Still struggling .......

[Ginny]

I am now at the end of my 4th week of a flare and am wondering whether to go back on Entocort or just keep sticking it out. I have been able to control the BM's 70% of the time with 2-4 Imodium a day, however the grumblings are back big time. The minute I put food into my mouth it begins. So I feel the inflammation is in full swing again. My diet has been very restrictive and, as best as I can, trying to figure out other intolerances; i.e. guar gum. I can go a day with no BM and then have loose the next. What to do???

I am also taking L-Glutamine and have started therapy with an acupuncture (boy, do you sleep well after a session). I am most thankful for not being so nauseated this time around.

Of course this is my decision but would like to hear from you "experts". I've been struggling with this disease for 16 months, went GF/DF/EF/SF in December 09. The combination of Entocort and the diet immediately ended the D, however, I quickly went to 1 pill and then to a pill every other day to none in a totol of 2 1/2 mo.
So am wondering if I got off this pill to fast.

As all of you, I am so appreciative of this website and the wealth of information. Ginny

[ant]

Dear Ginny

How fast to come off entocort and/or if to up the dose is the question I too am asking myself. After 9 months I got down to 1 pill a day, but can sense that things are not quite stable. i.e. a few days of D. I have gone back up to 2 pills for the last 4 days (and Imodium and pepto bismal). That kept things under control (i.e no more than 2 bms a day) and I have now gone back down to 1 entocort with fingers crossed.

Whatever you decide to do best wishes for your flare reduction ASAP.

Love, ant

[tex]

So am wondering if I got off this pill to fast.

Unfortunately, there is no simple yes or no answer. Of course, it's certainly possible for many/most of us to achieve remission by diet alone, but it does tend to take quite a while to accomplish that, for most of us, (it took me a year and a half, but most people are able to do it in a year or less). Entocort definitely speeds up the process. Most members who use it in combination with the diet, find that it works best to continue taking the Entocort at a full rate, for about 6 months or more, before attempting to taper the dose.

The problem is that most of us have a significant amount of intestinal damage, by the time we receive a diagnosis, and it takes much longer for that damage to heal, than the GI docs realize. Most GI docs actually expect the gut to heal in about 6 weeks, (since the label on Entocort EC lists 6 weeks as the initial treatment period). That's so far removed from reality, that it would be funny, if it weren't such a serious subject. In the real world, it typically takes from 1 to 3 years for the gut to heal, (depending on the extent of damage, diet, immune system status, etc.), and in some cases, it takes longer. I had Enterolab do a fecal fat test, about 3 and a half years after I started the GF diet, (and I was very meticulous with the diet), and my test result showed that I still had a significant amount of residual intestinal damage, even after being on the diet for that long. Of course, people who are diagnosed at a younger age, heal faster. That's true for celiacs, also. Most celiacs will still show significant damage to the small intestine, 1 to 3 years after they adopt the GF diet, but younger patients will heal much faster.

Now, just because it takes so long for the gut to completely heal, doesn't mean that we will still be reacting that long. Healing continues long after remission has occurred, in most cases. We are all different, of course, but typically, a combination of the diet and Entocort, should bring remission, (from the D, at least), within a month or so, whereas the diet alone, will probably require a minimum of at least 3 to 6 months, and as I already mentioned, it can take much longer, in some cases. The tricky part is discovering all of the food intolerances, and cutting them out of the diet. For some of us, that is much more difficult/complicated, than for others, and luck may have a lot to do with it, for that matter.

I'm not an authority on L-Glutamine, but since almost any protein has the potential to be a problem with MC, for some individuals, are you sure that it is not contributing to your symptoms? I'm not saying that it is - I'm just saying that we have to look at all foods, all supplements, all meds, etc., as potential inflammatory agents, with this disease. Nothing seems to be sacred with MC.

The bottom line is, we can do everything right, and still continue to react, simply because the gut has not had enough healing time, to allow it to properly digest food. This can be a "Catch-22" situation, because improper digestion can cause MC, and MC causes improper digestion. That's why in some cases, "shocking" the digestive system, with a corticosteroid, can tip the balance, and help to get the digestive process working again.

