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07-07-2015, 03:44 AM   #301
scottsma
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Didn't fancy smearing my nether regions with white of egg �� so have bought some germaloids suppositories to try for a week. If they don't work then it's off to the GP to see if she has a miracle cure.
Bunty x
Don't forget to share if she has.....
07-09-2015, 04:13 PM   #302
gtc45
 
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has anyone taken colestipol. it has been giving me pain but it made my bms less. i am also on cimzia. one doctor told me not to go on entivio.as long it keeps my crohns under control dont worry about your bms.
07-09-2015, 06:37 PM   #303
peluchde
 
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I've just started Entyvio. Why did your doctor say not to take it?
08-04-2015, 02:59 PM   #304
Marlena
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I am so annoyed. My husband had a minor operation today and probably because we got up so early, I forgot to take my own food. Went to the cafeteria - because of all the things I shouldn't eat, all there was ,was yogurt and tea. In a hospital, which has lots of people with special dietary needs and which if you don't, has a great menu. Good thing it was a quick in and out.
08-04-2015, 03:08 PM   #305
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Have been doing my own experimentation. Have been taking 2 Billion CFU Lactobacillus Acidophilus at the start of every meal.

The day after I started I stopped having diarrhea and pain. Forgot to take it for one meal and lookout. So far so good - I will continue this way.
08-05-2015, 10:40 AM   #306
scottsma
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I've just started 20billion acidophilus.And because I'm losing my Gallbladder soon,I've been taking digestive enzymes for about 6 weeks.I do feel better than usual,but sometimes it's the "calm before the storm"I've also been told I'm borderline diabetic so my diet is a problem now,regarding crohns and the other two problems.

Lifes never dull.
08-06-2015, 02:09 PM   #307
Bunty
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So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
I confess to knowing little or nothing about this supplement, I'm just asking the questions ☺️
Bunty x
08-06-2015, 02:16 PM   #308
LodgeLady
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So those of you who are taking this 20 billion stuff, have you been advised by your doctor to do so or is it just something you decided to use?
I see those with compromised immune systems are not recommended to take it so I guess those of us taking immunosuppressant drugs are amongst them. Also those with damaged intestines are advised against it...isn't that most of us here??
I confess to knowing little or nothing about this supplement, I'm just asking the questions ☺️
Bunty x
I don't take any of that stuff.
08-06-2015, 04:47 PM   #309
Marlena
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My doctor and nutritionist both feel this is a good thing to do, as our own intestinal flora are not healthy.
08-06-2015, 05:41 PM   #310
Terri311
 
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My doctor and my dietitian said it was a good thing to try out. They mentioned that there are a few blind studies being done on Crohn's patients with probiotics.
08-07-2015, 03:22 AM   #311
scottsma
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I have used probiotics in the past and have had no adverse effects.If I use something else,ie: another supplement or diet exclusion/inclusion,I stop the one I've been on longest otherwise it's difficult to know what's working and what's not.
I've had no problems with anything except some food. Alas,it's all the food stuffs I love !!!
08-07-2015, 03:28 AM   #312
Bunty
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It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment.
I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
Bunty x
08-07-2015, 03:57 AM   #313
scottsma
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It's interesting that doctors, nutritionists and dieticians all recommend taking these supplements. I might ask about taking them myself at my next appointment.
I wonder why some studies advise against taking them, for the reasons I've said? Makes it a bit confusing..
Bunty x
Keep us updated Bunty,it's always interesting to hear what others have been advised (and confusing)!!!
08-27-2015, 02:35 PM   #314
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I was diagnosed with Microscopic Colitis found during my colonoscopy. Entocort always worked but the thing is with that medicine, one day it will no longer work. I've had explosive diarrhea for six months now. My son was getting married and I was worried about making it through the wedding and there was a 100 mile trip to get there and nothing was working!

Out of desperation, my GI doctor put me on Cholestyramine, a powder that is mixed with juice and is made for lowering cholesterol. It is the only thing that has helped me. The side effect is constipation. If I become too constipated, I go off of it for a day or two and of course, the diarrhea returns. We're going to continue with this regimen until the colitis runs its course, if it does.

So much for my Golden Years!
08-27-2015, 05:37 PM   #315
Marlena
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Not a lot of fun, is it? It's not much fun to have to always be thinking about your rear.
08-27-2015, 06:27 PM   #316
Gail Jothen
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I fortunately don't have diarrhea with my IBD, but I have such terrible pain behind my belly button I cannot function very well. My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad that I am hanging on to living with my fingernails...
My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer. I am surely not eating enough. Right, these are my Golden Years!
08-27-2015, 08:06 PM   #317
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I continue to take two types of probiotics. One extra strength at breakfast and the other meals I take a complete one.

At first I tried the extra strength at every meal but ended up constipated. Now this system seems to be working best and is 95% effective. I no longer have diarrhea unless I forget to take one.
08-28-2015, 04:57 AM   #318
scottsma
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Hi,and welcome to all of you above.Sorry you have to be here at all of course !!!

