Author: Sorting Last Post on Top ↓ Message:
KSGAMMA's Photo KSGAMMA Posts: 2,320
7/12/13 12:54 P

My SparkPage
Send Private Message
Reply
VelmaTulip - I'm so glad you have coverage. I don't know how I'd get by without the coverage I do have. Remission is the goal - stick with it! Lin

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


 Pounds lost: 20.8 
 
0
9.5
19
28.5
38
VELMATULIP's Photo VELMATULIP Posts: 653
7/12/13 8:54 A

My SparkPage
Send Private Message
Reply
I'm sure, like me, my friend's family is uninsurable through private insurance, so private insurance is completely out of the question and public assistance doesn't cover infusions (which is what your bother in law gets...mine takes 4 hours). The infusions are the only thing keeping me in remission, so I will do everything I have to in order to have insurance & have my infusions covered. I was in a COMPLETE panic in March when my husband lost his job and I was being told over and over again that I'm uninsurable until January.

I'm getting together with her on Monday and will talk to her about the treatments listed in an earlier post.

Help me get to 70,000 steps this week. Join me on Fitbit www.fitbit.com/user/26T84Y


 September Minutes: 0
 
0
30
60
90
120
KSGAMMA's Photo KSGAMMA Posts: 2,320
7/11/13 6:06 P

My SparkPage
Send Private Message
Reply
your friends must be desperate as you say - it would cost a fortune. I am fortunate here that most things like colonoscopies are covered by our provincial plan. My husband has 75% coverage for drugs at work until he retires next year and then I will have to pay into a provincial plan - I will end up paying approx. $1000 every 3 months so will pay for 1 month and get 2 covered by the plan - better than paying for all 3! We didn't go for private insurance because they want so much every month and will only cover a tiny portion of my drugs - say up to $700 a year and I spend more than that in a month so not worth a monthly premium plus the charges. I could go on an injection for my Crohn's that you get every 3 months (not really an injection, it takes my brother-in-law several hours to go thru it) but the cost is prohibitive - thousands like yours.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


 Pounds lost: 20.8 
 
0
9.5
19
28.5
38
VELMATULIP's Photo VELMATULIP Posts: 653
7/10/13 9:05 A

My SparkPage
Send Private Message
Reply
Sorry LINJARVIS I wasn't clear. We have entire research facilities here for GI issues (that's where I go Borland-Groover Clinic). We also have the Mayo Clinic, so plenty of resources for typical medicine routes. I was speaking of the AAT practitioners from the site that someone posted before me.

The infusion I get every 8 weeks costs $10,000 (not to mention the colonoscopies, endoscopies, CT scans, etc.). I have insurance that covers most (I always meet my deductible by March to have 100% covered the remainder of the year) and the company that makes it will pay up to a certain amount every calendar year as well. Unfortunately, my friend with Crohns doesn't have insurance and her entire family has GI issues (her-Crohns, hubby-Ulcerative Colitis, both sons - Ulcerative Colitis), so they are desperate for alternative methods.

Help me get to 70,000 steps this week. Join me on Fitbit www.fitbit.com/user/26T84Y


 September Minutes: 0
 
0
30
60
90
120
KSGAMMA's Photo KSGAMMA Posts: 2,320
7/9/13 7:04 P

My SparkPage
Send Private Message
Reply
Velmatulip - only 1 Crohn's practitioner in Florida? I live in a small city of 65,000 and we have 4 or 5. Wow.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


 Pounds lost: 20.8 
 
0
9.5
19
28.5
38
VELMATULIP's Photo VELMATULIP Posts: 653
7/9/13 11:03 A

My SparkPage
Send Private Message
Reply
Thank you so much for this info JILL4KELLY! I am in total remission, but my friend is having a terrible time with her Crohns and luckily the only practitioner in Florida is in our city! I will will certainly pass it on to her to see how she does with it.

Help me get to 70,000 steps this week. Join me on Fitbit www.fitbit.com/user/26T84Y


 September Minutes: 0
 
0
30
60
90
120
JILL4KELLY's Photo JILL4KELLY Posts: 107
7/8/13 4:49 P

My SparkPage
Send Private Message
Reply
I have IBS-D (no other gastro issues). I have cured all of my food triggers and my element issues (e.g. used to flare when eating/taking magnesium) by receiving AAT treatments. AAT is Advnced Allergy Therapeutics which "merges 21st century science with 3,000 year-old traditional acupuncture principles" (no needles, they use acupressure). It's been around in the U.S. for about 20 years. It basically reprograms your brain which has an improper reaction to substances that it should not (fixed my pollen allergies too). It will not work on medical issues such as Lactose Intolerance since that is an enzyme issue not an allergy (i.e. improper reaction).

