Downhill fast

janetcg2424 · Post by **janetcg2424** » Fri Apr 25, 2014 7:35 am

Although my first symptoms started over 7 years ago, the last few months have brought on a rapid deterioration. I eat lomotil like candy, but can't make it from the bed to the the bathroom in the morning. Getting ready to see my third gastroenterologist. I keep getting referrals from well-wishers that tell me the doctor they are referring is the best! Made them completely better! I get my hopes up and then I'm right back where I started from. Once the doctor sees that all tests results come back healthy, they brush me off. I've been GF, SF, DF, and EF for almost a year. I finally was able to persuade a doctor to prescribe LDN, and have been on it about 10 days, but haven't seen a lick of improvement. I hear it takes time so I figure by the time I see the new gastro I should know if it is working or not. I've given notice to my employer, and have filed for disability. A year ago, even 6 months ago, I never thought I would be at this point. I've tried so many different medications, including antihistamines. I guess the next step is steroids.

brandy · Post by **brandy** » Fri Apr 25, 2014 7:40 am

Hi Janet,

Have you tried Entocort? 4.5 months of Entocort plus diet got me headed to remission.

Are you taking any other prescription drugs? There are many drugs that will prevent remission.

Brandy

brandy · Post by **brandy** » Fri Apr 25, 2014 7:47 am

Janet,

Are you taking supplements? Most folks see improvement eliminating supplements, eliminate probiotics, eliminate digestive enzymes etc.

Brandy

JLH · Post by **JLH** » Fri Apr 25, 2014 7:47 am

YES, I saw on one of the Facebook groups, LDN took months to work for a Crohn's patient.
I pray it will work for you. :bigbighug:

janetcg2424 · Post by **janetcg2424** » Fri Apr 25, 2014 7:55 am

I currently take only the LDN and lomotil. Lomotil is the only thing I have found so far that will give me a little relief, but it is getting less and less effective and if I eat during the day, it has no effect at all. I've tried the following: cipro, flagyl, xifaxan, questran, vsl #3, over the counter probiotics, antihistamines, calcium, immodium, pepto, tryptophan, and many other vitamins/supplements/fiber. I do 30 minutes of yoga every morning. The only stress I have in my life is this illness. Everyday gets worse.

JLH · Post by **JLH** » Fri Apr 25, 2014 7:56 am

From IBD and LDN FB group. "
Jeffrey LeVine

19 hrs · North Bergen, NJ
.Hey all. Been awhile since I have spoken in here. I wanted to let everyone know some good news.

I went to my GI last week and found out that I am in remission. I have LDN to thank for this. Nothing had really helped me before LDN. As great as that news was though, it wasn't the best.

I was an experiment for my GI. Before me he had never heard of Naltrexone, especially for IBD. After dong his own research he decided to try me on it. I was a guinea pig for him. Now, 2 years later he is thinking of putting other patients on it.

I feel I helped bring LDN to Mt Sinai in NYC. I am sure he will talk with other GI's there and let them know just how great it is. This could be the start of something great."

janetcg2424 · Post by **janetcg2424** » Fri Apr 25, 2014 8:00 am

How long before you saw improvement from the LDN?

Heady · Post by **Heady** » Fri Apr 25, 2014 9:24 am

Sorry to hear this flare up has you in distress. Glad you have found our site. I joined the site April 1st. and the folks here,their genuine concern & experience has given me my life back after job loss & 6mths of diarrhea.
Exactly what else are you eating/drinking? Are you keeping a diary?Are hormone levels stable? I ask because my med. problems showed up as soon as menstrual cycle ceased and then job stress blew up my life. Have you had recent colonoscopy to see if previous diagnosis has changed? Do you have any other hidden symptoms/maladies? My MD ordered ab.ultrasound to ck ovaries and found I have thickened walls of gallbladder. There are many brilliant minds that visit this site regularly, are terrific sounding boards and are a wealth of information. Keep in touch, be patient, try tweeking your diet to see if you have some added trigger foods that were not there previously. Best of luck with your next GI appt.

Leah · Post by **Leah** » Fri Apr 25, 2014 9:42 am

Welcome.
If you haven't tried Entocort ( Budesonide), I would straggly suggest that you do. When I was first dx, I changed my diet completely and went on Entocort. I was on it a total of 6 months. If you get a doctor willing to prescribe it, please know that it seems that it needs to be taken at least 4 months and the dose needs to be slowly weaned down. Really slowly. Many doctors don't seem to know all of that.

If you are still eating any RAW FRUITS OR VEGETABLES, stop! Beans and legumes are also a big problem.

If you are taking an antidepressant or PPI, they could be the cause of you not getting better. Same with NSAIDS.

Please know that we have all been there and are here to help any way we can.

Good luck

Leah

Gabes-Apg · Post by **Gabes-Apg** » Fri Apr 25, 2014 1:26 pm

Sorry your days are crappy...... Times like this it feels like you are the only one dealing with such chronic symptoms.
Giving notice on your job is a huge step.

In line with Leah's post/questions about foods and meds, ensure there is no legumes, NSAIDs, ssri meds.

There is no quick fix for mc, any 'good' med for helping MC can take weeks, (for some 2-3 months ) to settle things down.
All the med changes alone are enough to cause D, even for a non MC patient.

My suggestion, try to relax, give the LDN the chance to work.
Stick to a bland minimal safe ingredients eating plan, and reduce the inflammation.

Hope things improve.

MICROSCOPIC COLITIS SUPPORT

Downhill fast

Downhill fast

a post from the guy who said LDN took months to work for him