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Ulcerative Colitis
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Posted 7/16/2017 4:27 AM (GMT 0)
Hello all,

I have been reading posts on this site for about a month now and I really appreciate all the help I have received. However, most of it hasn't worked and I was wondering if I could get more specified help. I'll start with my background:

I first noticed blood in February 2016 and I was embarrassed to tell my parents. I thought it would just go away, but it didn't. I finally told them and we went to a doctor blah blah blah CT scan colonoscopy everything. But it was all normal. After the colonoscopy, the blood went away and life was good. Until about December 2016. Doctor started me on lialda and it worked for a little bit but then it got bad. The pain in February 2017 was so terrible. I was living in a dorm at that time (college student) and I would get up and run to the restroom every hour at night. My roommate was probably tired of it. The pain was unbearable. I was perpetually tired. I got tired walking to class, going up stairs, etc. I ended up going to the emergency room and they gave me prednisone 40mg for a week. Didn't work at all. Went back to the emergency room a week later and they admitted me to the hospital. The GI doc there wasn't that great. He just put me on iv steroids and I left the hospital in just as bad condition as I was when I got there. The next couple weeks at home (spring break) were me basically learning how to walk again and using that newfound leg power to go to the restroom. I was living on peanut butter bagels because that's all they allowed me to eat at the hospital. A couple weeks later my actual GI doc got me started on remicade. Life was so good. As an Indian, I missed my spicy food. I could eat it again. I felt like a human again. The rest of the starter doses went fine, but in the middle of May, two weeks after my last starter dose, I saw blood again. Then the pain came back. Then the urgency. I've been on this flare for two months now with no end in sight. My doctor doubled my remicade dose for my infusion to 10 my/kg (it was on July 3) in hopes that it would help, but it didn't at all. That scares me because I don't want to fail remicade.

And that's where we are today. I've been trying to eat healthy and the same things I ate that helped me before, but nothing is working right now. I've tried those nasty vegetable juices, drinking Gatorade, fruit and veggie diet, and even a week of gluten free. Right now, I eat puffed rice with turmeric, peanut butter sandwich, goldfish, watermelon, yogurt, banana, and avocado toast. Some days are better than others even if I'm eating the same thing every day.

My doctor just sent the blood test to see if I can take imuran, but I don't know if I want to add it or not. I see everyone's signatures with a bunch of medicines and I just don't know if I can handle all of them. I obviously want to get better but I also want to minimize the medicine I'm taking. They also take a while to start working and I would love to be better before school starts again.

My family and I are brand new to this disease and any help would be appreciated. All of my knowledge has come from you all and the rest of the Internet. I have no idea how I got this disease but it would be great if it went away just as mysteriously as it arrived.
Posted 7/16/2017 10:40 AM (GMT 0)
I always feel so bad for you very young people who are suffering through this. I didn't get hit with this until I was 60 and close to retirement age. As I read your post I am confused as to why your doctor put you on UC meds when you say your scope came back negative. Did he test you for any other bacterial infections like C-Difficile?
Maybe Quincy or IPoop can comment on this as they have a wealth of information and background on UC and may be able to point you in the right direction.
Posted 7/16/2017 1:07 PM (GMT 0)
Remicade did not work for me until I was switched to 10mgs/kg every 8 weeks. It worked great for me for almost 5 years.

I'd ask to get your Remicade blood levels checked.

It sounds like your GI is taking the right steps, it is a trial and error to find the medicine that works for you. There are some great new medications out there. Many more than when I got diagnosed with UC.

I would also recommend getting tested for C.diff like Nana suggested.
Posted 7/16/2017 3:26 PM (GMT 0)
What you are eating at this point won't in all probability be affecting your level of disease. I think your priority is to increase your medication, or change to another before things progress and the disease becomes unmanageable, as it is frightening how quickly that can happen.
Posted 7/16/2017 4:33 PM (GMT 0)
if iv steroids did not help, you should consider possible sugury
Posted 7/17/2017 3:53 AM (GMT 0)
I also failed Iv steroids and also had a flare 4-5 months after starting Remicade. I added imuran, pushed my remicade closer to 6 week intervals and that did the trick. I didn't have any difference ins side effects by adding imuran. But keep in mind it can take 3-4 months to see its full effect.
Posted 7/17/2017 4:55 AM (GMT 0)
Also a young person here, diagnosed just before my 21st birthday. I haven't really figured out how to live with this disease yet. I take Lialda 1.2mg, 4 pills in the morning and 40mg prednisone with a 5mg/week taper.

I usually wake up and within 1 minute will have extreme cramping & urgency which resolves itself with a bowel movement. Then I go take my meds and will feel fine after 30 minutes or so. I usually feel fine for 10 hours after which cramping & bowel movements happen every 2 hours or so until bed.

