Going to start Humira tonight

Thanks for the reply Eva...I'm sad for you that the biologics have done nothing to help with your fistula, I can imagine how frustrating that (and still not being in remission with your UC either) must be for you. I'm curious why your doc keeps you on it if it's not doing anything for you?

fruitgirl, I know, it is sad that I think the way I do, I know it stems from having this DD for so long (and that has made it harder to deal with life in general, like the things you've pointed out in your life) it's very hard for me to try and be positive and even harder to stay positive....honestly I'm surprised I'm not in a straight-jacket by now lol, might be in my future though haha. I'm glad that your UC hasn't been as intrusive in your life, I mean I know it's never been a parade for you either, just glad you've handled it all as well as you have...I hope to have that some day too, peppered with some happiness as well lol!

Yeah ActiveUCer, It was a bit of a pain in the butt getting it all figured out (rather than just have the nurse come right to my house for my first injections) but all in all it worked out...feeling not too bad today either, belly was still a bit tender when I woke up this morning but it's gotten much better and about the same energy as usual too (glad it didn't make me super tired). Next Friday I'll go for my first round of blood tests then two weeks from now I'll get my second round with 2 shots, which is better than 4 any day lol!

Pb4, I took my injections in my thighs. I felt it was less painful . I was taking them weekly. Maybe you should try one in the thigh so you can see. I did both sets of loading at GI's office. Very nervous to give them on my own. If you call Humira they have a practice pen.
Hope it starts working for you!

i hope it works well for you

pb4, my GI doesn't "keep" me on Humira, necessarily- he's just not oppposed to me remaining on it! and I'm scared to go off, because it does help.... a little bit... tiny bit....!!!!! And I agree with you 100% about the being happy thing.... UC has currently robbed me of that also- the fear of flaring badly again always hovers over me, the fear of becoming seriously ill from the meds is always there, & the fear of actually having my colon perforate or block entirely is always there too! Maybe that's why I've suddenly becaome a surgery proponent, for me at least. The sooner I do it the better- if I never see/hear/think UC again, it'll be too soon! I can say goodbye to RV fistula, goodbye to pooping my pants, goodbye to chronic fatigue/anemia, goodbye cancer risk, goodbye daily meds... most of all, goodbye FEAR. I'm not a fearful person, per se, but I am indeed fearful of UC & all it entails.  

Eva, I don't even know what to say, it's like you're in total limbo and nothing at all is taking care of your disease and we all know how biologics are currently viewed as the "top dog" med and knowing that it's barely put a dent of recovery for your disease and fistula issue is very disheartening to say the least....I only hope that someday very soon you can find a way to live in your body in peace and I guess if that means surgery for you at some point, as sad as it is for people to lose their colon, if you're ok with it and you get quality of life back, that's what really matters. For me the idea of surgery (as my GI mentioned would be in my near future if I don't have any luck with the biologics) I just can't see myself making that choice, not looking down on anyone that has had an ostomy but I know myself and I just don't see me being happy (even if I end up being disease free, which with CD isn't always the case) with that choice and I guess I look at it like, if I'm not happy now (being sick) and won't be happy with an ostomy then what the heck is the point....this is my negativity issue and unfortunately I don't see any "cure" to my negativity.

NCOT, thanks for your response, I know you've had a very rough go as well and we are probably very similar with our feelings/emotions and mental status thanks to our evil CD. I know I'm depressed and I know why and I think I will feel depressed no matter what (sick or healthy) because I've turned into such a negative person thanks to CD, I know I'm responsible for myself, my health and my life but I feel like I've lost total control of me since getting sick and especially staying sick for over 2 decades and it's really hard to imagine ever being happy (not depressed) even if I became well again.

