Hi, looking for some advice regarding these symptoms!

Hi everyone, joined today after spending many days browsing the forum and seeing all the great support. Looking forward to being part of the community.

Let me explain my history so far, sorry for the long post!

From as long as I can remember Ive always been quite constipated and usually go once every 2-3 days. I also get bloated a lot of have a ton of gas that seems trapped inside most of the time causing discomfort aswell as cramps.
Back in 2015 is when suddenly I started seeing bright red blood on the toilet paper and also on the stool. Along with mucus. I had a full colonoscopy that year and they saw nothing at all and put in down to IBS and internal hemorrhoids. I took some medication and it went for a while, however the constipation and bloating stayed.

This time last year I had a sigmoidoscopy only after going back to docs because the blood came back, along with mucus. Sometimes I would even go to the toilet thinking I needed a BM and just mucus came out, yellowish (sorry). After the test I was told all I had was inernal hemorrhoids and given a stool softner and hemmie cream, it all disappeared until last September.

So in September I started getting it all again, blood, mucus. The bloating and gas seem to be always there. This time I had a couple bouts of diarreah, but then can go 2-3 days without BM’s and be constipated again. I went to a new doc this time and he initially had a feel around and said the blood looked to be from hemmies and because my previous colonoscopy and sigmoidoscopy were great he didnt want to do another, so I started taking something for that. The softner halped me go more often and I didnt wipe blood but ocassionally say it on stool, felt as if it was simply not so visible because no straining.

By the way, sometimes the blood actually drips into the bowel, usually if I had strained. This is also why the doc assumed it was hemmies. Also sometimes the mucus is like white and fluffy in the toilet ( I assume thats mucus)

2 weeks ago all back so I went back again, this time he had a little look with the camera even though I hadnt prepped and the images this time were a lot different from previous ones! It looked red and inflamed, he said there were little white spots and thats why his initial diagnosis is rectitis, awaiting confirmation from biopsy.

I was put on salofalk enemas which I took for 10 days and had an appointment to see him again, during this time on Salofalk I held it during every night and I was having formed BM’s except one day where I couldnt hold it for more than 15 mins and had really bad diarreah..then 2 days not going and constipated again!

Now Im about to start Claversal suppositories.

I have made an appointment for food allergy tests in case something is triggering it..


I guess my question is, is this normal sounding ulcerative colitis? Is there anything similar to UC that causes this?

I definitely want to improve my diet and ordered the SCD book.


Thanks for making it to the end of the post!
1Wish

Post Edited (1Wish) : 3/28/2018 5:43:44 AM (GMT-6)

Blood in still is always a good reason to investigate. It's possible you have an infectious-colitis, or perhaps an IBD like UC/Crohn's and both have overlapping symptoms that are nearly identical. However, you need clinical evidence to support which it is. Infectious-colitis is a lot more common, and IBD is rare.

Do you have a family history of IBD?

Have you had a stool test for possible infectious causes to your symptoms? There's infections like C Diff that can explain what was seen.

Let's see what the biopsies show. Seeing blood in stool, and red and inflamed tissue makes an IBD possible but the biopsies really determine whether it is a chronic condition like IBD/UC/Crohns or whether it is a one-time infection, like infectious-colitis. Those of us with IBD have permanent architectural changes to our intestinal cells due to repeat periods of healing and inflammation over the years.

A UC diagnosis needs the following tests to make an accurate diagnosis:

1.) A stool test negative for pathogenic causes

2.) A colonoscopy report

3.) Biopsy report from that colonoscopy

If you have a storybook case of UC then your stool test comes back negative for pathogenic causes, you have obvious inflammation (fraibility, erosions) and ulceration beginning at your rectum that goes continuously and stops. Your blood vessel pattern appears erratic during the colonoscopy (that's a chronic architectural change). Your biopsy report states "chronic active colitis," notes cryptitis, crypt abscesses, crypt branching (chronic architectural change), and infiltrate of WBCs.

A storybook infectious-colitis/cdiff case would have a positive stool test for pathogenic causes, show obvious inflammation that is patchy, show "active colitis" in the biopsy report without mentioning "chronic".

