New to this forum and just diagnosed with Crohn's Disease.

Hello all,

                I was recently diagnosed with Crohn’s Disease on December 15^th 2010. I was not expecting this whatsoever because I had gone to my doctor in October of this year to figure out why I had a bump on the lower left side of my back which I think is due to a Pilate’s workout. My physician could not explain it and sent me in for an MRI. Well I am sure you can imagine my surprise when my physician sat me down and explained my sore left side would need to be treated by a Chiropractor, however, my physician said she noticed there was some thickening and then normal followed by more thickening in my small intestines which she concluded was a sure sign of Crohn’s Disease. She referred me to a Gastrologist who after looking at my MRI verified that I had Crohn’s Disease.

                My Gastrologist gave me a thin piece of paper explaining the disease that was on her wall and went through a huge overwhelming description of the disease and the types of medications used to treat it. She set me up for a colonoscopy at the end of January and suggested that I look up further information about this disease on websites like Mayo clinic, and WebMD but with a grain of salt because every patient has different symptoms. She then set me up for a colonoscopy.

                I will not be put on any medications until she can see through the colonoscopy if I have mild, moderate, or severe inflammation. She claims that the steroids she will give me whatever they are will not cause weight gain because they will be given in two month intervals. Is this true? What I have read from other people’s posts about the steroids they have been on says otherwise.  I have a sister recently diagnosed with Lupus and she is permanently on steroids which have made her gain incredible amounts of weight and states this is a lie. I do not know what to believe at this point so if anyone can give me advice on what medication to avoid I would greatly appreciate it.

                While looking up the symptoms on WebMD and Mayo Clinic I noticed that I have had many of the symptoms associated with Crohn’s Disease which I had assumed were due to my IBS diagnosis many years ago.  I currently only suffer from upset stomachs whenever I eat chocolate, beans, fried foods, and milk products so I have been trying to avoid them even before I knew about my diagnosis. I have lower right side stomach tenderness where the inflammation was found.  I also have the opposite problem of having a stuffed up stomach. I am exhausted all the time and have ADD that I have been recently put on 20mg of Ritalin for which makes me even more exhausted and testy. I am going to get the medication for that changed next week and now feel so depressed about all this I will also bug my physician about getting put on anti-depressants because I was already border-line depressed before I was diagnosed and feel far worse now.

                If anyone can give me any tips about dealing with this I would appreciate it. I am a 31 year old woman and have been married for 12 years with two great children. I am currently in college working on becoming an Elementary Education teacher and I know stress is horrible on people with Crohn’s but I refuse to let this disease dictate my life. I miss chocolate, fried food, diet soda, and anything with cheese on it but am willing to do away with that to be as healthy as I can be for my family.

Libra1979

Hello Libra1979,

I can totally empathize with what you are feeling.  The good news is that Crohn's is not a death sentence and by listening to your body like you have by seeing what foods/beverages triggers symptoms you can control the disease by abstaining from those trigger items.  It is not easy to do, but it is necessary for maximum relief.  Although everyone experiences Crohn's differently, there are commonalitites that we all share. My experience with prednisone is that it definately healed whatever problem that I was having but it did increase my appetite.  Depending on the dosage that you are put on you may crave carbohydrates and if you don't control it you will gain weight usually in your face and 'trunk' area.  However this weight gain is temporary and once the disease is in remission you can begin eating healthy and exercising to maintain your target weight.  The biggest challenge will be changing your diet but it sounds like you are up for the challenge.  I've given up a lot of trigger foods like; chocolate, wine, coffee, dairy and fried foods but I do indulge from time to time.  I'm hoping for complete abstinence so I'm seeing an accupuncture doctor next week for help with that.  I'd rather abstain than to take drugs.  Good luck!

 

Welcome Libra1979. Like Nanners I am sorry you needed to go looking for a Crohn's support forum.

It is very, very overwhelming at first to be diagnosed with Crohn's. There is an enormous amount of information to take in quickly because you must make treatment decisions as best you can, soon.

