Partially a bit of whining, and a bit of seeking advice

So, living with a chronic illness seriously sucks.

Have any of you suspected that you were misdiagnosed, and had to push and push to get at least a test done to confirm or deny possibly different diagnosis? Yeah, that’s where I’m at right now. One of the problems of IBS/IBD is that it mimics so many other illnesses or can be a factor in other illnesses.

I was originally diagnosed with a “common” type of IBD 21 years ago. I’ve had ups, I’ve had downs. For the last 9 months or so, it’s mostly down. We’ve changed medications, the meds do nothing. I go see my GI this week. He at least gave me some samples of a medication that is designed to help with a digestive disease that has IBD/IBS as a symptom. It’s helped a little but has not been the homerun that I had wished for. I didn’t expect great results. I freely admit I’m fishing for something because the IBS/IBD I have makes me feel that there is more going on than just the IBS/IBD.

About the only good thing to come out of this is me losing weight. Albeit weight loss done incorrectly and potentially very dangerously. I have learned a new respect for people with eating disorders. I’ve learned to ignore hunger pangs, for the most part.
I’ve pretty much become afraid to eat, because in a couple of hours I must run to the toilet. None of this has been enjoyable. All of this has done a number on my mental health. Harkens back to thread on mental health.

I suppose what I’m looking for is advice. How have those of you with chronic issues dealt with it? My preferred outlet for mental stuff is a no go right now. I’m too tired to ride a bike. I don’t have the energy to cook or make things in the shop. What used to be easy, is now difficult. What used to be difficult, but doable is now, nearly impossible.

At least when it’s all said and done, I’m still blessed. My wife still loves me and does her best to be there. The pets check in on me, and hangout. My mind still works, more or less, I hope.

Not sure how to advise you but I am familiar with the issue. My wife has IBD. Sometimes she gets serious discouraged and we have needed to modify our daily routines to accommodate her needs. Right now she is redoing the FODMAP routine. She has not been able to get on top of this for years. As I type this, she in seeing her doctor. All I can say, is do not give up. But yes, get a second opinion or a third. You may need to find a different expert in some other place if the doctors treating you now have few or no clues.

1 Like

Sorry to hear about this. I’ve chronicles my much shorter struggle with health problems.

My observation is that most doctors are very specialized and they can only see things through the lens of their specialty. A healthcare version of “if you are a hammer then everything is a nail.” With that in mind you may want to talk to other types of specialists.

My best friend died of leukemia. It was a 4 year struggle of ups and downs. One thing I saw him learn is that no doctor knows your body better than you and to stand up for yourself. They do work for you. That doesn’t mean to not listen to their advice, but there may good reason to believe you’ve been misdiagnosed. Demand they look further. If for nothing else then at least the peace of mind you are on the right path. If they are dismissive or refuse it is probably more of that ‘hammer and nail’ syndrome coupled with a bit of laziness. (Side note: want to see something funny… accuse ANY doctor of being lazy. They all think they work harder than anyone on earth).

Hang in there, trust your body and trust your intuition when it comes to this. There are some things a doctor or instruments can immediately detect. That sounds like the, “I’ve done my research” crowd… it isn’t. In fact it is the most scientific thing you can do… look at alternate explanations. And if you end up in the same place, at least you know.

1 Like

Thank you @RockerUte and @UtahFanSir for your ideas. As much as I hate to admit it, perhaps I’ve been a bit lazy too in not being more of my own advocate. I have done a fair amount of research on my version of IBD. I think I may need to do more. In the meantime, I need something to help fight the symptoms. So, when I see the Doc on Thursday, I’ll be pushing for that. I also will look much more seriously into getting a 2nd or 3rd opinion. It’s just finding a GI that’s not in Raleigh or further west. Perhaps in Greenville at ECU’s Brody School of Medicine. They should be up on new techniques.

Been dealing with Type 2 Diabetes for almost 20 years. Some days really suck…like today’s outpatient work rebuilding my urethra due to infection damage. (If you get a UTI, go to the doctor ASAP) three weeks of wearing a catheter to let everything heal, they used a piece of my cheek so my mouth is all messed up.

Do your best to follow what the doctor says. New treatment and medicines are com8ng out all the time to make living with these problems more manageable. It’s not much of an advice.

It’s more helpful than you think. I’m at a point where I wonder if my meds work at all, let alone in combination with every other med in my daily pharmacy.

If you’re ok with some travel, I would recommend a trip to the Mayo Clinic in Jacksonville Florida. Mayo is known for their ability to diagnose problems. I went there when I lived in the southeast and it was the most impressive medical experience I have ever had. I originally went there for a second opinion and they saved me from getting an unnecessary surgery. They’re not only competent, but very caring. They also run on schedule like a good Swiss watch.