I am new here and would appreciate some feedback and/or advice. I've had Crohns for 27 years. It was in the ileum only and, after surgery 22 years ago when six inches were removed, I've been able to feel well much of the time on Apriso, probiotics, and, during flare ups, Xifaxin and Budesonide. I had a flare up about six weeks ago and am weaning off Budesonide. I'm down to one pill a day (3mg) and was feeling great so I went down on the Xifaxin (from two pills a day to one -- 1100 to 550 mg) and decreased my probiotics last night. Today I felt much worse so I called the doctor's office. The physician's asst who returned my call said that the colonoscopy I had several weeks ago (while on 9mg of Budesonide) was clean as were all the biopsies so my current symptoms (loss of appetite and feeling sluggish mainly) were due to IBS rather than Crohns. She was insistent about this and, although I would love to think that my Crohns is in remission, I can't help but wonder whether a little inflammation might be popping back up as I decrease the meds. The doctor said I'm not a candidate for any of the immunomodulating drugs or biologics because things are quite mild and there's no current inflammation. Nonetheless, I'm not feeling myself -- if it really is just IBS, I would continue with tapering off the medicine and take metamucil. I would greatly appreciate your thoughts or any similar experiences any of you have had. Thank you.
Trying to get back into remission
- Thread starter lilygrace
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Hi and welcome. Your intuition could be right. the dr could be right too. I would encourage you to ask for a fecal calprotectine stool test if symptoms persist or increase. This is a new tool to monitor IBD and it said to be quite sensitive. good luck.
Thank you for your responses. I did have the calprotectin test and they told me the results were the same as for someone who did not have Crohns. I'm not sure how accurate this test is because it's the first time I've had it (my last flare up was three and a half years ago and they didn't do it then). My blood tests were also all normal. For the past six or seven weeks, I have been living very carefully because I'm afraid of taking a turn for the worse -- eating very blandly, not exercising much, not even making a lot of social plans because I'm worried that I'll be under the weather. Do you think it's reasonable to take the test results and assurances from the doctor as 'good enough' reassurance that I'm in, or close to, remission and start living my life again -- eating a more diverse diet, taking my morning walk, making plans? Worse comes to worse, I have a day when I feel lousy (my main symptom is loss of appetite, feeling sluggish, a little joint pain, depression/anxiety and lower right quadrant tenderness) which seems to usually be followed by a better one.
I had been secretly hoping that the doctor might recommend something like 6mp. My hope was that it would keep my in remission for really long stretches of time (my flare ups are usually every two to three years currently), but they seem adamant that this isn't the time for me to take these meds. I very much appreciate your support and feedback!
I had been secretly hoping that the doctor might recommend something like 6mp. My hope was that it would keep my in remission for really long stretches of time (my flare ups are usually every two to three years currently), but they seem adamant that this isn't the time for me to take these meds. I very much appreciate your support and feedback!
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You can always get a second opinion
It doesn't mean you don't trust your current Gi or even want to change
Just means you want a fresh set of eyes
I would be concerned that they did a scope while on steroids
That muddies the waters so you can't clearly know what is the cause
Also would answer your question of constant inflammation cycle and possible damage from scar tissue building
Good luck
It doesn't mean you don't trust your current Gi or even want to change
Just means you want a fresh set of eyes
I would be concerned that they did a scope while on steroids
That muddies the waters so you can't clearly know what is the cause
Also would answer your question of constant inflammation cycle and possible damage from scar tissue building
Good luck
Thank you for your thoughts! Because I have had regular colonoscopies since my surgery 22 years ago, I know that I noJmally don't have inflammation or scarring even when I'm not on steroids. Once, during a flare up, I had scattered ulcers but they were never seen again. I think second opinions are an excellent idea and I did pursue one (my doctor is in a NYC practice that only does Crohns, UC and the like) who practices in NJ, where I live. He agreed that I didn't need any stronger medications and mentioned that, if a time comes when that's what I do need, he likes Remicade from Crohns better than 6mp. I think I should continue tapering off the medicines (except Apriso and probiotics which I always take) and see how things go. I really don't want to go back up on the Budesonide because of insomnia, anxiety and depression which seem to be side effects for me. Thank you again for your advice.
when did you do the fecal calprotectine?
FC is said that it to be very sensitive.
I would ask for another one if symptoms persist or at the end of your medication.
I would really encourage you to return to living your life fully.
Physical activity is associated with longer remission in IBD. Its definately a good thing to do! Not only it could be good for IBD, but it is for anxiety and depression also. Im am just back from a conference by a psychologist at Crohn's and Colitis Canada and he exactly stated physical activity is the best natural anti-depressant.
Social activities are also good for the spirit and lower stress, very good for us! Just go and have fun!
If you are unsure about diet, you can take a look at IBD-Aid diet in my signatue, it may give you some ideas
FC is said that it to be very sensitive.
I would ask for another one if symptoms persist or at the end of your medication.
I would really encourage you to return to living your life fully.
Physical activity is associated with longer remission in IBD. Its definately a good thing to do! Not only it could be good for IBD, but it is for anxiety and depression also. Im am just back from a conference by a psychologist at Crohn's and Colitis Canada and he exactly stated physical activity is the best natural anti-depressant.
Social activities are also good for the spirit and lower stress, very good for us! Just go and have fun!
If you are unsure about diet, you can take a look at IBD-Aid diet in my signatue, it may give you some ideas
