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Newly diagnosed. Can I be misdiagnosed? Please help

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Ulcerative Colitis
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Posted 9/17/2017 9:22 AM (GMT 0)
Hello all, let me start off with an introduction of who I am.

I just turned 30 years old, working out in the gym for 8 years, compete in bodybuilding shows for the past 2. I'm no stranger to eating healthy as this is how I pretty much have been eating. My diet consists of -

Carb sources - white rice, oatmeal, cream of rice, white and whole wheat bread, a variety of fruit ( bananas, apples, berries, mangos, pineapples, grapes etc etc ), cereal, rice cakes
Protein sources - chicken breast, ground turkey, fish, protein powders, eggs and egg whites, red meat very rarely, beans, cheeses, greek yogurt
Fat sources- peanut butter, almond butter, fats from meat, avocados, cooking oil etc etc
Vegetables- Spinach, broccoli, asparagus, a vast variety.

I have been eating clean and healthy and even keep track of all my foods to the gram daily as this helps me when dieting down for a competition. I have a cheat meal once a week, nothing to crazy just regular food that you crave when dieting. I am a very healthy person and I workout 6/7 days a week. 1.5-2 hours of weights and 20-60 mins of cardio all depending on where I am in my contest prep.

Supplements I have been taking BEFORE i got diagnosed was a multivitamin, fish oil, glucosomine, protein powders, pre workouts, fat burners. I used to smoke 8 years ago before I got into weightlifting and haven't touched it since. I drink maybe once a year on my birthdays, sometimes none at all.

It all started about 2 weeks ago. I woke up and use the bathroom as I normally would have. But this time it was different, it felt like it was hard to pass my stool and little bits came out. This continued for about 5 days. At this time I thought I got the stomach flu or food poisoning. I keep a log of everything I eat and the only thing out of the ordinary was a piece of chicken I cooked 2 days ago that I left in the fridge. So I just tried to wait it out. A week passed and now whenever I pass gas I have to do it on the toliet because it would come out with diarhea. Around this time everytime I ate
I would feel full in the middle of my stomach near my chest and I would burp constantly. There would be no blood in the toliet except the one or two times I strain because I felt like I wasn't emptying. I do have hemmorhoids so I assume the blood was from that. It was just bright red on the toliet paper, nothing crazy nothing to make the water red. My urges to go were increasing. I took some immodium thinking I just have a bug and went to my PCP. I told her my symptoms she gave me a prescription for Pepcid AC and dismissed me as having GERD. My symptoms weren't going away the next 2 days so I went to an urgent care. The doctor there said I might have caught a bug and prescribed me Cipro for 3 days and more pepcid ac. I took the antibiotics and kind of felt better but the diarhea was still there. Sometimes it would be loose stools and I would see white spots embedded in it. My poop colors would also come out black but I knew I had taken pepto bismol and ate blueberries so it's because of that. After I finished the antibiotics, I felt really full so I took a very strong laxative (magnesium citrate) thinking that I could just be constipated as some of the effects were similar when i looked it up online. After a night of emptying my bowels, my stomach was in alot of pain the following night. I felt bloated, distended and decided to go to the E.R. While I was there I went to the bathroom around 6 times and it was all diarhea. The color was green. They did a CT scan and said I had colitis. The doctor prescribed me 2 weeks of Cipro and Flagyl. Luckily I had an appointment set up with a G.I. the very same day I got discharged from the hospital. Two days and a very unpleasant bowel preparation later I had a colonoscopy. When I awoke the doctor said I had ulcerative colitis on the left side of my colon. On the report it says -

Impressions - Ulcerative (chronic) pancolitis without complications.
He prescribed me Lialda 4 caps a day and Predisone starting at 6 pills a week then tapering down to 5/4/3/2/1
I have a followup in 2 weeks with him to get the pathology results.
He told me to still finish the antibiotics(cipro and flagyl) that they gave me in the hospital. I took my first dose of Lialda and Predisone today and had a very bland diet of white rice, cod, white toast, and eggs.

I only went 3 times so far today. Once after I woke up from the colonoscopy to pass gas. One at night to pass gas/mucus and another with a little diarhea and blood.


