My story and some guidance please...

[Wishingtobewell]

I will try to keep this brief, but will probably fail miserably! Sorry in advance!

I was diagnosed in 2002 with crohns after surgery to take out my appendix which they said was going to burst and ultimately one exploratory surgery turned out I have crohns. I had a 6 month period in2004 where I was either bed ridden, in hospital and eventually recovering from surgery. (still somewhat angry I lost that bit of my life, had family that said nobody is that sick, etc). The surgery removed my terminal ileum and a couple feet of intestines. Since that point I have ranged from feeling well to unwell, went on and off many medications that didn't work and just tried to deal the best I could. In 2010 I became pregnant, had my daughter and with the pregnancy and up until she was 9 months had a glorious remission where I could eat anything, drink anything and for the first time in so long felt normal!

And then it started in February/march of this year I had yet another cold and my family doc put me on antibiotics. I swear that brought back my crohns. It was awful! I suddenly was losing control of my bowels in the middle of the night, was feeling sick all the time and so tired. The only thing in life that had changed was taking an antibiotic. Once I realized that I immediately stopped taking them. But since then it's been a rollercoaster of crohns nightmares. (thankfully within a few days I was no longer waking to a mess!!!)

Where once I could somewhat control the crohns with what I ate, now I can't. Things that I could always eat, I can't now. What food digest fine one day is no guarantee the next.

I've only ever had one episode of blood in my stool, scared me so much!

I still get bloated and uncomfortable but not a whole lot of pain, which is a good thing but now it makes me wonder if I'm just being a wimp. (the pain I once had was unbelievable, much like hard labour really!)

I'm always tired....I have four children, work full time, commute two hours a day to and from work...so I never know if I should be contributing tired to kids and work. I drive home from work close to tears and exhausted because my day won't be over for a couple more hours.

I'm finding I'm so incredibly moody and loose my patience and get upset so much easier than before, I believe that is more crohns related but please correct me. (for example, I work in a demanding field. I deal with various people daily, I have always managed to smile through the annoyances and do an amazing job...now, I'm just finding it so hard. A coworker - always an ignorant woman really - made some comment and I actually had to leave my office because I was going to cry. So not me!).

If I eat very little I feel pay most of the time, but I know that's just not healthy.

I have managed to start back on b injections but 1mg per three weeks doesn't seem to help. I've made the decision to go back to my gastro doc, do any tests, any meds to just try and be me again.

Here's the problem...I can't get in to see him or three months. I've already been living like this for so long, I don't think I can take three more months. (family doc isn't an option...she knows about as much about cd as my dogs!). How do I go on feeling so tired, feeling overwhelmed and miserable on a consistent basis and just generally feeling unwell? I can't quit my job, but I am looking for one with less hours. Those who know I have cd at work aren't very knowledgeable or overly compassionate. I have so many days anymore where I just want to leave and go home to bed, but know after how hard I have worked that's not what I really want!

Don't get me wrong I love not having a ton of pain, but I wonder is it really cd without the pain when for years they were synonymous to me.

So, my symptoms....nausea, bloating, diarrhea about 10 times per day (sadly norm for me since surgery), body aches, moody, headaches, no real appetite for the most part, very little patience and exhausted. Is this the new crohns for me?

How do I cope when waiting for the doctor?

 

[Trysha]

Hello
Welcome to the forum
You have certainly had a bad time and it seems to be continuing for you.
The symptoms you have could be consistent with your crohn's.
Have you been receiving treatment for your crohn's ?
If not then this is somewhat remiss of you doctors.
Currently you appear to need some specialised bloodwork such as CBC, ESR CRP, B12
evaluation to name a few.,and some treatment as soon as possible.
As you are aware this should not continue for another three months without some help from a GI specialist.
You could go to Emergency for some help.Do you live in a city with a university teaching hospital? That would be even better.
It is a tall order for a healthy person ---and here you are with crohn's coping with a job and four children.Way too much for one person.
Feel better soon
Hugs and best wishes
Trysha

 

[ajd]

Actually those are typically MY symptoms and I've been diagnosed with Crohn's for 6 years now!
My suggestion to you is to talk to you doc again and explain that you CAN'T WAIT 3 months to see him. Say that there has to be another option even if that means checking yourself into the hospital to see him or another GI sooner. Sometimes being abstinent and demanding will get you an appointment when they don't really have time for you.
Also, talk to your HR person at work and make it clear that co-workers aren't treating your illness with a great deal of respect and see if you can go on a leave of absence without loosing your job. It's a long shot but if you are employed in a large business then they might give you at least a few weeks to get better without the stress of work.
A great tip for diet for me was to keep a food and symptom journal. What you eat, when and amount then subsequent symptoms. Sometimes you can see a link between a certain food (like dairy or gluten) and symptoms later on. Then try to remove one food or type of food from your diet for at least 2 weeks and see if there is a result. This is how I discovered my food restrictions.
Another tip to recovering from antibiotic use (which you never should have been proscribed without your GI doc knowing, often antibiotics cause flares) is to take a probiotic supplement. Go to your local health food store and pick the mildest one available then take half the dosage. If your symptoms don't get worse then you can try to take more but be VERY slow about it.
I wouldn't do any of the advice above before at least telling your GI about it btw. They need to know everything that is going on with your gut, get annoying about it and insist upon talking to them and seeing someone!