Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Tornado6

HealingWell Forum
>
Member Profile
Display Name
Tornado6
Profile Created
3/13/2013 3:58 PM
Last Seen
4/18/2015 6:38 AM
Total Posts
1155

Last 50 Posts

The R Word

My sig was way out of date... Remicade Imuran Allopurinol Folic Acid...

4/15/2015 4:27 PM

Ulcerative Colitis
1 year!

Hooray!...

4/15/2015 4:23 PM

Ulcerative Colitis
Infliximab + Azathioprine combination doses

I am on 50 mg of azathioprine M - F, 25 mg on the weekends, along with 100 mg Allopurinol daily. And 7.5 mg/kg Remicade every eight weeks....

4/15/2015 4:19 PM

Ulcerative Colitis
Why is surgery so polarising?

I knew for sure that surgery was not right for me last year. I've rarely been so sure of anything. My inoperable strictures have disappeared and I'm in mucosal remission for the first time since...

4/15/2015 4:15 PM

Ulcerative Colitis
The R Word

Oh, and I got to do the BBPS for the first time. She's collecting data. I had to do Miralax / Mig Citrate split prep. I got an 8. I know for sure GoLytely works better for me....

4/15/2015 4:09 PM

Ulcerative Colitis
The R Word

I had a colonoscopy Friday. "Overall findings are consistent with mucosal remission." The scarified strictures are G O N E. I had Crohn's Colitis for a minute on Friday, but the pathologist still...

4/15/2015 4:05 PM

Ulcerative Colitis
Pain medication?

Gas and bloating are my #1 complaint with my strictures. Have you been tested for SIBO? I was, and took abx twice for it. Then I did a SIBO protocol. From that protocol, the two things I've held on...

6/10/2014 4:24 AM

Ulcerative Colitis
Canker sores!

I have not had one since I've been on Remicade....

6/10/2014 4:15 AM

Ulcerative Colitis
Enema use in close quarters! Lol

My husband had to help me with the first few budesonide enemas......

6/9/2014 7:00 PM

Ulcerative Colitis
Any links to switching from one biologic to another due to side-effects?

Meh, I think it depends on what else is going on. My doctor won't keep me on these meds forever, and is very much encouraging surgery over trying another biologic. 98% of my colon is perfect now....

6/9/2014 6:59 PM

Ulcerative Colitis
SCD Frozen Yogurt - how to keep it soft??

Also, the top and front of your freezer are warmer than the bottom and back. Adjust things so that your 'less frozen' items are in warmer spots. If you aren't doing long term meat storage, you can...

6/9/2014 6:54 PM

Ulcerative Colitis
I hate it here

Whooohoooooooooo! He's graduated! I'm exhausted. I ate all of the BBQ & sides we had for the graduation party, then frozen custard! His deadbeat dad came back to town for graduation. It was awkward,...

6/5/2014 9:23 PM

Ulcerative Colitis
Soda consumers may be drinking more fructose than labels reveal

I have a cane sugar soda once in a while. There is a soda fountain in town that still makes the sodas, and you can get an awesome float there. I've never been a huge fan, and didn't really even like...

6/4/2014 10:49 AM

Ulcerative Colitis
Sore throat etc on Remicade?

Allergies and post nasal drip are a problem for me this time of year. However, if I do get sick, it tends to linger since I'm on Remicade....

6/2/2014 4:20 AM

Ulcerative Colitis
Dramatic and rapid weight loss - Does this happen with UC?

It was really after diagnosis that I gained weight, probably about fifteen pounds. That was the first time I've ever been on steroids, and I found that 'steroid weight' very, very hard to get rid of....

6/1/2014 2:47 PM

Ulcerative Colitis
Dramatic and rapid weight loss - Does this happen with UC?

No weight loss. Never any weight loss. Actually, it is very, very hard for me to lose weight since diagnosis. I had been slowly gaining, despite times when I had a very limited diet. I've been...