What do you guys think? Does this sound like ulcerative colitis or can it be a colitis from bacterial infection and my colon is just inflamed.

Post Edited (ctcrunch) : 9/17/2017 3:27:15 AM (GMT-6)

Posted 9/17/2017 9:54 AM (GMT 0)
Pancolitis is an easy diagnosis to make. I'm afraid you have UC. Sorry man. The cruel truth is many of us were fairly healthy before the onset of symptoms. That's life. Although it seems like many former smokers develop UC, so that could be a connection. I never smoked though.

Post Edited (RISEagainst) : 9/17/2017 3:59:47 AM (GMT-6)

Posted 9/17/2017 9:58 AM (GMT 0)
Be sure to take calcium supplements to counteract the prednisone. And don't go on it for every flare if you can help it. It gave me osteoporosis. That med is dangerous if you use it too much.

Post Edited (RISEagainst) : 9/17/2017 4:01:49 AM (GMT-6)

Posted 9/17/2017 11:18 AM (GMT 0)
Everyone knows that exercise is good for you, but anecdotally this UC forum us full of runners, athletes and gym rats like you. Maybe too much exercise at once can weaken our immune system? I dunno.

Oral mesalamines such as your Lialda can be very helpful but sometimes those meds can be much more effective if taken with rectal mesalamines such as Rowasa enemas. For some reason most doctors don't discuss them but rectal meds get rave reviews here for being very effective with the fewest side effects.

Some of us keep a food diary to isolate triggering foods. Gluten(wheat and bread) and dairy are the usual suspects but any food can be problematic. Look at my signature, I cannot eat cruciferous veggies! But most people can eat cruciferious and others here find that food has no effect on their UC. But everyone is different as you can see from our various signatures.

Do a search of this forum and you will find that many of us find some supplements helpful. Popular supplements are Vitamin D (get your blood levels checked), probiotics, and a soluble fiber such as psyllium. Again check our signatures for ideas that may possibly be helpful for you.
Posted 9/17/2017 11:19 AM (GMT 0)
I'm sorry to say it does sound like you have UC and shame on your PCP for dx you with GERD? This MD would no longer be my PCP. I have read many articles about the correlation of stopping smoking and being dx with UC. I don't eat animal protein and it looks like you eat a lot so you may find relief if you change your diet since it is much harder for your body to process.

I hope you feel better soon.
Posted 9/17/2017 11:22 AM (GMT 0)
Welcome fellow health buff, it's true that there seem to be many of us who've joined lately who had/have squeaky clean diet and exercise programs.

First your initial question, can you be misdiagnosed?
YES.....but it doesn't sound like you've been unfortunately.

I know it doesn't feel like it, but you were lucky to get a fast diagnosis so you can get a good direct protocol and begin knocking out your flare (that's what UC is called when it's active). Then once symptoms die down it'll go into hiding (that's called remission).

The best advice I can give at your stage is to not get too caught up in food and what you ate and try and trace it back and blame food.......this disease has nothing to do with food.

Well, actually ----it does---but only in terms of what YOU can handle may be different than what others systems revolt against. For me, during a flare I have a more limited palette than out of a flare.

The goal is to get to a point of being in remission. I do this by way of medication (the easiest one on my body I can get away with), extra foods that are anti-inflammatory (I follow the diet in my sig line) and a few other things.

If you pay attention to the lines underneath peoples posts----you can see what their diagnosis is and how they've been treating it (meds they've tried, foods, etc).

For many of us this isn't a debilitating situation. Yes we have had to accommodate certain aspects of it, but it's usually not the "worst case scenarios" we read about during our initial research. Try to not let your mind spiral into all the "what ifs" simply because you'll most likely not be one......

If you do supplement calcium, make sure you also ingest the necessary co-factors for digestion as extra calcium floating around in the system isn't necessarily a good thing for us UC'ers. But long term steroids can definitely create a need to pay attention to bone health.

To me, your colonoscopy is a good indicator but the biopsies will confirm it for sure. There IS a possibility of infective colitis.....but the fact that your doctor says "chronic" means that he saw changes in the architecture of your cells that gave him the impression of repeated inflammation and healing cycles.

