How do you cope with the waiting?

I have been in a flare for over two years without a day of relief. At first, I was diagnosed with giardia, but after that had been cured, all of my symptoms remained. I had dropped 25 lbs and was at 105 lbs and 5'8". I was severely anemic and just felt like I was dying. My doctor only did an upper endoscopy and gave me the all clear after seeing no inflammation and kept pushing a gluten-free, dairy-free diet for months (which did not do anything except make me have a breakdown at Christmas while my uncle waved cheesecake in my face as a joke) while I suffered about 15 bms a day with bleeding (which he wrote off as hemorrhoids). He also thought that I should give the iron pills more time to work even though they were obviously not helping enough. I just stopped seeing doctors for over a year and coped on my own (I realize this was a horrible idea but I was just so depressed and felt like no one could help me at the time). I did end up gaining my weight back but still felt pretty awful. I have developed pretty bad anxiety and always wear diapers out of the house as I pretty regularly have accidents. I have given up most of my hobbies since it's pretty hard to do anything far from bathrooms.

This summer, I decided that enough was enough and I was going to do something about this. I went to a new PCP and GI. I finally got an iron infusion and a colonoscopy. I was immediately diagnosed with severe UC affecting my entire colon. So, I thought great, now we can do something about this finally. My GI wanted to go right to Remicade, so after a month of back and forth with insurance, we got that approved. After the loading doses, I still had no change in symptoms. I was tested and had no antibodies and tons of it in my system, but my body just wasn't reacting to it. So, now I've been waiting another month trying to get entyvio approved.

Long story short, I am just so tired of being sick and so tired of being disappointed and so tired of waiting for insurance approvals and medications to kick in. I feel like nothing will ever work and I'll have to get surgery and then I'll have complications from it and then I'll never get my life back. I'm sure a lot of people with UC feel like this, but I just feel so alone and hopeless right now. Everyone (healthy) around me just tells me to be patient and they always know the next thing will definitely work and I should just be positive. How do/did you cope while waiting for relief? How do you just keep trying when everything feels so hopeless?

I have about 15 bms a day that are pretty much always liquid with a ton of urgency. There's also blood in about half of them. I get abdominal pains pretty frequently sometimes sharp pains after eating and sometimes just general uncomfortableness. I also get nausea in the mornings when I first wake up. It also doesn't seem like anything that I eat makes my symptoms better or worse. The symptoms have been pretty consistent for the past 2 years. Oh, I forgot to mention in my initial post, we did try prednisone (40mgs tapering odwn over a month) with no improvement whatsoever.

ditto the stool tests -

notsosicklygirl -
My current GI was a little shocked with how my first GI treated me. I still kind of wonder if I never emphasized how bad I was feeling. I've always found that doctors never really take me seriously.

How long have you been on Remicade now?
I had my first dose of Remicade at the end of August. It's been a little over the month since the third dose. My doctor initially wanted to increase my dosage and frequently, but after the test results came in, he didn't think that it would help, so he wanted to get the ball rolling on entyvio approval right away.
Have you tried steroids?
I did try prednisone at 40mgs and tapered down over a month, but I never felt any difference besides insomnia and crazy moods, which is why my doctor doesn't want to try it again.
Have you had any repeat stool tests?
I've had three clear stool tests after being diagnosed with giardia. Two after the antibiotics and one when I saw my new GI in July. They all tested for c.diff. and other things, not just giardia too.
Have you tried any antibiotics since your initial bout of giardia?
No, after the clear stool tests, I haven't had any antibiotics.

Yeah, I realize that my doctor skipped a lot of other medications, but I was kind of shell-shocked after the colonoscopy results as I never thought it would be IBD and was trying to trust him. He seemed very concerned about how severe the inflammation was and for how long this had been going on. He wants to put me on 6mp as well but wanted to see how I responded to entyvio without it first.

I have been reading many success stories about the surgery, which has calmed me down a lot. I know it may not get to that point, but I'm glad there's an option out there. I'm glad that it worked so well for you. Gives me some hope.

iPoop-
I got my diagnosis mid-July, started prednisone immediately (no help), and started remicade at the end of August. In our last appointment, he wanted to start me on 6mp as well, but wanted to see how the entyvio worked first. Not sure if I should be patient for a little while more or push for this? I really never doubted a doctor's authority before my first GI. It's crazy to think about how different my life would have been these past two years if I had switched doctors right away or just picked a different name off the list of referrals...

Entyvio can take several months to work. My suggestion is to get oral mesalamine, rectal meds and even the 6 mp now and hold off on the Entyvio. You have severe inflammation and my thoughts are to throw everything at it to get it calmed down ASAP. Remicade it pretty powerful for severe inflammation, but you have only been on it 2 months so I wouldn't give up on it yet. Add the other stuff and see where you are in another month. A lot of docs skip rectal meds with pancolitis, but it you can get the rectum inflammation calmed down it can help tremendously with the symptoms. Others here have more experience with rectal meds, but at a minimum I think mesalamine retention enemas or steroid enemas would be your best bet.

ipoop is right ... we have to be our own advocates. I'm not saying ignore a docitor's advice, but don't be afraid to ask questions or even find a new doc if you don't think yours is listening to you.

I agree with the others. You need to throw more drugs at this disease asap! Oral mesalamine, and also rectal, either in the form of enema or suppository. I find uceris (a steroid whose effects are topical to the colon) extremely soothing. I have been on entyvio for 6 infusions so far (7 1/2 months) and while I felt immediately it was going to work, it was about 2-3 months before it really made a difference in symptoms.

Call your Dr today and explain how miserable you are and the affect its having on your life.

Good luck and be sure to let us know how it goes!