New to this fantastic forum

new to this fantastic forum

:: originally posted in the support forum as I found it initially before this one, sorry! ::

Hey all, I happened to find this forum after my level of frustration mounting dealing with Crohn's disease. I have read through various posts on here and feel that it is the right place to be - reading of those who are going through what I am going through because it is difficult to convey just what is going on with your body and how you are feeling to those who don't have the disease. I suppose I will give my background story so everyone can get to know me.

I was diagnosed in the summer of 2010 after having no symptoms before hand at all. Just intense pain in my lower right abdomen one day and that is what started it all. I was initially put on Entocort to control the symptoms but ended up back in the hospital with an abscess but thankfully that was taken care of with antibiotics and didn't require surgery. After that stay, my doctor switched me to Humuria which had been working great for a long time; however the past couple of months I see the symptoms returning. Have been feeling miserable the past couple of days and got a hold of my doctor who put me on a two week regiment of 40 mg prednisone per day to help reduce the inflammation....so fingers crossed it goes away and I don't need to take another trip to the ER.

So, if you have made it through my post to this point let me say thank you, and I am extremely grateful to be here. Cheers!

Welcome, Benji! It's a great forum, good to have you here! Will keep my fingers crossed for the prednisone to do the trick.

hello and welcome,sorry I can't give advice as I'm a U.C.er and on different meds.But you are right,this is a great forum and you will get lots of support and sympathy from a great bunch of people.Best wishes

Hi Benji and welcome to the forum :bigwave: I hope the pred can soon get things back on track for you, has the doc said anything about what this could mean for the Humira - an increased dose or having the jabs more often perhaps? Or is this something that is going to be discussed at a follow up appt?

I am glad you have joined us hun, there is such a wealth of information here and everyone is so supportive.

xxx

Angrybird said:

Hi Benji and welcome to the forum :bigwave: I hope the pred can soon get things back on track for you, has the doc said anything about what this could mean for the Humira - an increased dose or having the jabs more often perhaps? Or is this something that is going to be discussed at a follow up appt?

I am glad you have joined us hun, there is such a wealth of information here and everyone is so supportive.

xxx

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Thanks for the welcome! I haven't spoke to the doc about where Humira and I stand, seems like that will hopefully be discussed after the short order of prednisone is done, or if not then at my next appointment. Hopefully there is something that can be done to keep things consistently under control and not just okay for a week here or a week there.

I am sorry you are having such a hard time. I was in the hosp last month for a week. It pretty much sucks! I have learned always listen to your body and fight to be heard !! With both my major flares the radiologist in charge of my upper GI small bowel follow through found my disease in the terminal ilium.

tots1 said:

I am sorry you are having such a hard time. I was in the hosp last month for a week. It pretty much sucks! I have learned always listen to your body and fight to be heard !! With both my major flares the radiologist in charge of my upper GI small bowel follow through found my disease in the terminal ilium.

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I know what you mean..every time I can feel something is out of sorts with my body I know something isn't right and it can be difficult some times like you said to be heard. My main area of damage is the terminal ileum too so I am right there with ya.

Welcome Benji, I'm really glad you found us

Since your main area of damage is the terminal ileum, have you been having your vitamin B12 levels checked? That's where it's absorbed and people with Crohn's Disease are commonly deficient which is bad news.

Again, welcome

David said:

Welcome Benji, I'm really glad you found us

Since your main area of damage is the terminal ileum, have you been having your vitamin B12 levels checked? That's where it's absorbed and people with Crohn's Disease are commonly deficient which is bad news.

Again, welcome

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Thanks for the welcome David! You know, I feel I have constantly felt tired since being diagnosed, but every time I get my blood work back my B12 levels are normal. So either my B12 is playing a horrible joke and appearing normal only for blood work or something else is going on. I have been on prednisone for a couple days now because of a rough flare up in the last week or so and I feel fantastic, no pain and definitely a lot more energized.

I am right there with you on being tired, Benji. I was in remission for years, so maybe I just don't remember how tired I was when the disease was almost constantly active the first 10-12 years, but like you, I have been so tired, questioning the nurses when I talk to them, is my iron ok, is my b-12 ok, etc..... but you have to love the energy buzz of prednisone, the highest I was ever on was 60 mgs, loved that I only slept about 5 hours a night, my house was so clean, etc. Hated the weight gain,though.

CLynn said:

I am right there with you on being tired, Benji. I was in remission for years, so maybe I just don't remember how tired I was when the disease was almost constantly active the first 10-12 years, but like you, I have been so tired, questioning the nurses when I talk to them, is my iron ok, is my b-12 ok, etc..... but you have to love the energy buzz of prednisone, the highest I was ever on was 60 mgs, loved that I only slept about 5 hours a night, my house was so clean, etc. Hated the weight gain,though.

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Yes the extra added energy is great so far and luckily the sleep hasn't changed much yet. I will hopefully only be on it for a couple weeks to kill down this flare and then talk with the doc to see what I should do about my Humira and if I should be trying something else.

Yes, I was only on it about a month this time, till I had my blood tested to make sure I could still tolerate Imuran. Maybe Imuran contributes to my fatigue, not sure. I was on Prednisone for many years, that and Imuran are the only 2 that really worked for me as far as settling. Mine is ileum also, had most of it removed 7 years ago, but made it for 16 years without the surgery, they predicted I would have it within 10 years of diagnosis, so I was glad for that.

Fatigue can be a result of many things but yes, B12 is one potential causative factor. What is your specific B12 level as if you're "low normal" you may still be technically deficient.