6/1/2014 10:32 AM

Ulcerative Colitis
Article: AMA introduces placebo doctors

I was just thinking, "This IS real. My first GI was a placebo doctor!" I always see the PA at my gyno. No more pregnancies for me, but a few more years of routine care. I've actually never even met...

5/31/2014 3:12 PM

Ulcerative Colitis
I hate it here

DH took away the cord to DS's Xbox. DS is now 'on a hunger strike' until he gets his Xbox back. Graduation is one week from tonight. I can run away after that, right?...

5/29/2014 5:01 PM

Ulcerative Colitis
Elevated liver counts

My liver counts wiggled around a lot for a while. Luckily my doctor was willing to work through it. We adjusted my Imuran dosage several times, then added allopurinol, and it seems to b stable now....

5/28/2014 3:10 PM

Ulcerative Colitis
would you rather ................. ?

I could give up "some" foods forever, "most" foods for a while, "all" food for a few days or so. Post-surgery diet is a major concern of mine....

5/28/2014 3:08 PM

Ulcerative Colitis
N-Acetyl-D-Glucosamine in bulk

I got Source Naturals tablets. http://www.sourcenaturals.com/products/GP1228 I just can't find any capsules in stock right now....

5/28/2014 3:02 PM

Ulcerative Colitis
N-Acetyl-D-Glucosamine in bulk

Well, my capsules arrived today, only they're tablets. Yay... :-/...

5/27/2014 4:27 PM

Ulcerative Colitis
would you rather ................. ?

Nope. I'm posting from a Kansas City hotel room with a belly full of BBQ. Giving up food would do me in....

5/25/2014 7:31 PM

Ulcerative Colitis
N-Acetyl-D-Glucosamine in bulk

I've seen industrial sized lots of the powder, but not any quantity I want to purchase. There is something going on with the supply chain right now. Everyone seems to be sold out of the higher mg...

5/21/2014 2:30 PM

Ulcerative Colitis
Retention enema base?

The budesonide enemas I had were compounded in a base of methylcellulose. How about distilled water and plain methylcellulose?...

5/20/2014 4:16 AM

Ulcerative Colitis
Prednisone 80mg IV every 6 hrs. Is it normal?

Generally they put you on oral steroids before they discharge you. You'll probably be tapering prednisone for some time. You've got to get the support med (Remicade, or whatever) working to some...

5/19/2014 6:16 PM

Ulcerative Colitis
Total Colectomy Death Rates

It seems to be about 5-6% for cancer patients and other emergency surgeries, and about 1% for 'elective' (scheduled) procedures. http://bmjopen.bmj.com/content/2/2/e000823.full?rss=1...

5/19/2014 3:32 PM

Ostomies
Retention enema base?

I am not taking any Rx enemas. In the past, I simply added whatever I wanted to the enema I was taking anyway. I have some leftover screw top enema bottles. What should I use as a carrier - distilled...

5/19/2014 4:30 AM

Ulcerative Colitis
I hate it here

DS is 17, acting 3. He grunts and says no a lot. He seriously will say, "no" every 15 seconds from the time I ask him to do something until he gets it done. He also has no problem cursing at me. DH...

5/19/2014 4:22 AM

Ulcerative Colitis
I hate it here

There are ways out, but they're not good financial decisions. The good news is that there are only nine hours left until work, and I'll be asleep for many of them!...

5/18/2014 7:47 PM

Ulcerative Colitis
is pan colitis always pan colitis

My entire colon was inflamed at the time of diagnosis. It was diagnosed pancolitis via CT scan, because my colonoscopy could not be completed at the time - the tissue was too fragile. Most of my...

5/18/2014 9:48 AM

Ulcerative Colitis
Anti-Surgery Suggestions?

I'm having a lot of luck finding NAG by itself in a powder so far. It looks like it might require splitting capsules, unless a naturopath had a powdered source? (You can get it in industrial drums,...

5/17/2014 8:21 PM

Ulcerative Colitis
I hate it here

My house sucks. I hate weekends because I'm stuck with these two rude jerks for 48 hours. Ugh, next weekend is a long one. A whole extra day with them :eyes: Haha, sounds like I am 16 and I have an...