Repeated often enough this cascade changes the look of the colon. Still, biopsies are the final say.

Your meds look good. I am sure someone will come along and ask about whether or not you are using butt meds (enemas or suppositories) as UC always starts in the rectum for all of us (and continues up the colon as it progresses). Some never have it progress, and some do.

Yours is already the whole left side so you'll have meds that treat further up AND lower. The enemas are great for lower and seem to be indispensable for many of us who have stubborn rectal inflammation.

As far as determining what caused this condition, I had food poisoning before my first flare in 2008, too. But I have come to realize that this is a genetic disease. My doctor ran a genetic test recently and this was basically proven to me.

Prior to that I was searching high and low for "a cause" that I could find and eradicate......now instead I just try and do everything in my power to support a healthy micro biome and keep my body and mind as stress free as I can (added yoga and meditation to my running and lifting) . Stress can be a trigger for many of us.

Good luck. This forum is a great source of support and information, so I'm glad you found it !
Posted 9/17/2017 11:41 AM (GMT 0)

IamCurious said...
Everyone knows that exercise is good for you, but anecdotally this UC forum us full of runners, athletes and gym rats like you. Maybe too much exercise at once can weaken our immune system? I dunno.

I didn't see the two replies above my initial one.......but yeah, this is precisely what I am wondering about these days. I am looking to find my new sweet spot. I ran very hard for a number of years and now need to find my new relationship with exercise, now that the diagnosis is a firm one.

They say extra stress (in whatever form) can exacerbate UC. But it's just "what they say" and who exactly are 'they'? people are very individual and I suspect there will be a bell curve on this......as there seems to be with everything.
Posted 9/17/2017 11:47 AM (GMT 0)

MargieKay said...
The best advice I can give at your stage is to not get too caught up in food and what you ate and try and trace it back and blame food.......this disease has nothing to do with food.

I have no doubt that for you and many others in this forum that “this disease has nothing to do with food.” But I have had UC for almost 10 years and in my experience, and for many others in this forum, avoiding certain foods is very important for maintaining remission.

For example Carrageenan is a common food additive that is extracted from a red seaweed. Many food manufacturers—even some makers of commercial organic foods—are adding "carrageenan" to foods like yogurt, chocolate, soymilk, and even ice cream to give the foods a thicker consistency and to make low-fat versions taste fuller.

I don't know how people can say food has no effect on UC when researchers feed their laboratory animals carrageenan when they want to induce UC in them to study IBD.
Posted 9/17/2017 12:16 PM (GMT 0)
Right, IamCurious, if you reread my reply right underneath the cherry picked quote you put here it says:

"Well, actually ----it does---but only in terms of what YOU can handle may be different than what others systems revolt against. For me, during a flare I have a more limited palette than out of a flare.".

What I meant is that food doesn't CAUSE UC.......genetics do. Sure foods can and should be paid attention to, but on an individual basis. Keeping a food journal is handy.

In a flare I stay away from fruit and veggie peelings......now that I am out of my flare I can eat loads of them. I have no problem with dairy products either in OR out of a flare. It's all relative to the INDIVIDUAL is my point.

EDIT:
And I got rid of my first doctor because of his blatant ignorance about food being important (among other reasons like his lack of an RX for butt meds). My new doctor believes it does help or hurt depending on where in the process one is.
Posted 9/17/2017 3:32 PM (GMT 0)
Thank you everyone for the helpful replies. Still hard to cope with but I'll have to play the cards I'm dealt.
I did not know there was a genetic test to test for this? How can I go about getting one? It would make me feel alot better to know that this basically wasn't my fault.
Posted 9/17/2017 3:47 PM (GMT 0)
Hey, if you have biopsies I wouldn't bother with it. In fact, I didn't even know my doctor issued it (I thought it was just a test to see if a certain med she was considering would be safe for me).

I have Crohn's disease in my family and she said she wanted to rule that out. The test differentiates UC and Crohn's. It is super expensive and sort of unnecessary in my opinion. My first bill was $2500 for it (and insurance was refusing to pay). It ended up that I only had to pay $200, but I still feel it wasn't worth it.

