I was diagnosed 3 hrs ago.. what now?

beer was my first thought

welcome to the club !

sounds like you got lucky doc wise -

Keep in mind that this site skews heavily toward people with more complex cases. Someone with UC that takes lialda or some other medication, goes quickly into remission and stays there is much less likely to join a board like this and/or post frequently. Of course there are some posters like that here but I guarantee the percentage of people with severe and complex cases is much higher than in the general UC population. Chances are you will be able to handle your situation without too much problem.

Welcome to our exclusive club, your membership card, bathroom speed-pass, and 20 percent discount on underpants bought in bulk should be in the mail (just kidding). But hey, you got to laugh a little, as it helps a lot.

There's a lot of emotions we go through when first diagnosed: denial, anger, and finally acceptance. It might initially seem like the end of the world, but it isn't. Just know it's going to be okay and things will get better. Most of us live mostly normal lives.

UC is known as a disease characterized by periods of flares (where our symptoms are in full affect) and periods of remissions (where we have no symptoms) which can last for 2, 5, 7 or more years. So the goal is to get you symptom-free and out enjoying your life. That said, a lot of our initial treatment is trial-and-error. Meaning our doctor says try this for 6 weeks and get back to me, and he/she doesn't always get it right the first time, second time, and sometimes even the third time. What works for each person is very individual, unfortunately no one-size-fits-all solutions. So expect a series of months to get better and heal, and don't be afraid to speak up to your doctor when you haven't gotten back a good quality of life yet.

Often we've got to be our own best advocates for what we need to be healthy. Know your treatment options, learn all you can about UC, and suggest things to your doctor. My doctor and I are partners in treating my disease (he's no dictator) we talk things through, disagree at times, reassess, and agree on a path forward. He listens to and addresses my concerns. And that's what you want. UC isn't going anywhere and neither is your doctor so make sure it's workable.

Some of us have very mild mannered cases that are easily controlled with the mildest medications for decades with a few little blips along the way, some of us have more aggressive cases that require strong medications to treat, and others nothing works and surgery quickly finds them. It's all a roll of the dice and not everyone gets a winning hand.

We all work through it at our own pace, quite a head trip, for sure. You can always request your colonscopy and biopsy results and read them yourself, and bring them to another gasteroenterologist for a second opinion if it helps ease the mind.

A diagnosis consists of a stool test that's negative for pathogenic causes (an infection by various bacterium), a colonscopy that visually inspects the problem area, and biopsies that are examined under a microscope.

Colonscopy. An ulcerative colitis case always shows inflammation within the rectum that progresses continuously. Often small ulcers are seen (part of the uc name afterall). The walls are red, inflammed, bleed when touched with the scope.

Biopsies. In the case of a chronic condition like UC, the cells examined from the biopsies show permant architectural changes. In a normal large intestine, the small capillary blood vessels have an orderly and predictable pattern. In IBD cases that pattern is chaotic and unpredictable due to repeat patterns of healing and inflammation. Cells developing within a hostile, inflammed environment look darn unusual and have weird adaptations to survive: thick cell walls, weird spacing and gaps, and look very distinct. An infection is short term and doesn't change the architecture.

mosheen said...
The denial stems from this absolutely categorical diagnosis- but no understanding of how the conclusion was drawn. I accept that whatever was detected surely points to a UC, but are there no other conclusions which could be investigated? Certainly none were. Couldn't the water I'm drinking contain something that caused irritation and subsequent reaction? A nasal drip? Contaminants from the workplace or other source finding its way into my stomach?

I know this feeling!
I wanted so badly to be like: Well, if I just stop drinking coffee and eat a steak once a week, all my issues will go away and I'll be cured." I am pescetarian, FYI, which actually from what I have read is probably the best thing I could be doing right now, lol. Despite that my body is trying to kill itself.

So, cool/horrifying thing I found out yesterday: Nicotine is an alternative suppression drug that actually can keep people in remission from their symptoms. I quit two years ago and my thank you from my body was a UC diagnosis. Smoking won't give you IBD, but if you have the genetics for it already and you are a smoker, lots of times your IBD emerges upon quitting.

I was in total denial. Then I was super angry and feeling sorry for myself. Then I googled the crap out of this and have come up with an attack plan. If my body wants to wage a war with me, I'm going to be ready for it. All I can hope for now is that I win the war even if it wins some of the battles.

What is currently helping me work through this is two-fold. Maybe it will help you a bit.

