Need advice
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AerobicsMomma
- Posts: 11
- Joined: Wed Sep 20, 2006 4:45 pm
Need advice
Hello, I've been here to visit a few times- I can't seem to get any real good advice from anywhere else. I recently moved, I'm a military wife, to San Antonio TX (anyone know a DR here?). I've got referrals in with the military medical clinics blahbah but am in the midst of one ugly episode- I've dropped 4 lbs in 2 weeks and feel like my heart is going to pop out of my chest- yes I am still doing aerobics and yeah I should lay off a while but it keeps me sane! I can't seem to eat without felling like I'm going to vommit, the Asacol floats... I was given the Entocort which was great, BUT it messed with my girly cycle and my girly cycle triggers the episodes- so I had just gotten control post cycle when the blasted thing started after 15 days....I feel like I'm losing my mind with each trip to the can. The pain that once was centered near my belly button has begun to radiate to my sternum- I'm starting to fear the dreaded Crohn's. Has anyone out there progressed from CC/LC to Crohns? I have been blessed with both CC and LC- I know I am so lucky. Thank heavens for Prep. H wipes and Bag Balm....but things just seem different than they did 6 mos. ago- granted I'm all of 31, and the diagnosis came 7 mos ago after 13 mos of misery- they thought I had a Carcinod Tumor based on 5HIAA levels... scans were all negative :) I guess my plea is some guidance on what to expect in the coming years of this. I know that 4 mos ago I said I had no gluten issues and that seems to be changing too- I look 9 mos prego after too much bread/pasta. Shrimp oh my beloved favorite is KILLING me! What about food intolerance tests? How do I get that done? Are they really effective? With a new doctor I have a new opportunity to get treated - hopefully for the problems not just when I'm feeling crappy- pun intended! Please reply with suggestions and words of wisdom, I need all I can get right now since this is the only place I can turn to where people say "I know" and mean it! Thanks to whomever started this place- it's nice to have a place to ask questions of real life CC/LC patients.!
Hi AerobicsMomma,
Friday afternoons and evenings are usually slow here, so I assume that's why you haven't received some responses to your topic. I realize that I'm the wrong gender, but here goes anyway, (until someone with actual personal experience comes along with some input and/or advice:
Yes, irregular menstrual cycles are a side effect of Entocort, but budesonide is generally the safest, effective med we have for controlling the symptoms of MC. Also, you are correct, in stating that menses can trigger an MC reaction, (or make it more severe). Based on past topics, it appears that for many women, who are having an episode of active MC, the D becomes intensified, (more severe), during menses. I don't recall anyone previously mentioning a cycle disruption such as you are having. (That doesn't mean that it hasn't happened, of course). Also, I don't recall anyone here terminating the use of budesonide because of that problem.
The first thing that you can do to help yourself, (if you haven't already done so), is to cut all sources of gluten, (including all derivatives of wheat, barley, rye, and oats), and all sources of dairy, (and it's derivatives), out of your diet. This will almost surely help, whether you continue to use Entocort, or stop using it. It will not resolve the issues overnight, however, since it takes weeks or months for the gut to heal, depending on how much damage has accrued. Some people are lucky enough to accomplish much faster relief, though, and the sooner you start, the faster you will achieve remission.
Also, there hasn't been a lot of research on this, but I think that it's very possible that the MC might be disrupting your cycle, since other IBDs have been found to disrupt menses. Here is a good reference on that. I was able to view this the first time without registering, but when I went back to verify the link in this post, I had to log in, (which wasn't a problem since I was already a member, from previous use of their web pages, and my computer remembered my login information). IOW, yuu may have to register, in order to read this article, but it is a very good article.
http://www.medscape.com/viewarticle/408847_2
Therefore, it's certainly possible that the budesonide may not be what is causing your cycle problems, and abandoning it may just allow the problem to become worse. Frankly, I doubt that discontinuing the use of Entocort will resolve your issues, but there are no gurarantees with MC - you have to make your own judgments. You know your own body better than anyone else. Everyone is affected somewhat differently, and we all have to find the best treatment program, to suit our own lifestyle.
