Fed up with lack of information

[groansfromcrohns]

I was diagnosed with crohns last year and for such a serious disease I've recieved such little information from doctors and consultants. I've even had different opinions from different doctors: stress is related, no its not, eat what you want, cut out this and that. I dont know how serious mine is and of course this frustrates me to no end.

I'm currently on pentasa which I take 3 times a day and I see a consultant at the hospital every 6 months (!) last two times i went he said my blood results were normal and that he wasnt worried. ive been quite bad recently which he attributed to stress induced IBS (he prescribed me mebeverine). I'm thankful I only have pain and no other problems but I am very skinny. I just wish they talked me through what I have and gave me a list of things to avoid etc

 

[David]

Hi there and welcome to the forum I can understand your frustration.

When you have "been bad" lately, what symptoms did you have? And prior to your doctor attributing those symptoms to "stress induced IBS" did he or she do any tests other than the blood work? And do you know what specific blood work he did?

In my opinion, Crohn's Disease is one of those diseases where you need to educate the heck out of yourself so that you can ensure you get the care you deserve. It's an incredibly complicated disease and many doctors don't know how to deal with it very well. There's plenty of amazing doctors out there who do, but many of us aren't lucky enough to get those doctors and we need to know enough about the disease to ensure we get proper care either way.

We're here to help you learn and support you during that process

 

[kiny]

I think some doctors are weary of saying "go on a diet" because outside of lactose, there doesn't seem to be any agreement whatsoever on what to eat or what not to eat. There are soooo many conflicting studies. And of those diets that might work, most of them are very calorie restrictive. It's really hard for a doctor to say to go on a diet when they see patients who are underweight probably daily. For people who are in remission and are not underweight at all, it's totally different.

You say you're skinny, so I would try to get as many calories as you can regardless, it really sucks if you drop below a certain point. About 8 or so years ago I came into ER with crohn, I was 81 pounds, I didn't think I was underweight until they told me to look in a mirror and compare that to a normal person. I was super weak, and the risks you take by becoming skinny are fairly large after a certain point.

I got skinny by simply not eating. I had some pain, so I decided not to eat. I will eat tomorrow, no problem. I had pain again, I decided to eat the next day, until I became weaker and weaker. Don't let that happen to you, cause it's not a fun road.

 

[shamrock15]

I don't think you can even agree on the lactose - I have dairy as a regular component of my diet with no ill effect (hate to complicate it even more!).

My first GI gave me directions to really up my calorie intake - it resulted in me buying bulk chocolate to the envy of female co-workers. I have used it as calorie supplement for close to 20 years, and only starting reducing it in the last two years. He instructed me to avoid most vegetables, and also encouraged me to keep a diet log - record everything you eat for probably a couple months to see if there is a pattern between what you eat and possible physical reactions. It doesn't always work, but sometimes it really can reveal things to you.

The more you pay attention to how your body reacts early on, the more likely you are to find out what you can and cannot consume - it is different for everyone. Also - while I haven't seen concrete agreement on stress, I do believe reducing and managing it and regular sleep are keys. The more physically tired I am, the more susceptible to the disease I seem to be. Look for your triggers, and try to reduce or avoid them. Good luck!

 

[2thFairy]

....and avoid anti-inflammatories like ibuprofen!!!

 

[Miss Underestimated]

Sounds like maybe the Pentasa is not enough. My blood tests have always been "in the normal range" when it comes to diagnosing my Crohns.

 

[PlutoCronie]

....and avoid anti-inflammatories like ibuprofen!!!

Oh, yeah!!!!:voodoo:

 

[PlutoCronie]

Also - while I haven't seen concrete agreement on stress, I do believe reducing and managing it and regular sleep are keys. The more physically tired I am, the more susceptible to the disease I seem to be. Look for your triggers, and try to reduce or avoid them.

I am not exactly sure either about the stress factor, but, I do know, for me, that I had been under tremendous, unrelenting stress for a number of years, culminating in a particular situation which brought it to a new level.That's when I had my first flare-up, and was fortunately properly diagnosed within a short period of time. I also have not slept well for years, so, now that I have CD, I really try to rest and sleep as much as I can. I am now also back into spiritual healing, metaphysics and different types of meditation, big time. This seems to be very comforting, at this point, if nothing else, and I hope that in time my holistic lifestyle alleviates all symptoms of my CD and heals me permanently. In the meantime, I still take my sulfa Rx and struggle with the medical establishment. Also, in virtually every type of healing literature I've read , "humor" is mentioned as the natural healer. The healing power of humor has been mentioned on this Forum also. Laughing is an excellent medicine, a fact that has been scientifically proven.:dance:

 

[JohnnyRottenAppleseed]

@PlutoCronie: Stress and not sleeping is what triggers my disease symptoms. Our bodies repair themselves while we sleep.

 

[ruthyp]

crohns is so different for everyone, thats why iv stopped listening to my docs when they try to tell me what lifestyle i should have, i take the drugs they give me but diet i do on my own. I found my trigger to be Wheat, i cut it out and feel better for it. One doc told me diet had to impact on crohns, but you speak to anyone with it and theyl disagree. Only you can find your food trigger, there are main things like Wheat (but this doesnt mean Gluten, dont get then mixed up) dairy is also a big trigger for some people, and too much fruit or veg, i do eat it but dont go over the top.

also with pain, iv used deep heat. sounds weird but i just rub it all over my tummy, although alot of people cant use things like ibuprofen, but seems to help me. xx

 

[2thFairy]

Ibuprofen will make you feel better, but then will ultimately make ulcers worse if you have them and might cause ulcer formation if you don't have them already.

 

[ruthyp]

i also agree with the stress factor! forgot to add that. whenever im stressed i get the pains far worse then when im not x

 

[ruthyp]

Ibuprofen will make you feel better, but then will ultimately make ulcers worse if you have them and can creat ulcer formation if you don't have them already.

Really?!? oh my goodness i didnt know this! i thought because it was making me feel better that it was good! iv just come out of hosp because i had a very large, deep ulcer that just came up, i had no idea why it seemed to "all of a sudden" came up, but now i think, i was using the deep heat for a few weeks before this. im shocked! thank you so much for putting this on! xxx:cheers::cheers::cheers:

 

[2thFairy]

It can also cause bleeding in the small intestine.

I'm not trying to preach....it just freaks me out when I hear a Crohnie or UC'er taking ibuprofen or any other NSAID.

 

[2thFairy]

I was in remission (still on UC meds) and thought everything was good, so starting taking ibuprofen again for stiff joints and headaches. In about a month I had another flare. The doctor really gave me a wallop of a talking to for that! I had to switch to a different med to get it under control again.

 

[PlutoCronie]

I'm another crohnie who stays away from all aspirin and anti-inflammatory pain-killers. They cause flare-ups. In fact I had taken these for years for different types of pain, and I am convinced that this is another reason why I have Crohns Colitis.