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Newbie, looking for advice.

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Ulcerative Colitis
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/3/2021 4:09 AM (GMT -6)
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.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 5/3/2021 8:32 AM (GMT -6)
describe your flares - what does your normal diet consist of ? when was your last bloodwork done ? how many bm's per day ? constipation an issue ?


TT
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/3/2021 6:51 PM (GMT -6)
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.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/4/2021 6:29 AM (GMT -6)
I have never heard of a flare stopping just with IV fluids or dehydration bringing on a flare. Not saying you are wrong, but I never heard of that before. I have heard of getting dehydrated during a severe flare though.

One thing I have learned from reading on HW -- UC seems to be different in every one of us and treatments are different too. What works for 1 person may not work for the next. Don't be afraid of biologics if it comes to that. They aren't as bad as the worry we all go through over them. It comes down to quality of life and what works for each individual.
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iPoop
Forum Moderator
Joined : Aug 2012
Posts : 16373
Posted 5/5/2021 12:33 PM (GMT -6)
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
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/6/2021 6:15 AM (GMT -6)
Thanks ipoop. I appreciate your opinion and experience. I have to disagree with the fibre not contributing to my flare though. Having been completely stable with no symptoms a day prior. To bloody stools lasting weeks (in one instance two months. With no change except increasing Enema to twice a day. Then decreasing back to one once controlled. I’m talking years in between each flare. I’ve had proctitis since 2006. Diagnosed in 2014. I’ve had 3 flares with bloody mucous, intense abdo pains all after upsetting my digestion with food. If this were because my symptoms weren’t stable Prior why was I symptom free for years on 1 enema before and after flares. My last flare was 3 years ago. Why are my symptoms easing again increasing my enemas? My last scope confirmed same 8cm of inflammation. I guess I’ll get the answer on my scope. For now I’m slowly feeling better on the two enemas. How long can I used 2 enemas safely? Apparently this is only to control a flare.
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quincy
Elite Member
Joined : May 2003
Posts : 33250
Posted 5/6/2021 9:30 AM (GMT -6)
Enemas used to only control a flare...what exactly does that mean?

q
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/6/2021 6:59 PM (GMT -6)
Increased to 2 per day instead of 1 per day. Once symptoms are gone i only use one.
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TroubledTurds
Veteran Member
Joined : Jan 2004
Posts : 8705
Posted 5/7/2021 6:29 AM (GMT -6)

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
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/7/2021 6:53 AM (GMT -6)
Thanks TT. My GP makes a huge deal like they’re poison if I use two for a long time. I’m not sure if it’s a high dose. It’s slowly helping. No cramps occasional blood. Less urgency. Stool are becoming formed again.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1546
Posted 5/7/2021 7:32 AM (GMT -6)
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....
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quincy
Elite Member
Joined : May 2003
Posts : 33250
Posted 5/7/2021 1:20 PM (GMT -6)
The enemas...increase to TREAT a flare. This can take months depending on severity.

Symptoms will change as you heal...big learning process and patience is what you will need. Pay attention to the process.
Once things seem to be really improving, you can consider tapering the day enema.

Eventually...when symptoms are pretty much normal, tapering the night enemas (yes there is a process) to a maintenance dosage of twice weekly is recommended.

Hang tough...looking back at my 32 years has been worth the effort of using the 5ASA oral and rectal.

q
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/10/2021 4:47 AM (GMT -6)
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
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quincy
Elite Member
Joined : May 2003
Posts : 33250
Posted 5/10/2021 12:23 PM (GMT -6)
Request them...when is your c-scope? Keep us updated.
q
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/12/2021 6:11 AM (GMT -6)
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.
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quincy
Elite Member
Joined : May 2003
Posts : 33250
Posted 5/12/2021 12:00 PM (GMT -6)
Good you're having more testing. Let us know the outcome.

What is the mesalamine dosage of the enemas?

q
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/12/2021 11:33 PM (GMT -6)
I will. My enemas are 1g
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quincy
Elite Member
Joined : May 2003
Posts : 33250
Posted 5/13/2021 10:34 AM (GMT -6)
If it's Pentasa...you could ask for 2g or 4g enemas.

You are on the very lowest scale of mesalamine. So...you can request to exhaust that regimen long before stepping into immuno meds.

q
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 2148
Posted 5/13/2021 1:04 PM (GMT -6)
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
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Theanxiousaries
Regular Member
Joined : May 2021
Posts : 372
Posted 5/17/2021 5:42 AM (GMT -6)
Thankyou both. I was hoping to have some insight into some options before I have my colonoscopy! I felt this Dr was jumping straight to immunosuppressants without trying anything else. I’ve read what a lot of you all go through and I’m lucky enough not to have it so bad. Even though I know my condition is far from controlled. I’m still only going to the bathroom once every few days. Still slight bleeding. No pain. Stools are more formed. Hoping it hasn’t progressed but only a colonoscopy will rule that out. The way my pharmacist and GP act like I’m overdosing on 2 enemas lol. I think it’s just lack of experience. Most of them have to Google my medication. Even our ED has never heard of it. I have one pharmacy I get it form the rest don’t even stock it. I live in a town with a population of 90,000. My usual gastroenterologist is on leave so I’m under a new one till he returns. It’s making me nervous.
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