Newbie...lost...

[greatauntalta]

Hi, I'm new here. Kind of at my wits end. I don't know even where to begin. This 'flare-up' began 20 months ago(pain/diarrhea/35lb+ wgt loss/surgery) and I am just trying to make it day to day. My husband/kids are very supportive. My extended family(sisters/mom) seem angry and frustrated with my current health situation. I do not know what I am supposed to do. I do what my GI tells me (meds/diet/activity). I still have daily problems with pain and diarrhea but I was able to return to work this past week. I have not gained any weight back but I have not lost any in the last 6 months either. The sisters/mom want me to do more to get well. I try to believe that they are well meaning but they have no idea of what they are asking/telling. I guess I am here to learn to cope...?

 

[scottsma]

Hello and welcome to the forum.Let me just say that you've come to the right place for lots of support,advice and friendship.It can be a problem when family and friends don't understand what we feel,both mentally and physically.But a lot of people on the forum have been and are in the same situation,and I know someone will be along soon to share.In the mean time,I just wanted to welcome you so you know we know,we care and we are interested.Best Wishes.

 

[pink&green]

Hello and :welcome: you definitely came to the right place. Crohn's is the disease that know one see so a lot of people think it's not that serious or if you stop stressing you'll be fine. I remember telling my family that my hubby had Crohn's first they didn't know what it was then once they meet him they were like he looks fine:ymad:

There is lots of support and advice on here and if you need to vent this is the place sending :ghug: your way.

 

[David]

Greetings and welcome to the community. I'm so sorry to hear what you're going through. Having non-supportive loved ones always makes any medical situation so much worse. As such, my heart truly goes out to you

*hugs*

Out of curiosity, what medications are you on and what are your current symptoms?

I wish you well.

 

[greatauntalta]

Hi. I take Asacol, cholestyramine, zantac, and Tylenol#3 as needed. I am looking for a daily non-narcotic pain reliever so that I can work. Mostly I have a lot of diarrhea and abdominal pain. I can usually get thru the day. Sometimes the pain is a bit overwhelming, especially if it continues for more than a day or two. Unfortunately I always seem to run into someone I know when I am having a problem.

 

[David]

Based upon what you describe, I suspect that your treatment regimen is nowhere near sufficient to properly control your Crohn's disease. I'd discuss this with your doctor or even seek out a gastroenterologist who specializes in Crohn's disease in your area.

 

[greatauntalta]

I was afraid you would say that. The sad thing is...I am an RN. I cannot seem to advocate for myself...what a mess...wah wah wah. Poor pathetic me. Now I will have to do better...

Sorry. This day didn't go well. And now I am feeling even more lost. I need a plan. Maybe this weekend I can sit down and actually come up with one.

 

[carrollco]

Hey great aunt: Long before Crohn's I was a patient advocate. I could move mountains, raise money, and go toe to toe with the most obnoxious physician. Now?

 

[carrollco]

I hate typing on cell phones. I too cannot advocate for myself. I handled so much more pain than I needed to because I could not speak for myself. When I have to take ME to the docs I end up a sweaty mess just wanting to get the heck out of there.

 

[greatauntalta]

That is just what happens. My poor gyn M.D..made the mistake of asking how I was really feeling...such a kind man. I cried. And I hate that. I used to work emergency and now I have become those people that tried my patience to the enth degree. So pathetic of me.

 

[mrjohns2]

Don't be too hard on yourself. Take it one step at at time. Have you seen a GI? Have you had a baseline coloscopy since your surgery 20 months ago? How about other scans (CT, small bowel follow through, etc)? Let's get the data and try a new med regiment that might work and help with the pain.

I was afraid you would say that. The sad thing is...I am an RN. I cannot seem to advocate for myself...what a mess...wah wah wah. Poor pathetic me. Now I will have to do better...

 

[greatauntalta]

Thank-you Carrollco, David, and mrjohns2. After posting here yesterday, I spoke with my husband(very supportive). He pretty much said the same thing- That I need to push my GI a little harder to do something or maybe look elsewhere. I guess I am afraid of more procedures etc. My husband asked when was the last time you had a 'good' day? uh...at the beginning of January? I am going to call for an appointment. and make a plan. and move on for real.

 

[David]

That's wonderful! I'm glad to hear it

You DESERVE to feel well again. This disease CAN be controlled, it's about finding the right treatments as well as lifestyle and dietary changes.

Take control of your disease. Try new things. We're here to help you every step of the way