If your doctor didn't already suggest it, you may find the Crohn's and Colitis Foundation website helpful. It has information at a more detailed level than you are likely to find at Mayo and WebMD. Here's a link

www.ccfa.org

Some things to keep in mind in these early days -

1. Do not read everything that you can find on Crohn's on the web. Like any disease, there are serious complications that are very rare but get a lot of press. You do not have those complications and so you do not need to know about them OK? What is usually most helpful is solid basic information like you will get at Mayo, CCFA, etc.

2. Perhaps more than many other chronic conditions, Crohn's is somewhat unpredictable in it's presentation. It will take some time for you and your doctors to figure out the way Crohn's is affecting your body and the treatment(s) that are going to help you the most.

Typically the first 2 years after diagnosis involve trying out different treatment strategies until you find what works. This time is particularly stressful for most people and their families. Temporary adjustments in work schedules, school plans, etc. are likely going to have to be made to help you get well. You would expect that if you got a cancer diagnosis right? While CD is not cancer, some of the same expectations apply to those first couple of years so you can focus on getting yourself better.

3. It is typical for it to take several months for many of the medications used to treat Crohn's to take effect. It can take 3-4 months to figure out that a particular treatment isn't working and then to move to something else that again takes 3-4 months. Many people do go into remission fairly quickly, others struggle. Assume you are in the quick remission group until you find out otherwise.

4. Online forums like this one do not attract people who are in remission and doing great. They are getting on with their lives. It's important to keep this in mind. While the CDers on this forum are terrific and supportive, many have unusual complications, problems with their doctors or problems getting into remission and staying there that are not typical. There are many, many CDers who are not this sick.

5. There are no dumb questions. Ask away.

6. It's always a good idea to check things out with your doctor that you hear about or read about online before you take action or embrace the information completely.

7. Finding a GI who has a lot of experience treating Inflammatory Bowel Disease (CD, UC, IC) can make a huge difference in your care. And being able to communicate well and trust your doctor is really important. If you are being treated by a general GI doc, ask her about her experience treating IBD, how many IBD patients she sees. No matter who the doc is, you also need to ask how things work when you have a question for her or need to be seen quickly.

I think my list has gotten a little overwhelming! Sorry about that. I'll stop now.

Best wishes and I hope you get feeling better very soon.

Patricia

PS: If you can manage it, going on an all liquid diet for a few days/couple of weeks may help your symptoms until you can get in for the scope. You can drink Ensure or Boost or other OTC products rather than eat to give your bowels a rest while you still get solid nutrition.

Welcome Libra1979... While I'm sorry that you have to be here, it's good, I'm sure, to have a name for all of the stuff you've been feeling.

As far as the steroids go, I cannot use Entocort (budesonide) because, as njmom says, it doesn't work for every Crohn's patient. Your doctor will know if it would work for you or not. Regarding weight gain, I've been on methylprednisolone (like prednisone) a few times for ~5 months (bad... but it was necessary). I did not gain weight while on them. It is not something that always happens... At least, that was my experience, but others may have had other situations. Just wanted to point out that we are all different, including our responses to meds. So I would suggest not to worry about weight gain until you see if it becomes evident that it will be a concern for you. (The drug that put weight on me was the antidepressant, Remeron)

Sometimes steroid use is necessary, but it can and will cause bone loss (along with other adverse affects such as blood pressure raised, puffy cheeks, extreme high doses can induce diabetes, etc.) I have had all of my side effects from steroids disappear when I quit the med, except the bone loss is permanent. So be sure to take calcium, vitamin D and get some bone strengthening exercise. Even walking will help.

I agree it will take a while for you to get settled into a medication/treatment plan. It's great that you've found doctors who are working through all aspects of the disease, such as the antidepressants, etc. Hang in there... I'm glad they found it and are working to treat it!

Post Edited (sr5599) : 1/1/2011 3:35:10 PM (GMT-7)

InnaL - I am not sure this is the place for advertising your services.
Dave