When you were first diagnosed, was there a period of Denial?

Mrs. Poopy Jeans · Post by **Mrs. Poopy Jeans** » Fri Mar 11, 2016 12:08 pm

I think I'm in denial that there is something wrong with my body and that I truly do have an illness and that I need to eat correctly because YES, I do have MC-L.

Last night I was craving just a little of the fizzy water so reasoned that "just a little glass" won't hurt. BAD IDEA! explosive D a 1/2 hour later and all the cleaning that goes with.

I have got to get into my head that I DO HAVE COLITIS-L and I MUST eat accordingly. Feeling a little deflated that I messed up again.

ONWARD!

Post by **tex** » Fri Mar 11, 2016 1:06 pm

Hi Sandi,

Unfortunately yes, most newly-diagnosed people typically have to go through the five stages of grief, namely denial, anger, bargaining, depression and acceptance, before they finally come to terms with the disease and are willing to embrace it and move on so that they can actually learn to reliably control it. Some people never get past the first or second stage, so they never learn to control the disease.

More than a few begin the diet and after a few months or so they are doing so well that they decide that they must not have the disease after all, so at the suggestion of their doctor, or their friends (or their own denial), they go back to their old eating habits and before long they are right back where they started. It's a cruel and unforgiving disease, so we can't cut it any slack or it will punish us every time.

You can do it. Just remember that the foods that now cause you to react are no longer food options for you — they are toxic to your body, so you have to avoid them just as you would avoid any other poison.

Tex

DJ · Post by DJ » Fri Mar 11, 2016 3:00 pm

Hi Sandi,
Sometimes denial is logical and our mistakes prove to us what we need to do. In my case, the most tiny exposure to gluten is a major problem. To accommodate that, I needed to change a lot and give up certain things that I enjoyed. I needed to prove to myself that delicious bread with "trace" gluten would sicken me. I needed to prove to myself (repeatedly) that there is no safe way for me to eat in a restaurant without bringing my own food. It's logical to think that something so extreme is unnecessary. So, time and time again, I've proven to myself that extreme avoidance is necessary. After three years, I never have the desire to eat the foods that made me sick but I do at times seem to "forget" that there is no way I can use a restaurant, no matter what I order.

Good luck, Sandi. We just need to do things differently. It takes getting used to.

Mrs. Poopy Jeans · Post by **Mrs. Poopy Jeans** » Fri Mar 11, 2016 3:15 pm

DJ I guess it's misery loves company and was (sorry)somewhat cheered by your response. I thought I was being a class A Wimp for all my fussing and fretting. Tex, I was hoping maybe I wasn't the only one. I guess I'm learning if there's anyway to wrap my whole being around this, for a foodie like me, I've just got to pull my bootstraps up (what's a bootstrap?) and plow ahead and JUST DO IT!

I would love to hear other's experiences about starting out. It really helps me to see I'm not alone.

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 11, 2016 3:23 pm

Denial is very normal

and totally understandable with something like MC - when we are super inflammed and our bodies are so reactive, it is hard to accept that small drink or a few candies can impact our bodies soo much
I also think that the level of denial is linked with that the majority of the medical fraternity dont take MC 'seriously' as a chronic health issue. the consider the diarrhea as 'slightly inconveniencing'

Its a tough gig to absorb what is going on, make the diet and lifestyle changes that we are suggesting, try and wipe away 30 plus years of beliefs about food and nutrition and 'start from scratch'

Hence the mental and emotional work of 'life with MC' are just as important as the diet changes. the body's ability to heal is reliant on it.

Erica P-G · Post by **Erica P-G** » Fri Mar 11, 2016 5:26 pm

Denial....You Bet!!
Anger....Yes Indeed!!
Cried....A Lot

Alone....felt like it often...but I learned the sooner I came to terms with it the better I was going to be. I still mess up....I'm not perfect, I LOVE Food too.

Try working for a College Foodservice Co for 21 years and then in your 22nd year learn you have MC and can't eat 99% of the food there even if it is healthy for me because I can't have all the fruits and vegetables I want, and I have to be careful of the pan spray that's used because it contains Soy-Lethicin, nor the fried foods because of cross contamination due to gluten products. This has been my life this last year...it started out as a feeling of pure hell...but I have learned what I can do, and I do it because I am feeling better.

Like I said, I'm not perfect, my BM's aren't perfect...but it's progress and I do my best every day. So can you Sandi!

Getting to a place where you can accept this and you will have already gotten more than half way there with MC

(if you are interested in reading a little bit I have a pretty good post when I started back in May 2015 it covers a lot of what you may be going thru.... http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173)
Hugs
Erica

jlbattin · Post by **jlbattin** » Fri Mar 11, 2016 5:38 pm

I agree with Erica.......

Anger.....definitely........
Denial.......it just couldn't happen to me
Emotional wreck.........every day for a LONG time...........

