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Crohn's Disease
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Posted 2/26/2012 8:00 AM (GMT 0)
I hate my guts and that's what my screen name should have been way back when I joined HW sad I'm sick of living with this disease and completely pissed about more and more being DX with it cry
Posted 2/26/2012 9:25 AM (GMT 0)
Well done for saying it! The stupid thing drags on and on and on... sometimes......
That being said, I have tried to remember that my intestines are me. Since they are me, they also need to be loved. It is a bit like loving a mangy cat at times!
It sounds like you truly need a break right now. I hope you have a way to get some peace and to let go for a time. It will be resolved one day.
The little breaks are so important. All the best.
Posted 2/26/2012 2:03 PM (GMT 0)
Giggle. "I" hate your guts, too, PB4. I so pray and wish for a respite for you and a L-O-N-G total remission as well. (((hugs)))
Posted 2/26/2012 2:36 PM (GMT 0)
Great idea for a screenname!

I certainly hate my guts sometimes. And sometimes other people's too. >_>

Anyway, I take it the Crohn's is playing up for you at the moment, pb4? I hope it passes soon. In the meantime, is there anything you can do to give yourself a respite, if not an actual remission? I'm thinking of something like a liquid diet, which in my case has helped to reduce the symptoms to manageable levels. Also, if I'm correct you don't take any medication do you? Would you consider something like a course of steroids to bring a flare-up under control?
Posted 2/26/2012 2:41 PM (GMT 0)
I hear ya PB4. My guts suck. :-P Well really right now I hate my immune system since my intestines seem to be OK, but joints and such are just acting up to no end!
Posted 2/26/2012 4:09 PM (GMT 0)
There is an "I hate my guts" T-shirt for Crohn's awareness. Google it and you will find it! I hate my guts too:)
Posted 2/26/2012 7:00 PM (GMT 0)
This year is 21 yrs straight with no full remission for me (due to my complications with my stupid perianal crohn's skin tags and the fact that RX do not work for me---Pred used to but no longer has any effect on my symptoms).

I gave up all crap food and only eat healthy, I take supplements, I freakin exercise for the most part regularly (had to put it off due to dealing with my mom's estate which is thankfully just finished now...2 yrs later) and lately I haven't been doing that great. I bust my balls (or in my case fallopian tube cuz I'm a girl...okay, 44 yr old big baby at the moment) to try and get this disease under control and I'm just very frustrated right now.

Lately it's been a lot of feeling of I have to take a poop and I get loud and obnoxious "noises" instead and still a bit of crap to wipe (basically like sharts, just not in my pants.

Maybe I need to just be happy with the fact that I'm not crapping myself, I just don't know why lately every urge feels like I have to "go" and it ends up just being gas...I was always good at being able to sense the difference between just gas and an actual "mess".  I still am having poops, just not everytime I think I'm gonna.

Right now I really hate my guts and then hearing about new people being DX, I hate theirs too because I know what misery they are likely in for, and that adds to the sadness this stupid disease gives me.

Thanks for the support and kind words guys, as always, it helps more than you know.

Be well!
Posted 2/26/2012 7:50 PM (GMT 0)
pb4 - have you tried some of the bigger guns like imuran? or is that out of the question? biologics? 21 years seems like such a long time without any respite. otherwise, a more restricted diet like the scd? i know, all of the options SUCK but one of them might work?
good luck.
Posted 2/26/2012 8:28 PM (GMT 0)
Thanks Killcolitis,

I tired imuran, severely allergic to it (dizziness, nausea, vomiting, diarrhoea, fever, shivering, skin rash, or pain in the muscles or joints) along with all the other traditional meds, pred worked for me but then it stopped (which sucked cuz I didn't have any major side effects from it like most others get) maybe I'm an alien LOL!

My GI told me that remi and Humira are not really options for me because I'm not having bloody diarrhea, my main symptoms are frequency and urgency (not being able to hold "it" in normally like I used to before getting sick) and daily BM's are so random throughout the day and night and interferes with normal daily living.

My diet is quite restricted since I altered it cutting out ALL processed foods/fast foods/beverages of that nature. I eat very healthy but as I've known for a long time, this disease has more control over our bodies than we do, practically no matter what we do (or don't do in terms of eating poorly/poor lifestyle etc).

I'm just frustrated cuz it's been so long of living like this...I developed IBS as well, which is another reason why I incorporated a healthy diet and exercise.

I've definitely been worse off and for many yrs at that...over the period of having it for 21 yrs now, I was housebound for easily 2-3 yrs in spurts over 21 yrs and although I'm not quite at that point (only cuz I don't have D) it's like a catch 22 and I'm just really frustrated with it.
Posted 2/26/2012 9:10 PM (GMT 0)
pb4 - Yeah, I don't get the major side effects from pred either, so that makes two of us who are aliens >_>. With regards to your severe reaction to Imuran, if it was a few years ago that you took it, it may be worth one more try. (Or its sister med, 6MP.) I say this because I used to have a similar reaction to all the 5-ASAs. For years I refused to take any 5-ASAs, then several weeks ago I reluctantly tried Pentasa granules. The horribly predictable happened: I had no bad reaction whatsoever. Anyway, I'd quite understand if you never wanted to take Imuran again, but I just thought I'd mention it.

