Help

Hello Kristy, (@sin9) and welcome to Mayo Connect,

I am so sorry to hear of your diagnosis of Crohn's Disease. You say that you were diagnosed 5 years ago and seem to be getting worse. This must be very discouraging for you. Here is a Mayo website that discusses this disorder, http://www.mayoclinic.org/diseases-conditions/crohns-disease/basics/definition/con-20032061.

As we would like to get to know you better, please share with us as you are comfortable doing so, what treatments you are currently using for your symptoms. Has your doctor suggested any medications, diets or other treatments to deal with the pain and the difficulty eating?

Teresa

Hello @sin9,

I'd like to add my welcome to Teresa's; I am truly sorry to hear you are in so much pain, and we're so glad you've joined us on Connect.

I’d like to start by connecting you with other members who have experience with Crohn’s — either themselves or a family member. Please meet @bonitav @mswanda @kaycigirl @judylindholm @gillyk14 @thankful @spiderwebb @jay_baruch @guener @bonitav @joannem @chicoco @gillyk14 @kaycigirl, @tracyann @1228angela @oldkarl @amyk811; I am confident that they will join in with their insights and suggestions for you.

You may also wish to post your message in this discussion on Connect:
Crohn’s disease http://mayocl.in/2ummHmB

And, I would sincerely encourage you to view Mayo Clinic’s IBD blog, http://ibdblog.mayoclinic.org, where Mayo Clinic experts talk about Crohn’s disease & ulcerative colitis, and various treatments, ongoing research, current events.

@sin9, I also wanted to mention that Mayo Clinic in Minnesota has been recognized as the best Gastroenterology & GI Surgery hospital in the nation for 2016-2017 by U.S. News & World Report. If you would like to seek help from Mayo Clinic, please call one of our appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Kristy, have your doctors explored the possibility of prescribing some of the newer biological drugs for Crohn's such as Humira, Stelara? Or procedures such as fecal transplant and endoscopic balloon dilatation (EBD), which is a recognized treatment for Crohn's strictures? We sincerely look forward to hearing back from you.

@sin9 Hi Kristy... good to meet you but sorry you too were diagnosed with Crohns. I was diagnosed when I was 50, and my first symptoms that led to a diagnosis was a very painful obstruction .. which led to surgery. Then the only treatment was prednisone and that wasn't good for me. At any rate, with the obstruction, I could eat NOTHING, not even a bite without excruciating pain. I have had 2 resections and now am being treated with Stelara, one of the newer treatments. First had an infusion and now doing injections every 8 weeks. Not sure how well that's working since it hasn't been very long since I began. Having had my gallbladder removed, has also caused issues with excess bile leading to diarrhea. There is more hope for Crohns patients no than there was in the past. Wishing you good luck and hope you get someone to deal with your discomfort. Bonnie.

Hi Teresa I am currently taking pentasa and predizon I am not sure if the medication is making me worse but I do not have health insurance right now so I don't have a g.i when I did have a g.i he was prescribing me a medication that was doing nothing for me the hospital told me I am in the hospital every few months and if this medication does not work idk what to do I can't not afford another $800 medication I just wish I could go thru one day with out being in pain or getting sick

Almost every hospital has a patient support person. They are known by different titles. This person should be able to help you find the organization that can help you get your meds. Also, you can call your insurance company and ask for the person there. Mine (Humana) has been a big help.

Hello Kristy, @sin9

@oldkarl has a good suggestion: to contact your hospital and talk with the patient support person (or perhaps one of their social workers) and ask how you might get help since you do not have insurance. Someone there might be able to offer you some suggestions - if you don't mind telling us, what state/city do you live in or near?

Teresa

I live in fort Myers fl I have talked to the social workers and I have filled out for assistance and social security I keep hitting dead ends

@sin9 I am sorry to hear that, Kristy.

Hello @sin9 If you applied for SSI benefits and haven't heard anything keep calling them. Like every day and keep on it. I was denied the first time and I appeal it and got a lawyer when I wasn't working. There are good lawyers out there that will not charge you or will charge you once you won your case. Don't give up and keep track of every call and who you spoke to. keep all records of Dr. visits, hospital visit, ER visit. SSI will send you to a dr once you appeal it and have gone thru a 2nd process. Ask your Social Worker for more help as well that's what they are for. Do you have medical assistance in your state? Apply for insurance thru your social worker, hospital, or Obama Care. If you are low income or no income they will help you get it. That's what the program is for to help you. Keep all records of bills to from the day you applied for SSI, they will back pay them and you. The sooner you do all this the better......... Trust me. I had to lose my job because I was so sick and applied for SSI before I lost it because I couldn't work full time no longer. Back in 2010 there was no Obama Care or Law, so my company dropped me. I hope this helps you and your journey in this tough world. Remember you are never alone.

Thank you for the incourging words im still trying It's hard when you don't know wair to go or witch way to turn