I'm a classic case of trying to imagine my future and it's very hard to imagine it being happy and healthy because this disease has done a real number on my psyche and done a great job turning me into a bitter old crow as I'm in my mid 40's and only getting older. Life in general is hard, kids, family, life and all the issues that arise in general, and I feel like I don't handle those things as well as I should because this CD obstacle has gotten completely in the way, I can't even think straight half the time...when people around me have issues (like hubby hating his job for example) it puts a tremendous amount of stress on me because he's the bread winner and he's quit and gone to other companies many times and every time he does (or threatens to do it again) it stresses the hell out of me and definitely impacts my disease activity in a negative way then I feel anger towards him and blame him for me not ever feeling well (not to his face, but in my mind) so I build up resentment towards anyone that puts that kind of mental stress on me and then I hate myself even more....it's like a nasty vicious circle of anger, bitterness, depression and crapping in pain all the time so then when I look at the big picture I think to myself, what the hell is the point of life if all you ever feel is miserable and you know it will never change because you can't control anything, not even your own stupid body from crapping yourself and the humiliation of it all.

I don't know how to take one step at a time with anything anymore and I think it's because for so many years I used to think that I will get better with my CD one day, but that day really hasn't come yet so I guess it's only natural to feel like it never will and to feel that if it ever did, I'm now so screwed mentally because of it, so what's the difference. Maybe when I can start exercising again my mind will find a better place (as it has before) and especially if I'm feeling physically well and able to use exercise as a tool for my mind then everything will fall into place and I'll be better at handling stress in general...I used to be strong, but for years I've become weaker and weaker, I guess time will tell.

I hope you find peace within yourself too, I know you hate the fact that you had to end up with surgery and I don't blame you one bit....I guess all we can do is hope for the best and try positive ways to get our lives to where we can be happy and content.

Now we're even for writing essay sized posts lol!

AW, thanks Old Hat :) It sounds like you need to move lol! I know life can really suck (healthy or not) I think I fear that if I get a taste of what it's like to be healthy again and then lose it with another flare that I won't be able to deal with it, I sometimes take things so personally, as if life is just working so hard at keeping me down and I don't know how to fight to try and get back up. I think being sick for so long has made me become overly-emotional and I also need to learn somehow to let go of the guilt which I'm famous for carrying too much of. I'm hoping I'll be able to start exercising again in the hopes that it will put my mind in a much better place and be able to deal better with whatever comes my way. Life is rough as we all know, add IBD or any health issue to the mix and it's that much more challenging. Thanks for your support :)

Good luck, I hope it works for you. I just started as well, and I have noticed slight improvements so far. I just took my set of two shots yesterday.

I do not know if it is true for everyone, but my first set of shots hurt quite a bit. My second set of shots did not hurt at all. Hopefully the pain will subside over time for you as well.

Thanks sibby :)


Thanks Mr coolitis, I hope it works for you as well and I'm hoping the shots get less painful too as I do them. I'm glad you're noticing some improvements already, I feel about the same but maybe a touch less unsettled in the guts than usual, I guess that's at least something.


NCOT, it's ok that you didn't respond immediately lol, I don't expect people to, everyone is busy and still has their lives to manage on this board.....I know not to expect that if I do find remission that life will be perfect, I think I'm just more concerned about how it will affect me when I get sick again, but I will have to deal with that as it comes I guess, just like everything in life....I think once I can start exercising regularly again that things will get better for me mentally/emotionally as well, it's a great coping tool and I do miss it.

Thankfully my daughter and grandbaby are finally going to be moving out of our house in a couple of weeks so I will get my weightroom back (right now it's set up out in the open in the basement and there's a lot of her stuff piled around the area as well. The stress of having them living with us (RENT FREE to boot) has put my disease to the severe level it is at, I know this, I would never tell her that because I don't want to make her feel bad, but it's probably pretty obvious to her anyway.

Just waiting for things to fall into place...a better place for a change.

Thanks to all of you for the support and advice, it's been a great comfort for me :)

Thanks Q!

Wow, it will be quite a change in your home-life with your hubby eh!! I'm sure there will be some kinks but it will be nice too.

