Is anyone else having these problems? Help!!

16, diagnosed with Crohn's June 6th 2011.

My doctor put me on Remicade about a year and a half ago because I was having a lot of fistulas. It worked for a while and the fistulas came back. I was also having a lot of side effects. It wasn't as bad at first but it started getting worse.

I started having difficulty breathing, chest pains, rapid heart beat, felt like I was gonna pass out (sometimes I actually did), dizziness, and nausea. It happened at anytime, not just right after I got my Remicade infusion. But it was only every now and then. A year later, I had a really bad case of it. I had to be carried onto a stretcher into the ambulance. The doctors at the e.r. said I had a panic attack. But after that, it started happening more and more. I've had 4 panic attacks since then within about 6 months. This last one was even worse. The doctors say its because of stress and anxiety but when I have an attack, I'm happy and not sad at all.

My doctor thought it was side effects of the Remicade. So she switched me to Humira about a month ago. But I had my really bad panic attack the night after I got my starter dose of my Humira.

I also had an urinary tract infection before I had started my Humira. I've researched that you're not supposed to have one and start your Humira. I told my doctor that but she didn't run a test to make sure before she started me on it. Now it seems like it's gotten worse. But when I went to the emergency room for my attack the night after my starter dose, I told them about it and they found out that I did have one. I've had it for about 5 months, been on two different antibotics, and it still won't go away. The antibotics they put me on cause me to go into a flare up and start bleeding for the first time in a year.

Almost every day, I have a lot of different other side effects. My chest still hurts, I have difficulty breathing, feel like I'm gonna pass out, and like I'm gonna throw up. I get this sharp pain in the back of my head, everything gets dizzy, and I feel like I'm here but I'm really not (If that makes any sense). I have a hard time trying to describe it. I just feel weird. I lose control of my body and I can't speak. My hands, feet, and face go numb and tingly a lot. I have a hard time remembering things. People have told me that it may be nervous system problems which is a side effect of the medicine.

But the problem is, nobody believes me. My mom and my doctors think I'm just making all of this up for "attention". When that's not the case at all. I really do feel like this but I don't talk about it since no one believes me. I was just wondering if anyone else is having these problems and can help me figure out what's wrong with me. Any comments would be greatly appreciated!!

Hi Bri, welcome to the forum. I'm sorry you're having such a rough time.

I just wanted to welcome you and say that we do believe you, we are all here for you. I would keep telling your doctors whats going on, and if they wont believe you, find one that will. Its not fair for them to leave you to deal with this and ignore your symptoms. The problem with these conditions is that they can be quite hard to diagnose and bring under control, so sometimes the doctors cant give an easy answer. When faced with a difficult diagnosis some doctors just look for the easiest answer, which unfortunately is sometimes "its all in your head".

Dont give up though, this isnt in your head, its real and you know your own body. Keep fighting, keep telling them that you need help, dont let them put you off. There are good doctors out there that will take the time to look into things in more detail and help figure out whats going on and how to treat it.

You can always talk to us, you can share whatever feels comfortable, we will never turn our backs on you or judge you. We are here to help, support, cry with, laugh with and rant with.

I believe you, Bri. I have no experience with a UTI, but my husband did get the really numb and tingly feelings in his arms and legs, and his GI suspected it was peripheral neuropathy, which can sometimes be a side effect from one of the antibiotics he was taking, although I can't remember if it was Cipro or Flagyl.

These symptoms went away once the medicine was stopped, so hopefully, they can find the best combination to treat your symptoms soon, without creating all the secondary ones.

Hang in there, Bri. We are all rooting for you!

BriBoo said:

Almost every day, I have a lot of different other side effects. My chest still hurts, I have difficulty breathing, feel like I'm gonna pass out, and like I'm gonna throw up. I get this sharp pain in the back of my head, everything gets dizzy, and I feel like I'm here but I'm really not (If that makes any sense). I have a hard time trying to describe it. I just feel weird. I lose control of my body and I can't speak. My hands, feet, and face go numb and tingly a lot. I have a hard time remembering things. People have told me that it may be nervous system problems which is a side effect of the medicine.

But the problem is, nobody believes me. My mom and my doctors think I'm just making all of this up for "attention". When that's not the case at all. I really do feel like this but I don't talk about it since no one believes me. I was just wondering if anyone else is having these problems and can help me figure out what's wrong with me. Any comments would be greatly appreciated!!

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I'm very sorry to hear that you are not feeling better . I understand exactly what you are going through and it sounds like you are overwhelmed.

As someone who has experienced and been diagnosed with generalized anxiety disorder, I can tell you that I have experienced EXACTLY EVERY symptom you have described in the quote above and as frequently as you say you have and the majority of your symptoms you describe do honestly sound like they are more anxiety-related than crohn's medication side effect related. I am telling you this not just as an observer, but as someone who has dealt with this first-hand myself.

It might be helpful to you to seek out some counseling to help you learn to cope with everything you are dealing with. In the meantime it would be beneficial to try various relaxation techniques and see if they help you at all. Mindfulness meditation and deep breathing are two very good ways to do this. Journaling is also a good way to get some things off of your chest as they happen to hopefully reduce some of the stress. But as intensely as you seem to be experiencing these feelings and for as long as you have, a counselor can offer you the best help with learning to manage it all. It wasn't until I learned how to treat my anxiety and stress that these pains and confusion started to fade.

It is possible that some of what you are experiencing MIGHT be from medication, but at the same time....Crohn's is very stressful to live with. And every flare and complication that comes with it can magnify that stress x100. And the fear of not knowing what is going to happen and whether or not you will get better or worse can be terribly overwhelming. And the fact that no one understands or believes you makes that overwhelming feeling more extreme.

I hope you start to feel better very soon and if you have any other questions or concerns or just want to vent it out you always have us here. You are not alone. :hug: