Re: Help please: opinions annd help with my flare

[Guest guest]

Hi everyone, I'm not sure what to do so I'm asking away here. I'm on prednisone almost a year now. I'm taking 10 mg orally at the moment.. and still doing daily enemas of 25 mg. I can't take the conventional maintenance meds.. so working with alternative docs to try and get a handle on this and of course the diet! I just started the diet really. I did the intro, when I caught an intestinal virus last week. I couldn't keep much down so it was good timing to start..chicken soup was perfect... But the virus really aggravated my symptoms. I had high fever and had to take some antiviral herbs to get that down.. they are not legal I'm sure. I believe with me the viral part of this disease is a big part of it and of course the diet. I think the herbs really messed me up on top of the diet. (Echinacnea well, echinacea is okay. and goldenseal) I did them three days only. Previously, I was not bleeding had good stools and so on with the above dosages of the 10 mg and the daily enemas until I lowered the oral prednisone to 9 mg.. (about two months ago). I started to bleed a little bit,..but it was escalating. I ended up going back up to ten, but haven't gotten the bleeding stopped since I had gone to 9 mg. It wasn't much bleeding compared to earlier times. Maybe a dime size worth of blood. Then the virus came and now I have a mess. Puss, skin, and blood, sorry to be so descriptive but I know we have to be. I've had to eat differently and trying to figure out what I can and cannot ingest. With the virus though I have to eat light, but I also have hypoglycemia. *I am trying to decide whether it would be in my best interest to raise the prednisone orally to 15 mg to try and get this mess I'm experiencing in the bathroom under better control or just to hang in there for a bit longer and see if the dietary changes make any difference.* I feel sore in my colon at times, but not running to the bathroom.Have you tried epsom baths for this - it helps to relieve this kind of internal achinessa lot. Actually today was the first day in a few I evacuated which is unusual. Mostly I have 2-3 a day a a rule...but formed.That's a sign that there has been some change in your gut ecology with the diet. I am taking the VSL 3.. for a long time nowVSL is not legal. If contains bifidus, I believe. There'sa legal probiotic made by Kirkman's and also one availableat LUcy's Kitchen shop. , I really don't know if it has been a help or not, because when I was on the higher dose of prednisone, I was not symptomatic.. so unable to judge what was a problem and what wasn't. If you had a viral thing going, it's typical for that to be a set back up, apart from anythingelse. I'd love to get away from the enemas. My GI doc doesn't know what to do with me just wants me off the prednisone ..he doesn't know from diet. I'll put a separate post out on that. So the biggie question after all this is what is your advise? Should I up the prednisone or hold off a bit? It depends on how bad it is, if it stays the same or gets better, or keeps getting worse.Myself, I would make some long cooked bone broths soups and go on serious intro and maybe some stage 1 meats and veggies for at least a week if not longer and see if that helped. If that doesn't help, I'd think about upping the drugs. But that's based on me and the way my body responds to drugs and this illness. You know your body best, and how it tends to respond to things, and that's thecrucial factor here in making your decision, since everyone on this list isidiosyncratic in terms of how we react to stuff. So there are no general rules that apply everywhere. You have to judge by knowing your body and yourreactions and with some info about the diet. I'm having the blood, puss, skin mess (not a ton of blood but I can smell it and see some in there.... on the stools...and all that white stuff yuk! That's mucous, as a result of the inflammation - to reduce that, reduce your dairy intake for the meanwhile. That might help. I am a very chemically sensitive person and would never survive the hospital. So it's important to get this under control. I don't want to raise the prednisone, I have side effects from it, but the 5 mg wouldn't mess me up much. The GI doc had told me before when I only raised it a little bit, I was doing that the wrong way. You need to do a "kick- start" so he put me up to 60! I survived that and gradually worked down to where I am now. Mara

[Guest guest]

Hi Mara,

Thank you again for replying to my post. I greatly appreciate your food suggestions. I have been suspect about the VSL3 for bit. I didn't realize it wasn't legal. I'll check the Kirksmans. The one I have by that company also has the bifidus in it. I'm learning that's an issue for us. The virus made things worse, no question.. but I still have to get things in better shape on my end. I am totally off dairy, I don't think I tolerate any at this point, no wheat, no gluten, and actually I believe I don't tolerate any sugar or honey right now.. So I'm hard pressed to get the fuel in my body to keep going and not get hypoglycemic. No I haven't tried the Epsom salt baths for that, but a relaxing bath sound nice. I certainly will in hopes it heals more than the spirit Maybe the mucus, is from the virus, or the jello I made with the grape juice in it. I think fruit in any fashion

is out too..

