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Ulcerative Colitis
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Posted 7/26/2017 3:40 AM (GMT 0)
I was diagnosed with UC in February. My doctor had me on 3 Lialda and every other day Mesalamine enemas. Well the urgency ceased, but I have more blood. They increased the tabs to 4x a day and the enemas to every day. Same issue. I missed 2 days of enemas, but took the tabs. Flares decreased almost 80%. Went back on enema and today it was as if I was having my menses. Ugh! Dr. wants me to do Inflectra. I'm so confused and embarrassed. Could I be allergic to Mesalamine or maybe misdiagnosed? Help...please.
Posted 7/26/2017 1:35 PM (GMT 0)
The process of getting the right medication combination takes time - a lot of trial and error. It's different for everyone. if the enema's are not working for you, then you should follow your doctors advice and try something else to get the bleeding under control.
Posted 7/26/2017 1:42 PM (GMT 0)
"Could I be allergic to Mesalamine or maybe misdiagnosed?"

yes and yes - strange tho that it helped when you didn't use the enemas cuz the oral and rectal are for the most part the same med - but you may be allergic to the sulfites in the enemas - some folks are - the good news is there is a sulfite-free version - please ask your doc about them before you move on to the inflectra -

you could also ask for a short round of prednisone just to settle things down -

so overall, how have you been doing since February ?
Posted 7/26/2017 3:19 PM (GMT 0)
It is best not to confuse flare with symptoms. Your symptoms decreased 80%. A flare is a fairly sustained period of inflammation due to underlying UC, the symptoms the flare causes vary day to day.

I wonder if you are not reacting to the sulfate in the enemas. Do you have the generic or the sfRowasa (sulfate free) version?

I would try a sulfate-free enema before the biologic, but the standard f care is trending toward early use of biologics when not responsive to mesalamines.

good luck
Posted 7/26/2017 4:48 PM (GMT 0)
Good Morning!

Thank you for all of the incredible feedback. The enema is Mesalamine (5-aminosalicylic Acid). I don't know if this is the sulfate version, probably is. It is in the white box with the blue and purple. It says Perrigo. I have sent a note to my PA asking his thoughts on this since he prescribed it to me. He mentioned prednisone, but we were trying not to go that route, plus I am already experiencing some of the side effects that provides. DBwithUC, thanks for the clarification. I am very disciplined on the pills. On the enemas, I missed a night (basically too tired and lazy). The next night I remembered and that next day was horrific. I am also taking a multi-vitamin, turmeric, iron and Vitamin D and a probiotic.

I'll let you know what the PA says.

Thanks.
Posted 7/26/2017 5:40 PM (GMT 0)
How long on the enemas nightly? And what were you on before that as schedule?
q
Posted 7/26/2017 6:01 PM (GMT 0)
I have been on them since February 2017. The first month it was 1 a day. Then he decreased it to 1 every other day. When I started having worse symptoms, he increased it back to 1 a day. Since being on them I have maybe missed a total of 10 sporadically.
Posted 7/26/2017 6:03 PM (GMT 0)
What were your symptoms before starting them and what were they when you improved?

What's the extent of your UC....limited to where or throught?

q
Posted 7/26/2017 6:20 PM (GMT 0)
Q,
So here is my full story. I started having extreme urgency. I thought that was due to my protein shakes (whey). I would have to rush to the restroom after a meal or it would sporadically pop up. I switch my shakes to a vegan version and it seemed to be fine. Months later, I was seeing some blood in my stools. At first I thought it was a scratch because it was not and lot and it was consistent.

Fast forward, when the bloody stools became consistent (if I had to visually measure it, the amount was less than an 1/8 tsp and not in every stool only in the mornings), I went to my doctor for a physical. She recommended a colonoscopy.

The colonoscopy appeared to show signs of a UC on the left-side, but it was not widespread. Early signs. That is when I was put on the meds.

Now with taking the tablets AND enemas, I am in the restroom at least 3 times every morning before I leave for work. When the symptoms are bad, I will have three more times during the day and maybe 2 at night. Yesterday was a good example, during the day I had to go every 2 hours. Basically sitting and contracting (which is odd). I must have lost about 1/2 pint of blood yesterday alone. That is what happens when I remember to do the enemas.

When I don't do the enemas, I don't have the urgency and the amount of blood loss is far less. It may be 1/4 tsp for 1-2 movements.

See what I mean?
Posted 7/26/2017 6:36 PM (GMT 0)
that doesn't sound like a diagnosis - but maybe it is ?

how much, how long, and what type of iron ?
Posted 7/26/2017 9:31 PM (GMT 0)
TroubledTurds...

First, how long have you been doing a grain free/paleoish diet? It is hard to switch over?

