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Colitis flare for 10 months now...HELP!

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Ulcerative Colitis
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Posted 4/24/2015 2:01 PM (GMT 0)
Hi,

This is my first post. My fiancé has been wanting me to do this for a while. I was diagnosed with ulcerative colitis about 8 years ago. Once they figured out what it was and put me on some meds for it, I was okay for a while. A few years later, had to have two blood transfusions and was put on a few more meds. Well, last year, starting in July, I experienced a terrible flare. It has not gone away. I have been to the ER multiple times, and was in the hospital for a week recently. My doctor started me on remicade in February and I had my third dose in March. I have blood and diarrhea every day, along with lots of body aches and stomach pain and now I have also been throwing up constantly, (for about a week now). I am on around 12 different meds. Tramadol for pain, citalopram for depression, culturelle, multi-vitamin, Canesa, Lialda (four a day), Iron Pills (because I am anemic) to name a few. I am getting married in October and I am terrified that I am not ever going to feel okay again. I cannot remember the last time I got through one whole day just feeling alright. I need some advice on what has worked for you. Anyone take remicade? How long did it take for it to start working? Anyone have the throwing up issues? How did you fix it??? Any insight would be very much appreciated.

Thank you!!!!!
Posted 4/24/2015 2:08 PM (GMT 0)
I'm sorry you are so ill. It doesn't seem like the remicade is helping. How many times have you been on steroids so far?

Have you been tested for c. diff?

Welcome to the forum.
Posted 4/24/2015 2:22 PM (GMT 0)
I was on steroids from July thru October and then again from the end of November thru January. Towards the end the steroids weren't helping at all unless I was taking 40mg of it per day and it was causing me so many other issues. And actually when I was in the hospital in March they did find that I had c. diff :(. I ended the antibiotics for that a few weeks ago. I see that you started gluten free in "11, my fiancé thinks I should change my diet, but we just aren't sure to what because right now I can't really handle any types of food.
Posted 4/24/2015 2:26 PM (GMT 0)
I think you should go back and get tested again for c. diff. It is possible that you have relapsed.

I have found a GF diet to be helpful but in your situation I don't think this will be the solution.

If your disease is refractory to steroids and not responding to biologic meds then I think the next option is probably surgery. I'm sorry if this is not what you want to hear. A person on this forum recently had a temporary ileostomy to stop a flare (surgical bowel rest) and it worked really well for her. You might want to visit the ostomy forum and talk to those people about their experiences with UC and surgery.

You can try and elemental diet (talk to your DR). You can consider fecal transplant, especially if you have c.diff again - this is probably the first thing to talk about with your GI.

I'm so glad you found this forum and I'm sure you'll get other support quickly. But I would call the GI today and ask for a c.diff test again.
Posted 4/24/2015 2:38 PM (GMT 0)
Ditto on you might have had a cdiff relapse, get tested.

Remicade helps 60+ percent of uc patients. I noticed a small improvement a week after my second infusion. I noticed a much bigger improvement a week after my third infusion. I noticed slow and steady improvements thereafter. I reached remission (that is, no uc symptoms, and 1 nonurgent bm a day) after a year on remicade. Before remicade, I was steroid-dependent and having regular accidents, it pulled me out of a yearlong flare up. I've never had any nausea reactions.

Diet modifications don't always work (didn't for me). Right now, I'd focus on getting your uc symptoms in order before adjusting your diet.
Posted 4/24/2015 5:24 PM (GMT 0)
There are a lot of things to consider before surgery in addition to the stuff mentioned above. You should read through this forum to find all of the natural stuff that can at least help with UC (supplements, probiotics, etc). Additionally, if Remicade fails, you can give the new drug Entyvio a try as well. Failing all else, there are always clinical trials you can try.
Posted 4/24/2015 9:13 PM (GMT 0)
Ditto on the c-diff. It is not a disease where you take antibiotics for a couple of weeks and poof it is gone. It can be a big battle to finally win.
Posted 4/25/2015 1:33 AM (GMT 0)
i wonder if the oral iron is making you throw up. it made me. i had to get iv.
Posted 4/25/2015 3:29 AM (GMT 0)
Hi jrb, sorry to hear of your suffering. I think you're on too many meds that are not absorbing in your body right now. There's no way. Also, one should be careful of supplementing with iron because its a little inflammatory on the body and may exacerbate a flare up.

I would start fresh by seeing a new doctor considering the all of the meds your on, your current doc has no idea what he's doing other than adding fuel to a fire.

Start by giving your body some rest by intermittent fasting, bone broth soup for a while and no sugars, very low residue, low fiber diet. Eliminate dairy completely if you can. Look into supplementing with 6grams of curcumin daily, add aloe vera juice 9oz daily, VSL#3 DS probiotics (900billion live bacteria per sachet) and rest, rest, rest.