But once I got past the "feeling sorry for myself" phase and began feeling better, things looked a lot brighter.........Do I still have days where I feel sorry for myself? You bet I do...........I still cry at the drop of a hat...........

I just had to change my mindset from live to eat................to eat to live............once you begin to feel better, you'll wonder why you didn't change your diet a long time ago.......at least that's what I've asked myself here lately.......................

Marcia K · Post by **Marcia K** » Fri Mar 11, 2016 5:59 pm

Hi, Sandi. I'm the person who was rarely sick, never called off from work sick and had boundless energy. I loved raw fruits and vegetables. And then the D started...I thought that I had cancer. I don't know that I was angry, I think I was more sad and felt lonely because "no one else" has to eat like this. I was diagnosed in September and the first Thanksgiving and Christmas were very difficult. I don't like being the center of attention and pretty much would have preferred to stay at home rather than eat with my extended family. When you stay the course you'll find that you can get your life back and although you have to watch everything that you eat, life is good. Even now though when I sometimes think that I have to eat like this for the rest of my life it is a little hard to comprehend but it is what it is. Good luck on your journey to healing.

Blueberry · Post by **Blueberry** » Fri Mar 11, 2016 6:00 pm

I never really went through a denial period myself. That's probably because I was young when MC first appeared. What turned out to be a great frustration for me was the denial so many others in the family and friends had. Everyone else seemed to have a belief that all diseases had a cure, and much as seen on TV there is a happy ending. That wasn't the case with me. Doctors had no solutions and brought no relief. I can laugh about it now, but I became so frustrated about the denial that I began asking family members to come and attend my doctors appointment so he/she could hear for their selves what was said. What was always kind of strange about bringing a guest with me to the doctor appointment, is that the doctor then would bring a guest, often another doctor, with him. It could make for a very crowded room.

Marcia K · Post by **Marcia K** » Fri Mar 11, 2016 6:15 pm

I hear you, Blue. If my Dad were alive he would be trying to heal me. As we were growing up my siblings would laugh because he thought beans were the cure for everything. Eat some beans! I can't imagine what eating beans would do to me now!

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 11, 2016 6:35 pm

I too didnt really have a denial period - for me the MC diagnosis was a HUGE relief.
-symptoms and issues that had been happening for years, 'made sense' were connected (and it wasnt in my head per say,
-i found this group of people who had experienced the same things and had been able to resolve those issues

Mrs. Poopy Jeans · Post by **Mrs. Poopy Jeans** » Fri Mar 11, 2016 6:58 pm

Thank you all for sharing your story. I have not cried yet and wish I could sometimes but I'm on Cymbalta to level out my anxiety and I think it holds the tears from falling.

Feeling sorry for myself? Heck YEAH! When people learn that I have an IBD, they don't know anything about MC and frankly they don't want to know for fear they'll catch it, I guess. They just shrug, wish me well and move on. I have a phone plan that is $20 a month with limited minutes and I don't even come close to going over because I rarely get calls or make them because I'm immobile, can't drive and can have about 6 things to eat. No one really wants that burden. Still I have an understanding hubby and 2 wonderful kitty cats so I'm not really that lonely. I'm learning to crochet and that's a challenge with limited brain cells but it keeps me busy.

Oh Blue, your comment was funny and reminded me of my dad. If we meet for dinner and there is pie or cake or something else delicious, he will cajole me with ... Oh just a little bit won't hurt you.... If he only knew!

Thanks loads friends. Stay STRONG!

Gabes-Apg · Post by **Gabes-Apg** » Fri Mar 11, 2016 7:13 pm

Oh just a little bit won't hurt you.... If he only knew!

i came up with a response for when people say that to me

I would say to them - would you drink a little bit of round up poison or a little bit of kerosine knowingly?? they would reply NO
well that little bit of pie is like a poison to my body/immune system...why would i knowingly 'have a little bit'

they tend to leave me alone after that!!

Mrs. Poopy Jeans · Post by **Mrs. Poopy Jeans** » Fri Mar 11, 2016 8:10 pm

Love that response Gabes. Will use it!

Post by **tex** » Fri Mar 11, 2016 8:14 pm

I have to admit that I was luckier than most. When I went to my doctor and described my symptoms and he examined me, he immediately "diagnosed" me with colon cancer. And the GI specialist he sent me to agreed with the "diagnosis". So after 2 or 3 months of going through every gastrointestinal test they had at the clinic (ending with a colonoscopy), when he told me that they couldn't find any cancer, I was so relieved that I forgot to go through the denial and anger stages.

This was 16 years ago, so he also didn't take any biopsies, and so naturally he told me that there was nothing wrong with me and there was nothing that he could do for me. He suggested that seeing a psychiatrist might be helpful. So naturally I was easily able to jump ahead to the depression and acceptance stages.

Tex