Need help..........

[MisB]

Ok...I'm going for it. I'm not usually very good at expressing myself with personal issues, but I need help. So here goes:

April and May I was hospitalized 3 times and spent a total of 24 days in the hospital. NG tube, CT scans, and upper GI series determine Crohn's is extremely active in two places with a fistula that was headed to the appendix, but is currently closed with scar tissue. They contemplated surgery, but settled for lots of meds and liquid diet. Switched GI dr's between 2nd and 3rd hospital visit. First GI kept pushing food and I kept getting sick. Second GI put me on liquid diet. Been doing ok until I started slowly advancing my diet. Last week, had an episode of excessive pain and bleeding, followed by C. Back to liquids and very soft foods. Now I'm having more pain, fewer BM's, and it feels like I'm straining to drop a watermelon but the stool is very small and soft. I told my GI doctor Monday that the rectum/anal area was sore and things didn't feel right, but he said it's just part of the disease and it's too early to do anymore tests that it's just taking a while to heal. He said I could get a second opinion if I want surgery. I don't want surgery, but I want to get better and will do what I have to. Am I being impatient? It almost feels like it's getting worse. I've been needing to take more pain meds, but they don't seem to be working as well. Does this mean I'm becoming tolerant of the drug or the pain is getting worse? I don't go back to the GI until mid July, but I go to my GP next week.

Should I get another opinion from another GI?

:sign0085:

 

[Pincushion]

(((((hugs)))))

Beverly, I am not an expert but I would say if you are feeling frustrated and unheard then another opinion from another GI might help. It will either put your mind at rest that you are having the right advice and treatment, or will give you an opportunity to explore other ideas with another professional.

Also have you seen a pain specialist? They might be able to help you get a better regime of pain relief set up?

Either way I really hope you start to feel much better very soon.

Keep talking and we will keep listening xx

PS I think you expressed yourself very well

 

[Jennifer]

Last week, had an episode of excessive pain and bleeding, followed by C.

What does "C" mean?

Yes healing does take time but everyone is different, so what's normal for some isn't normal for all. A 3rd or even 10th opinion is never out of the question. There are so many doctors out there and you bet that some are a lot better than others so if you don't feel comfortable with yours, then seek the help from another. That doesn't mean you can't or shouldn't go to your appointment with your current GI this month.

 

[thefreeaccount]

Do you know what his treatment plan for you is? And if so, does it seem reasonable to you?

The key questions would be:
*Assuming you don't get any better, how long will he continue to try the remicade?
* After the remicade, what's next? Surgery or other drugs? And how long will that take etc?

 

[MapleLeafGirl]

Sorry to hear you are having such a rough time. A second opinion never hurts. Always trust your instincts.

 

[MisB]

Thanks for all the input. I really appreciate it. "C" is for constipation. No longer an issue. I've had about 5 BM's today, but still pain, unless I take my pain pills. The most solid thing I've eaten in 2 days is mashed potatos, baby food and yogurt. The treatment plan is wait 6 weeks and see how I'm doing then. At that point possibly another upper GI series or colonoscopy to see how things are healing. He said it's up to me to decide when I feel like I'm able to go back to work, which in my case is go job hunting. My short term disability needs medical proof and he's leaving that up to my primary care physician, who I see next week. So, I'm keeping my diet limited, watching my symptoms, and taking more pain pills than I care to. I've had my family physician for over 10 years and I plan to discuss things in detail. He's a really good doctor. If it gets to bad before my appointment, I'll call or go to ER. Thanks again to all of you for being here for me. It means more than you'll ever know.