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Frustrated...lost...control freak and I cannot control this and it is driving me MAD!

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Crohn's Disease
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Posted 3/19/2012 5:32 PM (GMT 0)

Let's start with I have been through this site and read many many posts over the years! I have finally chosen to act on impulse and ask for input...along with connecting with other Crohns' patients :)

I was diagnosed 8+ yrs ago, began all the basic meds (asacol, entocort and lialda). In 2005 ended up with 2 abscesses which resulted in a hemicolectomy. After all was taken care of I boycotted physicians :) Stupid idea right...anyway after a while I couldn't control my sx's any longer so I swallowed my pride and sought out help.

I resorted to my past GI physician and after a few months felt as if he wasn't doing what was needed for me so I proceeded to get a second opinion and found a GI Doc that did every test imaginable! He was very proactive and I was started on Remicade (420mg/8 weeks), 6 months post starting this medication I had a colonoscopy which resulted in an increase in the med to 820mg/8 weeks. Well it has been 6 months since this increase and I had f/u colonoscopy which revealed no improvement, in fact a new diagnosis of Diverticulosis. I am incredibly frustrated and I have control issues and I cannot control this...ahhhh!

If anyone has any input I would greatly appreciate feedback...

Thank you for listening!!

J

Posted 3/19/2012 6:33 PM (GMT 0)
Sorry that you are suffering. I'm not yet on Remicade. What do you mean by loss of control? Do you mean fecal incontinence? I'm suffering from this at the time being. It's really annoying and embarrassing. Do you suffer from any perianal problems? I do have proctitis and have just seen my GI yesterday and complained of fecal continence. I told him that the colorectal surgeon recommended that I have biofeedback. The GI told me that biofeedback is only beneficial when the leakage is due to a functional problem but when the cause is inflammation, this inflammation has to be treated. So, he decided to put me on budesonide enema in the evening and pentasa enema in the morning for 15 days and I can use lidocaine and another ointment to soothe the pain. So, try to treat the underlying cause.
Hope you feel better soon:)
Posted 3/19/2012 6:46 PM (GMT 0)
Jules, are you saying that after a year of being on Remicade your colonoscopies show you still have inflammation in the colon and small bowel? Where is the inflammation? Where is the diverticulitis? Are your symptoms getting better or worse?

I'm glad you joined the forum and I look forward to seeing you around here.
Posted 3/19/2012 6:53 PM (GMT 0)
Jules,
Fellow control freak here. I can't stand to leave it up to the doctors so do all kinds of reading about new and alternative treatments, and then I try them. So far some of them seem to have worked, just not sufficiently. Now I'm trying the SCD. After I've exhausted myself and the alternative treatments I'll probably be following the darned doctors orders and taking heavy duty meds anyway. Next stop if SCD fails: enternal nutrition. :(
Posted 3/19/2012 7:01 PM (GMT 0)
Thank you for your prompy replies...
Minnietoty-no not having loss of control, just losing control of my life, ha! I have been dx'd with Crohn's, High Fructose intollerance, my liver enzymes continue to rise slightly at each draw (approx 8 weeks), Vitamin B12 and D deficiency, getting tired of being diagnosed with something new every few months!
Kazbern-yes a year on Remicade and it isn't working :( And yes still inflammation in both. My dx is not Diverticulitis it is Diverticulosis, typically found in 40+ yrs of age, I am 34. I am not sure where it is located, I will find out tomorrow at a F/U appointment. As for my sx's, I have had no change in the past 1+ yrs!
Posted 3/20/2012 7:56 PM (GMT 0)
Fellow control freak here as well. At my worst, I just wanted to be in control of what I given and what I was doing..I am still in the same place..I want to be the one to decide on my treatment..Auto immune diseases are beyond our control which is hard to deal with in the first place..I refused to go to certain doctors and refused certain medication when I reacted to them..I want to research and be in charge of everything from my diet, treatment, and meds..

Cindy

Posted 3/21/2012 6:33 AM (GMT 0)
Hi Jules!

I just wanted to mention that you CAN get back into control!  Look at everything as a practical issue...that may help with how bleak everything seems.  It's helped me!

Also, it almost looks like all of your diagnoses are closely, if not directly, indirectly\, related to Crohn's.  As someone else had mentioned, treating the core problem is the best way to go about it.  If you and your doctors are able to treat your Crohn's and all of the issues that come with it, that loss of control feeling might go away.  Solving the problem instead of providing a temporary solution is always your best bet! :)

Posted 3/21/2012 7:43 AM (GMT 0)
Hey Jules
I think I was feeing like you. Super uncomfortabel with my fate in the hands of docs and drug companies. I just could not handle "take these drugs and I sure hope we get it right". I do SCD. I think the control on what I eat helps me to feel in control Then you start to feel better. Then you have more fun....
I do a healing diet and excersize. That is what gives me a sense of control
d ;
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