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I guess this is my angry period....

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Crohn's Disease
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Posted 12/12/2013 12:02 AM (GMT 0)
Ran out of pain meds today and had to wait awhile for the funds. I hurt soooo bad I couldn't even think. Got my med, threw one back and hobbled out the door to try and see a client. I got through a one hour session and that's it. I can't work in 1 hour a day. My little girl told me today she is leaving because her brother is always crying and people are just always telling her to do something so she doesn't belong here. Dramatic little 5 year old but still. My inlaws are picking them up in 3 days and I can't even enjoy this time. We don't even have a tree yet.

I'm so frustrated with the whole diagnostic process....just freakin diagnose me and give me something to make it stop hurting. I was driving home and totally pissed off at everyone running around buying food and getting Christmas trees when I just want to curl up. Having some serious cravings...and not even for junk...a nice salad, a black bean taco, a veggie burger...Pulled the mental is not fair card. I KNOW to count my blessings and that things could be much worse...but I just have this horrible pissed off why me can't shake. I'm the healthy one in the family! My inlaws ask me for advice! Now, my father in law is all "Oh, you'd feel better if you went to Texas Roadhouse for a steak." I don't need a lot, not interested in being rich or having a big house...I work in a field that improves lives....I just want my little everyday life with just enough. Why is that so much to ask for? Just go to work, make a modest paycheck, take the kids somewhere fun once in a blue moon...have intimacy with my husband for crying out loud!

I know the GI said something about looking for amoebas and I'm so confused between IBD, amoebas, bacteria, yeast, blah blah blah, this drug that drug, like I don't even know what to ask for or what to say. Hopefully he's on top of his game...if I don't get answers Friday I'm going to flip and cry. I'll do what I have to do...but I need to know what that is!

Just venting here...I'm sure everyone here has been here...no one else seems to get it.
Posted 12/12/2013 1:39 AM (GMT 0)
I had a look at your previous thread, just to get an idea of your history. It seems like there was colitis, but the surgeon didn't complete your last scope - that's really not very helpful :-/ If it's Crohn's you have (as opposed to UC), then the inflammation is very likely to be worse on the right side of the colon than the left. Your doctors need to see what's going on in that area. I really hope the second colonscopy (it is that, isn't it?) on Friday yields a definite answer.

Pain would make even a saint cranky. Severe and/or chronic pain is extremely debilitating. If your inlaws really want to be helpful, ask them put up the tree. Offering generic diet advice is the easiest thing in the world to do, and unfortunately all too many people rush to do it, not understanding the complexities of a disorder like Crohn's. See if you can get some practical help instead, which would be far, far more useful to you than eating a steak. Best of luck...
Posted 12/12/2013 2:09 AM (GMT 0)
I know how you feel, I have been is so much pain for the past 10 days and have not been able to work. Since have my own business that means no pay for the past 10 days. My wife is disabled and my 10 year old son goes to school.

How do I explain to my son that we will lose our house and will have to find another place to live?

I hate crohns so much!!!!!
Posted 12/12/2013 4:33 AM (GMT 0)
Mental Health is so hard with crohns. The meds make your moods swing even more. Its great to have a place like this to be able to vent knowing we definitely can commiserate!
Posted 12/12/2013 6:12 PM (GMT 0)
Sorry I have no advice except to say that you are only human and if venting makes you feel in any way better......then you vent away.