5/17/2014 7:14 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

I had a lot of biopsies in December. No sign of Crohn's. My terminal ileum has always looked fine. No symptoms of Crohn's. I am not sure that I don't, but we've done everything we can do to check for...

5/15/2014 5:20 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

I have a protein shake with coconut oil a couple of times per week. I've tried a bunch of anti-inflammatory herbs on my own, not under the direction of any professional. They didn't do much for my...

5/15/2014 4:41 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

It is two constricted areas of scar tissue, about 5 cm apart, with chronic inflammation (the only inflammation I have, but seriously friable tissue) between them. My doctor had to use her ballon to...

5/15/2014 3:36 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

I can have a resection, my surgeon will do it, but I will keep my regular Remicade schedule if I do that. I'll be on colitis meds for the rest of my life, unless they all stop working. Then I'll have...

5/15/2014 2:09 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

I see none of the usual suspects have anything to say......

5/15/2014 2:00 PM

Ulcerative Colitis
Anti-Surgery Suggestions?

I would not rather die than have surgery, but I'd really rather not have surgery. My problem is large bowel strictures with persistent inflammation between them. Best case scenario, I've got 95% of...

5/14/2014 5:53 PM

Ulcerative Colitis
Prometheus Labs test = $2,500

Here's one from earlier in the year. Billed $11,134 Discounts $4,632.85 Plan paid $5,503.37 You owe $997.78 RemiStart paid $905 I owed $92 out of pocket...

5/6/2014 4:33 AM

Ulcerative Colitis
Prometheus Labs test = $2,500

I have the EOB for my 4/8 infusion in my hand. Amount billed - $12,094 Plan discounts - $5,592.85 Plan paid - $6,215.32 I have met my deductible and out if pocket max for 2014, so I only owe $285.83....

5/6/2014 4:28 AM

Ulcerative Colitis
Prometheus Labs test = $2,500

I paid $250 twice. I did NOT need to provide any tax forms. They did 3rd level appeals, then billed me $250 for each test. The insurance company says the test is experimental, and they'll ask for...

5/5/2014 4:16 PM

Ulcerative Colitis
allergies and nasal sprays

I'm using Nasalcrom OTC this year. Cromolyn sodium is the active ingredient....

5/2/2014 3:04 PM

Ulcerative Colitis
BIOPSY RESULTS:

My pathology report shows 'quiescent colitis' in portions of my colon that are no longer actively inflamed....

5/1/2014 4:20 PM

Ulcerative Colitis
Working while having UC (among other things)

My home life is much more stressful than my work life. I'll be on short term disability for my surgeries. I hate the idea of being stuck in the house & unable to care for myself. I guess this will be...

4/30/2014 6:26 PM

Ulcerative Colitis
What do you eat to get fatter (compatible with uc)

I'll donate some! Not lost a pound due to this disease, and actually have so much trouble losing weight that I've had to have my thyroid checked out. Coconut oil is supposed to be good for us. Whole...

4/30/2014 4:16 PM

Ulcerative Colitis
Working while having UC (among other things)

I dream about not working. I'd love to hit the lottery and retire - to travel and hike and horseback ride and take epic rollercoaster vacations :) I can't see me thriving as a disabled person. I hope...

4/30/2014 2:45 PM

Ulcerative Colitis
Ready To Move On!

There are also other options on the way. That's what my doctor keeps telling me. 'You may be on drugs forever, but it won't be Remicade.'...

4/25/2014 7:04 PM

Ulcerative Colitis
FODMAP Diet

I'm surprised you're eating ripe bananas. How many are you having? They're just awful for me. I had good luck learning what really causes my symptoms with the FODMAP elimination diet....

4/25/2014 2:56 PM

Ulcerative Colitis
Can you get fired/laid off for your condition?

There have not been pre-existing condition exclusions on employer plans since the 90s. Your employer plan is covered by HIPAA. HIPAA is a federal law that: Limits the ability of a new employer plan...

4/24/2014 7:02 PM

Ulcerative Colitis



HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.