For about 25 years I could not eat any dairy, corn, onion, peanuts, white potatoes and it took me a LONG time to figure out magnesium was a problem. I can now eat all of them and can go to restaurants without talking to the manager and still worrying :D The treatments are quick and painless. Of course, they haven't yet figured out how to simulate stress, so I do still get flare ups (but nothing, nothing like the doubled over in pain and in the bathroom for hours taking Imodium like it was chocolate that I used to have). I recently had a mild reaction to corn (after about 2 years), went back for one treatment and am happily eating corn on the cob again! Please do research on the web and check in your area for a place that will offer it - it is indescribable how free I feel!

Note that your doctor will probably have never heard of it. I have a Primary Care Physician who is open to alternative treatments and when she found out my success, asked for more information to pass along to some of her friends.

To fix all of my food/element issues took about 8-10 treatments. I was also getting treatments for pollen and other allergies and hoping that some treatments would decrease my migraines (very minimal help there) so I'm not sure how many treatments I actually had at first.

Write here or SparkMail me if you have more questions about my experience. I don't really know how it works, neither do I care!!

Jill, Mom to Kelly who is 25 years old, has the physical capabilities of an infant, mentally 1-2 year old, controlled seizures, vision problem, and is the absolute happiest person I know. She is a true Blessing!


 current weight: 2.6  over
 
5
2.5
0
-2.5
-5
KSGAMMA's Photo KSGAMMA Posts: 2,320
7/8/13 4:05 P

My SparkPage
Send Private Message
Reply
DSCH1207 - I was being treated for a Smoker's Ulcer for 7 years by a gastro who's specialty was Crohn's. When he thought I had scar tissue and needed surgery he sent me to a surgeon. The surgeon is the one who realized I had Crohn's and the other guy didn't believe it. I understand that it's almost impossible to tell the Crohn's and Ulcerative Colitis apart in some cases until you have surgery and it's right there in their face. When I have a flare for some reason grilled cheese sandwiches and Kraft Dinner are 2 of the few things I can manage - I have no idea why since they are high in fat and that almost always bothers the Crohn's. When I get blocked enough, even water won't go thru - my intestines swell from the outside in until the pathway is the size of a pencil line allowing nothing thru. I've had CatScans that didn't even show there was an issue when that happened because the swelling is inside the colon and not the colon swelling out bigger. Drinking barium at a time like that is one of life's biggest treats - no way will it go thru, lol. Good luck at your appt. next week - I too must start keeping notes in a notebook for the next appt. Thanks for the reminder.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


 Pounds lost: 20.8 
 
0
9.5
19
28.5
38
VELMATULIP's Photo VELMATULIP Posts: 653
7/8/13 12:31 P

My SparkPage
Send Private Message
Reply
The only med I'm on now is getting Remicade infusions every 8 weeks. It's the only thing that put me in remission once the high doses of prednisone knocked out the inflammation. Every time I'm given a new medication, I go to drugs.com to see not only the side effects, but also the interactions it has with other medications. Sometimes the interactions (like Omeprazole and Asacol) can cause some not fun interactions that the doctor doesn't tell me about. My first GI dr. just kept pushing pills that did absolutely NOTHING to help with my UC. He then did a colonoscopy when I begged him to do SOMETHING to make me be able to eat & when he did, it was the Friday before Thanksgiving. He then said, "yep, you're still in a flare, call me after Thanksgiving". I was like, "what can you do about this SEVERE D between now & then?? I can eat absolutely nothing!". He said, "Oh, well, our only other option is to put you in the hospital" Umm ok. That helped bc I got my first dose of Remicade, but after a few other doctor related problems in the hospital, I wanted to switch doctors immediately. When I switched doctors, I was amazed at how quickly they got it under control.

You may want to call your GI & ask for something to calm down the D. Lomotil is the only thing that works for that symptom for me (of course my original dr gave me nothing for that issue). Immodium and other stomach meds did nothing for me.