1) I have a guy in my life who is making me feel super normal with this and it's a new relationship. Without that part of things I would surely be super depressed.

2) I have decided to treat this disease like a massive allergic reaction to what I am ingesting. I am no stranger to allergies, so this is just annoying as hell as opposed to terrifying.

This forum has helped me a ton. I finally joined recently after kind of just perusing things because I can see that there are far worse Dx's out there than what I am currently living with (perspective) and everyone on here seems to really have a sense of humor and a generous spirit of helping each other.

Y'know iPoop, you've given me more info than my doc already. People shouldn't spend weeks trying to google answers to their concerns before getting the full story from the expert. We all know how people get sucked into believing what fits their narrative. Plus I didn't give a stool sample, so now I have another straw to grab at.
blksteeda I can't believe how quickly I started taking iphone pics of what was in the toilet. I asked the doc if she wanted to see them but she didn't seem too keen!
And DosedQT this stuff about smoking is amazing. I totally believe. I wonder if it's the nicotine though because surely we could just eat the gum like crazy and be back to normal. But I quit nearly 6 months ago and I'm sure that things were being suppressed by the cigs. I'd love to learn more about the smoking connection. I'm also glad to hear you're geared up for battle and with someone who makes you happy.
Soynomore, I think you're right, everyone needs someone they can be calm with. On the antibiotics front, I've never really taken too many tbf. I did a lot of smoking though. Could be the causer AND the suppressor maybe.

I'm grateful to each of you for finding the time to help, particularly when many of you have fought so much longer, and so much harder battles than I've yet faced. You people are cool. Really cool.

Thanks DosedQT. I'll check that out.

Thank you KevinCC.
No steroids were prescribed.
I'm glad to hear the treatment is going well.

Thanks for the vibes CF, the very best of luck with your new treatment.

So here's the update.
The Lialda and enemas stopped the bleeding in days. Lots of mucus in the tiny and infrequent stools for ages. Severe mouth ulcers to the point I could hardly speak. Started vaping nicotine to see if that would help, but I don't think so. Still doing it though. Went to see my GP 10 days ago showing her 30 odd sores in my mouth and throat -and she hit me with steroids (prompted by me after hearing from you guys) which improved things amazingly in a few days. 40mg for 3 days, 30mg for 3, 20mg for 3, now 10mg and my follow up visit in 2 days time. I've been pooping like a regular person. Feeling happier, down to one ulcer in my throat.
Maybe it's because I'm down to 10mg of pred, or maybe it's because I ate something that disagreed with me, but today my stomach is sore again and growling and it's made me so worried that I'm going back to square one.
Of course I know that the worry is compounding it. We'll see.
Thanks again guys.

(^_-) Still haven't been told what kind of UC but it's everywhere in there.
Diagnosed Mar 8th.
Mesalamine 4g enema morning and night.
Lialda 1.2g - 2 tabs once a day.

Thank you. I need all the help I can get. If I hadn't got the steroids I was planning on chain smoking to see if that would work. I'm absolutely convinced the mouth ulcers and UC are connected, and that I've had the illness for years but the smoking suppressed it until I quit. I've noticed your l-glutamine thing and I'm gonna try that. I see people saying good stuff about spinach and sunflower butter too, but feel like I should try one thing at a time so as if it helps I can share it with some other miserable sod.
I've been on a pred high for some days after being extremely low. Now I'm losing the high. You see the treatment for this illness is paid for by insurance my job provides, but the illness may cost me the job. All I want is to be able to function. I can even manage being a bit sick constantly, but if I go back to the way I was a couple of weeks ago, I'm done.
Eating spinach as I type this btw.
Thx again for your good wishes

Mosheen- your signature says lialda 1.2g 2 tabs once a day. So I'm assuming you're taking 2 pills only? The max oral mesalamine is 4.8 g which is 4 pills. If you have uc throughout your colon I would up to max dose. Also you can ask for steroid enemas aka cort enemas. Maybe you can do 2 a day til things get under control or one cort and one mesalamine. You have some options to combat the inflammation right now. Also it can take 4-6 weeks for the meds to start working especially depending on how much and how severe your inflammation is. Then there's always the dreaded prednisone taper. You may need a longer one. I've done many. Some starting at 40 mg and some starting at 20. I would have a plan with my gi but always kept it flexible based on how my body reacted. For me however pred never puts me in remission. Cort enemas are my friend tho!!

I'm 5 years into this disease and just got to the acceptance part. So many many hugs to you. This board is insanely helpful and the people insanely supportive.