• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Advice: Where to go from here

Hello, everyone! Thank you for clicking on my post, your support is greatly appreciated. At this time, I am very confused and unsure of what to do. Any advice would be amazing.

I am 19 years old and I currently live in Arizona. I should start off by mentioning that I have not been diagnosed with anything, as I have yet to see a doctor. My father, on the other hand, has had Crohn's since he was an early teen and has tried just about everything to get a handle on it. When I was 11, I realized that I might have similar symptoms, but I always tried my best to move past it; as time goes on, my anxiety and my stomach have gradually become worse. By 'my symptoms have become worse', I basically mean- I get anxious and then I have severe pain on my side. At that point, it's just a matter of time before I need to use the bathroom. That's my biggest problem. I also have reactions to certain foods. That being said, I could eat ice cream at home on Sunday and be completely fine. Then, I could eat the same ice cream at a restaurant three Sundays later and be anything but fine for days. So, in that respect I am fairly certain that 60% of the problem is my anxiety. All of this would be almost tolerable if the pain was not so terrible.

I'm incredibly confused as to how to approach this because up until this point I have just forced myself to deal with it. I have tried taking probiotics, but these made my stomach aches all the more unpredictable. I would feel incredible all day and suddenly need to stop in the middle of everything to run to the bathroom, without any warning. After about a month and a half of that, I stopped. My father recently began seeing an acupuncturist and assures me that it has helped with anxiety, thus helping his stomach problems as well. I do not think that this would help me, and I am currently trying to find a gastroenterologist in my area that could possibly get me moving in the right direction. Or, I would even be open to just looking at this as an anxiety problem (and cross my fingers that my stomach issues would go away with it). I hope everything that I'm typing doesn't seem irrelevant and scrambled, because that's how it's sounding to me! My current remedy for dealing with my stomach cannot be healthy, but it has been working and that's all I can ask for at this point. If I have plans to go out, I'll usually take... who am I kidding, I always take an Imodium. Then, in the middle of the day, if I've made the fatal mistake of thinking about my stomach (so the chain reaction begins), I'll take one more. If I plan to stay in, then I do not touch the Imodium. I often chose a day or two a week where I allow myself to eat trigger foods. It might sound crazy, but I feel like if I purposely make myself sick, I'm less likely to get sick at a later, more inconvenient time. I have also just recently began taking ginseng as well. So, we'll see how that goes.

It's my understanding that the process of even being diagnosed with Crohn's can be incredibly uncomfortable and embarrassing. This is a huge fear of mine. I am not sure if the process would be beneficial for me especially considering there is little information about and where it comes from, let alone how to remedy it. I've heard a little about some of the medication given to Crohn's patients and the side effects hardly seem worth it in my case. I rather deal with the problem I have than blindly trade it in for another.

Anyway, before I rant any further, I would love to hear what you have to say. What was it like getting diagnosed? Did you have a fairly good idea of your condition before or was it unexpected? At what point did you decide that you were done just dealing with it and seek help? Are there any alternatives that you would recommend? If you're in Arizona, are there any doctors that you would recommend?

Thank you all! :)
 
Last edited:
Hello. Welcome to the forum. Sorry you are dealing with a lot of things. I will suggest that you make an appointment with a Gastro, I am pretty sure there are plenty of good ones in Arizona. Anxiety can play a role in how your tummy feels, it can also be just IBS. Crohn's can be diagnose with a Colonoscopy/Endoscopy and various blood test, also faecal calprotectin. For Colo and Endo they put you to sleep so you don't feel pain, there is no cure for crohn's but you can achieve remission. Some of the medications have side effects but crohn's can be very bad if not treated. Maybe is crohn's maybe not, But if you find out what is affecting your tummy maybe you will find a way to feel better. It's just my opinion, please let us know how it goes. I wish you the best.
 

UnXmas

Banned
I wouldn't over-estimate the role of anxiety in causing your stomach problems. It's also important to note that Crohn's and anxiety are not the only options here. There are many, many causes of digestive symptoms, varying from completely harmless to very serious. Whilst your symptoms do not sound too serious, getting tested is the only way to know for sure. It may be that nothing significant is found during testing; in that case, you still gain the peace of mind that comes from knowing nothing is wrong.

