Just joined :)

Hi Erica,
Hang in there. You are doing the right thing in looking for another doctor. Based on where you live there are tons of good & bad GIs. To me it sounds like you've been on Prednisone for maybe too long. One of the multitude of Crohns sysptoms is achy joints, I have it too.
Our stories are eerily similar.
I'm 38 years old, but was diagnosed with Crohns my sophomore year at college (20 yrs old). I went from being perfectly normal, no Crohns symptoms (although my younger brother also has it - and had it prior to my diagnosis), to one day completely falling apart, incredible pain, weight lose, you name it I had it. Literally in and out of the hospital seemingly every other week for 6 months until I finally had my first bowel resection. I went 4 months on a zero food diet, Ensure & some weird multi vitamin shake were the only menu items. Basically life sucked. I think at the time of my surgery I was 6'2" but weighed roughly 140lbs soaking wet, down from 190lbs.
What I am trying to say is things will get better.
I got a great doc, who unfortunately just retired at the ripe old age of 83. I am fortunate enough to live in the Philly area which has a multitude of great hospitals and GI practices. I finished my schooling, got married, have had 3 kids, have a good job.
I can't sit here and sugar coat the fact that we both have Crohns. In my 19+ years with Crohns I have had 2 bowel resections, been hospitalized 30-40+ times, been on more freaking meds than I care to remember (Prednison, Entocort, Humira, 6MP, Asacol, Pentasa, Percocet (but very seldom), Fish Oil, Garlic, Iron, Vit C & D yadda yadda yadda. You have to be your biggest advocate, which it sounds like you are doing.
Stress is a killer so try to stay chill, which is ALOT easier said than done, believe me I know....3 kids all girls under the age of 8 tend to bring out some stress.

Good Luck. Like you I just found this site. This is basically the first time I have EVER written or spoken about my Crohns so this in itself is fairly therapeutic.

Welcome Erica. Many hugs for the difficult journey you've had so far.

I agree that finding a GI who specializes in treating IBD might be very helpful. It's an unusual doc who will admit to ignorance and tell his patient to "google it"! Of course that sends the clear message that he doesn't know what to do. In this case, finding someone who knows how to treat CD may help a lot.

Many CDers have an arthritic condition that's associated with CD. It causes pain, sometimes swelling and redness but doesn't usually cause permanent damage to your joints.

You could also ask your primary care doc for a referral to rheumatology to make sure that other conditions that may be causing your symptoms are ruled out.

I am not sure if you are still on prednisone or not. This is one drug that should be used sparingly due to it's high risks of side effects and complications.

The weight gain can be attributed to prednisone if you are still on that - it's one of the most common side effects. You feel like you want to eat a horse at least daily and it's a constant struggle to eat "normally". There is some anecdotal evidence that Remicade can also cause weight gain. So a double whammy. Getting off the pred as soon as is medically safe will help a lot.

The scars will fade - not much consolation right now. My mastectomy scars have faded to look like my regular skin and if I wasn't missing a breast you wouldn't even notice them. So I can reassure you that the day will come when you forget the appearance of the scars. Perhaps you could ask your regular doctor for a recommendation of something, even OTC med, that is likely to help improve it quickly.

If you mean that you are making better choices by eating raw fruits/vegies or food with high fiber you may be making things worse. Many people with CD avoid high fiber foods and cook fruits/vegies especially when flaring.

One thing you could try, if you are up for it, is to go on a liquid "diet" for a few days and see if that helps your symptoms. You can drink Boost or Ensure instead of eating regular food. If you respond to this then you should talk to your doctor about it and consider staying off regular food for several weeks. This may kick you back into remission without having to add more meds or increase the frequency of your Remicade treatments.

Best wishes - I know others will be by to share their experiences.

