My History

[ARSalerno3]

Hello, this is my first post on the forums and I just wanted to put out my nightmare of a story, I feel the need to open up about my ordeal but before I go on, I want to thank the forums in advance for giving me this opportunity to have an outlet. Setting the stage, I am 35, male.

So on July 7th 2017, I had my first ultra flare up, then they were pretty much once a week every week till April 2020. I went to school to be a historian, specifically sinologist, and that's why I have all these dates. I actually have a 19 page journal of dates, instances, records of things that happened, and here comes my first major complaint, the "specialist" I am seeing now, IGNORED my journal. He said he didn't care when it started, he wanted to know why I finally sought help. He got a surprise response.

So in 2018, every doctor at the time was convinced it was IBS (which I believe is a fictional trash diagnosis), and gastro department in my area turfed me to psychology. 3 psychiatrists from 2018 to 2020 tried to treat me, all of them recommending me back to gastro on the grounds of "you have a real problem and it's not psychological." In 2019, a doctor, new one, poisoned me more or less. She didn't read my chart and put me on a medication that's bad for you kidneys, and I've had kidney stones. So of course I got another one. Some higher up hospital official actually called me to apologize and admitted the doctor didn't read my chart, clearly, or she would have seen the red flag. Then we did another colonoscopy (my second one) in January 2020, and the doctor said nothing was wrong with me, I should never be sick again and I kicked everyone out of my room so I could cry in peace.

But then I went into remission, clearly, as I only got sick once or twice a year, with me getting sick only ONCE in 2021, and twice in 2022. However, in January 2023, I got sick, then got sicker, then get sicker, then did a little hospital trip, and then the specialist did like 8 tests, comes back "every test we do comes back positive for Crohn's, but I don't know what you have." And then he fights with the radiologist who certified the results as "Crohn's diagnosis of the small and large intestines." One of those tests was a surprise fluoroscopy, and it made me sicker than I have EVER been. I have asthma, and when I was 12, I got pneumonia and was in the hospital for a week, I was no where near as sick then as I was when I had the fluoroscopy. Hearing this, my PCP stepped in and put his foot down. I recorded his statement, as he said it to me, in my journal, it reads...

"They have their answers, I can see the tests, all Crohn's, they don't even have a differential diagnosis." He then added he didn't want me on any Crohn's medication because I work with the public and need my immune system, and he didn't want me on steroids because I'm on antidepressants as it is (unrelated to anything GI). So he then called the specialist and asked what my treatment plan was, and he said there was no treatment plan. So that's where I'm at. Took 6 years to get the diagnosis but now that I have it, all it does is make me like, shrug, at least I have an OFFICIAL excuse to why I miss work so often, why I can't eat in public, why I don't go out with my friends anymore (who I don't have anymore because like, when you've not seen them in 5+ years, you kinda don't connect anymore). I used to draw and paint all the time, when my first bout of remission occurred in 2020, I got so many drawings done, like over 50 in a single year but this year, by comparison, I have maybe 5 done.

I have fevers, mouth ulcers, joint pain, all the other fun stuff that rides along with Crohn's. My former significant other (split up due to multiple reasons) has actually come back partially to help with all this, but she summed it up best the other day "So this was all for nothing? You get a diagnosis and no help." I kinda died laughing when she said that, because it was true. I do feel a DEEP sense of liberation now that I have it, and I feel the weight taken off my shoulders, like, you ever be working outside and get caught in the rain, and you get soaked but keep working because you can't get anymore wet, that's how I feel. It's kinda liberating actually.

That's my tale, my history, in a nutshell. I am curious, if anyone has stuck it out and read my...thesis here, if you have experienced similar things? Is this common, for doctors to fight over you? Is this common to have them deny the test results? My PCP refuses the medications, the specialist said he'd consider them but if my main doc of over 12 years is so concerned, I am more inclined to believe and trust him than the doc I just met. Is all of this fairly normal? I have one friend who's on some medication that starts with an M, and he says he's not Crohn's sick anymore, but he has brittle bones now, and then I've heard some other horror stories around the net on how bad the medication is. My one friend actually got his dad's old medical books out and looked up medications and their side effects one night and he messaged me "Bro, you might wanna check the side effects out before anything." And some of them were comically bad.

Anyways, I guess I can leave a name, I go by Rudy.

 

[Scipio]

Hi Rudy,

Welcome to the forum. It's a relief to have a diagnosis at at last, as many of us here know. But having gotten a diagnosis of Crohn's disease, it's not a good idea to leave it untreated. The damage to your gut caused by Crohn's disease is cumulative. Your body battles hard to heal the Crohn's damage, but just as with cuts or burns on your skin, the gut heals but it leaves scar tissue behind. The scars build up over time and sooner or later you are likely to find yourself cut open on an operating table with some surgeon removing a length of shredded, nonfunctional intestine.

The way to delay or avoid that surgery is to get in and stay in Crohn's remission so that the damage and scarring happens little or not at all.. And for most people that means some form of medication.

