Not Excited!

[GrumpyGuts]

I'm still pretty new here and so am still getting the hang of stuff here. Wanted to post an update since I haven't been on here in awhile. My Crohn's has been active so I haven't really been up to par :stinks:

Anywho, I went to my G.I. yesterday and had a long discussion about my symptoms and treatment plans and so it seems that I will soon be going on Humira as nothing in the past has ever put me into remission except surgery.

I only have my small bowel left and would like to keep it as healthy as possible. So I did all the blood work, chest x-ray etc. and will be getting my first injections around mid-July.

For those who are reading about me for the first time, had EGD done in March found Crohn's had spread to Duodenum and now small bowel involvement as my symptoms have not improved with antibiotics, bland diet etc.

My G.I. is also testing my vitamin/mineral levels as well to see if I would benefit from the ENT.

So any and all advice is welcome. I have done research on lots of treatments including Humira and other biologics, but would love to hear some success stories to ease my mind some. Not really excited about having to go this route, but can see no other alternative since I really really would love to be in remission once again, and would really really really love to keep all of my small bowel!

Thanks for hearing me out!

 

[bumble_bee]

Hi grumpyguts, I started Remicade last year (i think it's very similar to humira, difference being infusion vs injection and the platform the drug is made from) and I was excited to start it! I was drug free for 6 years up until last summer when I got sick again. I had surgery in 2005 and was in remission for the most part up until then. I had an abscess develop and was in hospital for 10 days with a drain and on antibiotics for what seemed like forever! My doctor immediatly recommended Remicade and I thought as long as its not prednisone and will make me feel better, I'll take it! And I like the fact that i don't have to take a bunch of pills everyday...go every 8 weeks for a relaxing visit with the nurse for 3-4 hours and its done! Humira, i hear is even easier as you can give yourself quick injections!

I know starting new meds is always worrisome what with reading about all the side effects etc and not knowing how it will effect you but after feeling awful for so long, try to look at it as a possible new start to life again...and to finally being healthy! Check out the Humira forum, there's tonnes of people there than can give you info on it and how it works, success stories etc

I think they're are more success stories with the biologic drugs then failures so think positive and good luck, this could be the beginning of something really great!!

 

[GrumpyGuts]

Thanks Bumble Bee for the positive thoughts, I'm not normally so down, but after being in remission for so long then having to go through all of this all over again it can be a bit over-whelming.

Not that I think I deserve to be any different than anyone else here battling with this disease I just get frustrated sometimes, as we all do I'm sure.

So I will take my "lumps" as it were and keep on going, and will look at this as one of the many "Crohn's Adventures" that I have been on in my lifetime!

And besides you are correct in thinking "nothing is worse than prednisone" and hope that I personally never ever ever have to use it again. That stuff makes me just a wee bit crazy!

So I'm off to the races and will definitely check out the Humira forum

Thanks again!

 

[Manzyb]

Humira was a great drug for me! I have never been in remission since I've been diagnosed, but I did really well on Humira. I know that the potential side effects can sound scary and daunting, but the benefits far outway the risks with this drug.

I hope you do really well on it and get back into remission!

 

[GrumpyGuts]

Thanks Manzy!

Have to say, what a beautiful little girl!

So Sorry to hear that you have never been in remission, I had that same problem until I had my whole colon and rectum removed with a permanent ileostomy. Not saying that is the cure-all but I was desperate for relief. Hope you won't have to go to that extreme.

And yes I am praying that the Humira will work for me as it seems to for many many others(just not real excited about the side-effects), I'm still doing research on it and looking at personal stories/reviews. To better prepare myself.

But with all meds there is some risk, so I have decided to stop the worrying and stressing out as it is making my tummy hurt uke_r:, and let God worry about all this mess.

Thanks for your kind thoughts, Hope you too go into remission soon!:ghug:

~GG

 

[Manzyb]

Thank you! She is a precious little baby.

Honestly, with Humira and Remicade, i idn't have any side effects really. The first day or two after injections or infusions, I was maybe a bit more tired, but other than that I didn't have any side effects! I hope you get the same result

I'm currently taking Tysabri, i just had my 4th dose last week and I think that i'm going to have to stop taking it b/c they have strict guidelines about taking it if it is not working for you. Craziness. I am also under a whole lot of stress right now, so I'm sure that is not helping my situation!


Big hugs to you!!

 

[GrumpyGuts]

HMMM, have never heard of Tysabri, what kind of drug is it?

 

[simon47]

welcome GrumpyGuts ,Iwas diagnosed with CD in 2009 , but have had it since early 80's. Illeocecalectomy and all the usual meds. Tried 3 infusions of Remicade (had a reaction, but for some its wonderful..so i dont knock it !) Been on Humira for 2 years now and love it. As much as you can love stabbing yourself !. Been in remission now just over 6 months. I also do azathioprine and questran. Like most on this site, i had the amazing ability to crap through a screen door..now , well much much better. Good luck with the H. Keep us updated. Would love to make it to Texas one day, I hear its a bigger version of Calgary , where I live . cheers Simon

 

[GrumpyGuts]

Thanks Simon,
Yes I remember the days of pain and strain on the "john", I did thankfully have a full abdominal collectomy with a procto-collectomy and an ileostomy in 1997. As most here I had symptoms of Crohn's most of my life but wasn't diagnosed till I was 23(1993).

So now the disease is in my Duodenum and small bowel Yaa-Hoo! Of which I am not excited, was in remission for 11 yrs and so now even though I don't have to strain on the "john" anymore I'm having terrific tummy pain and filling up the bag quite frequently with tarry looking poo.

Hope I have a great experience on the Humira that alot on here seem to be having, not sure if he will put me on other meds with it.

Will update when I get the meds started in mid July!

Come on down to Texas it is like another country, fixin' to get really HOT though!
~GG

 

[Terriernut]

Oh Grumpyguts, what an absolutely awful thing to have it spread upwards. I know they warn us it can after they get rid of our colons, but it is NOT FAIR!

I've not tried the Remicade or Humira, but I'm definetely on the path towards them, since nothing else has worked for me either. Here's hoping this works for you!!!!

Dont forget to visit us on the stoma subforum too.

 

[GrumpyGuts]

Thanks Terriernut,

Hope you go in remission soon. It is true that the spread of my Crohn's is quite unfair, but I shall perservere and overcome.

I will have to come check out the stoma forum as well!

Thanks again!

 

[Manzyb]

HMMM, have never heard of Tysabri, what kind of drug is it?

Tysabri is a fairly new drug. It was originally used for MS, but now is used for Crohn's as well. It is an infusion every 28 days. It's an immunomodulator, a little bit different from Humira/Remicade and Cimzia as it is not an anti-TNF drug. I've just has my 4th infusion about 2 weeks ago. If i'm not any better by July 3rd, i have to stop taking the drug because the potential side effects can be pretty scary, and the drug company will not let you take it any longer if it is not helping. Crazy stuff!

I really wish I could go back to Remicade or Humira, I felt the best on those, but failed them both.


Let us know how you do with the Humira!!

 

[GrumpyGuts]

Sorry to hear the new med isn't doing the trick! I hope they find something that works for you soon! HUGS!