As far as the prognosis is concerned, there is no reason why you cannot live a normal life, free of symptoms, if you either modify your diet to exclude any and all of your trigger foods; or, get your symptoms under control with Entocort, (or a short course of prednisone, followed by a course of Entocort), and then tapering down the dose and remaining on a maintenance level treatment program of Entocort. If you stop the maintenance dose, or discontinue the diet, the symptoms will return, unless you are one of the very few people who are lucky enough to experience spontaneous remission.
San Antonio is about 125 miles south of where I live, but I have no idea if there are any doctors down there, qualified to treat MC. I didn't have any luck in my area, and I would be extremely surprised if you were to find a military doctor who actually knows how to effectively treat MC. (In med school, MC is considered to be a disease of middle-aged women, and that's not a disease that military doctors are likely to hold high on their list of priorities. Also, San Antonio has a very high Mexican-American population, and I would assume that since wheat is a smaller part of their normal diets, gluten sensitivity is not as likely to be as prevalent in that area, so doctors would not be as likely to encounter the problem. Just north of San Antonio, though, (New Branfels, San Marcos, etc., and even the northern and northwestern part of San Antonio), there is still a large segment of the population who are of German ancestry, and I would suspect that you would be more likely to find a knowledgeable doctor in that area, who might have some idea how to treat MC.
Regarding your question about MC turning into UC or Crohn's: There are a few documented cases where this has happened, but it is extremely rare, and there is a very good chance that in those rare cases, the two IBDs may be acting independently, not in tandem. Your chances of winning the lottery are much higher than your chances of MC progressing to UC or Crohn's, especially if you follow an effective treatment program to control it.
Tex
P S Regarding your question about testing - the only reliable tests for food sensitivities of the type that we have, are stool tests, and the only source for them is Enterolab, in Dallas. When you buy a test, they send you a sample collection kit, and when you have it ready for pickup, you call DHL, and they will pick it up, and take it to Dallas. It usually takes about 10 days to 2 weeks to get test results back by email, or snailmail, your choice. Be aware though, that many/most doctors are not aware of the value of these tests, since most of the research findings behind them have not yet been published. The tests are, however, very accurate, and they are the most suitable for this purpose.
Friday afternoons and evenings are usually slow here, so I assume that's why you haven't received some responses to your topic. I realize that I'm the wrong gender, but here goes anyway, (until someone with actual personal experience comes along with some input and/or advice:
Yes, irregular menstrual cycles are a side effect of Entocort, but budesonide is generally the safest, effective med we have for controlling the symptoms of MC. Also, you are correct, in stating that menses can trigger an MC reaction, (or make it more severe). Based on past topics, it appears that for many women, who are having an episode of active MC, the D becomes intensified, (more severe), during menses. I don't recall anyone previously mentioning a cycle disruption such as you are having. (That doesn't mean that it hasn't happened, of course). Also, I don't recall anyone here terminating the use of budesonide because of that problem.
The first thing that you can do to help yourself, (if you haven't already done so), is to cut all sources of gluten, (including all derivatives of wheat, barley, rye, and oats), and all sources of dairy, (and it's derivatives), out of your diet. This will almost surely help, whether you continue to use Entocort, or stop using it. It will not resolve the issues overnight, however, since it takes weeks or months for the gut to heal, depending on how much damage has accrued. Some people are lucky enough to accomplish much faster relief, though, and the sooner you start, the faster you will achieve remission.
Also, there hasn't been a lot of research on this, but I think that it's very possible that the MC might be disrupting your cycle, since other IBDs have been found to disrupt menses. Here is a good reference on that. I was able to view this the first time without registering, but when I went back to verify the link in this post, I had to log in, (which wasn't a problem since I was already a member, from previous use of their web pages, and my computer remembered my login information). IOW, yuu may have to register, in order to read this article, but it is a very good article.
http://www.medscape.com/viewarticle/408847_2
Therefore, it's certainly possible that the budesonide may not be what is causing your cycle problems, and abandoning it may just allow the problem to become worse. Frankly, I doubt that discontinuing the use of Entocort will resolve your issues, but there are no gurarantees with MC - you have to make your own judgments. You know your own body better than anyone else. Everyone is affected somewhat differently, and we all have to find the best treatment program, to suit our own lifestyle.
