Very Sad Dream

Well it's official...I'm anemic and back in a Crohn's flare....it's always a grief process for me when I go back down that road.

I dreamt that I had an identical twin only she didn't have Crohn's and never got sick. My twin was traveling the world, eating exotic foods, publishing professional papers, sitting on community boards, having lavish dinner parties, and running a food bank for the poor! Ahh the things I could accomplish if I had all the health and energy to do it:(

I'll plod on....just sad right now.

I'm so sorry, gumby. Not the answer you wanted, I know.

It seems that your Crohn's isn't very well controlled. What does your GI suggest to get you in a more stable remission?

Hey gumby, I feel your pain!  I am in the same boat or a similar one anyway.  I already tried a biologic and ended up in the hospital with an infection that could have killed me.  They have sent me to a surgeon to get proctocolectomy, as there seems to be no other choice.  I keep postponing the surgery though.  I am in denial and keep hoping for a miracle, I guess.  Best of luck to you. 

Oh, I'm so sorry gumby. I know how you feel. I know I don't have crohn's disease, but when my husband goes through rough times, so do I. My husband has thus far been blessed with feeling normal when in remission. Thanks to remicade, he is able to live a normal life. But when he starts a flare up, it is such a jarring shake-up of life.

Because of the unpredictable course of crohn's disease, you never know what tomorrow will bring. But we are programmed to forget the bad things, so once a flare up is under control and live is normal again, we start expecting that normalcy daily. I go through such horrible, overwhelming anxiety when my husband has health issues, which in turn I think leads to depression.

My mother took me to a class when I was in India, called Art of Living (not advocating it by any means), and one thing from that class stuck in my head - "Expectations reduce the joy". I've taken to repeating that to myself as a level set every day, and I think it helps some. We expect that today will be a good day, that today will be a healthy day . . . we face each day with so many expectations that we don't even realize we have. If we can set those expectations aside, then, we won't be disappointed or depressed or anxious about those expectations not coming true.

I find it very difficult to actually follow it and actually stop expecting "normalcy". But I'm working on it. I stopped taking my anti-depressants once my husband was feeling normal again - but he's had some dips in the road on and off, and each time, I feel like I'm on quick sand again. I think I'm going to start taking an anti-depressant again to help me as well.

I hope you feel better soon. In the meantime, I hope you can find some happiness in each day and find a way to de-stress about your health.

Sending positive thoughts your way.

Hugs,
PV

Hey gumby. I am glad you are better today. I hope each day you feel better and stronger emotionally, mentally and physically. Sending positive thoughts your way.

Thanks for saying I'm a positive force. I have learned so much after my husband got sick - but I have a long way to go before I figure out how to be happy in every moment regardless of the present or the future.

You are right - we do need to revel in joy when we can find it. This is something I have not been able to do for years now, because I am always bracing myself for the next bad thing that may happen. Some days I really envy my dogs, who are the happiest souls I know.

Spring is here, and I hope you find yourself in remission, smiling and enjoying the sunshine very very soon.

PV

I am sorry you both are feeling down.
Please read the book The Mood Cure.
There are very effective healing strategies based on amino acids. I can tell you lots of people swear by it,
healing thoughts
dave

NCOT that is exactly what this book addresses. It starts with a questionnaire that puts you in one of four groups. The questions are almost weird in how accurate they can be. When I took one of the tests I called my wife and kids over to read the questions. It was so accurate we all broke out laughing at poor old dad.
And the questions seem unrelated to an untrained eye, like mine. Things like degree of sensitivity to chemicals, and sensitivity to loud noises, ...
I really hope you take a read. The solutions are a combination of OTC supplements and a bit of diet change, more of this, less of that but nothing too dramatic (nothing like SCD). I know that when you are feeling down even small efforts can seen like climbing a mountain, but I think the effort should be manageable.
fingers crossed it provides a bit of help
dave

Gumby---wishing you happier dreams. I can empathize with your grief process. I hope you can find something like music or pictures to help in regaining your joy while your energy is down. I have found that looking at fun pictures and listening to bouncy music can help lighten the road on these tough days. Vent out that dark feeling like you are so you can get back into your light spot!

Low ferritin is enough to warrant treatment in itself, even if the haemoglobin levels are still normal. Funnily enough, I had a blood test done today, which should also test my ferritin levels. I basically had an old blood test form lying around for months, and decided to take it in today prior to seeing the consultant next week. If my ferritin is still really low, I'll be requesting another iron transfusion.

'IBS' is such a lazy diagnosis :/ Okay, if the doctors can't find anything, they can't find anything, but they should do every possible test first, particularly for somebody with confirmed IBD. Meanwhile, I utterly feel you on the losing patience part. I said in an email to somebody that I've lost all tolerance for being ill. Back in the day, when my disease decided to mean serious business, I took it all on board, maybe because in a certain sense I didn't know any better. But now I'm tired and scared, and seriously don't want any more of this tedious rubbish.

Sorry, that doesn't help in the slightest :-/ I wish I had suggestions, but I don't. It is a waiting game, in all honesty, unless you are so rich you can pay to see a doctor whenever you want. The only thing I can suggest if you're desperate is go to ER: but of course that feels like overkill unless you really are in unbearable pain. Meanwhile, I hope you feel better soon, gumby... :-/

@Dave - Thanks for the extra details. I'll look for the book on Amazon, it does sound rather interesting and like it might be worth a try. Surgery aside, I feel like conventional medicine has not worked for me at all (okay, steroids aside as well, I guess...), and so I might as well consider slightly more unconventional approaches.

Thanks so much NCOT and PV! It really does help tremendously just to know there are folks out in the world who at least understand my frustration. For whatever reason, I am just so much more angry and impatient this time around. I guess I was really having fun and enjoying my life...I feel like I'm being robbed. So my plan is to get the iron infusion (as soon as the infusion clinic will call me back and schedule it---hear me fume) and then wait to see how I feel. I think the anger is coming from knowing that if I'm anemic I have to be out of remission and in a flare....nothing else makes sense for my labs to change so much, so I already have proof it's not IBS! I plan to get the infusion and give it a week like a dutiful little patient, and then unless I feel fine, I'll call the GI again. I had massive D yesterday and barely ate, which is completely abnormal for me...I'm usually chronically constipated. My GI thinks that Crohn's sometimes just "fixes itself" so he's seeing if I can stabilize on my own with just the Pentasa.....I doubt it, but I guess it's theoretically possible. Thanks again and hang in there with me....I really need you right now!

Thanks PV! I talked with the infusion center....they have me scheduled for this Friday, and then 10 days later. Each infusion takes 5 1/2 hours. I'm a little confused because the last time this happened, which was several years ago, they only had me come in for one infusion, and my lab numbers were lower back then. I don't have the energy to call the doc....I'll just try for once to trust him. Besides, if the D keeps up, I'll be calling to ask for Prednisone before too long. Thanks for your support. I can't tell you how much it means to me!!!

Hey Gumby. How are you doing today? I hope you had a good day, and that your digestive system is behaving itself and allowing you to have a good day.

I can't wait for the weekend. It's been one very long work week for me. But it's sunny and warm outside, and everything is blooming, and it lifts my mood. And I just got an office with a window that looks into the courtyard with some cherry blossom trees, and it is just gorgeous. Though, it would be nicer if I could be out there, rather than tethered to my desk.

Hope you're having a good one. Sending positive thoughts your way.

Hugs,
PV