Both cases would exhibit blood during bms, (possibly urgency or diarrhea), and various abdominal discomfort/pains. The only difference is what's seen within the stool test, and during endoscopy and within the biopsy samples when looked under a microscope.

constipation can be a symptom of UC - but from everything you have said, it doesn't sound like UC -

what have you been eating the last month ? what has been your regular diet forever ? have you made any recent changes diet wise ?

can you describe what foods you call junk and what foods fall under the category of well ?

do you eat meat, potatoes, vegetables, fruit, dairy, grains, etc, etc, etc ?

how much sugar ? how much water ?

the nice thing about changing up your diet is you don't need a doctor to do it ----- no appointments, no waiting, no meds, no pay -------

if you can find the source of the problem (possibly your diet) and put a stop to it, time is still required for healing -

I have an appointment to get an allergy test on the 11th and hopefully the biopsy results next week.

Today after the constipation, blood and mucus moment. about 6 hours later felt like I needed a BM but just mucus/slime and blood came out.. not nice at all really

1Wish

"if Im taking Pentasa for 3 weeks until the colonoscopy, wouldnt that modify the actual images or the severeness of this? Wouldnt the medicine have treated some if not most of it by then and may appear less severe?"

No harm in taking your anti-inflammatory mesalamine-based medications at flare-dosing leading up to a colonoscopy. When we flare, we want to hit out inflammation with a one-two-knockout punch, and shut off the inflammatory process for a couple months to put it into a deep remission state. Thereafter, inflammation may not occur at all during our remission with/without meds, however, a reduced maintenance med is recommended as an insurance policy, to treat any future inflammation that might reoccur/popup.

If/when you are confirmed in a remission then you can always decrease from flare doses to maintenance dosages. It takes more medications to initially achieve a remission than to sustain it.

No worries, for each question there is an answer:

"Is there a reason for this aside from preventing a flare?"
Yes, we all flare eventually but hopefully not for years (2, 3, 5, 8 years). Scientific studies show that those who are complaint to their maintenance medications both when feeling well and when feeling badly, have the best odds of having the longest possible remissions, most infrequent and mild flares. So, it's an FYI to give you the best odds of success.

"Does the body not become immune to the medication if taken so often?"
You cannot become immune to these meds, some of us have been taking them daily for decades and they work as well now as the day we first took them.

"Curious to also know what/who confirms remission, do you just “know”?" Flares are hell and remission is pure bliss. You know you're in a symptomatic-remission when you are no longer worrying about bathrooms, are free of UC symptoms, and go about your day without giving even a passing thought to having an UC. For me, a remission is 1-formed bm a day, without any signs of urgency, blood, pain/discomfort, etc. You're essentially normal again.

Having clinical-remission is achieved by having a colonoscopy or flex-sigmoidoscopy and finding no signs of active UC either visually or microscopically through biopsy analysis. It's good to know, but often a symptomatic-remission is sufficient (if you feel well and are having no problems, then why suffer through a gallon of nasty tasting prep, and the scope?).

Hey 1Wish, keep me updated if you could. Your story sounds similar to me. I am waiting for the biopsy results from my scope.

I'd wait on the biopsies for final results. Regardless, you'll need stronger and more medications to treat your IBD as inflammation was still seen during your scope.

You could give it more time as well. What exactly are you taking now, what are the doses, and how long on them? Generally takes 3-4 weeks for anti-inflammatory mesalamine to work and treat the majority of the inflammation. To heal fully can take a couple months on those meds.

Often symptoms tell you whether it is working. Also stool tests like FCP or blood tests like CRP that test specifically for inflammation can tell you whether there is any inflammation left. A colonoscopy or flex-sigmoidoscopy is like having perfect 20/20 vision, but those other means are often accurate enough to know what's going on without us having to drink a gallon of yuck prep and under go an invasive scope.

Good progress at least.

If you need an extra boost, then there's no reason to not use both the enemas (salofalk, pentasa, rowasa, mesalamine retention-enemas) and oral pentasa at the same time. It could help as our most severe inflammation is always within the rectum, the oral pills do not treat the rectum consistently and effectively, and the enemas go straight to it. Rectal inflammation causes our worst symptoms, so treating that effectively is a good boost in quality of life.

SCD like everything that's UC, it has no guarantees of working for you. For some it helps, for some it does nothing, and for others it makes their UC symptoms a whole lot worse. Try and see. For that reason, I'd say it is no closer to treating a cause then anything else is. If you're interested in diets then here's a good read that discusses the research available about the various diets tried for UC. /www.dietvsdisease.org/ulcerative-colitis-diet/