix. I'm still dealing with this fistula now.

If you haven't found a reason for the pain down there yet, please discuss the possibility of a fistula with the GI. Like I said, I don't want to scare you, but those were the symptoms I had, & unfortunately the right diagnosis was delayed too long.

Hope it isn't a fistula in your case. Prayers for you.

LakelandMan (diagnosed @ age 16. 31 y/o now).

NancyP, as someone else mentioned that could be a fistula in the making. In 2004 my first fistula almost killed me. Not knowing what it was on a Friday I was finally down after 3 days of pain in my lower back, tailbone and especially my left buttock deep inside. By Monday I was in the ER prepping for surgery. My fever climbed to 103 and my entire area was swollen in the shape of a horseshoe. Appropriately named it was a "Horseshoe Abscess" it took a few days but it found a way to hook up with the Fistula. Holding back the "D" forced the matter through the fistula and into a new abscess deep in my buttock. After 8 surgeries the pain in the left never went away. Cat scans showed the fistula and the abbesses were not present. Further testing proved permanent nerve damage. The damage probably occurred from multiple fistula operations. It got to the point where it would tear open every 3 months or sooner. I could feel it ripping open during BM's. It is important to keep the fistulas under control. They are what cause the most dangerous symptoms of this disease. They lead to several different infections. Don't hesitate to tell your Doc everything. You should ask about the possibility of internal abscess and or Fistulas. Usually they show up on enhanced cat scans. You must let your Doc know. Those symptoms you are having are common in CD when many surgeries, abscesses or fistulas occur. Good luck Nancy. Don't sit on that side if you can.