Need help dealing.

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Regular Member

Date Joined Feb 2005
Total Posts : 200
   Posted Today 5:13 AM (GMT -6)   
Howdy ya'll!  I've been sitting here an hour trying to figure out how to explain my concerns, so I'm just going to throw it out there, please excuse any hard to follow parts.
Ever since I got sick with CD.. I have had a huge problem finding and keeping a job.  First job after I got sick in 04, lasted two months.  Was going to alot of doctor appointments trying to figure out what was wrong with me at the time (ended up going from 140 to 90lbs). Couldn't hack it anymore. I didn't work again until 06. Had that job until the beginning of 07, laid off due to lack of work. Found another one right afterwards, had that job until the beginning of 08.  Then my rib literally popped out of place and they fired me for having to miss days (wasn't there a full year, so no medical leave act).  After we *kinda* got my rib back in place, I found a job working with my dad for a fiber optics manufacturer. LOVED this job. Twelve hour night shifts on my feet but I LOVED this job. Then in Sept. of 08 the joint pain started.. followed by the gut pain, CD was back.  I ended up on the abt 874 trial, which I'm still on, but I've had so many issues since.  I lost my job in Feb. They said I was laid off due to lack of work.. but I know I was further down the totem pole due to being sick again.  Since the lay off I've been on sleeping meds, anxiety/depression meds, migraine meds, and did my time with the pred again.
Then everything started to get sunny again! The infusions were starting to work (on open label now).  I was still extremely tired all the time but my blood work was looking good, my CD score was down to 77 and they stopped infusions.  I was so happy, I thought I was going to be okay for awhile, even started some college courses. But no, almost three months and it's back.  My research nurse said that I did good, the longest anyone has went without an infusion in the trial was four months, but it's so depressing.  I'm afraid to look for a job now, I know how I feel most of the time, and lacking energy is hard enough to push through. Add massive amounts of pain and D, throw in some horrid joint pain, I don't think I can do it again. I really need to be able to make it though, I have two kids who need me to.
I guess my questions are.. How? How can you do it?  Can hard work start a flare?  I feel like every time I push myself at anything, all these medical issues pop back up and I lose it all.  Before my rib popped out I was working seven days a week, I was making it.  I'm by myself with two little ones who I adore and I want to show them I can do it but I don't know if I can anymore. I've been in a relationship for a year and a half with my very caring boyfriend and if it wasn't for him I wouldn't have a roof over our heads anymore and I hate it.  I was keeping the roof over our heads and the clothes on our backs when he met me. Part of the reason he fell in love with me was because I was so independent.. and now he's watched this DD come and kick everything out from underneath me and I hate it.  I know I am extremely lucky and blessed to have someone here for me, I know this.. but I hate it.  I've read so many inspirational stories of how so many of you pushed through it all.  This site is full of people who just do it. So how do you? Because I don't know if I can.  I want them to see me push through this, I need to know how to deal.
I'm sorry for my wall of text.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted Today 8:11 AM (GMT -6)   
(((Jamief))) First off, big hugs to you. This dd can just beat you down sometimes. Since you got off the trial are you taking any medication? I think most importantly you need some medication in order to get your disease under control. I am wondering if you are taking any probiotics or supplements too? I think if you could get your disease under control, life would be very different for you, its just a matter of finding what works best for you, as not being medicated is only going to cause more problems.

Two supplements that I have found work really well for me are Probiotics (I take Primadolphilus Reuteri) and Vitamin D. I also get B12 shots bi monthly. Those three have helped alot with the fatigue and even with the joint pain. Have you had any bloods run recently? I am just curious what those say. If you haven't had any lately I would highly suggest you request them. So sorry for all the questions, I am just wondering what they are doing for your Crohns to get it back under control, if anything. Maybe you could provide a little more information about that. We might be better able to help you figure out which way to go.

Big Hugs
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Regular Member

Date Joined Feb 2005
Total Posts : 200
   Posted Today 2:43 PM (GMT -6)   
Thanks for the hug Nanners. It's understandable to ask questions :). I actually see my GI once a month, along with the research nurse who do blood work (on site and sent away). There has been no anemia and last time I asked my B12 was looking good. My SED rate is back up so I should probably ask them to check that b12 again. I am not allowed to be on any other crohn's related meds this far into the study and they have continued the trial infusion. Yeah I know it was a risk to take, but I have no options right now due to the fact that I lack medical coverage and my state won't help unless I make some hard personal choices involving my daughter. Her father has never been there, he ran away when I found out I was pregnant and hasn't been there since. He's not on her BC. They want me to go after him for child support and in doing so they add him to her BC. If something happens to me right now, she would go to my mother. If I make that change.. and I'm not around as long as I hope I am, she'd go to some stranger who hasn't cared for her or knows her at all. Hard decision.

