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I feel like I've tried everything, I need some help. Here is my story.

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Ulcerative Colitis
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Posted 6/21/2012 4:28 AM (GMT 0)
Sorry this is long but here goes...

I have had UC since I was 15, but experienced symptoms around 12. Over the years I have tried all the standard UC medications and nothing seems to work for me. Even 60mg of prednisone couldn't kick my inflammation. At my worst I was going to the bathroom 30x a day, with unbelievable pain and nausea all day and night. I started Remicade in 2009 and I thought it was the permanent solution to all my UC troubles. After the two starter treatments I noticed improvement and lived COMPLETELY symptom free...until now.

From March-April I experienced blood off and on. I stopped drinking alcohol and avoided my trigger foods (lettuce, nuts, raw veggies, fruit, greasy food) and got my Remicade treatment in hopes that it was just a small slip up and everything would be ok. By the end of April the blood was constant. 1-3x a day, no urgency, no D just blood...every time. I scheduled a scope and my GI said it was proctitis. I immediately started hydrocortisone suppositories, with no change. Then I tried Canasa, within 2 days that made everything WORSE. Then I tried hydrocortisone enemas for 3 weeks, no change until the 3rd week and it started making symptoms worse. By now I was due for the Remicade again and the doctor upped my dose to 7.5 mg/kg.

I am still experiencing bleeding. Sometimes urgency but for the most part this is manageable compared to how sick I was a few years ago.

I'm at a loss. I don't know what to do next. The Remicade doesn't seem to be working. I'm going to continue it for now beacause I am fearful that the Remicade is what is keeping me from a full blown pancolitis attack. Suppositories didn't work. I've tried drinking probiotic drinks, slippery elm, vitamin e, fish oil, aloe, chinese herbs. I've tried wheat free (I tested negative for celiac), I am currently limiting dairy (no change).

Any suggestions or similar stories would really be appreciated. :)
Posted 6/21/2012 4:50 AM (GMT 0)
Well, the good news is your doc can up the medication to 10mg/kg this is the top. So you got that going for you. The bad news is that your body has developed anti-bodies to the medication. Remicade is not forever unfortunately. Sooner or later your body adapts.

You can try diet changes: gluten/dairy free...

I'll let the rest fill you in with...
Posted 6/21/2012 5:12 AM (GMT 0)
First, let me say I know exactly how you feel. Everything was going along great for a few years and then bam! Flaring off and on for the last 2 years. I hate how it is a constant battle of meds not working anymore/ dietary slip ups, etc..

In regards to your situation, I also do remicade..which I would never stop. (had it today)

Different ways of playing around with it to see if it will work better for you is to shorten the time frame between infusions. I started out going every 8 weeks, then 7 weeks, and now I go every 6 weeks. Another way, is the dosage can be upped. And another thing I get when flaring is an extra shot of prednisone thru the IV. (I don't take it orally, bc dr feels it is unsafe to be on it a prolonged amount of time, and i had been on it quite a few times in the past. But even when I was otaking it orally I would sometimes get the extra dose. Bad side is the next day I'm usually completely backed up, bloated.)

In addition to remicade, I would take a look at your maintenance meds. For me, it is supposed to be remicade every six weeks, and 7.5mg methotrexate weekly. And using rectal meds during flares.

Sounds like you have certainly tried your fair share of different things. I wouldn't give up or say that those will never work for you. But it sounds like you are in a very, bad state which you need something hardcore to give you a boost up the ladder. Get it a lil more in control and then be able to maintain with the things mentioned above. I would definitely suggest getting in touch with your dr to get some help immediately.

I certainly wish you all the best.

I know the feeling of despair.

(I've been telling my mom often lately, I just want to go somewhere and scream at the top of my lungs to get all the frustration out. ...but that so isn't me. That's why I am so grateful for this forum.)

PLEASE let us know what you end up doing...helpful or not.

Posted 6/21/2012 11:35 AM (GMT 0)
When Remicade quit working for me, my doctor wanted to put me on Humira.  I developed antibodies to Remicade and apparently Humira is different.  My insurance company wouldn't approve Humira for me so I never did go on it.  You might want to ask your doctor.  Mary
Posted 6/21/2012 11:51 AM (GMT 0)
When the Remicade didn't work on me I had no choice but to have j pouch surgery. I was going 30x a day with lots of blood, vommitting, and terrible pain. I was steroid refractory so I only repsponded to a mega dose of IV steroids. As soon as I would go down to the oral and start a taper all hell would break loose. Haven't looked back since surgery. I'm living a full life UC free. I wish I had some words of wisdom for you because I know how terribly scary and frustrating this disease is. I'm just grateful that surgery gave me my life back and I am off all drugs.

Hopefully someones suggestions here will help you. What about LDN? It sounds like it has helped a lot of people. Best, best wishes to you.
Posted 6/21/2012 12:08 PM (GMT 0)
Neon,

Sorry you are having problems getting back to being in remission, and suffering so.

Somedude is right about developing antibodies to remicade.

The celiac test is not accurate, it can give you false negatives. And then you have to factor in that some people are gluten allergic and some are gluten sensitive, and there is a difference. Gluten sensitive would be that you get symptoms from eating gluten, i.e. joint pains, gut problems, D, pain, etc...( and many of those test negative for celiac despite the resulting symptoms after ingesting gluten).

How long did you go gluten and wheat free? Also, don't forget there are many hidden sources of gluten as well ( in sauces, ketchup, mustard, etc...).

I would suggest you go back to the basics, and tweak a few things:

- go on bowel rest for a few days to give your colon a rest

- then start a food journal to see what correlations arise

- probiotics and lots of them, are you taking any? VSL#3?

- can you get your doc to prescribe VSL #3DS?

- how often are you taking the slippery elm? and when?

- have you tried L-Glutamine and L-threonine amino acid powders?

- how about LDN , low dose naltrexone?

Although meds failed me, I didn't go as far as the biologics. When it got to that point and the doc told me remicade or surgery, I refused both. At that point, although the SCD diet was controlling the BMs quite a bit ( I was down to 4-5 x per day from 15-20 x per day), I was still bleeding ALOT. And the only thing that stopped the bleeding was LDN, low dose naltrexone, which has put me in total remission.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

 

If you would like more info on anything here, or if there's anyway I can be of help, please do not hesitate to ask.

 

I hope you start feeling better soon, and getting this under control. Good luck.

 

Posted 6/21/2012 6:16 PM (GMT 0)
You havn't tried everything... I'd try 4000 ui of vitamin D, melatonin, low fat rice based diet and kale juice (or some sort of cruficurous juice). That's the best advice I have. Keep searching! Everything has never been tried!
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