Newbie, looking for advice.

Hello Everyone. I’m new to this forum and looking for advice or helpful information. I was diagnosed with Mild proctitis in 2014. 8cm of rectum. Initially I was given 1g Pentasa suppositories. One per day. This was later reassessed and changed to 1g enema with much better results. I have been mostly stable since with the occasional flare after consuming excessive fibre. Usually I control these with 2 enemas per day. I’ve never used steroids or any other medication except pentasa enemas. Something I’ve noticed, hydration via drip can stop my flare and dehydration can bring on a flare. If I don’t drink atleast 2litres per day I can go into a flare. Does this happen to anyone else? Also my Dr said fibre cannot cause a flare? This has not been my experience. I’ve had a flare from consuming excessive kidney beans and can get terrible pains from eating baked beans more than 3 days in a row. I’m currently in a flare which was bought on from not drinking water. The 2 enemas are slowly controlling it. A little better each day. My Dr wants to add oral pentasa and if this fails try immunotherapy. My question is. Isn’t there something before immunotherapy? It seems drastic. I’m considering changing Drs. I’ve just started supplementing with saccharomyces boulardii probiotics. Other than that I haven’t tried any alternative medicine. I Will be going in for scope to find out exactly what’s changed. I really just want some advice on my options before I go back to my Dr. Thankyou in advance.

Blood cramps diareah usually 1 BM a day. No constipation. I eat fairly clean, lean chicken veggies, protein shakes, usually drink only water. One coffee. It’s after I get lazy (usually when it gets cooler) and forget to drink. I start getting cramps. I’ve gotten out of my worst flares with intravenous fluids. Do oral meds cause gastritis? I remember taking them briefly and started to feel slight burning in my stomach. I have acid reflux or low acid not sure which. It’s hard to tell, now I’m stuck trying to withdraw from PPIs because they said I don’t have reflux. It could be rebound. Once I ate half a tin of kidney beans and put me into a flare, Pryor to that I was having 1 BM a day, fully formed soft stool. No blood. Another time I juiced too much ginger (my worst flare) within an hour I new I’d used to much. Again controlled the flare with intravenous fluids. All of my flares have been related to food or lack of fluid. I think the Dr is jumping in the deep end too early. I’ve only ever used 1G pentasa enemas. I would try FT before immunosuppressants. My Dr is at the CDD with Thomas Barody. My usual Dr is on 6month leave. It’s been a 3 weeks on 2 enemas and no cramps, almost no blood and stools are starting to become normal again.

Insufficient hydration doesn't cause flares. Nor does eating too much fiber. A flare is a persistent worsening of your symptoms lasting months. You might get temporary upset from top much fiber, pain bad bowel movements but that will clear up in 48 hours or less from that event.

If your Inflammation is undertreated, then maybe you're unstable symptom wise with random ups and downs they you're correlate to those events?

Yes, normal to add oral mesalamine to rectal-route, when rectal-route is insufficient in Ulcerative Proctitis patients.

Yes, it's anti-inflammatory mesalamine or immunosuppressive meds with no in-between. I know the concept of immunosuppressive meds is initially frightening. However, I've been on thiopurines (azathiopurine, imuran, 6-mercaptopurine) and biologics (remicade) together and lived to tell the tale lol.

You're not a bubble boy or girl, nor do you have to be a germaphobe. It slightly lowers your immune response to illness and infection. Meaning a cold's symptoms hit you fast with dramatic symptoms upfront, and it lasts a few days longer. It feels like you're hit by a bus. You recover, nothing extra to do.

You're always welcome to get a second opinion. But there are no hidden middle steps

Enemas used to only control a flare...what exactly does that mean?

q

Theanxiousaries said...
For now I’m slowly feeling better on the two enemas. How long can I used 2 enemas safely? .

as long as they are helping, keep using them forever, adjusting as needed -


TT

Oh good grief, they are the safest UC meds you can find. Also are you under care of a gastroenterologist/GI? GPs aren't really qualified to treat UC....

Thanks everyone. I guess I’ll see where the colonoscopy takes me. Hopefully it hasn’t progressed. I will definitely discuss the addition of oral meds

I’m having all the stool tests done now. Calprotectin, c diff then a colonoscopy . 3months wait in public health. Stool are forming intermittent. One formed movement every two or so days, otherwise watery stool occasionally when passing gas A lot less blood, no abdo pain, it’s mostly gone. I feel like it’s a fine line, It could go either way. I will request the oral meds before colonoscopy.

I will. My enemas are 1g

Agree with Quincy. Max dosage for Mesalamine is 4800mg oral and 4g rectal each day/ You can be on both oral and rectal at the same time at the max dosage for each safely, so you have lots of room to explore this before trying a higher tier of drugs