I do not take probiotics at this time, but I do eat yogurt daily. I'll defintely go search the local stores for some. If I do not improve on this trial after this latest popup, my GI will probably pull me from it and we'll have to figure out a different route.
I do avoid problem foods, avoid too fatty of meals and try to keep up a daily routine for the kids. I'm actually at a normal weight right now, which hasn't happened since high school. I did still have some medical coverage after the lay off, hence the migraine meds, anxiety, ectera. Which I probably need again now, just don't have the resources to do it at this time. My GI thinks that even while I was in "remission", I was still flaring but didn't know it because it hadn't gotten severe again. I know I'm glooming at surgery in the future, and I've come to terms with that. I guess I haven't came to terms with never being normal again. Even though I can't remember what normal was at this point. Thanks for reading :).

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted Today 3:22 PM (GMT -6)   
Wow, that is a heavy load to carry. As to your first post, I am on disablity, because I just spend too much time in the hospital. I am a very part time grad student as well, and can luckily do some of my student work at the hospital.  So yes stress and overwork do a number on me.
I have not really sure about about custody issues, because they vary so much by state. Since he has not been involved in her life since day one, you should have a pretty easy time of cementing (please thinking about taking the legal steps to protect her, even if you do not want to acknowledge him) your mother's guardianship of her (there are women's legal aid places to help you with this for free, but it might take you a while to find the free places, check with domestic shelters they might be able to point you in the right direction). I just am concerned about you and you little girl.

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 10/25/2009 2:25:31 PM (GMT-6)

Veteran Member

Date Joined Jun 2008
Total Posts : 1058
   Posted Today 3:33 PM (GMT -6)   
Have you considered trying one of the diets that have helped some here? The SCD or the Makers diet have had some good reports. For more info, see:
Last link is aimed at kids with CD but it works well for the rest of us too.

Stress is a major cause of flares, so working 7 days a week and even just your other worries don't help your problem. Maybe you might try something that you can do part-time to start with?

Post Edited (Keeper) : 10/25/2009 2:36:24 PM (GMT-6)

Carnival Huckster
Regular Member

Date Joined Oct 2009
Total Posts : 159
   Posted Today 6:10 PM (GMT -6)   
Hi Jamie,

This subject hits close to home for me. I was working at a big, stressful -- but high-paying -- corporate job back in 2005 when complications from my CD meds caused me to suddenly resign my position. I was taking a lot of prednisone back then and it had disastrous psychological consequences on me. Also the steroids were no longer working so I was in constant pain, regardless of how much I took. I started the SCD around that time, and was able to achieve a long period of remission: from May 2005 to December 2007. It was great, I could eat whatever I wanted and didn't have to take any meds whatsoever. This gave me enough energy to "get back on the horse" (so to speak) and I was able to find a new occupation. I made the mistake on not sticking to the SCD, so I began to experience major flare ups in 2008 - 2009 and was hospitalized for 5 days at one point. Each time a flare up has occurred, I have wavered back and forth between going on disability versus continuing to forge forward. I suppose it makes sense, if possible, to keep some disability options open for oneself just in case you need them. In the U.S., many jobs provide disability insurance that you can then carry forward when you leave that job. In some countries (not the U.S.) you can get yourself declared disabled and the government will pay all of your living expenses and also pay to have you retrained for a job that you can work from home.

34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries

Regular Member

Date Joined Feb 2005
Total Posts : 200
   Posted Today 8:18 PM (GMT -6)   
Thank you all for your responses. I have looked into those diets before, alot of the rules and making the food yourself doesn't seem realistic in my house hold. For one I burn everything I look at haha. And the second reason is I have a SUPER hard time with healthy food. Even when pureed I still hurt from most veggies and fruit. I tend to get alot of malabsorption, so I'm sure that has something to do with it. I'm not ruling them out one day, but I feel that I would personally need to be in a better place with this disease before I started something so drastic as that sort of diet change.

As for my daughter, as soon as I have the available funds I was planning on securing that she would go to my mother in case something bad happened to me. It's hard to do that with no job. Plus I feel such anger at a state that doesn't look at the bigger picture of it all. Yes, I suffer from this medical condition, yes I need constant doctor support to get it under control.. but no, I don't qualify for any state assistance due to the fear for my six year old daughter going to a stranger she doesn't even know exists. I know they are looking at it from a he needs to pay point of view.. but honestly I'd rather never get better than to take that chance of her one day going to this stranger. Thank you Navy, I will definitely look into women's legal aid on this matter. If it is possible to let them take out thier child support without him having "dibs" on her, I'll do it. God knows I need some help right now. This wouldn't even be an issue if he'd ever been involved with her, but he's never met her, nor has he ever taken the steps to try. She'll be seven, and he's never even seen her. I just don't think it's right that they can put me in this position.

Bah I need to stop worrying about it so much though! I know it adds to the stress which makes everything else worse. As for disability, of any sort, I know I don't qualify as of right now. I'm young, I haven't had to have surgery yet.. even though I will have to if only to remove scar tissue one day. I have taken the physical pain into myself alot, I have no pain management going on whatsoever. So they don't understand why I can't do simple things, I just never had the money to seek a pain management doctor, so I've had to deal with it. Which is where the problem is now, I just can't deal with it anymore. Thank you guys for your support, it means more than you'll ever know.
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