I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?
08-28-2015, 05:53 AM   #319
peluchde
 
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I fortunately don't have diarrhea with my IBD, but I have such terrible pain behind my belly button I cannot function very well. My 4th Remicade infusion helped for 2 weeks but it has now been 3 weeks of gut pain so bad that I am hanging on to living with my fingernails...
My dr gives me my next Remicade treatment in 3 weeks....I am living on prayer. I am surely not eating enough. Right, these are my Golden Years!
I must have a similar type of Crohn's. My problems are pain in that same area, radiating across, constipation, obstructions, and now possible rectal prolapse. I've tried lots of drugs and now I'm taking Entivyo infusions. Just had my 3rd one, but not sure this will be my miracle. Just have to wait. Are you still working? I'm finding it harder and harder each day.
08-28-2015, 07:17 AM   #320
Terri311
 
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Hi,and welcome to all of you above.Sorry you have to be here at all of course !!!

I'm feeling a bit under the weather today.I had my Gall bladder out last Thursday, so that might have something to do with it.I'm careful with my diet but not obsessive.Not sure if the fatigue,nausea and diarhea is post op.or if I'm having a mini flare.But I do feel better than earlier,so maybe it's nothing.Is anyone else gall bladder less ?
I've had my gallbladder out for many years but it is only the last couple of years that I don't seem to be absorbing fats at all. I also have a lot of pain if I eat most vegetables, but carrots, potatoes and beets are OK in moderation. I am Celiac and allergic to Casein so taking any of those causes great gas and pain as well as diarrhea.

I am surprised that I seem to be accepting these increasing limits, though last night at a restaurant that serves very good buns I really was not a happy camper.
08-28-2015, 07:27 AM   #321
Bunty
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Get well soon scottsma, hope you feel better each day 😊
Bunty x
08-28-2015, 09:53 AM   #322
Gail Jothen
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peluchde, I am retired except I am a church organist so do subbing jobs. There is no way I could work feeling the way I do. I've had this 5 1/2 years and lost 30 pounds the 1st 2 months and then another 10 since. I was not diagnosed until Jan. '14 so just lived with pain and was given anti depression and anti anxiety meds for 4 years....which of course was no help, but the GIS i saw said I had reflux...the one I see now gave me a pill camera which saw 9 ulcers and I was finally diagnosed. I have gone through a number of meds. Now he told me I could have developed antibodies to the Remicade! i don't see him for 3 weeks so just have to live through this....it is very difficult. I pray a lot! And Terri, I don't seem to absorb fats either. And they usually cause pain. Have you heard of the FODMAP diet? It has helped me a lot, not with healing, but with knowing what to eat and what not to eat.
Root veggies are the best for me, and spinach, green beans, bok choi...no cabbage family.
Also it came take a week or 2 to get over the anesthetic you had for your gall bladder surgery.
09-09-2015, 12:33 PM   #323
ardreybill
 
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Crohns @ 57.59 now and 2 flares in 6 months.Im going nuts because the meds they want to put me on have severe sides.Prednisone worked but they don't want me on long term.Cancer in 2011 and some of these meds may cause cancer. So I'm with you. I hate the thought of losing my independence.
09-09-2015, 03:49 PM   #324
Gail Jothen
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I am having a TERRIBLE flare up, can't eat, can't do anything, just lay on couch with heating pad. I see my dr in 2 days; hope he can make my life bearable.....
09-09-2015, 05:23 PM   #325
Grumpy1
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Get second infusion of Entyvio tomorrow so far so good....all toes and fingers crossed, touching all sorts of wood etc. Hope everyone is well.
09-09-2015, 05:55 PM   #326
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I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability. I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do. I'll be 60 in a few weeks and I've had 9 hospitalizations so far. I can't function at work anymore.
09-09-2015, 08:44 PM   #327
Gail Jothen
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peluchde: I absolutely agree you cannot teach with Crohn's. It is so disabling.
Best wishes and may God help you get disability.
09-10-2015, 07:45 PM   #328
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I had to retire after 30 years of teaching.
11-13-2015, 04:15 PM   #329
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I've decided to take a leave of absence from my teaching position and start the process of applying for SS Disability. I'm calling an attorney because I'm so exhausted there's no way I could fill out all the paperwork or whatever I have to do. I'll be 60 in a few weeks and I've had 9 hospitalizations so far. I can't function at work anymore.
Hello, I had to retire early because of Crohn's, too. And I got on social security disability, but I had to get an attorney to do so. Unfortunately, it seems to be essential to have one before you will be approved. It took me almost 2 years, but I stuck with it and finally got approved. Good luck to you, and I hope they get your symptoms under control.

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Current Meds: Entocort, Lialda, Imuran, Remicade
Past Meds: Prednisone, Humira, prednisolone eye drops
11-13-2015, 04:20 PM   #330
BrennieJoyce
 
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I am having a TERRIBLE flare up, can't eat, can't do anything, just lay on couch with heating pad. I see my dr in 2 days; hope he can make my life bearable.....
I just went through a horrible flare, and the only thing that saved me was prednisone. I'm still recovering in bed with some abdominal pain, but nothing like it was. My GI told me prednisone is the only thing that can help a severe flare. I hope you find some help soon. I know what sheer hell it is.

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