I'm overwhelmed...any advice?

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New Member

Date Joined Apr 2010
Total Posts : 2
   Posted 4/4/2010 12:10 AM (GMT -6)   
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,

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2010 7:08 AM (GMT -6)   
Hello Grace! Welcome to HealingWell!

I am so sorry you are having these problems. It sounds like you are on the right path now. Many of us have had really bad experiences with doctors at first. This is a specialty but once you find someone who is trained and experienced, things get much better. I am in northern VA and see docs at George Washington. They have a huge GI department and are excellent.

It will take some time for the meds to stop and reverse the inflammation and for your body to heal. It may take months for you to get things under control so please be patient. I am glad you have a flexible work situation. I would tell your supervisor in confidence what you have and ask for flexibility. Hopefully you can return to a more predicable schedule once things calm down. As for food, I know others from this forum will be on to help you with that. I have only had peri-rectal abscesses (ouch!) but no small intestine or colon involvement, so food doesn't really bother me. There are several types of Crohn's and everyone's experience is different!

I do want to encourage you that things will get better! Once this inital time is past and you find the right doctor and treatment, things become easier! Remember that many folks on this forum have extreme cases of Crohn's. You might think that everyone will have these problems but this is not true. Most people have mild cases and they just don't visit the forum.

Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.

Veteran Member

Date Joined Jan 2010
Total Posts : 8422
   Posted 4/4/2010 9:21 AM (GMT -6)   
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!

Regular Member

Date Joined Apr 2010
Total Posts : 42
   Posted 4/4/2010 10:18 AM (GMT -6)   
Hi Hoping28, I understand where you are coming from, As I just got diagnosed last Wednesday as well, And I believe I have had this for a few to several years, I really can't say. My Dr just thought since the pain and cramping, & D & V only came for me once a year during the hottest month here ( I live in Arizona) He figured I was dehydrated. and it usually only lasted a week. But for the other 11mos, 3 weeks of the year, I ate what I wanted with no trouble. till this last month I ended up having the flair in March and it was the worst ever, Went to hospital because I was scared and after making sure It wasn't C-diff plus alot of other testing, and a few days on IV, they got a GI Dr in there that did the colonoscopy, and sure enough it was CD. And I have obviously had it for awhile because I have a stricture the size of a pencil. Not really sure how long it takes the scar tissue to build up to that point, not even sure they could give me an idea on that. but I'm pretty sure it took some time. As for me so far my Dr told me to stay away from milk unless soy, but said I could have cheese and yogurt, however I've never noticed milk bothering me before as I am an avid milk drinker. and he said to stay away from foods that don't break down. however the GI Dr @ the Hospital told me to eat the low residue diet, and then my regular MD told me just go by trial and error see what does and doesn't give me problems. So as you can see I was given 3 different thoughts from 3 different Dr's. And the advice I am going to take are actually Not of any of them, I figured who better to get the advice from then the people on here that have dealt with this alot longer then I have. I started a journal and been writing what I eat down and I will stay away from foods that most of the people on here stay away from. figured that was a good starting point. I know everyone is different, but I am hoping that over time especially when I am not to scared to try more foods, I will figure out what does and doesn't work for me. I wish you all the luck in the world.
42 yr Female
Dx'd with Crohn's 03/31/10, Fibromyalgia 97, Allergies since birth, Anxiety 06, Depression 97, IBS 00,
Endometriosis 01,Anemia since teen years, Osteoarthritis 00, Diverticulosis 07.
Just started Prednisone 20mg, Imuran 50mg x2

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/4/2010 10:48 AM (GMT -6)   
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.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*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 Mar 2010
Total Posts : 300
   Posted 4/4/2010 12:28 PM (GMT -6)   
Hi, hoping28. You will find that this board is very helpful and the moderators are very knowledgeable.
1.) On the food I am sorry to say this is one that you have to determine. I have found thru reading on this board everyone seems to react to food differently. For me, milk is not off limits for others it is. I cannot handle any type of raw veggie but I can eat them cooked. I have had to find ways to get more calories in me with nutrients that my body can absorb. I started drinking carnation instant b'fast because I could not handle ensure. It gives me some extra vitamins and calories and I found this week I only lost half a pound instead of 2 pounds..(never thought I would see the day I was complaining about weight loss)
2.) I would not take the time nor deal with the stress of suing a doctor. Some are incompetant and some are just not sensitive. I had a GP doctor (not the one I have now) call me a baby killer for wanting birth control pills. I cried all the way home lodged a complaint and just moved on. With this disease you want to stay as stress free as possible.
3.) For work I was very up front with my boss. I am lucky because I work from home but there are times I do need to come in for meetings or training. This way my boss knows that if I have to get up and leave it is because of this. She was very understanding.
4.) I am not an expert on the matter of meds but based on the research I have done on my own and the posts on the board meds are necessary to get the disease under control and keep it that way. Iam fully expecting to be on some sort of medication the rest of my life barring a cure. These meds are very expensive. I am lucky with my insurance because the lialda alone is 706.00 a month. I only have a copay once I meet my deductible.
I wish you all the best and know that it can take time for this to heal. I am still going up and down on this ride and I was told I have a mild case of crohns. When you feel bad don't be afraid to ask for help. My family has been awesome and my mom has helped me so much.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.

New Member

Date Joined Apr 2010
Total Posts : 2
   Posted 4/4/2010 8:09 PM (GMT -6)   
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!


Veteran Member

Date Joined Jan 2010
Total Posts : 8422
   Posted 4/4/2010 8:40 PM (GMT -6)   
Anytime :p

And yes, it's far more important that you have a good doctor now than a bad one - whom you will never see again - in the past. As for the food journal, if I could ever get organised enough, I might join you there :p

(Long story short: Crohn's for 11 years, ate what I wanted for 10 of those years, am currently undergoing the slow and painful business of having my mind changed about being able to eat whatever I want.)

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 4/4/2010 9:28 PM (GMT -6)   
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.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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