Yes, I'm sure she's aware that it has had a huge impact and she probably never thought it would impact my health the way it has but like everything else, it is what it is I suppose and hey, it's not like I was well to begin with, her moving in was a major stress factor that brought me to the point of Humira, if Humira ends up putting me in remission then I guess it was worth it in the end (trying to look at "things" in a positive light). I'm really looking forward to having less people in the house, as much as I love them, it's been so hard and fricken expensive, but she wasn't in much of a position to pay rent when she moved in and then once she went on maternity leave for a year and then recently finished with mat leave and went back to work in Dec....but hey, this is the first time in ages I've had anything to look forward to so I'm concentrating on enjoying that feeling...bad thing is my hubby doesn't want them to leave (of course he wasn't here during the days due to being at work and not having to listen to baby crying all day and all night, she's always been a colicky baby and it's been so hard on me, but of course hubby doesn't acknowledge that (even with the RV fistula appearing and he ended up getting "shut out" so to speak) I think he's a bit of a control freak, he's famous for trying to nose-in on our ADULT children's lives too much, you know, 20 questions them, too nosy about their business, it's like, LET THEM GROW UP ALREADY!!!! No wonder they don't know how to leave the nest successfully!! Oh well, I'm not letting him make ME feel guilty about our now 24 year old daughter and her baby finally living on their own...I've had more than enough of his guilt trips and that's one of the first things on my list to change about myself...honestly I think I let guilt guide me too much, it's time to say NO to people instead of saying yes and me being the only ending up miserable about saying yes to everything.

I'm suppose to get 2 more shots on Feb 27, but if I still have a cold I don't think I'm suppose to take it (as the health nurse told me on the phone, we have to make sure I don't have any infections/cold/flu on the day I'm scheduled for my 2 shots....after the 27th, I get one shot every 2 weeks....kinda crappy that I started Humira during flu season but what can you do.

NCOT, for me a very stressful emotional event had an impact and played a roll in triggering my CD to become active so for me I know stress plays a huge roll. My daughter moved back in almost 3 yrs ago and it most certainly affected my disease in a negative way but I would never make her feel guilty or bad for it...I've used rectal meds many times since she moved home so I wouldn't label myself as "untreated". I know easy going people get IBD too, but I also know everyone's triggers vary as well. I've read that there is a link with stress and IBD and with my own experiences I don't doubt the research that has come to this conclusion.

I took a contact c which generally has always worked for me, feel better already, keeping fingers crossed this head-cold won't linger on once the 27th gets here lol!

pb, don't worry about a cold & Humira- it's ok to do a shot with a cold. It's an infection that's a big no-no. Anything that you may need an antibiotic for, bad idea to do Humira with it! A head cold, no problem. And yes, I do know that the common cold is a viral infection.... I think both you & NCOT are right in the latest discussion- stress no doubt contributes to IBD, & a fistula is much more long-standing than that. In any case- have you noticed any difference since your loading doses? I know it's early, but...

NCOT, I only use cortifoam rectal meds since no other rectal meds ever did a thing to help whenever I have proctitis issues :)

Eva, Thanks, good to know that a little cold won't get in the way of taking my meds on schedule, that's a relief!!! What I've noticed so far is that my tummy seems more settled for the most part, before it was always unsettled until I smoked some mj...the other thing I noticed ---and this is big for me---is my periods came 2 days later after I did my first 4 injections and so far this is the BEST my guts have behaved during my monthly cycle. Not perfect by any means but much better than usual during this time so that's encouraging for me...still frequency and urgency anywhere from 4 to 9 times a day, less and less mucous, less gas (including through the vagina, but it's not like gas always passed through the vagina even before I started Humira). Thanks for asking :)

LOL Larasmom, the thought of doing it in my thigh freaks me out, I had all 4 injections about an inch apart from one another in my belly, they stung and hurt like hell, but I expect it will get better and besides, that pain is nothing compared to the crohn's pain I've been living with for decades so I'll gladly take the shot pain any day so long as the crohn's pain stops...forever preferably (hahaha, wishful thinking on my part!) I agree, I don't like the loud click either, hoping I'll get used to that as well :) How do you find the Humira working for you? Have you been on it for very long? Any luck with it?