So it seems after being on meds for nearly a month I'm not making much improvement so I definitely relate to feeling defeated. Keep us posted on what ends up working for you because I feel like I might be on the same path.
Posted 7/17/2017 6:08 AM (GMT 0)
the 40mg pres could show some benefit in 30 minutes. Lialda cannot. It will not release until out of small intestine. It is possible the relief is from the morning BM

good luck
Posted 7/17/2017 10:43 AM (GMT 0)
FYI, GameDevAlex, when I was flaring and was having the urgency first thing when I would wake up along with several bloody BMs all day and night, my GI doctor had me on same 40mg Prednisone taper and that didn't cut it. As I got down to the 20mg, I began getting worse again so he immediately started me on the 60mg per 7 days each with a taper to 10 mg. He did a scope when I was at the 10mg and then started me on the Lialda at 2/day and after 4 weeks increased it to 4/day, along with Canasa each night. It took me a good six months before I could really say I felt like I was feeling more normal again. Oh, and I split the Lialda up to 2 pills in morning or before noon and another 2 pills at dinner and use the Canasa at bedtime.

I have been on the Lialda now for one year along with nightly Canasa and make sure I don't miss taking these meds consistently. I do feel that the Lialda doesn't work immediately but after you are taking it for a long time (6 months and beyond), you may finally see a difference. I know everyone is different with this disease but I do feel we need to give this medication time to heal the ulceration in the colon because open sores from what I've been told and what I've read cause the urgency and bloody diarrhea.
Posted 7/17/2017 2:48 PM (GMT 0)
Start the Imuran, but expect to wait 2-3 months for an improvement.

Ask your gasteroenteroligist about a infliximab/remicade minimum (trough) concentration and antibody bloodtest. Prometheus labs out of CA invented that test, still charges a premium for it, and here's more info on it Anser IFX test:
https://www.anserifx.com/about.aspx

However, Labcorp and other labs can do a generic version of that test that is just as good.
testmenu.labcorp.com/test-menu/infliximab-concentration-and-anti-infliximab-antibody/a1948211-4072-4432-8b80-43eea8d3e682

The test will tell you what is the minimum amount of remicade in your system 24 hours prior to your next infusion and that is helpful with dosing. Low concentrations mean you do not have enough remicade and your dose needs to be increased.

The test will also tell you if your immune system has developed any antibodies that would make remicade less effective or even stop working entirely. If you have some antibodies then a simple dose increase could work to counteract it. Very high antibodies could mean switching to another tnf-alpha-blocking biologic like humira or simponi would be effective for you.

High concentrations of remicade and zero antibodies would mean that you've failed remicade and likely that entire class of biologic medications. In that eventuality, it would be smart to change to another class of biologics like entyvio. Stelara is off label but another option.
Posted 8/1/2017 9:54 PM (GMT 0)
Updates:

I started Azasan (same as Imuran) and got severely nauseous. Took it for 5 days and ended up in the ER to rehydrate myself (too much vomiting and diarrhea). They tested for C diff and did a bunch of blood tests as well. Everything was normal.

I haven't been able to eat food. Just the thought of food makes me want to hurl. My doctor wants to give one more shot at Remicade before switching to Entivyo.

Any thoughts? Opinions? Anything would help, even on things to eat after the nausea goes away.
Posted 8/2/2017 1:15 AM (GMT 0)
Your situation sounds similar to mine--I'm sure it's not exactly the same, but I can sort of understand what you're going through.

I was diagnosed in August of 2015 when I had just turned 22--have tried the oral mesalamines, rectal mesalamines, sulfasalazine, hydrocortisone enemas, pred, humira, entyvio, remicade, etc.

I was probably at my worst a little over a year ago when I tapered off prednisone. I'm currently at a place where things aren't great, but they aren't terrible either. I probably go about 6 times a day, not really any blood, experience urgency, can sleep through the night, my weight is stable, etc. Other than my gastrointestinal problems, I feel fairly good.

I'm currently taking sulfasalazine and am thinking about giving imuran a shot. The only med I take is the sulfasalazine. I'm trying out some other natural remedies to see if those provide any relief, before I start exploring surgery more in depth.

So I don't mean to scare you by summarizing my situation, just want to give you some insight on what has helped me out a little.

The main thing that has helped me has been watching what I eat. This is easier said than done. I had a food allergy test done (the accuracy of these tests is debated), which helped me hone in on foods that I might react to adversely. I've cut out gluten, dairy, eggs, peanuts, sugar, processed foods and there might be some others I'm leaving out here.

I've been able to stabilize my condition through refining my diet. I also lift three times a week and have found this has helped me feel a bit better too.

I've heard that some people have been able to cope with the nausea associated with imuran by taking it at night. So if you're not doing that, perhaps consider it.

At this point I'm probably rambling. Not sure if any of this has helped, but here's a tl;dr of some takeaways:

- perhaps consider taking your imuran at night to cope with your nausea (if you're not already)

- perhaps consider taking a food allergy test. I went to a functional medicine doc for this (test was somewhat pricey and the accuracy of these tests is a point of contention, but I feel it's helped me eliminate problematic foods)

- perhaps ask your doctor about trying another oral mesalamine. I've heard that some people do better on certain brands than others. None of them helped me, but it's just something to maybe consider.

I hope you find something that helps you. Hang in there.
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