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Ulcerative Colitis
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Posted 6/6/2017 3:05 PM (GMT 0)
Hi all. I'm a new member but have read several UC posts before joining. Finally decided to join because this forum seems so helpful and motivational.

I was diagnosed November 2016 with "lower end ulcerative colitis" with most inflammation being in the rectum and sigmoid colon. A year of hard bloody stool prompted me to finally go to the doctor. After the colonoscopy and the diagnosis coming back as ulcerative colitis, of course I researched like crazy. It made no sense to me that this was my diagnosis with the description of UC symptoms being diarrhea (and I had none). Further research showed me that every UC case is unique and some people experience constipation as well, especially with mild lower end UC. I have had bloody/mucosa stool and constipation. However my colonoscopy came back as internal hemorrhoids and a fissure as well, so then again the blood could be coming from that. Doctor prescribed a two-week steroid and apriso taken 4 times a day along with nitroglycerin ointment for the fissure. I did this and the apriso caused severe cramping so I stopped taking after a month. Doctor prescribed another meslamine medication and I refused. Later on doctor suggest I may also have IBS-constipation.

Things that confuse me:
-Most UC research leads me to supplements and foods to stop the diarrhea (BUT I DON'T HAVE DIARRHEA)
- What do you do if you have both UC and IBS-constipation if you read to do one thing for one and it contradicts the other??
- I don't know when I'm in a flare or remission because I always have bloody stools and occasional cramping
- How often do I need a colonoscopy?? I know that longstanding inflammation can increase the risk for colon cancer and that scares me
- the unknown: WHERE IS THE BLOOD COMING FROM?? It seems to be on the outside of the stool but I had a stool sample taken earlier this year by another doctor anyway. Results showed everything was fine and blood work showed WBC was elevated. I was told this meant "infection was somewhere else in my body but it was minor"

I love NATURAL. Hate all the side effects of meds my doctor wants me to take. I've found great help through herbs. Started with turmeric, then a soothe and smooth, and currently just taking CLT-X for spasms (its GREAT huge difference without it) and nightly probiotic to help replace gut bacteria and hopefully regulate bowel movements. Though I still feel I need to alter my diet. Trying gluten free this week!

Looking for UC & IBS-constipation friends! Any answers are greatly appreciated & thanks for reading!
Posted 6/6/2017 4:05 PM (GMT 0)
I had many of the same concerns as you. I didn't have diarrhea either. Think of UC as a broad spectrum of diseases, not just one disease. You will have different symptoms than someone else with the condition. In remission, you won't have any symptoms at all, at least for me. Once every two years. Mesalamine will prevent cancer-inducing inflammation. Tissue in your colon has eroded away leaving open sores or breaks in the mucosa membrane. This causes bleeding and mucus in the stool. A flare is when new damage occurs or previous, to put it in simple terms, scabs break open. In remission, the tissue heals. I wouldn't supplement medicines for natural remedies. Like anything else, I'd take natural remedies that wouldn't conflict with my treatment and approved by my doctor, but I may be on the conservative side with that. Altering your diet and probiotics will help. I have used turmeric in my food, and my symptoms have improved.
Posted 6/6/2017 4:24 PM (GMT 0)
CS, I feel the same way I do not have the frequent BM like others and mine are well formed as well. I have had the stomach pains though. Also like you I do not want to be on a million pills for the rest of my life in particular the steroids I was prescribed. I believe the body has a miraculous way to heal itself, how in our case I am not sure yet. In the meantime I am taking some of the less invasive drugs that cause the inflammation to be reduced which I have been told compare to aspirin.

I ordered my first book online just starter one to get more information on the disease, then after that I am going to read up on some natural alternatives to help. The big thing that worries me/I don't understand, is outside of getting checked by your doctor through a series of tests, how do I know if I am in remission/my treatment plan is working? Is it enough to just not have the symptoms?
Posted 6/6/2017 4:42 PM (GMT 0)
Thanks GoToGoFast! Finding an understanding doctor, whom I also understand, is a problem of mine as well. So approving things with a doctor is not happening right now as much as I wish it was.

YoungSuffererCanada we sound a lot alike! The body is an amazing thing and natural alternatives reason well with me. I saw a quote on here earlier, "Nature holds all the locks, nature provides all the keys." I really liked that. And exactly, how do we know if all is going well??? I don't know what the inside looks like and I'd give anything to know that I'm not at risk for colon cancer.

(I know mesalamine meds reduce inflammation and risk of colon cancer but how am I suppose to take something that causes so much pain...)
Posted 6/6/2017 5:49 PM (GMT 0)
You have to understand that it's all about location. Not only location, but limited or extent of location.


