Just plain tired...

[jami]

I am basically here to just vent my frustrations, have had this wicked disease for 9 years...been through every manageable drug you can think of...the one last chance we are going on cimzia this week along with 6MP, that we cant up anymore because my liver counts are high, colonoscopy shows im in active CD, no diarrhea though, just tons and tons of pain in my ilium. My sister doesnt think I need to be on this website, I have no one to talk to really that understands what I am going through, yes I can talk to my family but they dont know what its like..I am the type that usually just go about my day and try and ignore my pain, but some days I just cant and granted where I work they understand (considering it is a surgical floor) thank the Lord. I am truly just aggravated trying to keep my faith that the cimzia works because if it dont my GI doctor says its the last resort before surgery!!

 

[Thermo]

Hi Jami, I know things suck right now make sure you maintain a positive outlook. Surgery is not that bad, it was the hardest obstacle I have ever had to deal with and over come but this Tuesday will be my 6th week after surgery! It has been a roller coaster ride and like I said it was in no way easy but your mind has a nice way of forgetting the bad stuff and focusing on the good. Right now I have never known what it feels like not having pain in my stomach, zero not even a little bit (Aside from bloating like a normal human gets) There are a lot of downsides to surgery but if you focus on the positives you will be better of in the long run. There is no cure for this disease so all we can do is manage the symptoms and when you cant manage the symptoms anymore you have to start over with a new ileum. Good luck I hope the Cimzia works for you!

 

[jami]

Thank you, I can imagine it being a roller coaster. And, I am pretty sure I will be going down that path sooner or later, I hope at least it will be later. How much of the ilium did they remove? Did they have to put an ileostomy bag in play or not? That is one of my fears. I am keeping a positive attitude that the cimzia will work though.

That is awesome that you are pain free, congrats...

 

[Ckt]

Jami..I never thought I would ever want an ostomy but now I am coming to Chicago to lobby for it!im going to the IBD clinical u of chicago and was seen and treated there in 2000. I have had 6 bowel resections and am switching to cimzia from humira this next week. For some weird reason, my body does pretty good on a certain biologics, then seems to adapt and I end of needing the newer one.
I'm done with trying all different(and ineffective for me) cocktails for crohns. At this point, these symptoms may even be short bowel syndrome but any way you slice it, I can't leave home anymore because of diarrhea,exhaustion, and pain. I've also tried lomotil(am tolerant to it now),and questran(causes partial obstructions for me)..where will it end??hopfulky for me with an ileostomy and cimzia for a deep remission..for a long good while!
I want to add that I've done all sorts of alternative medicine including various dietary changes under a nutritionist.zilch for me..but we are all different!

 

[jami]

I completely here ya CKT, I have tried every kind of diet there is, it does not matter what I eat...at least right now, I do not have the diarrhea, but I still have all the pain that comes with it...I was talking to another doctor today up on the floor and he suggested going to a pain center because my GI doesnt want to prescribe any pain medicines...I do take anti-diarrhea every day regardless just so I dont have it come my way. I am on entocort right now, but that hasnt helped. So, I am going to talk to the nurse when I go in this week for the instructions on the shot about going to a pain clinic see what she says...and yes we are all very different what works for one might not the other!!

 

[Ckt]

Hey jami!yep..we are all different with this disease. I go to a pain specialist here too and it helps a bit. Lomotil doesn't work for me anymore as I has built up a tolerance. Bummer. And questran worked for awhile then I began to get partially obstructed with it. I've also tried OTC miralax type things and that's just down right torture! I think someone said it right that we go on as best we can until well..we reach our limit. Then it's surgery.
So keep on trying different things carefully. My gi docktr kept switching me back and forth so much that I now don't have a clue what to take..and I'm a nurse for Pete's sake! I've now had enough of my t I removed I think just to give me lovely diarrhea that has now been never ending.
But before this,I have to say a low carb diet seems to help for about 6 months. I did a liquid diet for two weeks with very little carbs then gradually added real food. Even salad whic was heaven!
Take care and advocate for your needs!!

 

[jami]

I would love love love to eat salad, but that is a major NO NO!!! I am a CNA on a surgical floor and I see alot of people with this coming in...God knows, sometimes I wanna scream cuz they come in just for the pain pump sometimes...LOL...granted I am sure they are in pain, but I just want to tell them sometimes that yes, I have this disease also and know what they are going through...but then that wouldnt be professional of me, so I bite my tongue...as far as the lomotil, they just tell me to take over the counter, which does work for the most part. I do have a pill for cramping, but i cant take it at work cuz it makes me have really bad cotton mouth and very tired for some reason...as far as the switching meds, I completely know what ya mean, i dont have a clue either myself...

 

[jami]

Well, so I havnet had this in awhile, have had the pain associated with my CD...but, woke up this morning with the diarrhea sitting in...blah, so ready to start the cimzia, so we can see if its gonna work...cramping is right there also, just not feeling very well at the moment

 

[Ckt]

Jami..I'm so sorry to hear you are struggling! I'm hoping cimzia works for you as well! I get my first loading dose tomorrow via mail. I'm tired too girl!And tired of being sick and in pain.. I hope for me starting cimzia doesn't confound the clinical picture because I so want surgery..hopefully an ileostomy.a friend who doesn't have IBD said most don't hope for an ostomy!shows how desperation can lead on to anything!!

 

[jami]

Yes desperation can lead to many things...i would go for a resection but praying this medicine work...ill keep my fingers crossed for you. I dont know if I would wish for an iliostomy bag but if it came to that i would accept it