My Update (Not Good)

Gabes-Apg · Post by **Gabes-Apg** » Sun Mar 21, 2010 11:26 pm

Wayne
I am sure everyone has some sort of hellish dark time, the intensity and impact can be very different. I have had two in my life (well before MC)

the first really good thing is that you have admitted to being in hell and you are asking for help.

re the answers - i dont mean this to sound harsh or disconnected, the answers are there, and people can help you to find them, i dont know you well enough to help you find those answers but i will try my best.
do you have family or friends near by? if so have you mentioned the situation to them?

quite a few of the discussions on this site, we talk about the issues we have had with various specialists and doctors and practitioners. The best outcome for controling the MC demon is self management. investigate conditions/symptoms and possible meds ourselves.

it is difficult as non one can provide the magic answser that will fix things quickly, there are lots of people that can give advice and help you on the journey.

take care

starfire · Post by **starfire** » Mon Mar 22, 2010 5:35 am

I remember you, Wayne, and I'm glad you decided to post again. I'm sorry you have been down such a difficult road since last fall but I truly believe you are the only one who can truly help yourself. Sounds like you are so depressed you don't really care anymore, but yet you have reached out........ so please, know that we do care about you, both physically and mentally.

I looked a little at some of your back posts:
I also took Entocort last year but it didn't seem to help. I know what you're saying ... in combination with going gluten-free. But my GI would say lets try Entocort with, say, Cholestyramine before trying it with going gluten-free. On the one hand, my GI gives me the indication that gluten causing my problems is nearly impossible. On the other hand, I read the posts here and question what he has said.

I'm wondering how long you stayed on Entocort (experiences around here have indicated a need for at least 6 months) and it surely doesn't sound as if you have made any realy attempts at diet control. In my humble opinion (and it's only an opinion) you probably need both to get your MC under control and then your depression would certainly improve.... would it not?

I personally don't think just relying on your doctor's advice is going to get you where you want to be. It would be nice if it worked that way all the time but it often doesn't.... not just for MC either.

Please, Please believe that we want to be here for you and we do care what happens to you.

Love, Shirley

harma · Post by **harma** » Mon Mar 22, 2010 6:08 am

Hello Wayne, sorry to hear the situation you are in, must not be easy, everything together,MC, flu and being depressed. I am a bit surprised that your GP's only answer to depression is pills. Of course this can also be useful, but didn't he (or she) also suggest counseling or psychotherapy. In the situation you are in now, it is not easy to get yourself.

And GI docs not admitting our MC has to do anything with gluten, almost everyone has experienced that. I am one of the luckier ones, that at least has a GI that has an open mind about it.

I really hope you will find the energy and strength to find the help you need to get your life back on track.

Jan · Post by **Jan** » Mon Mar 22, 2010 7:16 am

Dear Wayne,

I have seen you struggle with depression since you lost all your weight. I'm sorry that you have not had a good experience with your Drs. on finding a way to help you with both your MC and your depression.

I have been depressed a lot of my life. My GP and I have determined that it may have genetic links, as my Mother was depressed a lot also. We had to try several different antidepressants before we found one that worked for me. I tried Cymbalta and didn't get any help from it. I would suggest you tell your Dr. the side effects of the one you are on and see if he can try you on something else.

As far as your MC goes, I am not sure I have any words that can help you. I have so few intolerants that it makes it hard to make suggestions. I did try and go gluten free after I was diagnosed and didn't get any better. I was eating oats to replace my morning cereal. Keeping my food diary is when I found that that was my biggest problem. I still don't eat them, but can eat wheat products with no problems. I will say that finding what you can and cannot eat takes energy. When you are depressed that is one thing that you are missing.

I hope there is a family member or friend who you can lean on during this time, until you get yourself in a position to move forward. We are also here to support you.

You will be in my thoughts and prayers.

Jan

mbeezie · Post by **mbeezie** » Mon Mar 22, 2010 8:19 am

Wayne,

Sorry to hear you are struggling. The first thing that struck me about your depression and bad bout of flu was that your vitamin D level is probably low. I suggest getting your level checked and really working hard to get it above 50. Dr. Cannell has posted info on his website about depression and vitamin D, as well as the flu. I also thinik it's so important to care about what you eat. I know it's hard when you are depressed, but throwing caution to the wind and eating what you want simply will exacerbate your already bad symptoms. I am surely hoping you can find the strength to work on these things.

Take care,

Mary Beth

GLJ · Post by **GLJ** » Mon Mar 22, 2010 9:14 am

Wayne, I am currently in the same situation you are in! I am very frustrated with the doctors and I know I need to probably take matters in my own hands too but it is so difficult. I got sick in December and have been fighting to get well ever since. At times I give up and go down in to a deep dark hole where I seem to only get sicker. I have a great family that supports me but they don't know what to do to help me get well. I've been to ever doctor around here. I have a lot of anxiety about being sick too. I was put on Remeron 15mg. The main reason was to get me an appetite back that I had completely loss. This medicine is a depression/ anxiety med but is known to increase appetite and can also be used for a sleep aid (which I was also having trouble with) I had tremors at first and I still feel really weak on it. Don't know if that is the answer for me either. I tried cymbalta for 1 day before that and said I would never take that stuff again.