The diet should get you to where you want to go, but Entocort EC will help you to get there faster, and with a lot less misery, and a lot less anxiety, along the way. One of the problems with MC is that it is virtually impossible to tell whether we are one day away from remission, or 6 months away. With most health issues, we can easily tell when we are getting better - with MC, logic goes out the window. There are a lot of miscues, and more questions than answers, and about all that we can do, is to develop a treatment plan, and stick to it, while hoping for the best. If what we are doing doesn't show some significant benefits, after a reasonable amount of time, we have to try something else. Unfortunately, "a reasonable amount of time" is difficult to pin down, with MC, and it can be anywhere from a week or so, to many months.

Whatever you choose to do, I wish you the best of luck, and please stay in touch, and keep us undated on your progress.

Tex

[JoAnn]

Dear Ginny, I haven't posted in a while, but I have the day off and read your post. You sound just like me a few months ago. I'm doing really well and will share what I've done. One thing though that I have learned as Tex emphasizes, everyone's journey is unique and you need to not worry about how fast some else gets into remission or what is typical. There is no typical, and your journey will be unique. I've learned so much from this board and through trial and error have found what works for me, but it is a continuing process. I was in remission after using Entocort for 7 months, tapering off, and using D-Mannose. (Also gf-df-sf-ef) This supplement helps me, it may or may not help you. In December, I caught a virus and ate some turkey soup that caused my immune system to flare up and threw me back to square 1. I toughed it out for about 4 weeks and then went to my pcp. She put me on a low dose of Prednisone for 5 days. This immediately stopped the flare and I had beautiful normans. She then had me switch to a full dose of entocort and I have taken my time tapering off due to family and professional commitments. I am now taking 1 a day along with Dmannose. I am also experimenting with another supplement(s) that seems to have helped me, but I don't want to post that until I give it a few more months. I am at a point that I can tell on a daily basis if I have eaten something that my body doesn't like, so I avoid it and try it later. I 've learned I can eat some foods occasionally, but not daily. That is the part everyone has to figure out on their own. When you're in a flare, you can't figure anything out. For me, it was important to stop the flare and regain my confidence that I can figure this out. I've thrown out all time tables and am taking this slowly listening to my body as I deal with the stresses of life that I can't control. I'm certain I will be off entocort soon, but I'm not going to put a date out there and worry about it. I listen to my body and look at my schedule. Entocort became so expensive for me, that that became a worry. But I now order the generic from Canada which is very affordable and works great. It has really helped me to not compare myself to others who are doing different things or who have achieved remission faster. I think I'm one of those people who will take longer to completely heal. Tex has helped me more than he'll ever know as well as every person who posts on this board. I wonder how sick I would be today if I hadn't found this wonderful place. I'm so grateful for everyone here. I hope you will soon find the right way for you to heal and regain your sense of well-being. JoAnn

[Ginny]

Ant, Tex & JoAnn, thanks for responding and your concerns.

Tex the L-Glutamine I am taking is GF, DF, SF & YF and I just started taking this a little over a week ago to see if it would help. I am also wondering because my Anti-gliadin IgA was so high (402) that I probably have not healed to the point of remission as I had thought. You always have such words of wisdom and patience. I truly admire all of you that have conquered this disease by diet alone.

JoAnn, what you say is so true and I know that each of us has to find our own path. It is so beneficial to hear other people's stories, because I do feel alone with this disease and it has changed our family's lifestyle. Fortunately I have a supportive family, but the old saying still goes..........until you've walked in my shoes............ I also think that my path to wellness will be a longer journey and it appears that you and I are a lot alike with our food intolerances and I probably have more; just hard to figure out which ones.

Ant, I read a lot of threads and I know you also have been on a long trip yourself. I think JoAnn's philosophy is for us! Take your time and do what you need to do to be functional.

My GI has been kind enough to give me a few prescriptions ! Actually I also started with prednisone and it does work and then moved to Entocort . I was just hoping to figure out what is causing this flare on my own. The other thing is I loss so much weight and have only put on 5 lbs that my doc has already told me to go back on the Entocort if I start losing any weight .

Wishing you all good health and a blessed Easter. Ginny

[Stanz]

Ginny,

I have had great results with L-Glutamine. Here is my protocol that I began with: http://www.perskyfarms.com/phpBB2/viewt ... ght=#68897

I don't need immodium anymore and I am down to half of the L-Glutamine that I started with.