Feeling kind of hopeless

Crohn's Disease Forum

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Feb 26, 2014
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Met with my 'new' primary care this afternoon...I don't think this is going to work. She said she was mainly concerned with my mental health. (I have been pretty unwell for the past two years. In and out of the hospital. I have a bunch of kids, and some of them have some 'issues' that we deal with on a day to day basis. Because of my illness, my job is tenuous.) I was hoping for guidance. What I got was hand holding. I KNOW that I could use some counselling. Ok? I get that. But I really need someone to tell me what to do with the daily diarrhea and abdominal pain.....thanks for listening....
 
I'm sorry that you feel like your primary care isn't focusing on what you need... It's true that looking after your mental health is important, but if your physical health is what's causing you stress, it makes more sense to take care of that, first. Maybe you could try to stress that to her. Alternatively, you could go to your GI instead of her -- I know I wouldn't go to my primary care for Crohn's problems, because she wouldn't have that same level of understanding.

What symptoms are you currently experiencing? You mentioned diarrhea, but is there blood in your stool? Is the abdominal pain accompanied with urgency?
 
Maybe her belief is that the mental stress is acting as a trigger for your crohn's, and that without addressing it you won't get relief from the crohn's. Sleep has been a huge factor in mine, and maybe her goal is to get those stressors under control for you. May be worth another chat - I assume you went into issues like this with her?
 
I carry a current diagnosis of 'probable crohn's disease'. I have diarrhea 3-6 times a day(an improvement over the 20+ that I was going). I sometimes am up in the night with abdominal pain and diarrhea. It doesn't seem to matter what I eat. Sometimes foods bother me and sometimes they don't. I had a dozen duodenal ulcers when I first got sick. And the took my gallbladder. I take asacol, prilosec, cholestyramine, and zantac. My poo has been guiac positive in the past but not that I know of now. I have pretty constant right upper quadrant pain that can easily get to an 8 or 9 after eating(happens every few weeks) I am nauseous a lot. I lost 40 pounds and struggle to maintain weight. (My current bmi is 18). Testing has been 'inconclusive'. I am tired. I am frustrated. I seem to chose primary care people that accept my current health issues as acceptable. My GI men (local and Boston)seem to be at a loss. I do not know where to turn or what to do,so I live day to day and hope for the best.
 
Have you gotten a colonoscopy recently to see if what you have is Crohn's or not?

If you are considering looking at other doctors, you could check our doctor directory on the forum as well.

The medication you're on is in the first line of treatment for IBD, and there are stronger options available. Have you spoken to your doctors about trying an immunosuppressant like Imuran, 6mp or Methotrexate? There are also biologics to consider, such as Remicade and Humira which have helped a lot of people get into remission.

I'm sorry to hear you're so frustrated. :( I hope that you can find some solutions soon.
 
I'm sorry. I am just tired. I just want this to go away. I want my life back. I guess I am angry that I can't have my life back. Life has changed so much. I want a do-over. Wait. I want to choose something else....
 
I've gone through that stage. Prior to that, pissed stage and sad stage. Keep trying. I just got my meds including Zoloft and 6mp and sulfasalazine increased today, with a 10 mg prednisone as a kicker! (Prednisone makes me crazy! But you FEEL better. I even gardened a little, and cried a little. It's hard to be perfect when you feel like **** everyday. But I'm trying for acceptance of whatever. I may never get there, but keep trying. Hugs, Allison
 
Have you gotten a colonoscopy recently to see if what you have is Crohn's or not?

If you are considering looking at other doctors, you could check our doctor directory on the forum as well.

The medication you're on is in the first line of treatment for IBD, and there are stronger options available. Have you spoken to your doctors about trying an immunosuppressant like Imuran, 6mp or Methotrexate? There are also biologics to consider, such as Remicade and Humira which have helped a lot of people get into remission.

I'm sorry to hear you're so frustrated. :( I hope that you can find some solutions soon.

OH! And theOcean? I got a referral to a rheumatologist for consideration of a biologic, so thanks! You inspired me!:kiss: Allison
 
Maybe her belief is that the mental stress is acting as a trigger for your crohn's, and that without addressing it you won't get relief from the crohn's. Sleep has been a huge factor in mine, and maybe her goal is to get those stressors under control for you. May be worth another chat - I assume you went into issues like this with her?

She did keep stressing that my life was stressful. Lol. What? Perhaps I really am in denial about it. Thank you.
 
Oh and greatauntalta? You are where I was not so long ago, god bless you! I NEVER had Crohn's on my radar, so I just figured I was dying after years of those symptoms you are having. But I had a series of events, eventually, and here I am with fricking CD! I have noticed it's different for everybody what your treatment will be, but I have a little hope now, so hang in there. It does super suck! You have my sympathy, that's for sure.
Allison
 
Oh and greatauntalta? You are where I was not so long ago, god bless you! I NEVER had Crohn's on my radar, so I just figured I was dying after years of those symptoms you are having. But I had a series of events, eventually, and here I am with fricking CD! I have noticed it's different for everybody what your treatment will be, but I have a little hope now, so hang in there. It does super suck! You have my sympathy, that's for sure.
Allison

whew. Thank-you. That IS how I feel.
 
I'm sorry. I am just tired. I just want this to go away. I want my life back. I guess I am angry that I can't have my life back. Life has changed so much. I want a do-over. Wait. I want to choose something else....

Hey GreatAuntalta! I totally agree with you. I'm in the same boat...I don't even feel like I'm getting better I just feel like this is never going to go away. I just went off on my fiance because he's always saying "i'm sorry cutie" or something along those lines. My days consist of work and home. I don't hang out or make plans because my stomach controls my social life at this point. And on the weekends I'm inside the house the whole time. My life has become boring and I'm completely annoyed. :(
 
Quick update...called my insurance company. Called my gynecologist office. (They have been very helpful). Both individuals gave me names and numbers of 'good' people in the primary care business. I have an appointment in a month with an osteopath. I am very hopeful. Thank you. Life is so much better today.
 

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