Some of the tests for Crohn's and other digestive diseases are invasive and unpleasant. However, it may be that you do not need them. If you tell a doctor all your symptoms, they can judge whether it is worth putting you through tests or not. It may be that more minor tests - blood tests, stool samples, etc. - are enough to assure a doctor that you are fine to manage this on your own, or that they can prescribe you some medication or dietary changes or something along those lines. If the doctor wants to be more thorough, they may recommend an endoscopy, colonoscopy, or similar tests. These tests aren't fun, but they're not the end of the world either. You'll find plenty of advice on this forum for how to get through them - if you get to that stage.

If not properly treated, Crohn's can lead to complications - sometimes serious - further down the line that could be avoided (in some cases) had medication been started earlier. That's one reason to seek medical treatment. Another reason is that you don't want to be putting up with symptoms unnecessarily. Even if you end up with a diagnosis of Irritable Bowel Syndrome or another harmless condition, seeking medical help may lead you to acquiring some treatment or methods of symptom management that you might not have come up with on your own.

It's really your decision - dealing with doctors and tests can be hard, and I understand why you might be reluctant. But you can switch doctors; you can see what a doctor has to say and then choose whether or not you follow his/her advice, choose whether or not you have a test done. You can always seek a second opinion if you do not feel the first doctor you see has been adequate or if you simply want an alternative take on the situation.

As for the side effects of Crohn's medications - some of the treatments for Crohn's are indeed nasty, but they can prevent even nastier complications from developing. There are several treatment options for Crohn's; there are also ways of dealing with medication side effects - and there's no guarantee that just because a medication can cause a side effect that you will get it.

But you're jumping ahead of yourself a bit here, since you may not have Crohn's. Seeking a diagnosis does not compel you to having to take a particular medication. I would simply concentrate on the first step. Before you worry about medication side effects, or even invasive tests, concentrate on the first step, which would be finding a doctor you like, one who listens to your concerns, tell them your symptoms and tell them about your father's Crohn's - or write it down/print out your post, if you find it hard to speak about - and see what the doctor has to say. That's all you need to do for now. :)

If you do decide to see a doctor, if you want to, come back and post here if you want suggestions for questions to put to the doctor or tell us what the doctor had to say.
 

SarahBear

Moderator
Welcome to the forum, spnsnk46!

First off, I just wanted to say your post didn't at all sound irrelevant and scrambled. :p

Considering that your dad has Crohn's as well, you definitely need to get on the track to a diagnosis right away. Anxiety can play a big role in IBD - it sounds as if it does for him, too? Personally, I would suggest seeking treatment for anxiety as well. It can make a big difference.

I don't know for certain if you have Crohn's. It sounds like a very, very good possibility, but there are other possibilities as well. However, I am going to proceed with this post assuming that you do, since that's the direction in which your questions lean.

The risks and side effects associated with medications to treat Crohn's are far less of a threat than untreated Crohn's. Also, the sooner you're able to get things under control, the easier it is to treat. As the disease progresses, it can be more difficult to rein back in.

It's unfortunate that you've seen your dad struggle to treat and control his Crohn's. However, this is not the case for everyone. There are a few treatment options, and one or a combination of these proves effective for the majority of patients. You can read about medications used to treat Crohn's in the Treatment section. You might also want to check out the Diet, Fitness and Supplements section where you can find information on diets used to help control symptoms or entirely treat IBD.

The diagnosis process wasn't embarrassing or uncomfortable for me. Sure, tests aren't fun - but they're easier to deal with than Crohn's. I've had colonoscopies, endoscopies, capsule endoscopies (pill cam), an upper GI series, and a CT scan. All of these were simple. For colonoscopies and endoscopies, you're sedated and you can request that they completely sedate you (especially if you're nervous). I didn't have any idea what I had before I was diagnosed, and wasn't familiar with Crohn's. It had been mentioned as a possibility, but in a, "I don't think it's that, we have these other possibilities to get through first…" type of way. Throughout my diagnosis process, I was continually told it was anxiety, even though I was not anxious.

I hope you're able to find a diagnosis soon.
 
Top