Newly Diagnosed.. Are my docs jumping the gun?

Hi all,
Been lurking the site but i'm a first time poster.
I have a long medical history with autoimmune issues. I was diagnosed with dermatomyositis at age 16 (i'm now 27) and have tried every med under the sun to get that under control. Finally went in to remission for that Mother's day 2016 and was taken off all meds (including long term antibiotics and Prednisone)
BUT THEN
the end of July I started seeing a lot of blood in my stool. Unfortunately I got hit with a stomach bug from work at the same time as my colon started acting up.. I lost 20lbs in 2 weeks was in bed the entire time and in and out of the ER a couple times. They put me on 40 mg of Prednisone and 6 pills of Mesalamine per day. I was not healing completely though I felt I was slowly getting back on my feet and feeling better. That lasted about two weeks. I had my bridal shower on Saturday the 9/24 and made the major mistake of drinking about 4 glasses of wine which sent me in a downward spiral. Was in major pain the next two days and hospitalized by Monday morning. They think I had an infection so they pumped me with iv steroids, antibiotics, fluids, potassium and magnesium. Basically taking a fire extinguisher to my colon to try and calm it down, because I was supposed to be leaving on a plane to go to my wedding on 10/1 (which i did make and am a married woman now!!) When I was discharged they kept me on Mesalamine as well as Metronidazole (antibiotic 1 500mg tab 3xdaily), and 80mg of Prednisone the first day stepping down to 60 every day after (which is what i'm on now). I did lose probably 10 more lbs that stay.

My gastro team wants to start me on Remicade which I was nervous about.. When emailing my doctor(physicians assistant) asking questions, she said to me and I quote "the alternative is to have your colon removed which seems extreme if we can keep your disease controlled with medication"

I feel like this has all come on very sudden and I feel like getting surgery so soon is crazy.. am I right or is this seriously serious?

Right now I am having pain once or twice during the day and at night when I can feel things passing through my colon but I'm only having 3 to 6 bowel movements per day. Only a couple are urgent. I'm working on getting my strength and eating back up. Still getting tired and out of breath.

If anyone has any advice or input I would greatly appreciate it!

I would get a second opinion. First of all, have you been diagnosed with UC or was it an infection like you said above? Two very different things. Second, why were they pumping you full of steroids if it was an infection? I have UC but was in the hospital earlier this week and they found out my current symptoms are more likely infectious colitis, so they took me OFF of steroids because the doctor said steroids won't help an infection. I am seriously confused why they are already threatening surgery for you. Have they even tried any 5-ASA meds? Your symptoms right now are very mild. I go to the bathroom 30-40 times a day with blood, mucous and severe pain when I'm in a bad flare...also crap my pants, have tenesmus, wake up all night long, etc. I have no idea why they would be mentioning surgery to you at this point or putting you on such high doses of steroids. What are you currently on...just the pred? Are you seeing a gastroenterologist?

Hi...welcome. is the inflammation throughout your colon or limited?

q

Each case is individual. We really cannot tell everything from your post, see your biospsy and colonoscopy reports in detail, know your complete case history, and so forth.

For some cases, it makes a lot of sense to get on biologics like remicade quickly, especially for those with severe pancolitis (entire large intestine involvement) inflammation, for those who've been hospitalized, and/or for pediatric cases. Biologics are quick and effective medications that are a great rescue for those who are struggling with the toughest cases of UC.

For some cases, it makes a lot of sense to max out the first class of anti-inflammatory medications (4.8 grams a day of lialda/asacol/delzicol plus a 4 gram Rowasa enema), then go to the second class of medications which are immunomodulators (Imuran/azathioprine or 6MP), and then finally go to the third class of medications which is biologics (remicade, humira, etc.). This treatment path is reserved for those with mild, easily manageable symptoms where you have time to go through each step and wait for each medication to work. Not everyone has that easy of a case.

It really depends how severe your inflammation is, how far it extends, and how you respond to lesser medications. If you have very minor, lingering symptoms then you can slowly progress up the medication ladder at a leisurely pace. If, however, you have a very aggressive case of UC then you may rush up the medication ladder much like a firefighter in response to a fire. It's all a matter of what's appropriate in your case.

The second class of uc medications, immunomodulators (Imuran/azathioprine or 6MP) can certainly be discussed. Just know they are very slow working medications, often taking three months to reach therapeutic (healing) effect. In the meantime, you'd be on steroids until they work.

The third class of medications, biologics, are much quicker working (usually in 6 weeks or less) and are often appropriate in more severe cases.

Surgery is the forth class of treatment for ulcerative colitis, and it's usually reserved for those who are non-responsive to all of the other 3 classes of medications. It's nothing scary, it's a treatment that frees individuals from the worst of UC symptoms when nothing else works. We have a number of posters who've had surgery and are living UC symptom free, and are quite happy with their outcomes. You're still fairly new at this, there are many medications and treatment options for you left to try before surgery is really necessary.

