I'm overwhelmed...any advice?

Hi all,

My name is Grace and I just discovered this site as I was doing some Crohn's disease research tonight. I'm 28 and I have been sick for about 10 years but was just diagnosed with Crohn's disease this past Wednesday. I saw my first GI doctor 3 years ago when I was having diarhea everyday and had lost about 15 pounds, and he never had a diagnosis for me even though he did a colonoscopy and endoscopy. I figured it must be food allergies (like I had when I was little), so I would eat about 3 things and hope for the best. Apple sauce and saltines were my best friend :)

Then last year I started randomly vomiting. No warning, just projectile vomiting. That freaked me out, but again my doctor did a colonoscopy and endoscopy and said my rectum was inflammed and prescriped some kind of steroid enema, but no diagnosis. he did a gall bladder ultrasound thing, but there wasnt an issue there. After about 6 months, the vomitting finally stopped, so I just went back to eating like normal (and gained the weight back).

What finally made me change doctors was about 3 months ago I started having bleeding. I went back to the same (stupid) doctor and he said "you're young, you're otherwise healthy, let's not make a mountain out of a molehill." (That really makes me mad that he blew me off like that!) He prescribed the same steroid enema as the other time and told me as long as it was bright red, it was fine, and it was part of the inflammed rectum. Then the bleeding got worse. It got so everytime i went to urinate, blood would also come out of my rectum, without anything else. I called him back, crying because the pain increased, and he again blew me off. Finally I called University of Maryland and they recommended someone to me.

I saw her a week ago, she set me up with the colonoscopy and diagnosed me with Crohn's that day. SHE BELIEVED ME! She said looking at my colon made her "hurt" becuase of how damaged and full of ulcers it was. She said I'm anemic from the blood loss and dehydrated since my body doesnt hold the (massive amounts of) water I drink. I told my first doctor i was always thirsty and had night sweats,b ut he didnt think that was relevant!!

Now I'm reading through these posts and almost EVERYTHING in here is something I've had. I saw one lady even mentions she had salmonella and i've had that twice!! I always wondered if that was somehow related...like maybe it kind of casued a flare-up??

So now I'm on Pentasa, Entocort, Mesalamine rectal suppositories, a multi-vitamin, and iron. It's only been a few days, but already there is less blood! (YAY!!)

I know this is really long, but I have some questions for all of you:

1. I asked my doctor what dietary changes I should make and she said to stay away from dairy (which I already pretty much do), but she said food isnt really a factor. but from what I'm reading, I'm wondering if I should alter my diet anyway. Has anyone seen a dietician who specializes in Crohn's? has that helped?

2. My mom thinks I should sue my first doctor for not diagnosing me with ANYTHING and for blowing me off when I was bleeding. I guess I'm wondering if Crohn's is something that is hard to diagnose? That maybe there's a reason he msised it? I really DO think the bleeding for 3 months was a big deal though. Anyone have thoughts on sueing him?

3. Like many of you, I also feel worse in the morning and I work for the government. We have flex time, which allows us to come in by 10, but recently I've been so sick that i cant get ther euntil around 11 or sometimes later. Do you think it's reasonable to explain my disease to my boss and ask to come in later until I feel better? Like...11 or so?

4. I guess I'm just overwhelmed. I'm excited to think I might feel better soon, but I'm also kind of wondering where I go from here. Do I ahve to take these meds forever? And also...are they super expensive for everyone else??? I have really good insurance, but my medicine for this MONTH alone was $400!!!!! I cant do that forever!!! is that normal??

Sorry for writing so much, but this is all new and I'm feeling overwhelmed and dont know who to talk to.

Thanks for any feedback,

Grace

1. Doctors usually won't give dietary advice for Crohn's beyond "if it makes you feel bad, don't eat it". Specific diets related to Crohn's are SCD (Specific Carbohydrate Diet), the Maker's Diet (similar to SCD, but slightly less strict I think), and low residue - if you search for them on this forum or google them, there will be plenty of info. SCD/Maker's are for the committed and anecdotally they do work for some. Just bear in mind they don't halt the underlying disease process and damage can still be caused, but if they work they should reduce/stop symptoms. Low residue is for those who want to minimise the risk of obstruction or to reduce pain/diarrhoea. Again, it works for some but not everybody. On top of that, many Crohnies have various food intolerances, which are only discovered through trial and error - which goes back to "if it makes you feel bad, don't eat it." Keeping a food diary helps many.

