Hi Karen-
This is a wonderful place to gain hope and direction. Second opinions are always a good thing but don't be disappointed if you continue to get the same limited "help." I'm on my third GI and have decided to leave it at that and keep my RX for entorcort and follow up for future colonoscopies. I have to go every three years since I've had polyps the past two times.
I agree with everyone's suggestions of giving up the whey. I went GF/DF last November and SF/EF in February. I still have a long way to go but I do see slow improvements with diets changes. For me, soy is a biggie and it's in everything! It sounds like your diet is very limited already so it may be easier to try eliminating gluten, soy, and dairy. I'm 40 and it's taking much longer than I had hoped to heal but I'm more active now than I was a year ago which does wonders. I still fatigue easily and am in bed by 9 PM each night but any improvement after hitting rock bottom is enough to lift your spirits. I too had issues with nocturnal D and I remember how awful it was. In time, with being careful with what you eat, the rumblings and D will get better. I still am cautious about making plans to leave the house in the early morning but I'm at 3-5 visits to the bathroom and I'm good to go.
I was diagnosed about 5 years ago and initially took Prednisone and it worked like a charm. I don't recall nasty side effects and everything returned to normal. I tried Asacol and it made me feel worse. I tried Entocort and I didn't notice an improvement. I became frustrated and quit everything and spent years trying supplements and alternative treatments which never helped since I did not change what I was eating. Last year everything caught up with me and I literally thought I was going to die. I still have my will saved on my Ipod detailing how I wanted everything handled. I keep it there to remind me of my progress. All I remember of last year is being sick ALL THE TIME and any feeling sick EVERY TIME I ate. I recall my summer primarily sleeping, napping, or just laying around. For exictement I moved locations throughout the day. I'd read on the lounge chair on the front deck in my garden, I'd nap on the leather couch then move to the overstuffed lounger to shake things up a bit. Later in the afternoon I'd move to my bedroom because the sun brightens up the room so nicely. When I went up north to our cabin, I'd just lay inside until it was time to go home. Eating was not enjoyable and I developed a fear of food because I couldn't figure out what was making me sick and the doctors made me feel like it was in my head. I stopped eating. I went from 160 lbs to 125 lbs and found it humorous in a not so funny way that I lost the 25 pounds I had always wanted. I know how you feel right now and it's a horrible place to be. I had an extremely hard time adjusting to eliminating pretty much everything I enjoy eating. I still get frustrated but it's become easier. The only reason I made it this far is because of all the help I recieved here. I expected results to show in days not months and years but I have finally adjusted to that notion because I've read what others have posted and it gives me the stregnth to continue.
Last summer I tried Prednisone again and was severly scolded by my doctors for going untreated for so long. It did control the D, however, the side effects became unbearable. I continued to feel run down but I also hadn't modified much of my diet. I did eliminate all processed foods and junk food from my diet and ate healthy but it was not enough because even the good-for-you foods can be problematic. That was hard for me to accept. Soy was big in my diet along with beans and nuts- all of which unknowingly was causing problems. My feet felt like I had lead weights on them, I stopped sleeping regularly and often woke up at 3 AM each morning, my sex drive was gone and there was no pleasure in sex at all. The list of new problems the prednisone created goes on and on. I was supposed to be on a short course of it to gain control of the D but when I tapered and eventually went off the watery D returned with a vengance. It required a higher dose to gain control again and I finally got off of it all together and hope I never have to go back to it again. I'm taking Entort now and have tapered to 3mg/day and have been trying to decrease it from that. It may be something you want to try if you can.
I primarily eat rice, potatoes, and meat now. I've been adding fruits and veggies as much as I can but I have to be careful not to overdo it. I eat way too many tortilla chips but that's just the way it is. I had to give up my beloved natural PB and soy milks but I continue to wake up each morning so it hasn't killed me yet.
I use Silk Chocolate Almond Milk as my decaf coffee creamer and that is a treat for me. I prayed I wouldn't have to give up coffee. I use Coconut milk too but I really don't care for it. Rice milk is another of my favorites and I just got my order of Bob's Red Mill Almond Meal/Flour and am ready to give the muffin recipe posted here a try this weekend.
Hang in there, ask questions and do lots of reading here- it is the trail head on our road to recovery.
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