As Mary Beth said I would check your Vitamin D level. Mine turned out to be low and know I am on Vitamin D 50,000iu twice a week to try to get it up to the optimum level.

For now all you can do is get through each day while you try to figure out what is best for you. I'm currently on Entocort and I'm still not sure it is the right thing for me. I've been on it 6 weeks and having some success but still having some trouble. I really feel like the next step is for me to find out if I have any food intolerences. Right now I'm struggling to hold on to my job in the meantime.

But I'm going to keep on fighting my way through this and you are too. What choice do we have? Live a life of misery NO WAY!

GLJ

Dee · Post by **Dee** » Mon Mar 22, 2010 11:53 am

Dear Wayne,
I am going to extend my hand to you and I would like you to grab ahold of it!
I will do whatever I can to get you out of that deep depression, free yourself of the anxiety and get on the road to feeling well again.
I noticed that you have been prescribed Celexa, which is a selective serotonin reuptake inhibitor.
Most of us that have tried that class of anti-depressants have found that they will give us explosive diarrhea.
I currently am on Effexor XR, which is an SNRI, serotonin norepinephrine reuptake inhibitor, different from the SSRI's.. I have had no problems with it and it has helped me tremendously, since I have suffered many years with clinical depression. It also works on anxiety problems.
IMO, I'd wean off of the Celexa. Then see whatever doc that prescribed it and ask to try the Effexor XR.
I need to know how long you took the Entocort???? Did you have any adverse effects from it???? Why was it stopped????
Also, you stated that all food that you eat is poison???? I have to reply with, since you are still having the MC symptoms, that you still have inflammation going on in your colon, so until we get that inflammation down, it will seem that whatever you put in your mouth, is gonna dash out of your bottom.
I need some info on what your diet usually consisits of????? Tell me what you like to eat??
I definitely know what it feels like when you seem to have exhausted all options to feel well.
Give me any info about you that will help me take the load off of what you are carrying mentally, etc .
There is HOPE and lots of LOVE on this forum so don't be shy about anything.
You can PM me anytime that you need to and I'll be on the other end of your computer.

Love
Dee

Mars · Post by **Mars** » Mon Mar 22, 2010 5:27 pm

Wayne

First, let me say that there is ALWAYS hope - especially with this big family to hold your hand and guide you each and every step of the way.

It would seem to me that most have answered you very well in previous posts. It appears that either medicine or food intolerances (probably both) are contributing to the long list of problems you are experiencing. I agree with Dee's post on the medicine and food advice.

We all know the road to recovery is to first play sleuth and identify the problems; make yourself knowledgeable in your options and reach out to those who care about you! You will find all of those things (or at least the help) here!

Hey, Spring is here and the flowers will be blooming. I know how much you enjoy the outdoors and nature - it's one thing, just for today to make you smile! Take out your camera and take one beautiful picture a day - its one step at a time towards achieving that smile! I'm sure you will find that that one little thing will begin to peak your interest in your love of nature and one more step towards a better state of mind!

Remember, you will receive open arms and support here - stay in touch!

Hugs,
Mars

wkm62 · Post by **wkm62** » Mon Mar 22, 2010 6:19 pm

Dee · Post by **Dee** » Mon Mar 22, 2010 8:55 pm

Dear Wayne,
NO, don't wait to take my hand until you are functioning better! Take ahold of it NOW!!!!
You don't know me well, but I am a fighter and when it comes to people that I consider my family, I'll give it my best shot!! I've been told that I have a hell of a right hook!!!! Hope that brought at least a slight smile to your face.
We all know there are some real unknowlegeable docs out there where our MC is concerned. As a matter of fact, I just replied to 2 articles that came out of the UofM in Ann Arbor, Michigan from a Dr. Chey.
Don't know how much good it did, but at least I got it off of my chest.
Stay with us here every day whether you feel like it or not. I don't care if you just say, "Okay, I'm here guys!"
I will tell you that when I was put on the Effexor XR, I also hooked up with a therapist for what I will call, talk therapy. It has helped me soooo much.
There are lots of places where one doc will prescribe the meds and their therapists are in the same offices.
I was at a point in my life where I didn't even know who I was anymore. I had totally lost myself and didn't know how to find me!!!! I found no joy, laughter, etc.. I had lost everything about myself.
So, know that you aren't going to walk this journey alone! It's your choice, but I won't let you!

