Yikes, Natalie! Don't know how to advise you -- I lost about 10 pounds in the first 2-3 weeks of treatment, then stopped shedding weight altogether. I do eat many times during the day, and I add a solid slice of bread with butter with every meal.
I'm sorry you're feeling this way. Look at in on the bright side: at least you can add an infinite amount of chic layers to your wardrobe this coming winter and still look thin!

When I first started treatment with Dr. B last October, I weighed 138lbs @ a small frame around 5'6".  Then, I lost 19 lbs quickly dropping to 119 lbs.  Its very scary, I lost my boobs, I had no bottom to begin with.. I looked very ill and no energy.  Fast forward to now..  I recently gained within the past 2 months 5 lbs.  I had my call with Dr. B two days ago and she told me this is a great sign that your body is now turning around and healing quickly.  To hear this, made my day as I hadnt spoken with her since May.  I tried to gain weight those first 7 months and no matter what I ate, I kept eating more and more and not]hing.  I think its just part of the treatmeant in that in my mind, your body is getting rid of alll the toxins.
I ate so much steak, red meat, potatoes to gain weight but nothing.  I wouldnt worry about it too much.  I know you will improve, its just taking time for your body to heal.  My advice is to listen to your body and stick strict to the diet she has you on.  since I didnt want to go back to horrible pain, my motivation has been not to cheat on the diet at all and just eat as much in the correct proportions she advises.
Now that I've gained 5 lbs, I'd like to stay where I'm at 124lbs and also fear that I'm going to gain too much  weight!
 
 

Hey guys,
Soon after I got sick I lost a ton of weight as well. My face looked too bony and my spine and collar bones protruded -- it was not pretty. I've slowly been gaining the weight back over the last six or seven months and am now back to my healthy weight. I once asked Dr. Brizman about the weight loss and she told that that it's not uncommon.  She said that when your body is sick and getting used to the new protocol and diet, it sometimes almost goes into shock and doesn't assimilate your food affectively, leading to excessive weight loss. Once the body acclimatizes and settles down, so long as you're eating well, your body should move back to its healthy weight.  
Give it some time--I'm sure the weight will come back on!
Lauren

I lost about 20lbs when I first got sick, too.  Indeed, lots of comments about being anorexic, etc. got thrown around.  The exact same thing happened when I first had IC 12 years ago, so I think it's just how it works.  I'm now back to my pre-IC weight  and have been for about a year, with a little too much weight gain this past winter (rice cakes and butter did me in!) At this point it's evened out and I feel like my old self. 
 
I really found that putting butter on everything (hamburgers, veggies, toasted rice cakes) brought my weight back up and felt good to me energy-wise. When I was first sick, though, I think I could have eaten a pound of butter a day and still wouldn't have gained weight.  It's like one's body just won't hang on to anything. Give it time and you'll even out.  As your body assimilates food better, you'll be back to your old self. 

Well, this is something I ask myself A LOT.  I think it recurred for a few reasons.  One is that it was never completely gone.  I felt totally normal MOST of the time, but if I had too much coffee/caffeine, was too tired/stressed, drank too much alcohol, had sex when I didn't really want to (curious one), I'd sometimes have "episodes" that would last a few hours to a couple days. 
 
But I think I got hit with another big and long-lasting IC bout because I had not been taking care of myself on many levels.  I had still been having bulimic moments and a lot of depression. My eating habits were a little wierd and I don't think my gut was really ever healed and healthy even though my IC was fairly non-existent. For a few years I'd been having mysterious pain in my lower back and abdomen.  Doctors assured me that I was just stressed, but I knew something was wrong. In retrospect, I think it was issues with digestion that contribute to IC. Then I had pelvic surgery for an ovarian cyst the year before IC came back (the doctors insisted this was what was causing my pelvic pain, but it strangely continued post-surgery...)
 
This round of IC was triggered when I was on a trip and was staying with a friend who was a chain smoker (indoors- it was AWFUL!) and I didn't get much sleep.  Then I drank this delicious but really strong coffee at a farmer's market and had to pee every 15 mins.  It subsided, but then I got on a red-eye flight that ended up being delayed, and when I got off the plane, beyond exhausted, IC was here to stay...
 
The big lesson for me is being really gentle with myself and slowing down to identify what my needs really are.   On the upswing, I just flew to a wedding last weekend and had a great time, albeit, I didn't stay up late with everyone else and I carted my food along with me wherever I went! 

I lost 40 pounds since becoming sick. Such dramatic drop is partially due to the fact that I became ill shortly after having a baby and baby weight was still on. Most weight loss came after eliminating grains and falling in love with running (to battle depression). I went from size 12 to 6. Most people say how healthy and awesome I look adking for an advise, which I use as an opportunity to speak about healthy choices, but I am not used to being so thin. There is also a cost of financial investment in new clothes. Because I prefer not to loose any more weight, I limit running. Every time I run, I seem to loose another pound (i.e., burning more calories than taking in). The last cuff bracelet I bought looks huge, my arms are pretty thin. I want to keep the weight I got now, beyond this, I will start looking unhealthy. Speaking of bracelets, it is a progress, 6 months ago, I could not wear jewelry. They felt like tight bands, extremely uncomfortable. Not an issue now.