As far as the prognosis is concerned, there is no reason why you cannot live a normal life, free of symptoms, if you either modify your diet to exclude any and all of your trigger foods; or, get your symptoms under control with Entocort, (or a short course of prednisone, followed by a course of Entocort), and then tapering down the dose and remaining on a maintenance level treatment program of Entocort. If you stop the maintenance dose, or discontinue the diet, the symptoms will return, unless you are one of the very few people who are lucky enough to experience spontaneous remission.
San Antonio is about 125 miles south of where I live, but I have no idea if there are any doctors down there, qualified to treat MC. I didn't have any luck in my area, and I would be extremely surprised if you were to find a military doctor who actually knows how to effectively treat MC. (In med school, MC is considered to be a disease of middle-aged women, and that's not a disease that military doctors are likely to hold high on their list of priorities. Also, San Antonio has a very high Mexican-American population, and I would assume that since wheat is a smaller part of their normal diets, gluten sensitivity is not as likely to be as prevalent in that area, so doctors would not be as likely to encounter the problem. Just north of San Antonio, though, (New Branfels, San Marcos, etc., and even the northern and northwestern part of San Antonio), there is still a large segment of the population who are of German ancestry, and I would suspect that you would be more likely to find a knowledgeable doctor in that area, who might have some idea how to treat MC.
Regarding your question about MC turning into UC or Crohn's: There are a few documented cases where this has happened, but it is extremely rare, and there is a very good chance that in those rare cases, the two IBDs may be acting independently, not in tandem. Your chances of winning the lottery are much higher than your chances of MC progressing to UC or Crohn's, especially if you follow an effective treatment program to control it.
Tex
P S Regarding your question about testing - the only reliable tests for food sensitivities of the type that we have, are stool tests, and the only source for them is Enterolab, in Dallas. When you buy a test, they send you a sample collection kit, and when you have it ready for pickup, you call DHL, and they will pick it up, and take it to Dallas. It usually takes about 10 days to 2 weeks to get test results back by email, or snailmail, your choice. Be aware though, that many/most doctors are not aware of the value of these tests, since most of the research findings behind them have not yet been published. The tests are, however, very accurate, and they are the most suitable for this purpose.
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hi AM,
I'm 20 years older than you but can say without a doubt that MC disrupted my menses and likely threw me into early menopause. By the time I started using Entocort my periods were not even an issue but I do remember before that having chronic D and periods at the same time that just drained me.
Since you are young and have a DX
I'm 20 years older than you but can say without a doubt that MC disrupted my menses and likely threw me into early menopause. By the time I started using Entocort my periods were not even an issue but I do remember before that having chronic D and periods at the same time that just drained me.
Since you are young and have a DX
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Hi there!
I'm 20 years older than you but can say without a doubt that MC disrupted my menses and likely threw me into early menopause. By the time I started using Entocort my periods were not even an issue but I do remember before that having chronic D and periods at the same time that just drained me.
You are the first I'm aware of here that has a DX of LC & CC.
Entocort worked well for me. I took it for 6 months with no problems and paid attention to my diet, weaned off it slowly and living symptom free now.
Your prognosis with MC will depend on what steps you take now. I believe that diet in the long run will be your saving grace.
Thanks much for posting.
Joanna
I'm 20 years older than you but can say without a doubt that MC disrupted my menses and likely threw me into early menopause. By the time I started using Entocort my periods were not even an issue but I do remember before that having chronic D and periods at the same time that just drained me.
You are the first I'm aware of here that has a DX of LC & CC.
Entocort worked well for me. I took it for 6 months with no problems and paid attention to my diet, weaned off it slowly and living symptom free now.
Your prognosis with MC will depend on what steps you take now. I believe that diet in the long run will be your saving grace.
Thanks much for posting.
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/