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Gut Wrenching News

Hi all. I joined about 2 years ago, but didn't really have much time to read and post, and still don't have much, but I got some news today that I'm having trouble with and figured I might need some help.

I got diagnosed with Crohn's in January 2009. I was put on Pentasa and thought that everything was peachy. My symptoms subsided somewhat and I felt better. But they still crept in about once a month or so, but being naive, I just thought that the cramps, diarrhea, blood once in a while was just something that I would deal with for the rest of my life and it really didn't happen that often or for that long, and certainly hasn't really affect my quality of life or anything.

Then I move to a new area and meet a new GI doctor and he's not pleased that I'm having any symptoms at all, so he wants to redo all my tests. My blood work shows inflamation, the MRI shows active disease in my small intestine, and my colonoscopy was just today, but my ileum was so inflamed and bloody that he couldn't go farther than that with the scope. He said that too much longer and surgery would have been needed, and still may, who knows.

Needless to say, I'm in shock, cause I thought everything was pretty ok. Now I'm going to start on Humira next week after the results come back, and am scared to death of having to give myself a shot. Any advice on how to deal with it?
 

SarahBear

Moderator
Location
Charleston,
So sorry to hear things aren't going well. :(

Shots are tricky. I had to do injections of methotrexate for a while, and it was hard to get used to. Humira is in a pen, right? So it's a little different, but still the same basic concept.

I don't know if they show you an "educational" sort of video about doing the Humira yourself, but they did show me one before sending me out the door with a methotrexate prescription. The video freaked me out - it made things look horrifying. It turned out to be way less scary. So basically, if they show you that stuff and it looks bad, try not to let it scare you!

Do you have someone else who might be able to do the first few injections for you? Previous medical experience optional, but a calm demeanor and a steady hand are required. My brother did my injections for me for a while, and I think that made me less nervous about doing it myself.

Another thing - when it comes time to do it, try not to hesitate. The more you let yourself think about it beforehand, the harder it is to do.

Hoping things improve for you!! :)
 

Judith

Crohnsforum Science Advisor
Hi Greeneyes1079,
I hope this makes you feel better.... The needle used to inject Humira is very very small. It is also very short so it does not go in far. The needle size is much smaller than the one used to draw your blood. In fact, it is so small that it cannot be used for a blood draw because it will break the cells when they are drawn up into the needle. Since there are no cells in the Humira injection they can use a much much thinner needle.

The Humira itself can sting a bit but putting ice on the area before injecting can help. Some people inject slowly which can help too.

I hope you find remission soon. :)
 
Hey GreenEyes,

Try not to get too hung up on the injection. Like the people above have said you may want to see if you have a medical person nearby that would help you out with learning how to do it. As a Nurse I have given thousands of injections.

One thing that helps to lesson the pain of the needle when it goes into your skin is to relax the area where you are getting the shot.

When we tense up it contracts the skin and muscle below which in turn move more pain nerves into the injection area thus increasing the chance a nerve will be hit. When we don't tense up they are not so many nerves at the injection area to hit. This will lesson the chance you will hit a nerve but there will be pain on occasion. You can't always miss every nerve every time you inject.

This has worked great for me and my patients over the years. I hope this helps you too.
 
Thank you all very much for the tips and support. Unfortunately, I don't really have anyone else nearby to give me the shots, my sister might be available from time to time, but she's a flight attendant and might be gone when I need the shots. I just moved back to this area after three years of being away and don't have many friends yet. I guess my best bet is just to learn to do it on my own.

I guess I'll get all the training when I go in for my follow-up on Thursday...but it's good to hear that the needle is small, thanks for that info Judith :). As one friend told me already, "you jumped out of a plane and from a gondola over a lake (bungee jumping), so I think you can give yourself a shot.".
 
You sound exactly like mee last February! I felt the same way. Hating needles also and being shocked at the idea of Humira. It does get somewhat easier but i still get super anxious before an injection. sometimes you can ask your dr for something to take before so nerves arent as bad. My husband gives me my injections. In my legs. My tummy we tried and it hurt much worse for me, my husband and i both hate doing them. I have heard that you can also take your shots to your GP or a nearby clinic to help you administer them as well. Good luck starting the medication and i hope you notice a huge difference that makes it worth the hassle :)
 
Sorry to hear this. It's an insidious disease because we get used to living this suboptimal life. Your new doc seems good. I had a similar experience the new medical world goal is to heal and then prevent inflammation so as to preserve intestine.

I feel your pain. Best of luck to you
 

HUMIRA injections are easy not as bad as you think. I started it a few weeks ago. Did two by myself at home last week. The only issue I had was a bruise which I still have but I called HUMIRA and that is a common side effect. The nurse at my GI's office gave me training and it was fine. Try and not let it freak you out too much. I did not even look at the video. Better to get your GI office to do the training less scarey I think!
 

I got diagnosed in 2007. I have tried numerous drugs with one GI doctor but that ended me up in the hospital. I switched GI doctors and he told me the exact same thing as what your GI told you. I also have Crohn's Ileitis and ended up in the hospital for a period of two months all together. I wasn't able to eat anything so they put a pic line in. The scariest part was I was so sick I don't remember being in the hospital half the time. When all the tests were complete and my GI had said what your GI told you... I was very upset to say the least, very nervous and scared. I tried two more drugs after that and stayed positive. For the most part I am doing very well. Not missing a lot of work anymore and being on a healthy track... Although lately I have been having a lot of symptoms. I don't think that you should worry until ALL options are exhausted. I tried Remicade and I am currently on Humira. Hope this helps :)






Hi all. I joined about 2 years ago, but didn't really have much time to read and post, and still don't have much, but I got some news today that I'm having trouble with and figured I might need some help.

I got diagnosed with Crohn's in January 2009. I was put on Pentasa and thought that everything was peachy. My symptoms subsided somewhat and I felt better. But they still crept in about once a month or so, but being naive, I just thought that the cramps, diarrhea, blood once in a while was just something that I would deal with for the rest of my life and it really didn't happen that often or for that long, and certainly hasn't really affect my quality of life or anything.

Then I move to a new area and meet a new GI doctor and he's not pleased that I'm having any symptoms at all, so he wants to redo all my tests. My blood work shows inflamation, the MRI shows active disease in my small intestine, and my colonoscopy was just today, but my ileum was so inflamed and bloody that he couldn't go farther than that with the scope. He said that too much longer and surgery would have been needed, and still may, who knows.

Needless to say, I'm in shock, cause I thought everything was pretty ok. Now I'm going to start on Humira next week after the results come back, and am scared to death of having to give myself a shot. Any advice on how to deal with it?
 
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