UC is very, very individual. Some have easy, well mannered cases of UC that only need the most mild anti-inflammatory medications for many decades. Others have difficult cases that quickly require the strongest medications available. Others are non-responders to all conventional treatments and quickly find surgery to be necessary (about 25% of cases). It's all a roll of the dice on which kind of case you get, not everybody gets a winning hand. Ulcerative colitis can be particularly aggressive within the first 5 years of diagnosis, and if it will spread then it will likely then.

So, you've got pancolitis and you were hospitalized. That sounds like a pretty aggressive case of UC. I would say it's reasonable to discuss biologics at this stage of your treatment. Whether you need them now or not is undetermined at this point. You'll find out for sure as you reduce your prednisone dose. Although you say you're only going 3-4 times a day, you're also still on 60mgs of prednisone. As you reduce your prednisone, it's quite possible that you'll start seeing your UC flare symptoms returning. And should that happen, then you'll know biologics are likely necessary for you.

I'd recommend reading up on immunomodulators and biologics. The Crohn's and Colitis Foundation of America has some great information on them including a discussion on the risks versus benefits, which I found particularly helpful when deciding myself:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Remicade put me into remission for 2.5 years and am now going through a minor flare. Several mods have been in remission 8-10 years thanks to remicade. I wouldn't write it off.

Nox said...
"I guess they are thinking since it is such a high dose of prednisone and I wasn't significantly better that they wanted to jump on the next thing?"

Yes, if you're not responding to high dose IV steroids then your next option is biologics as rescue, Cyclosporine as rescue, or an emergency surgery. Your gastroenterologist must've been quite worried about your case and response.

To be clear, him/her being worried about them doesn't mean they're necessary yet. High dose steroids and your other medications can be given more time to work. An unsuccessful prednisone taper would spell out in no uncertain terms that more and stronger medications are necessary.

A number of us have been in situations just like yours and avoided biologics. Some of us have needed biologics in your situation. Only time will tell. In the mean time, try to be patient, hopeful, and use some time to educate yourself about the options your gastroenterologist has mentioned. If you're like me, then you don't like surprises. I like to know as much as I can about ulcerative colitis and it's various treatment options, as it helps me decide when and at what point each is appropriate for me. As mental hurdles are often the hardest to jump, especially when there's risks and benefits to each.

Congratulations on your marriage!! What a blessing in midst of all this poop:)

It's up to you. I wouldn't go on Remicade without trying the max dose of oral and rectal 5-ASAs first. It kind of sounds like they just threw a bunch of IV crap at you before trying the first-line treatment initially. I guess maybe they really wanted to get you better before your wedding.

iPoop said...
it makes a lot of sense to get on biologics like remicade quickly, especially for those with severe pancolitis (entire large intestine involvement) inflammation, for those who've been hospitalized, and/or for pediatric cases. Biologics are quick and effective medications that are a great rescue for those who are struggling with the toughest cases of UC.

Sara14 said...
It's up to you. I wouldn't go on Remicade without trying the max dose of oral and rectal 5-ASAs first. It kind of sounds like they just threw a bunch of IV crap at you before trying the first-line treatment initially.

Two very different but valid opinions. What is left unsaid is that once you are on Remicade there is no going back. I would get a 2nd medical opinion as well as testing for a C Diff infection since that could explain why such a high dose of prednisone isn't completely effective.

IamCurious said...

iPoop said...
it makes a lot of sense to get on biologics like remicade quickly, especially for those with severe pancolitis (entire large intestine involvement) inflammation, for those who've been hospitalized, and/or for pediatric cases. Biologics are quick and effective medications that are a great rescue for those who are struggling with the toughest cases of UC.

Sara14 said...
It's up to you. I wouldn't go on Remicade without trying the max dose of oral and rectal 5-ASAs first. It kind of sounds like they just threw a bunch of IV crap at you before trying the first-line treatment initially.

Two very different but valid opinions. What is left unsaid is that once you are on Remicade there is no going back. I would get a 2nd medical opinion as well as testing for a C Diff infection since that could explain why such a high dose of prednisone isn't completely effective.

what IAC said -

**UPDATE!!!**

Hello all!
first thank you sooo much for taking the time to reply and listen and everything!
Met with my doc yesterday and it went really well!
We have decided to try the taper off of Prednisone one more time while only on Mesalamine. Yesterday I was 60mg and today I'm on 50mg for at least a week, then I'll try 40mg.

The reason for trying again is that I'm feeling sooo much better. Very minimal pain one to 3 times a day, only 2 to 4 bm per day. The night before last I slept ALL NIGHT without having to go to the bathroom. Last night I got up once. I'm trying to be really strict with the diet, because I think I was lax about it the first time around.

I'm not so much against remicade. I have been on it before for my other autoimmune disease and i'm hoping I haven't already built up a resistance to it. I think mostly I was really shocked that she was saying well its this or surgery.. But after actually meeting in person (the other communication was through email) and talking everything out I feel a lot better.

I just feel really optimistic today, starting to gain my strength back and get lots of protein to try and get my weight back up (down from 150 to 123- 5'10") I'm taking vitamins and probiotics as well. I'm trying to be a health freak now to counter any side effects or issues with diet. AND LOTS OF PRAYER.

Thanks guys