I do hope you get some resolve very soon

Xxx
Posted 12/12/2013 10:53 PM (GMT 0)
There is a pretty good book written by a rabbi, called, Why bad things happen to good people. His son died at a very young age from a disease. And as a rabbi he questioned god, and faith. It put things into perspective. Be strong, it will be ok. I've had this piece of work disease for 43 yrs, and have been in awful embarrassing, painful situations, while out with my family, and I would get so darn pissed off, that I couldn't these normal things. It is really frustrating
Posted 12/15/2013 1:02 PM (GMT 0)
I'm so sorry for your confusion on a diagnosis ...but most of all being a mom with this bleep bleepin disease!!! I have two girls and wasn't clearly diagnosed until they were 12 and 15. I do believe I had it much earlier thinking back. I just tried to cope...didn't do very well.
My husband works/worked many hours and traveled so I was on my own. I lived close to my patents which helped with support until...they both passed and I think the stress of going through that brought on the biggest flare ...
Anyway, it's ok to have days/weeks where you can only have life with "cake and NO frosting" my girls are familiar with this term....a little to familiar haha...there were many mornings I'd send them out the door to the bus stop with peanut butter and jelly toast rolled up....but they had something in their stomachs. I let myself have "I hate Crohns days"
Unfortunately, I have a brother with Multiple Sclerosis. I can't begin to tell u how I look up to him and his disease! his struggles make mine seem....so small. it doesn't take long to look a little further and realize that we are all leaving this earth somehow! No get out of jail free cards here!!! Hahaha
There were two Christmases my kids didn't have a tree up...they didn't die...I just told them it was a Christmas that we were gonna do the angels on the tree at the mall....it turned out to be their favorite holidays! They still ...into their twenties go get their angels at the beginning of the holiday season and go shopping together for others. Most kids have to much junk anyway...
I don't know if any of this helps. It's so difficult to cope with. I just find that accepting things most of the time makes the disease easier to cope. It's better for the stomach too.
I hope u have a good holiday season! Take it easy! And come here to vent all u want!!!
Posted 12/15/2013 3:57 PM (GMT 0)
I think that will any kind of IBD whether it be Crohns, Colitis or what I suffer with - Crohns colitis - it is always acceptable to have an angry period! You are not alone in feeling agitated and upset. Today is the first day in 48 hours that I have managed to even get out of my bed and have the energy to do something other than sit on my couch or sleep.

I think that one thing you need to truly realize is that it's okay to give yourself a break; don't feel like you are lazy or anything because genuinely there are times with we need to allow our bodies to kind of do their own thing and relax. I know first hand how frustrating this is, and how it really can effect your mental health. It can leave you feeling hopeless and depressed that you will never get better but you will, I promise you that!

I've had Crohns Colitis for almost eight years now, and I'm only 24. The hardest part I find, is that it's difficult to have family members and friends truly understand the difficulties of the symptoms of the disease. Unless you have IBD or a related chronic illness, nobody will ever truly understand, including your g.i.

Writing in this forum is exactly the right thing for you to do and I'm so pleased to see that there have been so many responses and support for you!

Hang in there, realize how strong you are - give yourself a pat on the back for surviving each challenging day, and give yourself a break to heal! :)

Wishing you all the best,

Jasmin.
Posted 12/16/2013 3:07 AM (GMT 0)
I'm very sorry to hear how frustrated you are feeling and I unfortunately understand first hand. I suffered for about 8 years before I even talked about my symptoms with my doctor. I had a million excuses for what I was living ... all of those excuses included me blaming myself for eating or drinking the wrong thing, or having a tummy "bug". I was finally diagnosed in September and it took me 3 months to even log on to a forum and start reading about CD.

So I just wanted to say that you are ahead of the game by contributing to this forum and sharing your frustrations with people who can understand. I'm not sure yet if the diagnosis makes it better or worse, in my case maybe mentally a little worse because now I know CD is a part of the rest of my life. Better because I am taking pills and getting some attention and follow up from my gastroenterologist and so I don't feel so alone. Thank you for sharing.

Diagnosed September 2013
Entocort (budesonide) - weaning off that now and heading for Immune System Suppressors next
Posted 12/16/2013 3:52 PM (GMT 0)
Thanks guys. I think my family is losing their patience with me lol! My husband actually told me to stop whining. : ( He doesn't mean to be mean...but he is just good at sucking it up. I wish I was. I was hopeful Friday that I'd be feeling better soon with the pred, but now I just find myself more emotional and confused, and terrified to put anything in my body. Missed a work meeting....got a few hours to pull it together and contact a client, finish some paperwork. I feel like I'm trying so hard to hold myself together but I just keep geing worse...like if I was seeing an improvement okay, even a little one...but 'm putting all these drugs in my body and still can't function. Perhaps at this point I'm depressed too...but all I need is more drugs huh.
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