As for avoiding dairy as a matter of cause, I don't agree with your doctor - I think it depends on the individual. I tolerate milk pretty well, as well as I can tolerate anything.

2. If you truly want honest opinions, mine would be "drop it and forget about it". I am sorry that you suffered at the hands of an incompetent doctor. But I don't believe it's a cause for suing. Forget about the past - what's done is done. It's the present which should be important now. By the way, Crohn's can be a very hard disease to diagnose; there have been hundreds of people posting on HW who can testify to spending years without a diagnosis, all the while suffering from Crohn's-like symptoms. It's not always down to doctor negligence/incompetence either.

3. I think it's perfectly reasonable to discuss it with your boss. I would recommend it in fact.

4. I'm in a country where I don't require insurance, so I can't offer any advice or help here. I hope somebody else will be able to offer advice on how to reduce your prescription costs :-/ ... This may not be what you want to hear right now, but yes all Crohn's meds are essentially long-term, maintenance ones. (Except for steroids.) Even if you go into remission, there's a strong argument for still carrying on taking a daily maintenance med. This is because Crohn's has a rather horrible habit of coming back and, if left untreated, to get progressively worse.

In the meantime, I'm glad you got a diagnosis and treatment in the end, and that the blood is already reducing. Best of luck!

Hi Grace and welcome to the best Crohns forum out there, only sorry you have to join our club.  Now on to your questions.

1)  Diet is pretty individual to each of us.  A food diary might be a good idea for you to keep track of which foods bother you and those that don't.  Also once you are in remission sometimes you will be able to eat something you couldn't when you were ill.  I personally follow a low residue diet all the time.  After nearly 35 years with this disease that is what I found works best for me.  Some follow the SCD or Maker's Diet and have success with those.  But for "me" personally I find them to be too much work.  A generally agreed food group to stay away from are processed foods.

2)  I wouldn't bother suing the doctor.  As mentioned above Crohns is very difficult to diagnose.  Even having a colonoscopy and endoscopy Crohns can still be missed as the disease can be anywhere from mouth to anus, and sometimes scopes don't reach those areas.

3) Do tell your boss otherwise he may just think you are slacking off.  Explain that while you are flaring, the meds take sometime to kick in and sometimes it even takes awhile for you to find the right med for you.  But I am honest with my bosses, and my personal opinion its best to be honest.  You don't have to go into graphic details, but explain how you are feeling.

4)  And yes meds are for life.  You need to remember that this is a chronic and incurable bowel disease and must be treated at all times.  I learned that lesson in a very hard manner, and ended up having a emergency surgery because my bowels had completely obstructed.  So I will always take my medications.  You should also considered diet and meds as complimentary of eachother.

Anyways don't worry about a long post, come here and ask any and all questions you have.  Someone will have experienced it and will have suggestions or answers for you.

Hugs

Gail*Nanners*

 

Thank you all so much for your detailed replies, I really appreciate that so many of you took the time to reply to me. It really makes me fell better to know that there are people out there who understand and who have gone through the same trial and error and healing processes I am going through. I think you're all right about just letting the issue with the doctor go. I think part of it was just anger at how he talked to me, more than anything else. But like you said, sometimes doctors are mean and now that I found a good one, I need to just focus on how lucky I am now.

I'm going to try the food journal and just try to eat more healthy in general. I think these medicines might be perfect for me because i'm already noticing improvements...I can't believe it's happening so fast! I hope it keeps up.

Thanks again, everyone, I really appreciate it!

Grace

I think you have gotten some wonderful advice. You can ask your doctor for a referral to a dietitian to help you with your diet and your insurance should cover it. I also have a book recommendation for you. "Cooking Well for the Unwell" by Eileen Behan. She is a registered dietitian and the whole book is based on all the different diet need of various ailments and requirements that you might encounter as a Crohn's patient. Things like Low Fiber/Low Residue, Clear Liquid, Full Liquid, Extra Calories, High Protein.... She explains why your doctor would prescribe a particular diet, how to manage it, and then gives recipes within each section. The book is out of print, but used copies are available on Amazon for about $4. I have 2 copies because I was always loaning mine out and never had it when I wanted it.

As far as the cost of medication: This is something that you will have to look at when enrollment time comes around at your job. I actually changed insurance plans the year after I was diagnosed because my first hospitalization cost me a fortune on a traditional insurance plan. When open enrollment came up, we changed over to an HMO, which cost more on a monthly basis, but it was by far cheaper in the long run.