Kindly, DuckieIBS 20 yrs UC dx March 2008/ 1 year active before dx

> Hi everyone,>> I'm not sure what to do so I'm asking away here. I'm on prednisone > almost a year now. I'm taking 10 mg orally at the moment.. and still > doing daily enemas of 25 mg. I can't take the conventional > maintenance meds... so working with alternative docs to try and get a > handle on this and of course the diet!>> I just started the diet really. I did the intro, when I caught an > intestinal virus last week. I couldn't keep much down so it was good > timing to start..chicken soup was perfect... But the virus really > aggravated my symptoms. I had high fever and had to take some > antiviral herbs to get that down.. they are not legal I'm sure. I > believe with me the viral part of this disease is a big part of it > and of course the diet. I think the herbs really messed me up on top > of the diet. (Echinacneawell,

echinacea is okay.> and goldenseal) I did them three days only.>> Previously, I was not bleeding had good stools and so on with the > above dosages of the 10 mg and the daily enemas until I lowered the > oral prednisone to 9 mg.. (about two months ago). I started to bleed > a little bit,..but it was escalating. I ended up going back up to > ten, but haven't gotten the bleeding stopped since I had gone to 9 > mg. It wasn't much bleeding compared to earlier times. Maybe a dime > size worth of blood.>> Then the virus came and now I have a mess. Puss, skin, and blood, > sorry to be so descriptive but I know we have to be. I've had to > eat differently and trying to figure out what I can and cannot > ingest. With the virus though I have to eat light, but I also have > hypoglycemia.>> *I am trying to decide whether it would be in my best

interest to > raise the prednisone orally to 15 mg to try and get this mess I'm > experiencing in the bathroom under better control or just to hang in > there for a bit longer and see if the dietary changes make any > difference.*>> I feel sore in my colon at times, but not running to the bathroom.Have you tried epsom baths for this - it helps to relieve this kind of internal achinessa lot.> Actually today was the first day in a few I evacuated which is > unusual. Mostly I have 2-3 a day a a rule...but formed.That's a sign that there has been some change in your gut ecology withthe diet.> I am taking the VSL 3.. for a long time nowVSL is not legal. If contains bifidus, I believe. There'sa legal probiotic made by Kirkman's and also one availableat LUcy's Kitchen shop.> , I really don't know if it has been a help or not, because

when I > was on the higher dose of prednisone, I was not symptomatic. . so > unable to judge what was a problem and what wasn't.>If you had a viral thing going, it's typical for that to be a set back up, apart from anythingelse.> I'd love to get away from the enemas. My GI doc doesn't know what to > do with me just wants me off the prednisone ..he doesn't know from > diet. I'll put a separate post out on that.>> So the biggie question after all this is what is your advise? Should > I up the prednisone or hold off a bit?It depends on how bad it is, if it stays the same or gets better, or keeps getting worse.Myself, I would make some long cooked bone broths soups and go on serious introand maybe some stage 1 meats and veggies for at least a week if not longer and seeif that helped.If that doesn't help, I'd think about upping the

drugs.But that's based on me and the way my body responds to drugs and this illness.You know your body best, and how it tends to respond to things, and that's thecrucial factor here in making your decision, since everyone on this list isidiosyncratic in terms of how we react to stuff. So there are no general rulesthat apply everywhere. You have to judge by knowing your body and yourreactions and with some info about the diet.> I'm having the blood, puss, skin mess (not a ton of blood but I can > smell it and see some in there.... on the stools...and all that > white stuff yuk!That's mucous, as a result of the inflammation- to reduce that, reduce your dairy intake for the meanwhile. That might help.> I am a very chemically sensitive person and would never survive the > hospital. So it's important to get this under control. I don't want > to raise

the prednisone, I have side effects from it, but the 5 mg > wouldn't mess me up much. The GI doc had told me before when I only > raised it a little bit, I was doing that the wrong way. You need to > do a "kick- start" so he put me up to 60! I survived that and > gradually worked down to where I am now.Mara