Inflammation Spreading - Normal?

Hello, I had my second colonoscopy a few weeks ago. Originally, I was diagnosed with colitis and inflammation in my lower colon. However, I had a bad flare starting in May 2018 until I think now (?) which caused my inflammation to spread to my entire colon. I was on Delzicol for a long time, but after my doctor saw the state of my colon, he pulled me off of it and put me on 4x 800MG of Asacol.

I have a couple questions because I only got diagnosed a year and a half ago, and this is all still new to me. My current state involves going to the bathroom 1-2 times a day, with instances of 3 times on rare occasions. I do not have any blood, mucus, or such in my BM. On instances, there is a case of urgency, but I usually find it's linked to when I'm nervous (I do sales, so before meetings). The only noticeable symptoms I have is like a sour stomach without any diarrhea, but I'm able to pass gas (which to me is a great sign).

1) Is it common for your colitis inflammation to spread?
2) Can the inflammation reduce and go back to just my lower colon?
3) Am I in a remission?

It's been so long I don't remember what it's like to be 'normal'.

John,
Thanks for your responses. Is there a way to test inflammation levels without doing a colonoscopy? I just started my Asacol medicine a few days ago; does it typically take weeks to kick in?

Delzicol and Asacol are the exact same medication.... why would he pull you off one and put you on another? I was on Asacol the first 8 or so years I had this and then they stopped making it in the US and replaced it with Delzicol. What country do you live in that you can get a generic? If you aren't having symptoms, it sounds like you're in remission.

Sara14 said...
Delzicol and Asacol are the exact same medication.... why would he pull you off one and put you on another? I was on Asacol the first 8 or so years I had this and then they stopped making it in the US and replaced it with Delzicol. What country do you live in that you can get a generic? If you aren't having symptoms, it sounds like you're in remission.

The scope just a few weeks ago showed active pancolitis. How in any way shape or form is this remission?

It sound like symptoms don't closely track underlying inflammation in this case. Be vary careful of any appearance of clinical/symptomatic remission. Some problematic inflammation may still be there.

Hi....were you just on the suppositories from May 2017 till when?
q

If you have a pancolitis, then ask about maxing out the mesalamines. That is 4,800mgs a day of oral mesalamine and then 4,000mgs a day of mesalamine within a retention-enema.

The phrase "mild" has no bearing on you having an easy time of it or not. What really matters is how quickly and well you continue to respond to your medications.

Often pancolitis patients need much stronger medications than mesalamine. You might need thiopurines (azathioprine/imuran/6mp) and/or biologics (remicade/humira) in your near future, if the maxed-out mesalamines aren't sufficient.

DBwithUC said...

Sara14 said...
Delzicol and Asacol are the exact same medication.... why would he pull you off one and put you on another? I was on Asacol the first 8 or so years I had this and then they stopped making it in the US and replaced it with Delzicol. What country do you live in that you can get a generic? If you aren't having symptoms, it sounds like you're in remission.

The scope just a few weeks ago showed active pancolitis. How in any way shape or form is this remission?

It sound like symptoms don't closely track underlying inflammation in this case. Be vary careful of any appearance of clinical/symptomatic remission. Some problematic inflammation may still be there.

What are you talking about and why are you always so rude? The poster did NOT say what the scope showed and they said they aren't having ANY symptoms except a "sour stomach." Take your rude anger out on someone else. I'm sick of seeing it all over this forum.

Are you in the USA? Overall, the cheapest options for us are Basalazide Disodium or Sulfasalazine as they are both inexpensive generics. Sometimes the discount cards help, like the one for Apriso if you are not already on it.

Here's a longer post I have in resources, about getting the most affordable mesalamine.

One of the biggest headaches when switching health insurance policies is you might have to change medications. Here's a basic survival guide to help you through it.

1.) Ask which UC medications are on the insurance's formulary (preferred) list and which are on their non-formulary (not preferred) list. For the lowest out-of-pocket cost, choose from the formulary list.

2.) Generics are the most cost effective. Brandnames are more expensive.

3.) Use the health insurance's price estimator tool (online insurance website, or call insurance, or ask a pharmacy) to learn what your copay will be. You will need to know which medications are applicable. The most common meds used are the anti-inflammatory, mesalamine-based medications that should be available in their price estimator:

• Apriso is brandnamed, comes in 375mg pills, a typical dose is 1,500 mgs or 4 pills daily. A copay assistance card is available from the manufacturer http://www.aprisorx.com/apriso/savings-card.
  
• Balsalazide Disodium is generic of Colazal, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  
• Colazal is brandnamed, comes in 750mg pills, a typical dose is 6,750mgs or 9 pills daily.
  
• Delzicol is brandnamed, comes in 400mg pills, a typical dose is 4,800 mgs or 12 pills daily. A copay assistance card is available from the manufacturer http://www.delzicol.com/resources/savings-card/
  
• Lialda/Mezavant is brandnamed, comes in 1,200mg pills, a typical dose is 4,800 mgs or 4 pills daily. A copay assistance card is NO LONGER available from the manufacturer, discontinued on 11/1/2017 and will not be renewed into the next year.
  
• Mesalamine DR is generic, comes in 800mg pills (generic Asacol HD) and 1200mg pills (generic Lialda), a typical dose is 4,800mgs. That's 8 of the 800mg pills or 4 of the 1,200mg pills daly.
  
• Pentasa is brandnamed, comes in 500mg pills, a typical dose is 4,000 mgs or 8 pills daily. A copay assistance card is available from the manufacturer https://www.shire.com/patients/patient-services/shire-cares.
  
• Sulfasalazine is a generic,comes in 500mg pills, a typical dose is 4,000mgs or 8 pills daily.
  

A reference on costs for those various meds: https://www.goodrx.com/aminosalicylates
4.) Once you've found a cost effective medication, call your gasteroenteroligist for a new prescription.

5.) Mail order prescriptions may have lower copays when you get a 90 day supply, instead of a 30 day supply. Check with your health insurance and ask about mail order options.