Love
Dee

Gabes-Apg · Post by **Gabes-Apg** » Mon Mar 22, 2010 9:08 pm

re the self management ....
for me here in Australia most GP's do not have the time to be aware of all the meds that are currently available, especially for rare type conditions or symptoms

if you able to do some preperatory research, and ask them for that medication then discuss your reasons for choosing that med, they will do their checks (contra indications, dosage etc)

also in australia - any person presenting to their GP with Depression like symptoms are getting good support. The doctors visit is bulk charged to medicare, ie no cost to patient. you are referred to a counseller/therapist/psychologist and get 5 appointments which is subsidised by medicare for 50% of the cost

all of your current situations will take time..... one step at a time and by the posts above there are people willing to help, accept their help guilt free......it is unconditional

Post by **tex** » Mon Mar 22, 2010 10:24 pm

Hi Wayne,

I've read your posts, and re-read them, and I've thought about what you're saying, and I can sense the frustration and anger in your words, and I believe that I understand what you are saying. If I understand you correctly, you're fed up with your doctors playing games with your health, because they insist on playing by convoluted rules, (and they're so disorganized, that they can't even play together). I agree that they suck, but all the doctors in the world, are not worth wasting one more minute of your life, let alone, the rest of your life.

I've been in that hopeless pit, myself, where I gave up all hope of ever getting any better, and I knew that I was wasting my time trying to get help from the medical community. And I can guarantee that when you are in that pit, and the brain fog due to MC, prevents you from even thinking clearly, let alone focusing on any details, after a while, the depression takes control of your thoughts, and the hopelessness of it all, really sinks in. Eventually, you get so used to it that it begins to seem so obvious, that you accept it as reality.

It's not reality, though - it's depression, and the first thing that you need to do, to regain control of your life, is to wean off that antidepressant, just as Dee suggested. Obviously, it's not working at all - in fact, it seems to be making your depression worse. Whether you replace it with one that actually works for you, is up to you, but you definitely need to get out from under the spell of the one that you are on now. It sucks, big time.

Obviously, resolving the depression is not going to solve all your problems, but until you can get that under control, you're not likely to be willing or able to make the decisions necessary to enable you to make the next step, which is to formulate a plan to get your life back, and then to expedite that plan.

Yes, you do have to make some decisions - you have to decide whether you are going to let your doctors continue to make all your decisions, or whether you are going to make some or all of them yourself. You also have to decide whether you are going to continue to try to remedy your problems by the use of drugs, or whether you are going to solve your problems by your own ingenuity, and your own determination. Either approach works, but if you are going to choose drugs, then you absolutely have to find a doctor who either actually understands MC, or one who is willing to work with you, and willing to learn how to treat the disease. The doctors that you are dealing with now, are doing you no good at all, and there's no point in wasting any more time with them. If you choose to break away from the drugs, then you don't need any doctors - you only need yourself, and a little guidance and support from us.

If you are convinced that all doctors are the same, then that belief makes the decision for you, and it is time to bite the bullet, and take your treatment into your own hands. There are doctors out there, though, who are knowledgeable, while still being open-minded. I have no idea if any of them are located near you, though - they're not easy to find, unless you happen to be luckier than most of us.

As most of the other members have pointed out - we'll help you in any way we can, but you have to make your own decisions, and in order to be able to do that, I totally agree with Dee - you have to get out from under the depression that is currently controlling your ability to think clearly, about your goals, and you definitely need help, in order to do that. You have to want to get better, in order to be able to get better, and if depression is preventing you from wanting to get better, then that's your first target, as I see it, (but I'm no doctor, of course).

Tex

wonderwoman · Post by **wonderwoman** » Tue Mar 23, 2010 12:00 am

Wayne wkm62, When I read posts like yours it brings tears to my eyes. I feel so fortunate that I found this support group and got on the right track after about two weeks of trying to prove to myself I didn't need to be GF etc. How wrong I was and how thankful I am that since being diagnosed on Feb 12, 2010 that I have made such great progress. I feel terrific, no more explosive D, my one BM a day is around 7:00 every morning, and I am finding my new way of eating isn't so bad after all. Being retired and having a husband that gets his own breakfast, lunch, and many of his evening meals makes it a lot easier for me than having a family to cook for and the stress of a job to go to every day.

With such a short time under my belt, I feel I am not in a position to offer advise to you, however my suggestion would be to cook up a large batch of white rice and boil some boneless chicken breasts and carrots. Chop up the chicken and carrots, mix this with the rice and eat small portions of this throughout the day. This is what I ate along with bananas and then I added applesauce to my diet. I did that for a couple of weeks. When I followed this the D left and gradually I was able to slowly add more variety. I even put things in the food processor to make them easier to digest.

Dee has offered her had as well as others. I hope you take it.

wkm62 · Post by **wkm62** » Tue Mar 23, 2010 8:55 am