What should my doctor be doing?

[shellbell0955]

I am 21 years old, diagnosed dec 2011 with crohn's disease in my small bowel(after having a colonoscopy on my 21st birthday which obviously showed nothing.) I have had stomach issues and general pain in my back stomach and abdomen for as long as i can remember but was typically dismissed, mostly due to my age i believe. After my GI specialist diagnosed crohn's through an upper GI series capsule endoscopy he put me on Lialda which seemed to improve but not eliminate my symptoms. . until this weekend when i had my first flare up since staring Lialda. It was worse than i remember any stomach pain having before. I couldn't get a hold of him and had to go to urgent care where they put me on prednizone(ugh) and pain medications. I have an appointment coming up with my GI doctor. Should he be doing more than just medication management? Should I expect to have a doctor i can reach in the event of a flare up that is not 9-5 mon through friday? Should he be considering if I need supplements? Most of the info I've learned is research I've done on my own. He didnt explain the disease process or side effects of the disease, being a nurse i took it upon myself to learn as much as possible. Any suggestions would be greatly appreciated, feeling a little frustrated and confused at this point!!

 

[Nanotech]

I am 21 years old, diagnosed dec 2011 with crohn's disease in my small bowel(after having a colonoscopy on my 21st birthday which obviously showed nothing.) I have had stomach issues and general pain in my back stomach and abdomen for as long as i can remember but was typically dismissed, mostly due to my age i believe. After my GI specialist diagnosed crohn's through an upper GI series capsule endoscopy he put me on Lialda which seemed to improve but not eliminate my symptoms. . until this weekend when i had my first flare up since staring Lialda. It was worse than i remember any stomach pain having before. I couldn't get a hold of him and had to go to urgent care where they put me on prednizone(ugh) and pain medications. I have an appointment coming up with my GI doctor. Should he be doing more than just medication management? Should I expect to have a doctor i can reach in the event of a flare up that is not 9-5 mon through friday? Should he be considering if I need supplements? Most of the info I've learned is research I've done on my own. He didnt explain the disease process or side effects of the disease, being a nurse i took it upon myself to learn as much as possible. Any suggestions would be greatly appreciated, feeling a little frustrated and confused at this point!!

I am sorry to hear that you had a flare. I would personally not expect that I could get into contact with my GI, but here in Denmark we have emergency GP line, where you can contact a GP when your own GP is out of office. So the procedure would be that if you had a flare in Denmark you would contact that line if your GP is out of office. And they would see you or refer you directly to the hospital.

I hope that you find a solution that you can use.

 

[David]

Hi shellbell and welcome to the forum! I'm really glad you joined but sorry to hear of your problems

What should your doctor be doing? Well, in my opinion, the first thing they should do is get you on the correct medication. Lialda is a formulation of mesalamine which is designed to be released in a manner that benefits mucosal inflammation of the colon. If your colonoscopy was clear and your Crohn's disease is located in your small bowel, I would have been quite surprised if Lialda made a huge difference. Mesalamine (the active ingredient in Lialda) is only approved for Ulcerative Colitis but some gastroenterologists use it for Crohn's Disease as well. The problem there is Crohn's Disease is often transmural (affecting the entire width of the bowel) whereas Ulcerative Colitis is just the first layer that is affected. So unless you have a very mild case of Crohn's Disease, it's not going to help much. And even then, you'd want a formulation that correctly targets where your disease is.

Sorry to no doubt upset you with this news. Unfortunately, you're not the first and no doubt won't be the last person to show up here with this problem.

And yes, he should absolutely check to see if you need supplementation. Common deficiencies for people with small bowel Crohn's disease include vitamin B12, folate, and vitamin D.

We're here for you. Let us know how else we can help.

*hugs*

 

[shellbell0955]

Thanks so much. I did some research on lialda myself and noticed it was generally used for crohns affecting the colon. I will definitely be asking about this. While it has been somewhat helpful i still have symptoms and worry that as the disease progresses it won't be sufficient any longer. I do believe my case os mild but I'd obviously not like it to progress if possible. how often should i expect flare ups if on proper medication

 

[David]

I don't think you should "expect" flareups. The goal should always be to get into long term remission where you don't have any flareups for many years. If you're flaring regularly, then the treatment regimen needs to change.

 

[shellbell0955]

Good to know. My specialist didn't really explain anything to me. He just said he found ulcers in my small intestine consistent with crohns and put me on lialda. I have an appointment tomorrow and I've made a list of questions. Should I consider a dietitian as well or just trial and error on my own? Another major concern of mine is the arthritis in my shoulders, hands especially, hips knees and ankles that I'm already experiencing.

 

[David]

If you can find a dietician who understands Crohn's Disease and the intricacies involved, then I think they can only help. If you find a dietician who google's what to do 15 minutes before you get there, then you'd likely be better on your own. Point being, do your research and see if you can find a good one. If not, educate yourself so much that you can talk circles around any dietician regarding Crohn's disease diet

Bring up the arthritis to your doctor. If they haven't tested you for vitamin D deficiency, ask them to do that as that can help with joint and bone pain if you're deficient. And throw in B12 and folate for good measure.

 

[shellbell0955]

Went today, the speicalist took me off prednizone and put me entocort which ill take for thirty days. He mentioned that prednizone is not ideal for treating crohns for people like myself who have all the lovely side effects it can cause. As far as diet he says avoid fiber but theres no reason to restrict myself any more than neccesary at this time. So i guess a food and symptom journal is my next logical step. I really appreciate all the advice and help from this site. Its not easy to find people with crohns who have experience around my age or in genereal

 

[tots]

If your Dr is not "on call" for any period of time he should have an "on call Dr". No excuse for
not being able to speak with someone. On your next visit as him what his usual protocal is for his patients. I worked for Drs for a long time and that was always the protocal.

Lauren

 

[Cross-stitch gal]

I have always done all kinds of research about UC/Crohn's. Sometimes I'll admit that I've shocked the doctor's office that I knew information already that they were telling me. I think it's a great thing that you're interested enough to do the research on what you've got and I know it's helped me in the longrun