Hi BLittle - Yes, I understand. The emotional part of Crohn's for me was sometimes much harder to cope with than the physical pain, though that was pret bad too! I read an article not too long ago that said Crohn's patients had higher rates of depression and anxiety. I thiugh, "well duh, of course we do. It's a depressing and anxious long term illness! Anyone would be anxious if they knew they only had about 30-60 seconds to find a bathroom, sometimes towing kids! It keeps you house bound. It steals essential parts of your life and affects relationships. I'm sure most people would be depressed knowing they had an embarrassing illness for which they would probably need surgery and which they would find hard to share with any friends or family!" And then I read that the depression and anxiety were actually due to changes in gut microbes which affected the moods in the brain in a PHYSICAL way! I noticed that when I got fully better due to AMAT, the crazy mood swings and hopelessness went away. Now, that may be because I was better, but it also may have something to do with my physical brain chemistry being affected by my healed gut. I'm usually very even keeled emotionally, so the mood swings were new to me. So that's something for you to consider when looking at the emotional component.
I can only speak for what I've gone through, but I felt that this robbed me of the best part of my life in my late teens and 20s. I so wanted to be like other people, so I pretended I wasn't sick, didn't eat much and neglected my health and doctor visits. Boy am I paying for that now in my 40s! I think I probably could have done a lot of prevention which may have kept me from so many surgeries. I've been angry, resigned, hopeless, sad, regretful, stubborn and in denial for most of my experience but I fought against those things and still tried to go about life as normally as possible. I look back on all that I've accomplished, and how my family loves me no matter what, and I realized that I've been given an amazing gift. The silver lining in long term Crohns for me, is that I never take my good days and my life for granted. I don't know how many good days I'll have left, and I've made peace with whatever my life will bring. I don't put off doing good and loving those around me.
Also, it's shown me clearly what is important to me in life and what is not. I see people worrying over frivolous things, and since stress is a trigger, I've learned to calm down and let a lot of things go that I'd normally worry about. It's put the precious gift of life into perspective, and shown me how lucky I am to remain here with my kids for longer.
A suggestion that helped me early on, which I pass on to others who ask: Say No. Don't let others tell you what you should be doing or rope you into jobs and projects that you don't want to do. Don't feel obligated! You can only handle what you can handle, especially when you're sick. Let the guilt go and take care of yourself the best way you can.
As for your specific questions - I never give up hope that someday, someone will figure this whole thing out and give us a cure. I don't pine for it, but I don't lose hope. This new research about MAP and FMT I've been seeing and is very promising. The best I've seen in years. I also depend on the people that care about me and ask for help when I need it. I let them baby me sometimes and get me special food that I can tolerate. When they get your flare under control, you should start gaining weight back. I always thank my lucky stars that weiht loss is seen as an advantage in our society for women! They ask me what I do for exercise, and I tell them (jokingly) to get a raging digestive disease.
I know I'm really sick when the older women at church ask me if I've been eating! I try to focus on healty foods and supplements that help inflammation, but sometimes I just eat fries because it's been a rough day!
I don't know specifically about Entocort, but as long as you can tolerate other foods, eat them! I do a lot of hummus, guacamole, tuna, quesadillas, fruit and any other food I find really yummy. Larabars are tasty, healthy, pretty cheap and a lot of calories. Think about your favorite healthy foods and start with those. Anyone know anything else about dietary restrictions on Entocort??
Sorry this is so long and preachy. It hurts me to see any Crohn's patient suffering. This is a great, supportive forum. I hope you find some healing and solace. Maybe talking to someone professionally will help you learn how to cope with this new landscape. While Crohn's is difficult, I've had so many great days that I'd never trade it. If I can conquer this, what else can I accomplish! You can do it too. Will be thinking of you often and sending good vibes your way.
