Stopping all treatment

[tots]

When I joined this group in 2010- I had been in the hospital for 8 days and
was rediagnosed with CD through a SBS. I was re diagnosed in 2015 with a CT scan. I have since not reached remission. I failed Humira (severe headaches) and
Cimzia- nothing happened there. After looking at my joints during a more active point in my flare up I was started on Remicade. My theory is by spending $9300
a pop, I should feel better than I do. My agreement with my Dr was after 6 months "we" would add Imuron. He changed his mind. Six months later I had a colonoscopy and EGD. He did not see the CD ALTHOUGH he was unable to each the spot seen on SBS and CT scan.

During this time I have seen two Rheumatologists. One said regular osteoarthritis
the other said inflammatory erosive osteoarthritis. The second Dr had added methotrexate due to the fact my CD symptoms were not yet well controlled.

So I went in for my follow up (Rheum)and here is what I get, I have Osteoarthritis. I also have Grade ! anterolisthesis L5 1 and Bilateral pars defect.
None of which should really cause any pain. unless of course I use a jack hammer!

I am tired of being treated like I have lost my mind. I was the number one person at work, I push myself hard and try not to take my disease to seriously, live like a regular person.

At this point I am going to go off all meds, stop my Remicade and go back to work.

I really am not a whiner, I push myself and work hard at what I do. I suppose the
worst thing about me is I don't know how to stand up for myself very well.

What I will not due anymore is beg for medical help or leave another Drs office with my tail between my legs because I feel like a damn nut case!


Thanks for taking the time to read this!


Lauren

 

[ronroush7]

Please do not go off all your medicines. You are likely to make the disease worse. Just keep pushing until you get under the right type of care to get your disease under control. Let us know how you are.

 

[tots]

Thank you Ron. Between my CD and my husbands
Pancreatic cancer I just don't know how much fight I
have in me. Getting Drs I can trust and who trust me
shouldn't be this hard.


Lauren

 

[ronroush7]

Sending support and prayers

 

[Optimistic]

Hi Tots. How are you today? i am thinking of and praying for both you and your husband. Let us know. Thanks.

 

[Tigerflying]

When I joined this group in 2010- I had been in the hospital for 8 days and
was rediagnosed with CD through a SBS. I was re diagnosed in 2015 with a CT scan. I have since not reached remission. I failed Humira (severe headaches) and
Cimzia- nothing happened there. After looking at my joints during a more active point in my flare up I was started on Remicade. My theory is by spending $9300
a pop, I should feel better than I do. My agreement with my Dr was after 6 months "we" would add Imuron. He changed his mind. Six months later I had a colonoscopy and EGD. He did not see the CD ALTHOUGH he was unable to each the spot seen on SBS and CT scan.

During this time I have seen two Rheumatologists. One said regular osteoarthritis
the other said inflammatory erosive osteoarthritis. The second Dr had added methotrexate due to the fact my CD symptoms were not yet well controlled.

So I went in for my follow up (Rheum)and here is what I get, I have Osteoarthritis. I also have Grade ! anterolisthesis L5 1 and Bilateral pars defect.
None of which should really cause any pain. unless of course I use a jack hammer!

I am tired of being treated like I have lost my mind. I was the number one person at work, I push myself hard and try not to take my disease to seriously, live like a regular person.

At this point I am going to go off all meds, stop my Remicade and go back to work.

I really am not a whiner, I push myself and work hard at what I do. I suppose the
worst thing about me is I don't know how to stand up for myself very well.

What I will not due anymore is beg for medical help or leave another Drs office with my tail between my legs because I feel like a damn nut case!


Thanks for taking the time to read this!


Lauren

So sorry to hear this Lauren. I understand what it is like to be treated like you do not matter. I hope that you get the help you need. Like you, I do not know how to push for more aggressive tests. I am considering taking a drill seargent to my next doctors appointment. Good luck.

 

[Ozboz]

Never stop your meds I did this and now regret it vadly

 

[woops!]

Ohh please be careful. I definitely understand your frustration. I had to change GI's last year and I don't think my new one listens as well as the last. It's frustrating to feel that you are just a 10min slot in their day. I'm praying for you. Do you have any friends who might go with you to an appt? I had to take my hubs to the last one as he is more pushy that me and at that point I felt like I was listened too

 

[Honey]

Hi Tots, so sorry you have a lot to deal with just now. It is not easy dealing with so much illness in the family. Crohns can be frustrating as symptoms vary so much and treatment is not easy either. Stick in there though, and don't let your health deteriate by missing meds and further treatment. I know it is hard as meds for one person does not mean it suits another. That is the nature of Crohns, I am sure you will know by now.
:rosette1::welcome::rosette1:

 

[tots]

Thank you guys for all the encouragement!

Before I could stop my meds I got a reality check! My husband was admitted to the hospital
"overnight" due to a small pneumonia. One week later, a bunch of tests he did indeed have a case of viral pneumonia. Unfortunately once we found out his cancer hadn't spread and nothing else was going on, I went into very painful flare. Lost 12 lbs in two weeks, unable to
get into see my GI so I saw my GP and I am now back on prednisone. I will tell you, even after all these years, the pain and I guess you would say the degree of flare in such a short time took my by surprise. Its a great reminder as to why as you all encouraged- don't stop your meds. Even though I didn't stop- it hit me hard. So now the new job is to look for a Dr I can trust and who will trust me!!

Thank you all for taking the time to leave me a comment!


Lauren

 

[ronroush7]

Hope the best for you

 

[tots]

Thank you Ron.

Lauren

 

[Honey]

Thank you Ron.

Lauren

Wishing you will again soon and your hubsand an improvement too.love and prayers to you both

 

[tots]

Thank you Honey!

Lauren

 

[tots]

As you know, I was going to start to taper my steroids today- unfortunately we got some
bad news on my husbands pancreatic cancer. His tumor marker went way up- higher than his initial dx. so he will be getting scanned again tomorrow. there are very "good" reasons for this- his recent hospital stay for pneumonia- having to skip chemo due to pneumonia- dropping one drug because of neuropathy in his hands and feet. He was scanned three weeks ago in the hosp and 6 weeks ago at Moffiitt cancer center in Florida. Those CT scans showed the tumor was "stable" meaning no change. My Dr called and explained to me the pneumonia inflamed his lungs- which is near the pancreas- it also inflames the diaphragm, near the pancreas. So it would make more sense thats the cause. It would be unusual to have that big of a change in just three weeks.

I am hoping this is good logic and all is well. We decided not to tell the kids- no reason to upset them when last time it turned into a false alarm.

Thanks for "listening", this is a hard one!

Lauren

 

[ronroush7]

Keeping you all in my prayers