I disagree with your GI that bloody diarrhoea is a requirement for Remicade/Humira :-/ I'd say, having failed all the other meds, you'd be a prime candidate for the biologics now. At my first Remicade infusion, I spoke to an 84-year-old lady who'd been on Remicade for 6-7 years and her symptoms sounded fairly similar to yours. I dunno if she had blood in her stools but she certainly had urgency and diarrhoea bad enough to keep her housebound - Remicade was like a miracle drug for her, it stopped all that.

Re diet: it has never seemed to make much difference to what I eat, although admittedly I never committed myself to a strict diet. You could go even stricter (eg the SCD), but to be honest I'm not sure I see much mileage in that, given that you already eat extremely healthily. To be even more honest, I am half inclined to recommend that you say 'sod it' and have a nice large slice of chocolate cake or whatever else is your favourite non-healthy food - if you're suffering anyway, it may as well be over food you enjoy >_<.
Posted 2/26/2012 10:56 PM (GMT 0)
Yes, we're in the same boat. My daughter had an immediate allergic reaction to aza last year but here we are trying 6mp tomorrow because we are running out of options. The pharmacist said that just because she reacted to one does not mean she will react to the other.
As for you GI's comments about biologics, I just don't understand the logic. I thought biologics were particularly good at treating perianal disease? And obviously your symptoms are caused at least in part by inflammation which would be treated by the biolgics assuming they work? I don't know but it seems that after 21 years of suffering they would be well worth a shot.
Good luck to you, it's just so terrible to hear that you're still suffering after all this time and I don't think your GI should leave any stone unturned to help you.
Posted 2/26/2012 11:18 PM (GMT 0)
Thaks guys,

I just had such bad reactions to Asacol and Imuran and I don't want to risk those meds again especially since they can have such horrible side effects, it's like exchanging one issue(s) for another...Maybe it's just my IBS giving me a hard time lately, I don't know...also I am going to be 45 this yr and we know what fun female changes are always around the corner for us so that could be a factor in how my butt has been lately.

Far as the Remi for perianal issues, from what I understand they can be great for fistula healing...thankfully (I need to start concentrating more on what I have to be thankful for I guess) I don't have, nor have I to date, a fistula, just the horrible perianal crohn's skin tags (large painful bumps) on the anus. They were misDX as being hemmies and they banded them off only to find out after it was crohn's disease of the anus---diseased tissue---and since they were banded during them flaring (large and hard) they've never shrunk down ever since....this apparently leads to a longer (or in my case lifetime) flare as the colon and rectom surgeon (that I saw after I already had the "hemmie surgery" done explained to me...and he was right on the mark, he told me chances of a full remission for me was very slim and here I am 21 yrs later still no full remission and still with large painful skin tags on my arse.

I could easily be worse off right now, I'm just frustrated cuz it would be nice to be better off than I currently am....guess I'll never get used to my "new life with CD" if I haven't after 21 yrs of it.

Thanks for letting me vent...hope you all are doing well.
Posted 2/27/2012 2:26 AM (GMT 0)
Hi PB4, can't offer much help other than I feel for you having to go through this for what sounds like a daily basis for so long.

Your GI (Dr. P.) talked to me in January after finding out that my GI was on call the day of my appointment. We had driven down the day before and missed their call to cancel and considering the two hour drive and minus 35'C weather, they didn't want to send me home without talking to someone. I was happy to have another opinion for my situation. He was the one (by phone consultation) who had recommended I try Remicade before surgery a few years ago. Anyway I was wondering about changing from Methotrexate to Asacol. He reviewed my history, answered questions, explained things very well and convinced me that I was on the right track. 

Considering there are so many different meds out there now, is he not recommending anything?

You usually seem to be fairly positive (or maybe just accepting) of the situation so hope you get through this period.

Take care and I do think about you.

 

Posted 2/27/2012 4:18 AM (GMT 0)
Hi everyone. I'm new to this forum. I've been pretty down on myself lately for havin crohns and knowing I have to live w it for the rest of my life and my mom suggested talking to others who have the disease. So here I am! I was diagnosed at 15yrs old and will be 26next month. about a yr ago I started getting sick again after being in remission for 2-3 yrs. One of my worries and concerns is I'll never find a spouse and have children. I think Im upset about this right now because all my close friends are all getting engaged, married or havin babies. Has anyone else felt this way? I just need someone to talk to becux my family and friends all try to be there for me with everything but obviously they can't relate becux they don't have crohns. Hopefully I can find some friends on here and learn to accept I have crohns.
Posted 2/27/2012 4:39 AM (GMT 0)
Just because you "could be worse" doesn't mean that you should be happy with what you have. People say that all the time, but it doesn't make things any easier when things are overwhelming for you. You deserve to be mad and it's good that you can come let it out here.