Of all the things you have written above the one that makes the least sense to me is this:

"They have their answers, I can see the tests, all Crohn's, they don't even have a differential diagnosis." He then added he didn't want me on any Crohn's medication because I work with the public and need my immune system,..."

Of course you need your immune system. Everybody needs their immune system. It's true that most effective Crohn's medications work by tamping down the immune system - but not to the degree that you can't go out in public. For Crohn's patients on one or another of the various biologic drugs the immune system is not wiped out. It still functions pretty well. I've been on Stelara for 6 years years now. It has kept my Crohn's in remission, and I have not noticed any increase in infections. I was perhaps more cautious than most during the height of the COVID pandemic, but I continued to work with the public as much as my job required.

In my experience, the scary sounding warnings on the Crohn's drugs are overblown. Yes, there is increased risk of serious infection, but those infections are still very rare. The whole thing a balancing act. The Crohn's drugs are developed to walk on a sort of immunological tightrope. You want to tamp down the immune system enough to stay in Crohn's remission but not so much that you develop infections. Sometimes a patient will fall off the tightrope on one side and have a Crohn's flare and sometimes on the other side and develop an infection. But with a skilled GI managing your care, you can spend most of the time in the middle - living a more or less normal life in Crohn's remission.

So my advice is you need to find a doc who is not a medication nihilist. Crohn's is a serious disease. You should not be leaving it untreated for any long periods of time - your work with the public not withstanding.

 

[my little penguin]

Second the find a doc who will treat your crohns with meds
Understand the “side effects” are potential side effects - meaning they could have one or two but most people don’t have any .
My child was dx with crohns at age 7
He is now 19
He has been on various medications including biologics. He started with remicade at age 8 and is now on Stelara plus methotrexate.
He has been on Stelara and methotrexate for 6 years.
He went to school and was out in public without any extra issues for 12 years of biologics
He is starting college in the fall
So crohns meds are not limiting
They heal the gut

please get another opinion and a doctor who will treat your Crohn’s disease .

 

[ARSalerno3]

@Scipio

I don't know where else to go, my area only has 3 "health networks" and all 3 have failed. The one poisoned me and sent me to a psychiatrist instead of treating me, the other has done what it can but it's so small that it doesn't have the resources to really treat me anymore, and the one where the specialist is at is literally an evil corporation. I'm really at my wits end.

The specialist has yet to call me back with his plan. He wants ANOTHER colonoscopy but like, I'm out of a sick pay, I'm not taking 3 days off (again), to do that procedure (again), for them to make up more tests. We had the diagnosis by like May 30th but he was like "I don't believe it, let's do another test" then it came back Crohn's, and he was like "I don't know what this is, let's do another test." He forced an endoscope and surprise fluoroscopy on me, and then said the radiologist is wrong, to which the radiologist re-certified his findings in reply.

@my little penguin

My word, to be diagnosed with it so young, I'm sorry your son's gone through so much. I didn't start to get sick till maybe 2008 but my first REAL flare up was July 4th, 2015, the first real time I had a blockage.

Though with regards to a doctor, I just don't know where to turn and they do not listen. I could go in there and ask them to give me the meds and they will refuse, like they did, but my doctor is like "I need to do this this and that blood test, and we need to get this from you and blah blah" and I'm like "that's cool and all, that's not really related to the problem." Like, the ULTIMATE indignation was they never treated my mouth ulcers. I remember one time, at my old job that I loved (and went bankrupt so lost that one), one day one of my mouth ulcers tore open while ringing a family out, and I kept it together till they left, I was manager on duty, in my electronics area, I spit the blood from my mouth onto my register and cleaned it up (because I bought the cleaning supplies for the whole store, I get to use them at my leisure), but as I cleaned it I was like "my dentist says he can't treat these, and my doctor says they're just part of my life, sure are disruptive" more or less to that affect. I just felt so defeated. I will never forget that day. Should have gotten "my mouth ulcers can't be treated, apparently" tattooed on my chest.

Also, wait, I just remembered, the specialist, after my second visit, and him seeing Crohn's, Crohn's, Crohn's come up in all the test, he goes "I don't know what you have" and turns to my mother and starts trying to treat her Celiac Disease, and she was NOT HAPPY. She was like "woah, woah, you're treating my son, not me, I am not your customer" and customer is how I feel. Not a patient, a customer. My therapist has also been 50/50 on all this, she actually pulled strings to get me the specialist, but then apologized when she realized he was useless/unwillingly to help. She actually asked me to ramp up my meanness to try and force them to actually do something. She says I need to advocate for myself more and I'm like "I do not know how to convince these people, I am out of ideas, I give them written statements, I give them verbal statements, it's as if they do not speak English or simply choose to disregard my words." I must have a face that conveys lying or something, I am straight up, like, at my wits end. I used to have real long hair, really long, like 2-3 feet long. I tear it out now in frustration, specifically over these doctors. Like, I don't have money, I can't bribe them lol.

Sorry to everyone who gets to read this frustration tale, but thanks for everyone who does, and replies. I am writing down your input in my medical journal. Hopefully I can find a doc willing to help.