Hello All,
First of all, thank you for existing and being here (although I am sorry you are). I am so grateful for this forum and wish I had known about it ages ago. I am so sorry for the physical and emotional pain that MC has brought upon everyone :( it is so difficult and you are all so strong. I appreciate everyone's input and vulnerability that I have already read in these posts. Thank you.
I am struggling here, more psychologically it feels because of what this MC diagnosis has brought up for me. Looking for some support. There are a lot of things to say, I'll try to separate them and not ramble. This will be good to get out nonetheless. I feel that I have no one to talk to or connect to. I can cry to my parents all I want about this and as supportive as they are, they understandably just do understand.
I got diagnosed with MC about a month ago and started Budesonide 9mg daily.
1. I am already predisposed to some whammys here, including anxiety, depression, and an eating disorder. MC has only exacerbated that. My anxiety levels are skyrocketing for fear of eating, what to eat, and overanalyzing (perfectionism/OCD kicking in). The depression follows. I've been in recovery from an eating disorder for years, and this year made BIG changes for the better but this has just made it harder and interfered with my progress. It's set me back actually. My anxiety around eating has gotten worse, and I am losing SO MUCH weight. It's hard to eat in general with MC, feeling sick all the time, and I already struggled with eating! How have others coped with the weight loss? Have other people lost a lot of weight too? Also more specifically, is anyone else on here in recovery/still struggling with an eating disorder? I am extremely triggered by the weight loss. It is so hard to try to eat in general, let alone gain weight. And then throw in MC I have no desire to eat but just force myself to. In the worst eating disorder moments of my life, I have been very low weight and this brings me right back to it, very triggering, and I wish I could magically put on 20 lbs. I would very much appreciate connecting with anyone about these topics, privately or publicly! How do we continue to eat and get calories in our bodies?
2. When does it get better?? It seems, until the diarrhea stops it seems almost impossible to retain calories and put on weight again. And my symptoms have not subsided. I thought I was getting better since starting the Budesonide but this weekend has been a nightmare with countless watery diarrhea bouts a day/in the night. It's been non-stop. I have had several breakdowns, the panicky sobbing kinds. I am going crazy about WHAT triggered it and WHY. The why is maddening the perfectionist in me, trying to discover what the key is. I have almost finished a month's worth of the Budesonide. From what I gather, when/if symptoms go away varies. It's hard because everyone is so unique of course with what works and what doesn't. Is it normal for these symptoms to still exist? What have others' experiences been with Budesonide? Has it worked, have they moved on to something else? HOw long does it take for symptoms to go away?
3. Other symptoms- a lot of people have mentioned fatigue, which I would like to hear more about. I feel fatigued all the time. Also, I get a lot of headaches. Daily. Is this from dehydration, and possibly lack of magnesium? I am reading about magnesium a lot and just bought trace minerals with high magnesium. I also have awful muscle spasms, and pain in my body (already had, but related to low magnesium). It would be understandable to be low in this electrolyte and others. I hydrate very well and always have, and am trying to concentrate more on them it's just that I stayed away from magnesium since I thought that caused diarrhea and I don't need any more of that! But trace minerals are quality products, don't think that will make it worse. I also read yesterday that it is good for anxiety/depression...
4. In general- How are people getting through this?? This has turned out to be much more serious than I thought and has interfered with my life dramatically. My work life, social life and relationships, happiness, and peace of mind- all interrupted. I am more distant, don't go out and see people because I feel sick and too depressed, and have to take hours off of work. I am losing precious sleep and rest since I have to run to the bathroom. Already am chronically sleep deprived. In general, my quality of life is very low. On Maslow's hierarchy of needs, we need sleep before everything else, and we are just not getting those basic needs met. Of course the rest of life is going to crumble. Our systems are at war with each other.
So yeah, looking for any insights/comments about weight loss/how to eat, the fears of eating, eating disorders, when it gets better and symptoms stop, medications, coping, and other people's experiences.
That's a lot, thanks for letting me dump all of this. Any input is greatly appreciated. Thank you to everyone, truly. I admire all of you for your persistence through this, and for supporting each other.
NEW, questions with weight/mental health/eating disorder/symptoms persisitng/medicines
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Re: NEW, questions with weight/mental health/eating disorder/symptoms persisitng/medicines
Most of us here have experienced the symptoms you've described in your post. This is a cruel, intimidating disease, and it's not easy to control, but we have to buckle down and do what has to be done, or the disease will dominate our life, for as long as we live. Unfortunately, the medical community does not understand this disease, and consequently their treatments typically leave a lot to be desired. Fortunately, the disease can be controlled with or without medications, by carefully following the recovery guidelines outlined In another area on this site:
viewforum.php?f=79
Most of your questions have been answered in detail in various newsletters published monthly by the Microscopic Colitis Foundation. You can read or download copies of those newsletters at the following link:
https://www.microscopiccolitisfoundatio ... etter.html
Scroll down the page to see the back issues listed there, in chronological order, by publication dates. I would suggest that you start on the right column,With volume 7, issue three, and after reading it, go down the list and read any of the other issues that address your concerns. There are newsletters to address every issue that you've asked about, and most of them discuss the issues in more detail than I could possibly include in this response.
I hope this helps.
Tex
viewforum.php?f=79
Most of your questions have been answered in detail in various newsletters published monthly by the Microscopic Colitis Foundation. You can read or download copies of those newsletters at the following link:
https://www.microscopiccolitisfoundatio ... etter.html
Scroll down the page to see the back issues listed there, in chronological order, by publication dates. I would suggest that you start on the right column,With volume 7, issue three, and after reading it, go down the list and read any of the other issues that address your concerns. There are newsletters to address every issue that you've asked about, and most of them discuss the issues in more detail than I could possibly include in this response.
I hope this helps.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.