When is it time to give up and go on medication?

I could use some feedback as to what is normal or remission. I was diagnosed with UC four months ago and coloniscopy showed that it was a severe case all through my intestinal tract and colon. I was treated for it with prednisone and both rectal and oral anti inflammatories. The doctor said at that time that the condition was so severe that my only option was Humira and to come back in a few months and get started. As my body functions return to mostly normal I chose to wean myself off of all of the medication. I have been medication free for a month, and my next GI appointment is in a week. In the meantime I have watched what I eat, taken Boswelia and VSL#3, and gone for acupuncture once every ten days.

I have no pain. I have relatively normal bowel movements at normal times of day, no surprises or emergencies. I do tend to have bleeding a couple of times a week though. I am having some other auto immune symptoms, such as a few red pimple like blotches in the fatty areas of my skin and a couple of rash like bumps on the underside of my eyelids.

Is this how people feel when they are in remission? Is a bit of bleeding normal? From reading this forum I get the impression that even on medication these symptoms can happen. My issue is that I am not ready to jump on the pharmaceutical bandwagon just yet, but I don't know what "normal" is supposed to feel like with UC. My doctor seems to want to go from zero to Humira after one office visit and I just don't feel like I'm doing so badly on no meds that I want to completely supress my immune system.

Any feedback would be appreciated

I spent 23 years straight in a flare from moderate to mostly severe and wasn't on meds cuz I was either allergic or non-responsive to them, I have crohn's colitis which is crohn's affecting the colon, it also affected my rectum on and off and at the beginning of being sick, my small intestines as well. I finally got on Humira because I developed a recto-vaginal fistula and biologics tend to be the best remedy for those, it also finally put my CD inflammation in my colon and rectum in remission as well.

When you are in remission it's not normal to have diarrhea or bleeding, just because you feel "better" doesn't mean the damage isn't being fierce in your intestines doing a lot of damage. Although a biologic may not be the right med at this point it very well may be in your future....if you're not comfortable with how your GI wants to proceed then you should definitely discuss it with him/her, if you still don't feel comfortable then it's a good idea to get a second or even third opinion. Normal should feel the way you did before getting sick, nothing less.

You should be on some maintenance meds though regardless if you "feel" good, because you're definitely flaring if you're bleeding unless it's from a hemorrhoid so if your GI isn't willing to start you on oral meds and possibly rectal meds and wants to jump right into biologics it could be because some GI's are more aggressive than others, you need to work with a GI you're comfortable with though.

Agree with previous posters.

Fluff said...
I could use some feedback as to what is normal or remission. I was diagnosed with UC four months ago and coloniscopy showed that it was a severe case all through my intestinal tract and colon.

Answer to your topic question: right now.

What gets me is that you weaned yourself off the safest UC meds of all - the 5-ASAs. What gets me even more is that they appeared to be working. You've just made it far more likely you'll need to go on Humira (or another biologic). You have what's known as pancolitis (inflammation of entire colon). It is, or at least was, severe. Basically, your type of UC has the worst prognosis. It is the type most likely to end in surgery.

At the least get back on the 5-ASAs. And avoid pred, 'cos that med will do you no good in the long run at all.

I agree with everyone. I was symptom free for 11 months with no blood, no urgency, no diarrhea. Could eat anything and felt great.

Had a colonoscopy and it showed light inflammation and my crp was slightly elevated. I stayed on mesalamine. My dr recommended remicade in April. I was getting married in June and didn't want to change course and he agreed it could wait since I had no symptoms.

Boy was I wrong! 2 weeks post honeymoon ended up in the hospital for 3 weeks. Had a flare out of no where. Woke up one day and suddenly the poop gates opened. Been flaring a month and now waiting out 3rd remicade infusion.

I will only consider myself in remission with a clear colonoscopy and low inflammation markers.

I agree that you should never get completely off of medications, but get a 2nd opinion about going directly to Humira. Humira may not be necessary if the oral and rectal medications were working. Which mesalamines (5-ASAs) were you taking?

Almost all UCers, whether they believe in diet modification or not, find that some foods can trigger symptoms. Dairy and gluten (wheat) are the usual suspects but it could be any food. So you may also want to keep a food diary to isolate any problematic foods.

pb4, no i meant ibs or hemmies. i had bleeding when i was a teen and their were no hemmies or inflammation. the GI said very hard poops can cause it.

Ha, the "pharmaceutical bandwagon". You remind me of me. I resisted at first, too. It was stupid and I wasted a lot of time.

I'm glad, the melamine-based anti-inflammatory medications are very safe and help reduce your odds of colorectal cancer. The average uc patient is young and 100 percent healthy before getting uc. So, it's a difficult pill to swallow that you are now sick for life and need medications for life, we've all been there. That and the lialda/asacol are big pills that are literally hard to swallow heh.

On the humira, I would insist on a flexible-endoscope before going on it. You may need it but usually a patient has severe symptoms (6+ bms a day) and their scope shows really bad inflammation before it's prescribed.

Some doctors are giving humira automatically to the patients with the most severe cases, and that might be your case. Other doctors start with the anti inflammatory medications, try immunomodulators, then biologics (humira) last.

I think everyone has already addressed the folly of dropping meds so I just wanted to add not to drop the acupuncture either.

The only remission periods I have ever had have been while doing acupuncture. But I am such a skeptic that I start to convince myself that it couldn't really be working. How could a bunch of needles stuck in certain points heal the body? It doesn't make any sense. I have since stopped questioning it and really try to go every 10 days too.

I'd ask your doc for scope to get a better handle on how severe the inflammation is, regardless of your symptoms. If your inflammation has improved from severe to moderate or mild, start with mesalamines and rectal meds. If those don't work, you can always try immunomodulaters, then biologics.

Also, on steroids, talk to your doctor about Uceris and Entocort. They're steroids, but they release locally rather than systemically. They help some people and seem to create fewer crazy side effects.

If your inflammation is still severe, remember that failing to address it could lead to something like surgery or colon cancer. You can always stop taking medication. You can't get your colon back once it's removed.

That's good to hear Fluff! IBD is a life-long chronic illness with no cure, so if you can tolerate meds then take them, some of us have been allergic or non-responsive to them as a result, have lost years of any type of normal living as a result and speaking for myself it wasn't worth the anxiety and depression and anger issues as a result of being housebound for many years.