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when to panic?

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Ulcerative Colitis
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Posted 6/27/2014 12:31 PM (GMT 0)
I've been in remission the past few months, which I largely attributed to going primal at the end of January. (I had tapered meds according to my GI, and symptoms had come back quickly and did not dissipate after a week of full strength, whereas the first time I started meds I noticed a difference in one day) and I'm just finishing my first whole30 - although I'm not following the autoimmune protocol as it never seemed too necessary for me.

(My UP has always been "mild" compared to a lot of posters on this board). Yesterday I noticed a streak of blood on the surface of my BM, and was hoping it was just an irritation. However, this morning as well there was a little blood on the TP and a clot of blood in the toilet bowl as well. My BMs have normally been about once per day since remission & going primal, although the past few days maybe anywhere between 1-3 times a day. No crazy urgency more than the normal need to poo. My current meds are salofalk 1000mg supp. 3x a week. (I used to be on cortifoam in the am, and 4g salofalk enemas nightly).

How soon do you start to panic and up the meds again? Should I try the AIP first or bypass foods and go straight to medicating? I really hate meds although accepted them somewhat as a necessary evil for maintenance.
Posted 6/27/2014 1:01 PM (GMT 0)
Your seeing an increase in bms and the blood wasn't just a one day thing nor does it sound like its from hemmies. Up the meds now and get it under control before it gets bad.
Posted 6/27/2014 5:05 PM (GMT 0)
Are you sure going primal and Whole30 is working? If not you might want to re-evaluate. Nobody likes meds but I haven't met a person yet that likes UC.
Posted 6/27/2014 6:30 PM (GMT 0)
You should be on both oral and rectal maintenance....low dosage oral of maybe 2400mg.

Regarding your symptoms NOW....get back on the enemas for a few weeks till symptoms stop...see how you do and taper eventually to maintenance enemas. You might be able to use the supps for maintenance....

for now, you're flaring. it's not a panic thing...just lower the bar for your tolerance and start recognising your symptoms with a greater understanding of what's going on.

Keep us posted how you're doing.
q
Posted 6/27/2014 6:33 PM (GMT 0)
I thought it was, but now I have no idea. Perhaps I need to reintroduce probiotics and fish oils, which I'd been forgetting and then avoiding during the whole30. I have leftover enemas and cortifoam as well. I'll start the meds again tonight to try and nip it in the bud. Sigh... Nice while it lasted.
Posted 6/27/2014 6:34 PM (GMT 0)
Also- my GI told me oral meds are pointless for me since my inflammation is limited to the very end of the tract- rectum only. Thoughts?
Posted 6/27/2014 6:40 PM (GMT 0)
Who originally put you on the oral Salofalk?

q
Posted 6/27/2014 6:50 PM (GMT 0)
My family doc, while I was waiting to get in with my first GI. (I didn't like him much, so I switched after 2 appointments). Both GIs shared the same viewpoint however.
Posted 6/27/2014 6:59 PM (GMT 0)
When was your last c-scope?

q
Posted 6/27/2014 7:00 PM (GMT 0)
Should I call my specialist ASAP or try the medication route doing what I was doing before first?
Posted 6/27/2014 7:13 PM (GMT 0)
Scope was September last year.
Posted 6/27/2014 7:18 PM (GMT 0)
it was a c-scope and not sig-scope?

I'd....at the very least....request the salofalk 4g enemas nightly with lots of refills :-)

q
Posted 6/27/2014 7:27 PM (GMT 0)
It was a full colonoscopy. I can't remember exactly but I feel like it was 5cm at the very end in the rectum- hence being classified as proctitis rather than colitis.
Posted 6/27/2014 10:40 PM (GMT 0)
I *think* I have tons of repeats on file since I fr a huge script right before I was switched to the suppositories. The first GI Doc did a sig in-office both in December and January and said there was nothing going on at that point (despite still having symptoms 1-2 week at that point...). He was the one who told me to taper anyways, and the bleeding came back with a vengeance. I want back full strength and a week later was not improved, until I went primal. This is why I am confused and frustrated. I've been doing strict whole30 for 27 days now which is supposed to heal- and it comes back instead!!! This is the most frustrated I've been with this disease. So bloody unpredictable. (Pun intended)
Posted 6/28/2014 12:35 AM (GMT 0)
It's not unpredictable...your expectations are somewhat unrealistic and you believe food will heal it. It won't. I'm not saying stop a specific diet that you deem good for you...I'm saying don't believe it's a replacement for meds. (you've already proven it from my perspective)

if all your biopsies (and I still suggest you get a copy of the pathology results) were free from any changes that may be "abnormal" anywhere in the colon including the cecum...which could mean very mild inflammation, then you should be on an oral 5ASA, albeit a mild dosage to help keep it nice and calm.

Did you recently go through a phase of constipation, hard stool, etc? if yes...that's your first symptom of proctitis flaring. It's also a symptom of healing the other way around...which still means some inflammation, so continuing meds during that phase is always a good thing.

I'd still suggest the enemas, and you can concentrate the medication with the nozzle by drawing it back to that area after initial insertion of fully in to coat the entire area.
As well, you could use the suppository during the day to give it another boost of med.

Just FYI...it's a most difficult area to heal....so hang tough. You're in a huge learning curve and will eventually get it figured out regarding meds, dosage and maintenance. It took me 3 years of many "aha" moments..

q
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