Afraid to be officially diagnosed

Hello! I am new here, and I have never joined a forum before but I have been dealing with stomach issues all my life (I am now mid thirties).

I am afraid to be officially diagnosed because I had some bad experiences with previous doctors and exploratory surgeries. I think we have a family history as my mom had UC, but said it got better after she took sulfa drugs. My dad also experiences episodes of extreme abdominal pain and syncope (like me) a couple times per year.

A little background on me:
Most of the time in my life I am chronically constipated, sprinkled with episodes of diarrhea or bloody diarrhea during a "flare-up".
8 years old- severe gastroenteritis, hospitalized a week with a variety of unpleasant barium tests. After this I had chronic nausea for a year (parents start wondering if it is psychological). I see a pediatric gastro doc for awhile.
19 years old- my first episode of syncope with a flare-up, and I passed out down my parents staircase. Back to hospital, they suspect appendicitis, blood work questionable, I have an exploratory laporoscopy, they just note "inflammation".
20-25 years old- chronic abdominal pain starts around belly button, bloating with some foods. Pass mucus, or odd color stools occasionally. A few more episodes of syncope, extreme pain, and bloody stool episodes.
26 years old- 1 particularly bad flareup, I pass out and fall out of my shower (dehydrated from passing too much), back to the hospital. They give me a bunch of referrals.
Around this time I started working with a holistic/integrative doctor. He starts treating me "as if" I do have UC and gives me Ultrainflammax and some supplements. I start feeling better, and have less flareups for a few years. After another flare-up he starts throwing out words such as cancer and pushes me to see a gastro doc. I see the Gastro doc, he tells me to stop my birth control pill because it is narrowing my blood vessels in intestines (maybe he suspected ischemic colitis)? He recommends colonocopy, and I do the prep but then back out at the last minute at his office, thinking I feel better.
Proceed to avoid doctors until 30's and just watch diet and take my Ultrainflammax.
32-36 (present)- Move states, get a new job, new insurance, new holistic doctor. He treats *as if* I have UC as well, tries to get me to do some fecal tests (I have poor follow through), and a referral to gastro doc.
I had a bad flare-up this past March, but figured out it was popcorn. New holistic doc wants to find trigger foods for "episodes". Still chronically bloated, passing mucus on and off and painful abdomen. Take Inflammax or curcumin and try and avoid known triggers.

Am I doing myself harm by not doing invasive tests? I just had a bad experience with invasive tests (like surgery) that produced no results. I despise medication and prefer to be natural or adjust my diet. I found by doing diaphragm breathing during the intense pain of a flare-up I am avoiding those embarrassing syncope episodes, or having to crawl to the bathroom. Maybe I could tolerate swallowing that camera pill, but I don't know if they can diagnose UC using that...

Tests are definitely scary but living with untreated uc and anxiety over it may be worse. I'm a pretty anxious person and I can definitely say that the colonoscopies are the easiest part of my disease. I really hope you seek out a GI that understands your anxiety and can come up with a plan together. Good luck!

Sounds like you have a good reason to be anti-doctor, anti-procedure, and anti-meds. Unfortunately, UC plays a different game than you do. The fact is you have a choice of letting it get out of control or not letting it get out of control. Those who let it out of control truly regret it. Once colon damage occurs it can take a long time to heal (assuming you eventually realize the gravity of the situation) and sometimes it never heals. Every minute you waste being anti-everything is more minutes of letting it get out of control and gets you closer to surgery. Your fears are clouding your judgement and giving you false hopes that you can handle this in a way other than going the medical route. People who are anti-doctor and against Big Pharma don't realize that holistic doctors and naturopaths are just different sides of the same coin. They have no clue and take your money based on faith alone and it's not even covered by insurance.

