Help. Feeling hopeless

[KDarby]

I found this board after joining another forum. I’m grateful so many people here have this condition. I posted elsewhere and Tex gave me some great info to follow a diet. I’m just feeling very hopeless and lost. I am already very picky and don’t eat many things. But I’ve started GF, DF recently. Hasn’t been very long. I see a naturopathic doctor and he has me on megaspore (started last night), probiotics, vitamins, glutamine and such. Don’t know if it’s helping any. I have colestipol tablets but they never seemed to work for me. I’m having WD every day. Bloating. I just don’t know what to do. I’m considering a short term course of prednisone to maybe shock my system into some normalcy until the diet changes can catch up. I’ve been on budesonide three times and relapsed vehemently each time it’s stopped. I’m only 30 and I cannot imagine living my life this way or having to follow some very restrictive diet the rest of my life. Neither one have a very good quality of life in my opinion. Any thoughts suggested and welcomed.

[Redrose54]

Oh my. I really feel for you. I am by no means an expert on this - I will leave that to others - but I can definitely sympathize. One thing I have learned over the past 3 months I've dealt with, trying to "fix" this, is that Time is the biggest healing factor - at least for me. Patience is not one of my strong points, and this disease has really forced me to be persistent even if things don't seem to be going my way. I am also learning that eliminating a LOT more foods than I ever thought I could deal with IS possible. I started out eliminating gluten and dairy, but quickly learned that it took a lot more than that to settle things out for me. I have since eliminated gluten, dairy, eggs, caffeine, alcohol, raw vegetables, legumes, nuts, berries, high fat meats, most raw fruits, any high fiber vegetables, any added sugar, and almost all spices. What I have been eating is lots of jasmine rice (with a blob of coconut oil in it), almond milk, fish, chicken, turkey, squash, sweet potato, banana, applesauce, home-made bone broth, decaf green tea, gf oatmeal. I am supplementing with a multi vitamin, vitamin D (5,000 iu), vitamin K2, calcium, and magnesium. With that, it has taken me three months to get to the point where my stool is #6 on the Bristol chart rather than 7. But my BM's are much less frequent (only 2x/day the past three days!) and are getting more predictable and less urgent. Treating LC is a verrrrrrrry slow process, and has really tested my patience and commitment.
One positive thing that has come of this very restrictive regimen is that I actually feel healthier. I badly miss many, many "feel good" foods and beverages, but I know what will happen if I indulge so I avoid them. The urge passes. Knowing that this is a life-long change is hard to deal with emotionally, but it is what I need to do in order to function decently. And I know that given more time, I will eventually be able to expand my diet to include more variety. But that takes a LOT of time. Patience.
This is hard. No question. But we are all capable of change.
I wish you healing and peace.

[jcml12]

I too feel your struggles and pain as I'm sure everyone on this site does. It is a crappy (no pun intended) disease. I was diagnosed 6 years ago and at that time had been toying with trying GF just for brain fog etc and once diagnosed that threw me into full blown GF. It in itself is hard because hidden gluten can be in so many things. I had been dairy free for about 10 years because I just could not tolerate it so I had that on top of the GF. Once diagnosed with CC I got the Enterolab tests done and reacted to almost everything I was eating. I had to go on the Budesonide after months of trying not to because I just needed a normal life. It helped me greatly. I stayed on the lowest dose 3mg for a year and for 5 years I did great. I still watched so closely what I ate as to me it just wasnt worth it do get sick again. Then Covid hit and although I did not get it, the stress of it, owning a business, worrrying about making it, keeping employees (they are like family) all got to me and it came back again. I did another round of Budesonide and it helped again but after 2 months of being off it, the MC came back again with a vengence. I was tested again back in June 2020 at Enterolab and was still reacting to almost everything I did before but some of the safe foods from before were now a problem. It is so frustrating! I started taking a Zertec daily and some Pancreatic Enzymes and it seems to be helping so far. I am also back on the Budesonide and it is not working very well (which I have read here that this can happen). What it has done has made the BM's much less frequent and explosive and that is a big help. When you worry every time you step out your door that you could have an episode it is so depressing.
What helped me through in the beginning is I started saying the mantra "I eat to live, not live to eat". This helped me a great deal and still does. I used to plan when going out of town on vacation or with friends on a weekend just what we would eat and drink. Like that was going to bring me happiness. I realized I still could be happy, have fun and drink a bit and still have a great time. Often I bring my own food when going to friends or family. They don't care as long as I'm happy. I am very careful on vacation (usually stay at a time share) so I have a full kitchen and I don't mind cooking since there are many hours of the day I can play and not worry about food. I am a person that does not like to give up control and when you get diagnosed with MC it feels like everything has been taken away. Take baby steps to heal and regain control. I am a work in progress right now again and sent a post about a month ago that I felt very defeated. Go day by day as I am reminding myself that everyday. Good luck and you for sure are in the right place as I have learned so much about this disease from everyone here. Our hearts are with you!

[KDarby]

Thank you both for posting a reply. I appreciate your kind words. Just very overwhelmed lately with this.

[Erica P-G]

HI KDarby,

One of the biggest suggestions I can offer you is "Patience not Perfection".....give yourself permission to have bad days, don't beat yourself up. Healing takes time...I had to learn this the hard way too....I wanted to feel good NOW, not later, lol.

Follow what Tex has offered....it will take TIME....
Hugs
Erica

[ershaw]

Hey KDarby,

I'm in your same boat. I was diagnosed a few years ago (mid twenties) with CC. I was on dicyclomine for the first few years after being diagnosed, which helped a little bit. I also cut WAY back on gluten (esp items with yeast) but I wasn't GF - my D wasn't very well managed though. My BF (now husband) and I love to travel FOR food, and the idea of not being able to do that was super depressing, so i just told my body to deal with it. I got really accustomed to finding toilets all over the world. :/

I'm now 31, and after being cooped up for the past two years, realize I'm going to compromise my overall health if I don't take action and help my body out with CC/try to heal. That being said, this phase one food list is depressing AF. I also ordered my A1+C1 test, to see what else I can eliminate. I'm hoping this is all worth it, because right now I feel so overwhelmed about this too.

Hope yours gets better - keep us posted!
Liz