Am I doing this all wrong?

The cliff notes on me for starters...

I'm a 37 year old female. I was officially DX'd with UC when I was 27. I have had blood in my stool since I was 21, but no other UC symptoms unless I was flaring. I've had 5 major flares in my life. I tend to be hormone triggered, mostly. I flared during all 3 pregnancies, each progressively worse until with my 2nd (born) child I requiring a signmoidoscopy, non-sedated, in my 25th week because I was no longer able to eat or drink, with urgency to go upward to 60 times a day or more, passing only pus, mucous and blood. This lead to months of 60mg prednisone and then a maintenance drug that I stopped months after taking. Of the 5 major flares, and smaller "blips", I have been on prednisone twice, the remainder of the times I "sucked it up" and dealt with it until they went away on their own. The two times I went for medication is simply because I went beyond that threshold into the "danger zone" (which to me is Tenesmus and a bowl full of blood and mucous).

There are times when I have not passed any blood. But most of the times I have normal stool, with blood on the end, no intense urges although sometimes diarrhea (I do not have my gallbladder, so that's expected).

My normal "blips" involve passing a lot of gas, thinking it's gas, farting bloody mucous, remembering NEVER to trust gas, minor urges to go, passing some blood and mucous and then sitting on the toilet for a while because it feels like a grapefruit is behind my anus. My stools stay normal, for the most part. And then after a few weeks, or months... this just goes away and I go back to my "remission".

I have a history of eating disorders, which are more or less present, depending on how my other medical conditions are. Sometimes I think maybe my symptoms are less because I allow less food to be digested.

I also have generalized anxiety and a panic disorder. I take Effexor 225mg/daily and Xanax-1mg as needed for panic attacks.

In the past three weeks I started to flare. I am having urgency, pressure, cramping, bloating, mucous and blood. I do not have the urgency to actually GO more than once a day (to have a bowel movement), but if I go pee, pushing, will then trigger the release of the other stuff, and that triggers more urgency to pass more (that's not there). This unnerved me because I haven't had tenesmus in about... 7 years? So I had a good cry and started researching elimination diets. I'm frustrated because a lot of these diets say "this is what you can eat" and most of those items I know I can't. So now I'm like... okay so I can eat boiled chicken, fish and steamed squash, and TEA?? Like, that's it?

I'm getting older, I'm a single mother, my plate is full. Something triggered something in me last night, like, what if I'm killing myself? But on the flip side, I HATE being on meds. I HATE being a byproduct of the pharmaceutical industry. I HATE prednisone.

I just need someone to talk to me.

It's been about 8-9 years since I've seen my GI doc, I've never had a colonoscopy. I've had 3 sigmoidoscopies. I am an avoidant person. And I didn't like how the GI doctor wanted to see me routinely all of the time. Patients = Money. I didn't feel at the time it was always in my best interest. Unfortunately my anxiety takes priority when it comes to therapy and time off from work :/

Don't mess around with this disease. I've had it 32 years. At least get Dr opinion. Would maintenance drugs help?? Biologics??? Diet?? Surgery?? It sounds like u have been to the worst place this disease can take u. Be careful. God bless. Be well

To answer your thread questions, yes. You've been doing this all wrong.

A chronic diseases takes maintenance medication, or some will argue a constant change in diet. It won't go away (unless you have UC and take your colon out) and it'll just keep swinging this way. Not healthy, could kill you.

The doc trying to routinely see you is normal for this, depending on how you are you see him less or more often. Flaring may be every few weeks, not flaring may be once or twice a year. I think you need to accept that you have a life long disease and change your attitude towards docs and meds.

Or just try with diet modification and hope it works for you.

Ditto: "To answer your thread questions, yes. You've been doing this all wrong."

Your philosophy to avoid doctors, avoid medications, and avoid necessary screening are making your battle with UC much, much more difficult than is otherwise necessary. Your belief is making your life miserable by avoiding the very things that can help you. None of us want to see doctors regularly, we don't want to take medications, and we'd rather pretend we didn't have a UC. However, reality is that all of those things are necessary and not at all waste at all for chronic illness patients. We do them because we MUST to live with a decent quality of life as UC patients.

The vast majority of UC patients require a maintenance medication for life, see a gasteroenteroligist once or twice a year, and after 8-10 years of having UC you should be having annual colonoscopies to screen for colorectal cancer (as your odds of CRC go up after that point).

If you continue your current path you are likely to need an emergency surgery or likely to get a colorectal cancer, for ignoring and not treating your UC for the last 10-years...

I'd strongly recommend you make an appointment with a gasteroenteroligist, do some screenings to assess how bad your UC currently is, and then take some appropriate medications to treat your UC.

I hope you have luck with diet, and some people do, but your UC sounds pretty severe if you've gone 60x a day... It's definitely worth a try, but you must be aware that it doesn't work for everyone. It never did one iota for me. You have a ton of medical options, but they will not be available to you unless you see a specialist. A scope would be beneficial, you can see what's going on, and find solutions. I agree with the others, you can only avoid it for so long. With UC avoidance can lead to long hospital stays, anemia, dehydration, blood loss... Please go to an IBD center and see a GI. At the same time, try some of the dietary restrictions and see how you do.

I didn't know that the risk of colon cancer goes up after 10 years. I think that alone kind of scared me into shape. I promise, I will make an appt.

Also, a question. I tried taking a probiotic - it was one of those expensive "1 billion" ones... and it just caused all sorts of havoc in my intestines. Is that something one gets used to, or is that just too high to start? Also.. Does anyone take an electrolyte supplement?

Many use up to 100 billion or more regarding dosage of probiotics.
I suggest taking them at bedtime on a mostly empty stomach. Less issues..
Remember that you were also probably flaring...easy to confuse symptoms.

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Good to hear it's soon! Make a list of questions for testing, c-scope and meds.
Please update us after the appt.

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