Your fear of surgery is irrational. I guess you could call a colonoscopy "surgery" but it really isn't. The reason your fear of surgery is irrational is because with UC they don't do surgeries, unless it gets to the point that your whole colon has to be removed and by letting your disease get out of control you not only get closer to that but you get closer to colon cancer as well which would probably also include surgery. You are fooling yourself by thinking that diet and integrative doctors will keep your UC under control. It may for short periods but the fact that it only lasts for short periods is proof that you really aren't addressing the problem as well as you should be, meaning that you will gradually get worse and worse with periods of getting better and before you know it your condition will be so bad that the damage can't be reversed.

I saw a sign in a dentist's office once - "Ignore your teeth and they'll go away." I think that philosophy applies across the board for any condition.

StudentLoansforLife said...
I am fairly sure in my research that UC has no cure and that it is a managed chronic disease that is punctuated by periods of alternating flare-ups and periods of remission/sustained remissions. I guess the definition of "manage" could be different with some choosing big pharma meds vs others looking for alternatives via supplements or these new fecal transplants.

Fair enough, I see your point. But IMO you really should get a colonoscopy. I don't see how you can make intelligent choices on how to proceed unless you know exactly how you stand right now.

A colonoscopy is different and much safer than exploratory surgery. Maybe you can find a prep that isn't quite so nasty for your particular body chemistry. Schedule your colonoscopy and then you can decide how you want to manage your disease.

BTW you probably should not rely too much on ultrainflamx for years and years. Yes it is a good medical food, but all supplements are limited and should not be a sole source of long term nutrition. It contain some ingredients that might be questionable such as magnesium citrate. I take magnesium too but the citrate form is sometimes associated with chronic diarrhea.

You can check out our signatures for ideas on diet and nutrition. Everyone is different. E.G. my diet mod started with chicken broth, (it was the only thing I could eat during a flare), and I gradually added more items.

I am in total agreement with those who KNOW firsthand how important a colonoscopy is to diagnose and treat UC. Just had my second one on Friday and am relieved to know the status of my condition. The biopsy showed c-diff and am now taking metronidazole 500 mg. For 15 days.
I asked for the colonoscopy to confirm that UC is the only thing I have(which is enough, as we all know). I am not an easy patient by any means and was never sick except for all the common signs of UC. I finally knew i had to go to a doctor in 2012. But I refused to allow an exam unless i was put out. So, a colonoscopy solved that issue and my gastro confirmed that I had UC. It's been the main concern in my life since.
My point is, if i can get a colonoscopy, anyone can!!! There are so many new prep choices now too.
I tried the holistic approach in the beginning too. But soon realized that this condition requires a good gastro and pharmaceuticals.
Good luck !

IamCurious said...


Fair enough, I see your point. But IMO you really should get a colonoscopy. I don't see how you can make intelligent choices on how to proceed unless you know exactly how you stand right now.

A colonoscopy is different and much safer than exploratory surgery. Maybe you can find a prep that isn't quite so nasty for your particular body chemistry. Schedule your colonoscopy and then you can decide how you want to manage your disease.

BTW you probably should not rely too much on ultrainflamx for years and years. Yes it is a good medical food, but all supplements are limited and should not be a sole source of long term nutrition. It contain some ingredients that might be questionable such as magnesium citrate. I take magnesium too but the citrate form is sometimes associated with chronic diarrhea.

You can check out our signatures for ideas on diet and nutrition. Everyone is different. E.G. my diet mod started with chicken broth, (it was the only thing I could eat during a flare), and I gradually added more items.

Yes, I have been looking at some of the signatures for supplementation, good information and helpful. Interesting to know I am not alone in not tolerating synthetic sugars or sugar free. I ate some Truvia brown sugar the other day, and oh man....pain, cramps, bloat followed by nastiness. I seem to tolerate pure Stevia alright.

Interesting about the magnesium citrate. I only use the inflammax during high pain days, or when I suspect an incoming flare, or when I don't suspect, I use it with the low residue diet. I supplement with other things and curcumin daily.