Wanted to send you (((hugs))) and well wishes. I hope things improve for you.

Also...I hate my guts and your guts also!
Posted 2/27/2012 5:27 AM (GMT 0)
Sorry to hear you've been a little worse pb4. Hugs to you.
And yeah, we get it. We all hate this DD, especially when it's such a b**** to get under control.
Posted 2/27/2012 5:42 AM (GMT 0)
Hey Bammer!!!!

So nice to hear from you, it's been a while, glad you still pop in on occassion! Isn't Dr. P great!!! I'm a weird case though with my stupid anal skin tags and what I went through with them....I'm not having any D or blood so I feel a bit guilty even venting but I guess I just yearn to be normal again cuz it's been so long, and you're right, I do try and stay positive as much as possible but sometimes the disease gets the better of me (especially emotionally).

I'm glad you're on the right track and I hope you're in remission! And guess what.....I FINALLY got the estate completed, just finished it up last week. I didn't get my clearance certificate until the end of January of this year, so it didn't take quite one full year to get it, only 9 long months (like waiting for a baby to be born for crying out loud LOL).

I think of you often as well and hope there is much happiness in your life.
Posted 2/27/2012 5:46 AM (GMT 0)
SaraLynne,

I'm so sorry that you were in your teens when you were struck with this horrid disease ((((HUGS)))) but this is a great and very supportive and knowledgable community that I'm sure you will find comforting and educational LOL.

You shouldn't worry (though I know it's hard) about things like finding a spouse and such....the right person will come into your life and love you regardless "in sickness and in health" and you need to think as positive as possible about life in general (or it will knock you on your butt just like CD can).
Posted 2/27/2012 5:51 AM (GMT 0)
Thank you Monkiray for the hugs and support, and you're right, this is the best place for me to vent when I get a little overwhelmed....I think the last 2 yrs of dealing with my mom's death and her estate (which was full of a lot of unnecessary bullcrap from family members for no good reason) probably didn't help my CD or my mental state so I am thankful that my exsisting flare didn't get a lot worse than it did cuz it sure had the potential to.....maybe my strict diet along with my daily regiment helped me more (especially through the last 2 yrs) then I give it credit and right now I'm just experiancing a little blip...afterall I only just was able to finalize my mom's estate last week and it was a very mentally/emotionally draining process.

Thanks again!
Posted 2/27/2012 5:56 AM (GMT 0)
Thanks Roni for the hugs and support, it's always nice to come here and express because even though I have a great hubby and kids, I hate complaining to them, everyone has enough things to deal with in life and I like to stay strong for them, probably don't want them to think I really whimpy cuz of my disease. But I know my hubby has noticed that lately my gut has been kicking my butt without me even having to say anything....then again, it's kinda hard to hide this disease from people you live with eh.
Not that I llike to complain on here cuz I know most here have it pretty bad off too and then I feel bad cuz just like you guys are aware, we could always have it worse, and sadly, someone on here usually does at some point and time...that alone makes me sad.
Posted 2/27/2012 6:29 AM (GMT 0)
PB4, I do NOT understand your GI not strongly suggesting Remicade to you. I'm sorry I just don't. His reasoning you gave makes absolutely no sense to me at all. I can understand your not pushing to try 'cade until you are sick enough and hurting enough - but not his urging you to try it. (((hugs))), my friend.
Posted 2/27/2012 3:09 PM (GMT 0)
Pb4, thank u for ur kind words. I try to stay positive but some days get the best if me, yesterday was one of those days. *hugs*
Posted 2/27/2012 5:17 PM (GMT 0)
C2, I know, I was kinda shocked but he said big guns are for big flares and if I end up with uncontrollable D, then he'll be more than happy to pull out the Remi/Humira. Based on how bad off I was in the past compared to now, he figured that with no D, blood, or tummy pain (tummy pain I've never been really prone to, for me it was more lower back pain during severe flares) therefore he considers me on the mild-moderate side. My frequency is no longer 30X a day, and my mucuous is so minimal it hardly counts.

He wants to help me stay drug free until I really need it, since he knows my history of meds either not working or me being allergic. So that's what we had decided on together and I'm okay with that. I do have formed stools, and those lumps on my anus likely have alot to do with me not being able to hold my bowels very long like I used to be able to so Remi/Humira wouldn't likely help in that department and that department is one of my biggest gripes, along with some frequency issues, but my frequency is no longer 30X/day of bloody D and major mucous, instead it's formed and averages about 7X/day and that along with it's only affecting my colon (no longer in my small intestine and rectum).
Posted 2/27/2012 5:20 PM (GMT 0)
You're very welcome SaraLynne, I know exactly what you mean and how you feel and now you have found this place full of great support, the kind our family and friends that don't have IBD can't offer but thankfully you'll find it here.

Hope you have a better day today :)
Posted 2/27/2012 5:22 PM (GMT 0)
pb4, remicade is a miracle drug for me, so I will pray that if the time comes for u to use it, it will be a miracle drug for u too!
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