Patricia

Thanks to all of you! I am not currently on any steroids or any other type of medication for crohn's except the remicade. I will be visiting my new doctor on the 3rd of January so hopefully he can give me some more answers on the things I have been experiencing. I have talked recently to a lady that saw a homeopathic doctor that did some food testing allergies on her? Has anyone ever heard/done such a thing? She has had Crohn's for a while. The way she described it was the doc put certain types of foods in her hand, on her tounge, and under her tounge and then listened to her stomach to see the way it reacted towards to foods. He put her on a no gluten, no soy, or lactose diet and she says it has seemed to help her a lot! I think this is wonderful, if it works. I'm only concerned that its more of a placebo affect with her than anything else, seeing as she is the only one I have ever heard that has done such a thing. With the pain being on my left hand side of my body I am now concerned that it may be such a thing. The first flare up closed the section of my intestines that goes from the small into the large. 7 inches were damaged so that is all that they removed. I've only had one colonoscopy, the one that they diagnosed me with Crohns. I am also super tired, all the time. I could sleep for days and days and STILL feel as if I need a nap! They gave me a b12 shot while I was in the hospital but the gastro, yeah the google man, told me that he wouldnt prescribe me any, he also wanted to argue with me about what portion of my intestines was removed. I'm going to try to liquid diet, the only thing I worry with is if it will upset my stomach. I work, and go to school. I have realized that milk upsets my stomach, however cheese does not. I can sometimes eat salads, and sometimes I can't. I guess I just have some good days and bad days. I know that my scars will fade, I'm just glad to have a belly button, it may not be a pretty one, after my surgery the glue covered it so I was under the impression that there was no belly button left. I keep telling myself it could be worse! With the weight gain and the hair loss I saw my family doctor thinking it had something to do with my thyroid or something, but blood work looked fine. So the only thing I can relate it to would be the remicade. What is IBD? I keep reading people say that but I'm not quite up to date with the lingo! I try and keep stress to the minimum but being 21, and in school, it's VERY tough.

Once again thanks to everyone who took time to reply, your kindness means a lot!!

Welcome! Patricia made some good points, and it's true docs (mainly in Europe) have seen a liquid diet induce remission, but the problem is, patients tend to fail to maintain remission once they stop using the liquid diet.

It's interesting that you found out milk bothers you, but not cheese. Maybe it's because cheese has less lactose. If you are already interested in gluten-free, soy-free, milk-free diets, then you might want to check out the Specific Carbohydrate Diet (SCD), which my daughter is on (she's 23) and which has helped many Crohn's patients. More info about it can be found here www.breakingtheviciouscycle.info

Not allowed on diet: milk, soy, grains, canned vegies, sugar, most canned juices, processed meats (like hot dogs, ham, or other deli meats), processed cheeses like Velveeta.

But these are OK: most oils, butter (but no butter or anything else with "natural flavors" because this phrase could mean almost anything has been added), aged cheese, homemade yogurt, fresh or frozen fruit and vegies, honey, nuts, some juices (like Tropicana OJ and apple cider), poultry, meat, eggs, game (like buffalo meat), and even some forms alcohol (for instance, dry, not sweet, wine).  

The best way to start is to first read the book, "Breaking the Vicious Cycle," to make sure you really understand the diet. Before jumping into the diet, it's best to start the first  few days on the introductory version, discussed in the book and on the website. The website has a great Legal/Illegal foods list which you can quickly refer to in order to make sure a food is OK. 

It's great you are seeing  a new doc right at the start of the new year! It would also be great if the new doc  checked your iron, B12, and folic acid levels. You might want to start getting copies of lab reports and keep them in your personal files. Even docs don't always interpret lab results correctly - for instance, a lab can say B12 of under 300 is normal - true, but this doesn't mean healthy - if you have a level of below 300, you are probably deficient and need a shot to quickly up your levels. Also, most Crohn's patients have low vitamin D - without even having your vitamin D tested, it probably makes sense to take about 600IU of Vitamin D3 daily. Too much folic acid in a supplement is not safe so first, your folic acid level should be checked. Any questions you have about lab tests can probably be answered by checking out the site www.labtestsonline.org