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02-27-2015, 07:50 PM   #1
sweethomeswing
 
Join Date: Feb 2015
Location: ventura, California
Anxeity

I have begun remission since being on steroids. I know from having a degree in health and having a sister in medicine that its bad to be on steroids long term, so my Gastro doctor told me we should start biologics. However, i have been having not conclusive results from tb skin tests, and have to take medicine to prevent biologics causing problems. The annoying and scary and stressful thing is I don't like any options. I know what i need to do and it all makes since, but i am scared out of my mind of what will happen. Any advice on how to handle it? I read about attitude and working out, and i am trying that, but i just feel defeated with a lot of unknowns.
02-27-2015, 09:36 PM   #2
24601
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Join Date: Dec 2013
Location: London, UK
I think it's completely understandable to feel anxious about starting biologics (a lot of us have felt like that for sure) and especially with the additional concern for you regarding your tb tests it's no surprise that you'd be worried. I think it's important that you don't feel like experiencing this anxiety means that you are not doing something right because this is definitely something that many of us have struggled with and to a degree it is normal - but obviously it's not very nice to feel worried about it and it's very difficult when that anxiety becomes overwhelming.

Just a couple of questions: Did your doctor give you any other options instead of starting a biologic? Will you be taking an immunosuppressant like azathioprine or 6mp as well? Did you have a chest x-ray to screen for tb in addition to the skin tests?

I know the potential side effects of biologics are frightening but many people don't experience anything significant and for some people biologics prove very helpful at achieving and maintaining remission and getting off steroids, which is important as steroids will definitely do damage if you stay on them long term. This is just my experience of course but I suffered far fewer side effects from Infliximab and Humira than I did from prednisolone.

I think many of us feel as you do that we don't really like any of the options available to us. That may not really help but you are certainly not alone in feeling that.

As for coping with the stress and anxiety, I think finding people that you can talk to about these feelings can really help - whether that's in this forum or if you have family or friends who understand some of what you are going through. It's good to be able to vent those feelings and hopefully also get some reassurance from those who have been in a similar position. But it's also important to find ways to set those worries aside - I think that anything that you enjoy and that distracts you, and things that you find relaxing are good. Exercise is good if you are well enough and laughter is definitely good and really just finding ways to appreciate the good things that you do have in your life right now in spite of what you are going through.

Learning to cope with the unknowns is an important part of learning to cope with this disease I think - but it isn't just Crohnies who have to do that, it's a lifeskill that's helpful in a lot of situations. And in general I'd say the best way to live with that uncertainty is to remember that if you've prepared as best you can - with treatments that's often seeking good advice or doing research yourself, and carefully considering your options - and you've made your decision - because we have to make a decision even if we don't like the options on offer - then after that we have to accept that we can't control what will happen, but we can know that we have done the best that we can and we just have to have faith that we will be able to deal with what comes next. Outside of that process we have to do the best we can to live our lives as well as possible. That's how I try to think of it. I hope that helps a little. I'm sure it's something that we all struggle with often though.

If nothing is helping with the anxiety, it might be an idea to go back to your doctor and tell them how anxious you've been and talk things over again. Do you feel like you have a good relationship with your doctor and feel able to talk to them about all of this?
02-27-2015, 09:43 PM   #3
sweethomeswing
 
Join Date: Feb 2015
Location: ventura, California
I did have a chest ex ray and there was a pocket in right lung. I have to take inh and relafaxin before the biologics. And he did offer 6np but I did not like the higher probability of lymphoma. I love swing dancing and swimming and go run and hike with my boy friend and talk to a counselor once a week. I really appreciate your response. It is really helpful. I feel like my worry is overwhelming me. I should point out that I have a attention deficit disorder and anxiety problem. I think yoga will help more. Like you said all we got to do is live life and focus on the now.
02-27-2015, 09:45 PM   #4
sweethomeswing
 
Join Date: Feb 2015
Location: ventura, California
Oh yes I definitely do have a great relationship with him. He is just very difficult to get a hold of and I am still digesting all of the information and don't want to bug him.
02-27-2015, 10:17 PM   #5
24601
Forum Monitor
 
Join Date: Dec 2013
Location: London, UK
Well definitely keep coming back here and posting! I think a lot of GIs are hard to get a hold of but that's good that you have a good relationship. I think that's incredibly important with a chronic illness because we are dealing with it for our whole lives and Crohn's disease can impact on an awful lot of our life and I think you really need to be able to talk about all the ways it affects you.

It sounds like you are taking a really great approach to dealing with anxiety - but it's understandable that it's still there because these are big decisions and it's a lot to think about. I honestly think anyone would be worried by these decisions - or at least anyone who doesn't get at all worried by these things is fairly unusual.

Yoga sounds like a great idea. I really like pilates and find it quite calming but I'm planning to try yoga too.
02-27-2015, 10:33 PM   #6
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
Welcome to the community. Out of curiosity, how old were you when you were diagnosed with Crohn's disease? And had you traveled to a foreign country two years before being diagnosed?

Weird questions, I know. But there is a point to them
02-27-2015, 10:35 PM   #7
sweethomeswing
 
Join Date: Feb 2015
Location: ventura, California
I got diagnosed recently. Before I turned 26. And no I have not. I work in a hospital as a lab tech.
02-27-2015, 11:44 PM   #8
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
It's a long shot, but intestinal tuberculosis can mimic Crohn's disease.
02-28-2015, 12:16 AM   #9
sweethomeswing
 
Join Date: Feb 2015
Location: ventura, California
Well actually thanks for the shot in the air but I have ulcers and inflammation in the ileum. But I will research what you said.
02-28-2015, 12:18 AM   #10
David
Co-Founder
 
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Join Date: Feb 2006
Location: Naples, Florida
So can intestinal tuberculosis. Please click the link in my post above.

Again, it's a long shot, but considering your tests are coming back weird, it's something to think about.
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