Yes, I will make some calls to some GI doctors, and the Miralex prep as opposed to the golytely prep suggestion is appreciated because undoubtedly they will want to do the colonoscopy. I plan on talking them into a capsule endoscopy first though. Why not check the small intestine while I am doing it.

A ulcerative colitis diagnosis usually requires a colonoscopy, biopsy results, and a stool test that's negative for pathogenic causes. A pillcam is an interesting way to get a look inside without an invasive colonoscopy but it will not give you biopsies and I don't believe pillcams are widely used for diagnosis, so finding a willing gastroenterologist may be tough.

If the colonoscopy prep is a big concern, I would consider asking instead about a flexible-sigmoidoscopy. As the flex-sig has a much easier prep, just two fleet enemas (essentially saline or a salt water solution) a few hours before the procedure; nothing gross to drink. A flex sig can examine roughly half of the large intestine, and can take biopsies. As uc starts at the rectum then it can be enough to diagnose you.

Do you take anything for your anxiety? Some here take prescriptions to help with it.

It's true that ulcerative colitis is characterized by periods of remission and flares. However, it's also true that those who take their prescription maintenance medications for uc have longer periods of remission, and shorter and less frequent flares. The anti-inflammatory medications (meslamine, lialda, asacol hd, apriso, etc) prescribed for uc have proven affect of reducing colorectal cancers, are very well tolerated by most, and have a long history of use.

No offense, but this is the dumbest question I've ever heard. "Am I doing myself harm by not getting diagnosed". If you get diagnosed or not, assuming you have UC, it happens regardless it's not like just because you don't know officially, means that you don't have it.

The more doctors will know the better they can treat it. Plus unless it's officially diagnosed, insurance won't cover a lot of the meds etc. and if you're 1 of the unlucky ones, where natural treatment does absolutely 0, then you're really out of luck and could be off a lot worse any day now.

That attitude just blows my mind, it's not like they'll perform surgery and take out your colon while you're out for the colonoscopy, I'm pretty sure you'd have to sign a paper saying that's fine to do.

Go get the necessary tests. A family member of mine ignored his bloody stool and pain until it got bad enough that he couldn't ignore it anymore. Turned out he had colon cancer and it could have been caught way before. He died at age 50 because he was too afraid to go to the doctor. Because of this I get really pissed when I hear people are afraid to go to the doctor. GO!

It is unwise for you to put off a colonoscopy and possible definitive diagnosis. You mentioned having exploratory surgery but it's listed as a diagnostic laparoscopy which is a minimally invasive "look-see" with a camera. Did they do any type of resection? What type of surgeon did the surgery? You mentioned appendicitis and "inflammation"...did they do an appendectomy? For argument's sake, let's say you've had UC since the age of 20. That's 16 years of untreated inflammation in your colon but you have no idea if it's limited to the rectum or if it's throughout your colon. You've passed the 10 year mark so your risk of colon cancer has now increased and you need to be screened more often.

Look, none of us want to belong to this club that gives us the ability to poop on command. I understand how your past medical experiences have somewhat traumatized you but there are excellent doctors and nurses who specialize in our disease, who are gentle and caring professionals and will answer all 127 of your questions. Yes, the bowel prep sucks, so take the previously mentioned advice of using miralax. My one last suggestion is don't try to negotiate your way out of a colonoscopy. You need, at minimum, a baseline colonoscopy with biopsies.

Skyflyerjen said...
Good luck! I think many people at some point do get afraid of getting a diagnosis, finally.
I guess a good way to look at it as finally getting answers. You'll at least know for sure and you won't need to be treated *as if* you have something!
Also, I used pretty basic things for my colonoscopy (Miralax and laxatives and Gatorade) and I tolerated that I think as best as I could. So if the golightly stuff didn't go well with you, maybe the doctors can recommend something else.

Thanks, I called my primary today and requested he put in for a referral to the gastroenterology office that specializes in IBD.
I found some links online, for the miralax prep, hopefully they will let me do that instead. I would rather eat clear broth for a week than spend an entire night vomiting golytely.