Patients Crohn's disease
New to Group 51/F Diagnosis 2019- Optium Pharmacy Nightmare!
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I am the newbie to the group and just want to share and learn. I was given my diagnosis in 2019. I did have swelling, bleeding and diarrhea. Truth be told I was not overly worried.I had a colonoscopy they gave me some pills (Mesalamine) and sent me on my way saying come back next year. I avoided foods that caused issues and all seems ok. After about 8 months the bouts of stomach pain and swelling seemed to increase and I stopped have diarrhea and started with constipation. Once the physical pain became intense and I had to use Milk of Mag weekly for a month, I called the GI. No change of meds was given,but they did send an order for labs and samples. Dr. also scheduled another colonoscopy. The results showed horrible swelling and the bleeding many biopsy's were taken (all fine) I was sent home with a script for a steroid. (budesonide) . This was a miracle drug for me. Totally relief of swelling but still had some constipation. I received this for a month while Entivo had to be approved by insurance. We are blessed and have wonderful insurance. This was approved though a pharmacy in the US that works with specialty drugs. Optium Pharm sends the nurse to your home and send the meds also. Sound great right? WRONG, I spent hrs, days and eventually weeks, advociating for myself. The med is approved yes, the appoitment I have with the nurse is(example: Wednesday 9am). It's Tuesday 8am I don't have the Entivo. I did this over and over. Never once in 6 doses did I receive the med on time and often had to change appointments (messing up med schedule) and missing work because of the pharmacy incompetence. To top it all off the Entivo just didn't seem to be doing anything. The swelling returned, the constipation got worse, bleeding returned. Went back to GI again, had Pill cam. Showed horrid swelling, bleeding etc. discussing with Dr and doing my homework I requested medication to be changed to Stellera. I only needed one IV dose and could do the maintenance does myself. I just have to pray the Optium Pharmacy can send it out in time. Back to waiting for insurance approval and another month of steroids. Still taking Milk of Mag every week! Then finally came Stellera. I ended up having my first dose on Sunday Fathers Day June 19th because the Pharmacy missed the Friday appointment for delivery and had to overnight it. The Sunday nurse squeezed me in. Its been 10 days. They say it takes time for meds like this to work. I have no swelling, am sleeping, and had a 2 real bowel movements today! This is just my first dose. My family says they can see the difference in my swelling and my happiness. I'm back, not because of Optium but myself and Stellera! I feel good about it.
Anyone else have constipation? Anybody have good stories about Optium Pharmacy?
Welcome to Carenity! 👋And thank you for opening this new discussion.
Let me tag some of our members here in case they have missed the thread! 😉
@Magmil84 @Katontherock @Lhamo62 @Mamatanya @Nicole21993 @cronky1! @rachelle4evr @Teresabolton @LYNNSanta @lovestulips @Horserider @BBagaria @Cherri @mr305! @Paulananthony @Brandijo38 @wlkfree @Faithinhim75 @mrjetson1990 @lwiskirchen @wizzard
Let us give @CindyLou72 a warm welcome!
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Courtney_J, Community Manager, Carenity US
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