I don't trust my doctors

Hi everyone. I've recently been diagnosed with Ulcerative Colitis and I haven't been able to eat, sleep, or even move properly for two weeks now. I'm starving and everyone keeps telling me different things. These doctors have been extremely cold the entire time I've been trying to get this sorted out. I had to fight to even get a GI referral and then after the colonoscopy they sent me home with nothing and told me it'd be three weeks before I could come back. So for three days I just suffered. The pain was excruciating (still is) and finally, after I couldn't take it anymore, I called the doctor back and they told me I should have said something while I was there and there was nothing they could do! It wasn't until I threw a fit that they let me come back, but now the medication isn't covered by my insurance so I'm left to try to calm this flare down while the doctors continue to do nothing. I'm scared to eat anything and everywhere I look I see people saying not to eat a ton of fiber, but the doctor said to eat fiber. He also told me I could eat whatever I want when I left the colonoscopy so I really don't trust anyone at this hospital anymore and I don't know what to do because I'm so hungry I can barely walk. Please help.

You can also ask for Uceris, another steroid. I used it to help me with my flare. Worked great.

PPhob

Sorry to hear of your pain. Finding the right GI takes time, one that listens to you is super important. No GI can "cure" you, but they can prescribe oral pills and rectal enemas and suppositories (very helpful) that help lower the inflammation so you can reach remission. Because symptoms don't always match what they see in your colonoscopy and biopsies they are rarely sympathetic when you tell them what you are going through.

Pain meds are a hot button for many docs, they don't want to create an addict so they tend to not respond. And pain meds can slow down your colon and create more problems. So you might be between a rock and a hard place using them. Ask for Bentyl 20 mg which can help cramps, it's a cheap RX. Eat food listed above that your gut has less work processing.

Fiber: couple years ago ALL docs said "eat fiber" but newer research shows it can be negative for some UC'ers (like me). GI's are not very helpful when it comes to recommending what to eat, mainly because there is no "right foods", everyone is different.

Like you I got mad at several of my GI's (after the app't) when they did not respond to what I was telling them. I cried in front of one and she almost tripped leaving the room so fast. Find a better GI to talk to but don't expect them to fix your problems, you are the best person to figure out what hurts you and what helps you.

Search this forum for "pain" and see what other people have done. Marijuana helps some but not in places where it remains illegal.

Best wishes. Keep your head up and complain all you want.

Post Edited (imagardener2) : 5/4/2017 5:50:43 PM (GMT-6)

Hi PhoodPhobia/ all - I have posted once here, but I do not have UC, my mother does. She is in a horrendous flare and we are very worried that she will simply never get out of it. She lays in bed all day, wants nothing to do with anyone, and has to be forced to attend doctor appts because it's so painful and uncomfortable for her to travel. We want her to get a second opinion, but the thought of going through all of those tests from scratch is too much for her and she refuses. She's on Entyvio, prednisone, and Uceris. We have no idea if she's improving or not - she continues to lose weight and her personality has changed completely. She and my Dad see and talk to the doctors a lot, but nothing they've done for her has helped significantly yet - the prednisone did control her symptoms as far as the bleeding, but she is still in the bathroom 10 or more times a day and gets up regularly overnight, and now alternates between constipation and diarrhea I think. No doctors seem able to give any kind of clear vision of whether she's getting better or worse - we just have to wait for the next colonoscopy, which she dreads because of the preparation and invasiveness, and the additional damage it does to the colon.

The one thing she thinks has helped somewhat is talking with a nutritionist - I found one who does phone sessions with her and my father together. She has recommended the GAPS diet and a probiotic. She was feeling better after their second session with her, but then she had a bad day again. They're also sending her to urologists and gynecologists to rule out other things that might be causing her to remain in so much pain - I think her main issues are lower abdomen and rectal irritation/ pain. For some reason, they just will not prescribe her Bentyl - I have asked about it many times based on the recommendations of patients on this forum, but the doctor is afraid it will have a negative effect on the Entyvio or something.

If you're in severe pain and feeling weak and dehydrated PhoodPhobia, you could do what my mom did once in order to avoid traveling in the car and waiting hours in the ER, which she just couldn't have handled - call an ambulance. They took her straight to the ER, pumped her with nutrients and fluids, kept her overnight and did all the tests at once to make sure she was stable...you might also be able to see other doctors there with different opinions/ advice about what's going on.

For others on this thread - is there any standard amount of time these flares typically last? Is it normal that she seems like she's slipping away? I attribute the moodiness to the prednisone, but she's only on 5 milligrams at this point, they've been phasing her off of it. I guess Uceris is a steroid also...but whatever it is, I don't understand how she's going to live this way much longer. She hasn't laughed in a month and doesn't even read or keep herself occupied - she lays in bed with the TV on but doesn't actually listen to it. She yells at my father and anyone who tries to say anything to her. It's a brutal disease, and I feel for everyone dealing with it.

Thanks for the info notsosicklygirl. Will reply in a new post so as not to co-opt this one.

Home made chicken broth will do you the most good. The boiled chicken meat is also bland and easy on the tummy. Only cooked veggies. I always do well with carrots and zucchini. Eggs were my comfort food. I concentrated on getting as much protein as I could because I was loosing weight and not absorbing nutrients. Smoothies with bananas and yogurt or kefir are good. I add collagen peptides powder or organic beef gelatin or a veggie based protein powder. Doctors will say food doesn't affect UC because there's no scientific evidence to support it. But most patients know that some foods make our symptoms worse. Things to consider cutting out: wheat/gluten, sugar, dairy, nuts and grains. Sound like you need a GI who will have more sympathy for your condition. There are free assistance programs available to help you get your medications at no cost (through the manufacturers -- go to their website and look for their patient assistance program) but your Dr needs to help advocate for you.

Specialist doctors are often brief, gruff, and their bedside manner sucks. There are better doctors out there and you can always shop around for a better one (admittedly it can take months to switch so work with your current one as best you can for now). Speaking of shopping around, the same can be done with meds as there are always more affordable options. What were you prescribed? Cheaper medications and generics are available and might be a better, more affordable option. Insurances prefer certain meds over others, follow the insurer's choice for the best rates. Your gasteroenterologist can prescribe any equivalent med (there are many).

It's incredibly common for people to post they need to almost scream and relentlessly pester their doctors for what they need to be well. You've got to become your own best advocate for what's necessary to have a good quality of life.

Dealing with and fighting insurance is our official UC past time. We all do it, try to get treated in the most cost effective way, appeal insurance rejections, call and ask for cheaper meds, etc.

I got to do this this afternoon, new insurance and the pharmacy wanted $525 for a 30 day supply of rowasa and of mesalamine dr (insurance says generic but not the right kind of generic...god).

iPoop - "Dealing with and fighting insurance is our official UC past time." - Ha! I'm only a couple months into my diagnosis and I already feel this way. So true.

Phood - My insurance didn't want to cover my oral meds either (though, ironically they will cover the more expensive rectal meds without any issue). Luckily, the drug manufacturer (in my case, Salix) offers a program for people whose insurance don't cover their meds. So, I am able to get the drug Apriso for free for the first 30 day supply and then $10/mo. after that. Please look into discount programs by visiting the drug manufacturer's website. If nothing else, you should be able to try Apriso by using their discount program.