Best of luck to you.
Posted 4/25/2015 10:17 AM (GMT 0)
I am jrb's fiance and I appreciate all the feedback! I'll let her know to check back here and read everybody's comments. We were both pleasantly surprised by the knowledge of the new doctor and he brought up a lot about what was mentioned here. It almost seemed like he was angry with how the previous doctor was treating her.

Anyway, he said to stop taking everything. He said the multivitamin and the vitamin D she was taking was fine and that she'll be 'reintroduced' to the Remicade treatment because of long pauses in the treatments. He thinks she has had Cdiff this entire time and is retesting. He also mentioned she could qualify for clinical trials of the Entyvio. He will be sending blood work to Prometheus labs as well.

He did mention that the oral iron is more of an irritant and if she needed iron it would be through IV. He also mentioned nicotine might help? Never heard of that but I see in some sigs now about the patch...
Posted 4/25/2015 12:06 PM (GMT 0)
Nicotine has the best odds of helping if the patient was a smoker, quit, and then got uc.
Posted 4/25/2015 2:55 PM (GMT 0)
Search for super juice me on YouTube you may find it interesting it's a documentary with Jason Vale
Posted 5/1/2015 8:40 AM (GMT 0)
I took Remicade for around 8 years to battle my symptoms. It wasn't until I started taking painkillers daily that I became 100% symptom-free. I haven't had a bloody stool in close to 2 years now. Before, I could never have been able to say that!
Posted 5/1/2015 11:22 AM (GMT 0)
Please know that juicing can make some UC'rs much worse
Posted 5/1/2015 1:47 PM (GMT 0)
KH: What painkillers did you start taking? Tylenol? Also, how often? Once a day? Are you on any medications
Posted 5/1/2015 3:14 PM (GMT 0)
He's taking the real stuff, Vicoden I believe he said.
Posted 5/1/2015 11:15 PM (GMT 0)
Using opioids for flare control can cause narcotic bowel syndrome. My GI doc does not prescribe for that reason.
Posted 6/2/2015 1:04 PM (GMT 0)
Hi all,

Thank you for all of your comments and well wishes!!! I ended up back in the hospital for a while but am now back at work! YAY! I am currently on prednisone again, but am tapering off. ( I hate being on this stuff!) Went to see my doctor last week and he wants me to start combination therapy of remicade and Mercaptopurine. Has anyone done this? How has it worked for you? I am nervous to start the mercaptopurine because I read all about the bad things that could happen. He thinks it is my best option to not build up antibodies to it. Any thoughts?

Thanks!!
Posted 6/2/2015 1:27 PM (GMT 0)
He is correct. For many Remicade stops working after 12 to 24 months if not taken with another immune suppressant.
Posted 6/2/2015 3:38 PM (GMT 0)
Yes, I'm on combination therapy of remicade and Mercaptopurine (or 6mp for short).

Yes, 6mp helps prevent your body from developing antibodies to remicade. Remicade is a bioengineered protein, designed to block an immune system signaling protein called tnf-alpha that your immune system uses to say "hey, start inflammation over here." One remicade particle binds with one tnf-alpha particle, they pass out of your body and inflammation is avoided. Your body can create an antibody protein that binds with remi proteins that prevents remicade from doing it's job. Being on combination therapy with 6mp makes that a lot less likely to occur.

This combination got my uc into remission, the only time it's happened for me.

It's all about risks versus benefits. Remicade has 60 percent odds of improving your uc symptoms. Side effects are statistically rare. The most concerning side effect of biologic medications is lymphoma which has odds of 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. Your odds of death due to heart disease are 1 in 5, in a car crash are 1 in 133, so we're talking really small odds. The Crohn's and Colitis Foundation of America is the source for these statistics:

Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 6/2/2015 3:50 PM (GMT 0)
Thanks for the statistics and the information! I guess I will be giving this a try :) Getting married in October so I really really really want to feel somewhat normal for that day!

Thanks again!
Posted 6/2/2015 5:28 PM (GMT 0)
be careful with narcotics they slow downt the GI tract and can cause toxic megacolon
I was in a hospital that did not know how to deal with IBD and they were loading me on morphine and delottid (spelling?) as well as many other medications that made it worse
my sister insisted i be transfered to a different hospital and she very likely saved my life when I got there my colon was terribly swollen and it was about to rupture (or have a perforation)
the best strong pain medicing for IBD patients is Tramadol (Ultram) and tylenol
if those are not strong enought they can give something like ativan to help with pain induced anxiety- it may also help you sleep
feel betteer and congrats on your engagement
Posted 6/2/2015 6:15 PM (GMT 0)
Oh wow I am so sorry you had to go through that! Thank goodness for your sister! Narcotics can be bad, when I was in the hospital they were giving me A LOT of morphine and it was causing my blood pressure to plummet. At one point it was at 82/46 or something like that. Although morphine and hydrocodone make my pain go away completely I am trying to just use Tylenol or worst case the Tramadol.
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