In my case the test came back positive for UC and so it was somewhat of a relief......but biopsies tell the story already IMHO

This is it though :

https://www.prometheuslabs.com/Products/Default.aspx
Posted 9/17/2017 3:56 PM (GMT 0)
Do you have results from biopsies?
Posted 9/17/2017 11:09 PM (GMT 0)
there is not really a genetic test. there is a test that can quantify your genetic risk, but people with both low and high risk get UC. there is a test that can (based on genes) say if UC or Chrons is more likely.

any line of thought with "fault" is off base. you an only be responsible for how you manage your treatment and education about the condition.

good luck
Posted 9/18/2017 4:05 PM (GMT 0)
Welcome to the forum but sorry you have to deal with bowel issues as we do.

A misdiagnosis is very, very unlikely. The biopsies are likely to comfirm UC. Sorry.

UC is a very individual disease full of contradictions in what does or does not work for an individual. What's one's miracle treatment does nothimg for another, and even makes another's symptoms a whole lot worse. A cursory glance at our varying signatures of what works for us should make that clear haha.

For now, I'd eat bland and simple mainly well cooked and non spicy foods: soups, broths, poatoes, chicken, rice as they're good safe foods during a UC flare. I'd ask your gasteroenterologist for prescription for nightly rowasa enemas. As treatment from both ends produces the quickest and best results. I'd seriously tone down the weights and excercise until you heal especially since you're on prednisone. We've had lifters tear ligaments due to pred which weakens ligaments.
Posted 9/18/2017 4:58 PM (GMT 0)
Not me
q
Posted 9/18/2017 5:36 PM (GMT 0)
I believe there's studies about extreme exercise and gut permeability/dysbiosis.

Not exactly a home-run, but here's one about after diagnosis:

www.ncbi.nlm.nih.gov said...
The objective of the present review was to present the role of exercise and its impact on all facets of IBD. Exercise has been speculated to be protective against the onset of IBD, but the literature is inconsistent and weak. Preliminary studies reveal that exercise training may be beneficial to reduce stress and symptoms of IBD. Current research also recommends exercise to help counteract some IBD-specific complications by improving bone mineral density, immunological response, psychological health, weight loss and stress management ability. However, the literature advises that some patients with IBD may have limitations to the amount and intensity of exercise that they can perform. In summary, exercise may be beneficial to IBD patients, but further research is required to make a convincing conclusion regarding its role in the management of IBD and to help establish exercise regimens that can account for each IBD patient’s unique presentation.

/www.ncbi.nlm.nih.gov/pmc/articles/PMC2660805/
Posted 9/24/2017 4:25 AM (GMT 0)

iPoop said...
Welcome to the forum but sorry you have to deal with bowel issues as we do.

A misdiagnosis is very, very unlikely. The biopsies are likely to comfirm UC. Sorry.

UC is a very individual disease full of contradictions in what does or does not work for an individual. What's one's miracle treatment does nothimg for another, and even makes another's symptoms a whole lot worse. A cursory glance at our varying signatures of what works for us should make that clear haha.

For now, I'd eat bland and simple mainly well cooked and non spicy foods: soups, broths, poatoes, chicken, rice as they're good safe foods during a UC flare. I'd ask your gasteroenterologist for prescription for nightly rowasa enemas. As treatment from both ends produces the quickest and best results. I'd seriously tone down the weights and excercise until you heal especially since you're on prednisone. We've had lifters tear ligaments due to pred which weakens ligaments.



I have to wait another week for my appointment with my GI to get the biopsy report. I'm second guessing the diagnosis because I never ONCE had gotten a stool test. So could it be from some bacteria/viral agent?
I'm currently still taking Cipro and Flagyl. And I got my C-Scope done while I was on it so is there a chance that infection wouldn't show up on the biospy because I was taking antibiotics at the time? Also from reading about other people's conditions. I rarely have blood in my stool. As far as I can remember it was just diarrhea.
Posted 9/24/2017 10:40 AM (GMT 0)
Biopsies don't lie. There's permanent architectual changes to your cells then you have an IBD. As a one-off infection doesn't permanently alter your cell walls, their spacing and so forth.

You can still reauest a stool test but as you're on antibiotics it may not find anything.
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