Good luck and keep me posted...feel free to email me through Spark Mail

Help me get to 70,000 steps this week. Join me on Fitbit www.fitbit.com/user/26T84Y


 September Minutes: 0
 
0
30
60
90
120
DSCH1207's Photo DSCH1207 Posts: 70
7/8/13 11:28 A

My SparkPage
Send Private Message
Reply
Hi VELMATULIP,
Thanks for the info. I honestly never think to drink gatorade while I'm having D issues. I do have ulcerative colitis as well. I'm just FULL of GI problems! I think this particular bout of D is being brought on by a new med I'm on. The DR said it'll take a few weeks for my body to get used to it. I called him today to let him know how bad it is. Hopefully he'll call me back to let me know if this is normal!

 current weight: 199.2 
 
210
195
180
165
150
VELMATULIP's Photo VELMATULIP Posts: 653
7/8/13 10:55 A

My SparkPage
Send Private Message
Reply
Sounds like my ulcerative colitis flares. The ONLY thing I can keep in my system when I have them is white rice. Literally everything else shoots right though me during a flare and I can handle white rice, vegetable broth, and Gatorade (to keep sodium and enzymes in my body). Absolutely everything else shoots right through. Also, the lower the fiber the better during flares. You need to give your body time to heal. Never used a FODMAP as giving up most fowl, dairy and red meat helped with the pain issues I was having. I hope you get better soon and if it gets worse, call the dr. & say you need immediate attention.

Help me get to 70,000 steps this week. Join me on Fitbit www.fitbit.com/user/26T84Y


 September Minutes: 0
 
0
30
60
90
120
DSCH1207's Photo DSCH1207 Posts: 70
7/8/13 10:32 A

My SparkPage
Send Private Message
Reply
Hi LINJARVIS,
Thank you for your support! I'm hoping someone can answer these questions too. I have an appt next week with the GASTRO, hopefully she'll be able to tell me something. I tend to write questions down as I think if them and then pull out my big pink datebook and ask her EVERYTHING. I don't think she likes it much! LOL.
The FODMAP diet (Low FODMAP) is basically low in certain enzymes and chemicals (I guess) that make it easier to digest food and absord nutrients. I don't know if if workds for Chron's though. I still think I have Chron's but every MD says no. I've been through so many biopsies and colon/endoscopies I've lost track. NO ONE seems to be able to give me any concrete answers. The great thing about the FODMAP is that it is basically gluten and dairy free which have been known to help reduce inflamation in the bowels and assist with those pesky blockages. Perhaps you should look into it?

 current weight: 199.2 
 
210
195
180
165
150
KSGAMMA's Photo KSGAMMA Posts: 2,320
7/8/13 10:23 A

My SparkPage
Send Private Message
Reply
I hope someone here can help with the item your Dr. gave you - I have no idea what it is. I have Crohn's and when I react to eating the way you are, it means I have a blockage. I've often wondered how many cals, etc., you've already absorbed before losing everything and whether or not you can re-eat once you feel better. Same goes for meds - I would often lose them shortly after taking them when I have blockage. It's always 6 mths between appts with my gastro (and heaven help you if you have a flare between because it's emerg and starting from square 1 with drs. that know nothing about you) and by then I forget to ask those questions! Hopefully, someone here will have an answer. Hang in there and good luck.

Lin from Peterborough, ON., Canada

10 STEPS TO SELF-CARE - If it feels wrong, don't do it; Say "exactly" what you mean; Don't be a people pleaser; Trust your instincts; Never speak bad about yourself; Never give up on your dreams; Don't be afraid to say "No"; Don't be afraid to say "Yes"; Be kind to yourself; Let go of what you can't control; Stay away from drama and negativity as much as possible. (unknown)

Lost 48 lbs. in 2012 & 13 but gained 30 back!


 Pounds lost: 20.8 
 
0
9.5
19
28.5
38
DSCH1207's Photo DSCH1207 Posts: 70
7/8/13 9:46 A

My SparkPage
Send Private Message
Reply
Hello all! I'm in the middle of a flare-up :-(
I can't recall if I've ever had this problem before because I've just started "listening" to my body and trying to create a healthy lifestyle. Basically, about 25-45 minutes after I eat I get "sick" with IBS-D and basically get rid of everything I've just eaten. Last night I passed a bunch of spinach and lettuce because I had a salad. Afterwards, I'm so so hungry but I don't want to go over my calorie, carb, cholestoral etc intake for the day. Can anyone offer some help?
P.S. On a different note, my MD gave me a FODMAP chart and I don't understand it. Can someone dumb it down? Thanks!!!

 current weight: 199.2 
 
210
195
180
165
150
Page: 1 of (1)  

Report Innappropriate Post

Other IBS ( Irrritable bowel syndrome) General Team Discussion Forum Posts

Topics: Last Post:
Citrus... 11/3/2013 7:09:39 PM
Nexium Lawsuits from kidney failure. 3/17/2014 12:25:04 PM
IBS and problems with wheat? 11/3/2013 1:38:28 AM
What exercises work for you? 4/14/2014 12:27:23 PM
water ? 7/17/2014 7:19:28 PM

Thread URL: http://www.sparkpeople.com/myspark/team_messageboard_thread.asp?board=0x2469x54045308

Review our Community Guidelines