Why would you refuse mesalamine medication?
q
Posted 6/6/2017 5:57 PM (GMT 0)
Hello quincy. Yes I know location of ulcers often tells the extent of UC. I refused mesalamine because it caused severe cramping and pain worse than I was experiencing before diagnosis. You can say my body didn't tolerate it well. I tried it for a month and it did more harm than good. Matter of fact it did no good. I stopped and cramps subsided.
Posted 6/6/2017 6:15 PM (GMT 0)
See, it's not ulcers....it's inflammation in increments. Ulcerations...surface of the lining and bleed, BUT that's a degree of inflammation that has increased. Yes, some get ulcers, but they are deeper into the lining.

You aren't on any meds? What mesalamine were you on? And if you were only on an oral mesalamine and not rectal as well, that could very well be the reason you had continued discomfort.


There are better probiotics than philips colon health.

Have you tried any topical steroids?
C-scope a year after diagnosis to check progress, and maybe every 3 years if things are controlled well.

q
Posted 6/6/2017 6:19 PM (GMT 0)
There are no scabs in the colon.....where do get that concept GTGF?

q
Posted 6/6/2017 6:25 PM (GMT 0)
Correct. I am not on any prescription meds. I was on Apriso. I only took oral ones when I was. I believe I have a prescription for Uceris suppositories but I have not yet filled it because in the past suppositories were painful (I dont remember the name but I used some for the hemorrhoids). I've thought about using the steroid enemas to hopefully decrease inflammation and bleeding, but I do not have a prescription for one. No, I've used no topical steroids.

Would you like to suggest better probiotics?
Posted 6/6/2017 6:59 PM (GMT 0)
Hemorrhoids, fissures, and active UC inflammation can all cause blood in stool. UC inflammation involves very small ulcers that bleed microscopically. Each ulcer produces only a small amount of blood, but there are typical a whole lot of ulcers and collectively they can produce a few teaspoons or tablespoons of blood on a daily basis. A fissure is a tear and it can bleed. Hemerrhoids can produce blood. Your doctor should be able to determine which of those three is what you are experiencing.

Constipation is common if you have just rectal inflammation. The large intestine acts like a muscle contracting in order to move stool along and out of the sphincter. When we have inflammation, the walls of the intestine become much, much thicker which makes the normal motion and stool movement much more difficult, which results in constipation.

Diarrhea is much more common with severe inflammation, especially when the extent is much further than the rectum. When I had severe inflammation within my sigmoid colon and rectum, all I had was pure liquid bms.

If you have IBS and UC concurrently, then it is hard to determine which is causing daily symptoms. If you have active inflammation then the cause is UC. Absence of inflammation points to IBS. There's ways of telling if you have inflammation, whether you have a CRP blood test, a fecal calprotectin stool test, or a colonoscopy or flex-sigmoidoscopy.

A colonoscopy is needed for an initial UC diagnosis. A colonoscopy is required for colorectal cancer monitoring once our risk jumps for it. Generally after having UC for 10 years, you have annual or bi-annual colonoscopies as a precaution to your elevated CRC risks. If you flare then your doctor might request a colonoscopy as a diagnostic test to assess how far in extent it goes, how severe the inflammation goes, and verify it is a flare and not an infection in appearance. Knowing this information can help prescribe an appropriate treatment to quickly get your flare under control. For diagnostic purposes, a flex-sig, CRP, or FCP are usually sufficient and I often request those as an alternative.
Posted 6/6/2017 7:04 PM (GMT 0)
I'd suggest you find some prescription medications that work well for you. Its unfortunate you had a reaction to one medication, but there are many others you can try. The vast majority of us do require a medication to treat our UC. You are under treating your UC and therefore still suffering from UC symptoms.
Posted 6/6/2017 7:09 PM (GMT 0)
Thanks iPoop, very informative! To my knowledge I have all three- a fissure, hemorrhoids, and UC. Thats what doc said. He found hemorrhoids and fissure first then suggested I do a colonoscopy, then that's when the UC was dicovered. I will have to request one of those tests to see where I am on inflammation.
Posted 6/6/2017 8:08 PM (GMT 0)
A fecal calprotectin stool test is more precise as it is specific to intestinal inflammation, if you have a choice I would go with it. The C-Reactive Protein blood test is body-wide inflammation, but easier than collecting poop, putting it in vials, and dropping them off at the lab. Either the FCP or CRP can be ordered by your doctor during flares. They can also be ordered on a regular basis as a pro-active way of monitoring your progress (for example, quarterly, twice a year, or annually). Just good tools to have in your toolbox, and use them when appropriate.

It's pretty common to have a high WBC count when you're flaring. If you look at your Complete Bloodcell Count test results then you'll likely see an elevated SED rate, as well, and that's also suggestive of inflammation. UC is likely an autoimmune disease (or at least an immune-deficiency), and as such, your immune system goes into over-drive causing inflammation within the large intestine. The immune system's primary attack-dog is the WBC, so it makes a whole lot of them to eliminate a perceived invader or threat. When we enter into a remission, our WBC and SED should drop back into a normal range.
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