Second, the doctor's exact words after the colonoscopy were...

"YOU HAVE INFLAMMATION OF THE LOWER COLON, SUGGESTIVE OF ULCERATIVE COLITIS.
"BEGIN THE MEDICINE I'VE PRESCRIBED.
"WE WILL CALL AND ARRANGE AN OFFICE VISIT WITH ONE OF MY ASSISTANTS."

That's when I started the 3Xday Lialda.

As I look at the medical notes, I found this doctor and PA lingo:

Colonoscopy 1/25/17:
FINDINGS: Left sided colitis typical of CUC, from anus to about the splenic flexure
FINAL DIAGNOSIS:
Colon, sigmoid, endoscopic biopsies:
-- Colonic mucosa with focal cryptitis and crypt abscesses, basal
lymphoplasmacytosis and minimal architectural change.
(See Diagnosis Comment).

DIAGNOSIS COMMENT:
The histologic differential diagnosis includes diverticular disease
and early inflammatory bowel disease. Clinical correlation is
required.
Posted 7/27/2017 12:05 AM (GMT 0)
Sounds pretty conclusive of UC from the previous post. Have you had stool tests to rule out pathogens that could be present in addition to UC? If you have a GI bug and UC, it's hard to treat the UC because often the bug is causing symptoms and you're not treating the bug so you think the UC isn't improving even when you're using proper treatments.

Your situation with mesalamine is interesting too. You had luck with the tablets, but you think the enemas are giving you issues? Or you think you may have an intolerance to both? I don't think sulfite free enemas are a bad idea, but you could also try suppositories instead to see how that works for you, or worst case, you could try steroid enemas to see if those give you a better result. The other option might be to try something like Uceris before considering more serious drugs, like inflectra. Sometimes you need something to get things headed in the right direction and then you can maintain with the mesalamine tablets. There is also another med called Balsalazide that may work better for you since you have left sided and you're not confident about your response to Liada. May be worth a try before moving up the ladder. Iron tablets are also notorious for causing GI upset. Trying some type of restrictive diet may be worthwhile too, and adding probiotics.
Posted 7/27/2017 2:05 AM (GMT 0)
The sulfite-free rowasa (sfRowasa) is in a lavender colored box, and it can be a challenge to get a hold of, but that is what I use. I would consider trying pred or hydro-cortisone enemas for a while. Your symptoms on a bad day are what my worst flare up was like and the cortenema works very well with little systemic steroid absorption.
Posted 7/27/2017 10:09 AM (GMT 0)
Pretty standard biopsy results for UC.

"Minimal architectual change" that single line alone yells IBD, as a chronic condition we have permanent architectual changes to our large intestine. A normal large intestine has an orderly and predictable pattern of small blood vessels (aka capilaries). Repeat patterns of inflammation and healing distorts that pattern and can make it chaotic and random. The cells themselves change, get thicker walls to protect themselves from a hostile, inflammed environment and just look darn weird.

"focal cryptitis and crypt abscesses, basal lymphoplasmacytosis " this line yells UC. A normal large intestine is full of peaks and valleys on the surface like waves in a pond. The valleys are known as crypts and they're of particular interest in UC cases as they're nearly always weird. Crypt abscesses (your valley is filled and clogged up with unexpected junk, predominantly immune lymphocites or WBC) are characteristic of UC. Cryptitis (inflammation of the crypt) is also common in UC. Basal lymphoplasmacytosis is also common with UC. No ambiguities here, it's pretty clear cut.
Posted 7/27/2017 12:10 PM (GMT 0)
First flare and UC diagnosis in June. Lost 20lb and hospitalized. I stopped Lialda and Apriso and within days felt a lot better. I was definitely having a bad reaction to messalamine. No bleeding and urgency stopped. Only on 40mg prednisone now and stable. Back to work and eating almost normal
Posted 7/27/2017 12:30 PM (GMT 0)

RyanC said...
First flare and UC diagnosis in June. Lost 20lb and hospitalized. I stopped Lialda and Apriso and within days felt a lot better. I was definitely having a bad reaction to messalamine. No bleeding and urgency stopped. Only on 40mg prednisone now and stable. Back to work and eating almost normal

Ryan, I will be interested to see how everything goes as they taper you off of the prednisone. Have they mentioned when they will start doing that?

At first I thought I was having negative reaction to mesalamine, too, but decided to try them again and this time it's ok. I still have the steroids sitting in my medicine cabinet (just in case).
Posted 7/27/2017 1:44 PM (GMT 0)
Yea I'm starting my taper down Monday and doctors ordered Remicade. Really nervous about the Remicade but seems to work well from others experiences.
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