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Tired of Being Sick

recent picture of Nancy

recent picture of Nancy

I am a semi-retired woman who hides my UC well (I think). I spend way too much time at home and feel twice my age right now.

I worked as an RN for many years but found the stress to be too much and left the profession. I am divorced with 2 sons who do not live close to me. I am going to become a grandma this year and I want to be able to travel to see my grandson, so I need to get this colitis under control.

I have had UC since 1989. One or two brief remissions. No severe flares but constant irritation. I am the master of denial when it comes to how sick I am. Almost no one in my circle of friends has any idea how sick I really am either. I love to read and I have a Kindle full of mystery books. I also have become slightly addicted to some games I play on my Kindle. (I may need a 12 step program soon.)
I love to eat the foods that I shouldn’t so a change in diet is certainly in order.

Some more about me:

I was an RN for many years until a combination of illness, stress and a divorce threw me into a tailspin. Now I work part-time at a hobby shop and pinch pennies. I live near Kansas City, KS right now. I am on Social Security and Medicare (thank heavens.)
I crochet “squares and rectangles” because I love to crochet but cannot follow a pattern.
When I finally splurged on WiFi, I discovered the fun of the internet and spend way too much time searching stuff. I have a cat that I am pretty sure I am allergic to (achooo) but I love the company.
I found out several years after my diagnosis that I had a first cousin and an uncle with UC. My uncle was well controlled but my cousin never found anything to help. We never talked about it, however. Wish now that we had.

Symptoms of Colitis:

I usually have diarrhea in the mornings. I am also pre-diabetic so I need to eat at regular intervals, but once I eat breakfast…I am off to the throne. I have to get up really early on days I work, so I am done with it before I go to work. I don’t have any visible bleeding but am almost anemic. (low normal range Hgb.) I am getting more and more fatigued and I ache all over. Everything I should eat for my diabetes seems to increase my colitis. Oh, and the cramps are awful. Fetal position is my favorite. But, I know when the cramps start…I am not leaving the bathroom for awhile. My colonoscopy showed a part of my colon that was so swollen, there was no visible opening. That is where I still have the most pain and tenderness.
I am afraid of a potential stricture there.

Tired of Being Sick

My colitis started after a terrible, stressful time in my life. Lost jobs, foreclosure of my dream home, move to a tiny home, graveyard shift, no sleep for 4 years….and so forth. I eventually worked with a gastroenterologist that actually had UC and I liked his mild manner. My first colonoscopy showed just the very lower part of my colon was inflamed. I was put on Azulfidine and took a ton of pills that eventually made me nauseated 24/7. I did the round of prednisone and became suicidal. (tapered off with docs help) I lost a ton of weight and was too tired to work. I stopped the pills. I tried the enemas, no help. I just learned to live around my condition.

My ex-husband was a health freak and could not tolerate me being tired and needing to be close to a bathroom. I envy anyone with a supportive spouse. My life reads like a soap opera, but eventually I had to leave my nursing career and was too sick to work for several years. My parents helped financially but never did understand why I couldn’t just “get over it”. I was pushed to get a job and ended up working at this hobby store. I worked my way up to a middle manager but the stress was killing me and when I was laid off from my fulltime job, I stayed on in a part-time position. Even that is getting to be too much, but I need the money, so I continue to push myself. I asked for Lialda and have been on it for about 4 months with only slight improvement. Now my insurance has stop covering it, so I am going to try the Colazal, because it is still covered. Hope it helps.
I also am taking Tumeric, for inflammation and it did help the arthritis in my hands, but hasn’t done much for the colitis. I have spent a fortune on supplements that did nothing.(too many to remember) I am considering a probiotic but my gastro doc doesn’t want me to do that until the colitis meds do their job.
I mentioned to the doc that everything I eat seems to bother me and she started to talk about irritable bowel. No suggestion that a change in diet might help. Thus my own research.

I take a good multivitamin because much of my food comes out just like it went in, and I know I need the vitamins. Imodium is in every purse I own, my locker at work and in the trunk of my car. But I have to be careful not to take it too often. I also have a change of clothes in my car and locker. Thank heavens I haven’t needed them in a long time.

UC has made me paranoid about leaving the house. I have a son out of state but flying on an airplane, with UC, is too frightening for me to attempt. I am so tired most days that I cannot do anything but the easiest housework.

I have no family support, probably because I never complain. We aren’t the type of family that shares troubles.
I now have had UC so long that I am a statistic for bowel cancer. My results from my last colonoscopy were pretty good, so now I want to fight this illness so that I don’t get cancer. I am sick and tired of being sick and tired.

I'd take some grilled kabobers over just about any food options that you can find in the local restaurant scene of most spots (especially the options off the highways in the US...)  This was me grilling on the run in the Central Florida ICW April 2014

I’d take some grilled kabobers over just about any food options that you can find in the local restaurant scene of most spots (especially the options off the highways in the US…) This was me grilling on the run in the Central Florida ICW April 2014

Ask Adam:

“After the Intro diet, is the SCD diet really safe for long term general health ? Does it restrict any food group that is essential ? I have to consider my diabetes, too. (I am getting other books too.)”

I think there is very good chance that the type of eating that the SCD diet is all about may in-fact be better than the normal “western modern day diet”. The reality is that is we all take a moment and look back just a few hundred years (we don’t need to go too long considering how long our species has been roaming around)…anyways, we’ll all find that most of the foods we modern western folk chow on are waaaay different than what the humans of this planet have been eating for hundreds/thousands of years. Of course I’m making some assumptions that the history books I read in school are somewhat correct. And I’m also making some assumptions that McDonald’s, Taco Bell, Burger King, Cotton Candy Machines, Bagels, Donuts, and a few other parts of the modern diet were not around not too long ago…(obviously this list goes on forever)

I hear you though on your concerns with diet change. Especially since its not the typical thing on the menu at the restaurants that we all “should be eating at right…”

But I’m all about the diet change, and I think anyone who is NOT having good luck with the medication dance that we as UC’ers go through, well… a diet change to help improve symptoms is for sure worth a try.

You might want to give a read to this study published January 3, 2014:

The Mediterranean Diet and Nutritional Adequacy: A Review

Here’s a quick quote from the the study:  “The Mediterranean dietary pattern, through a healthy profile of fat intake, low proportion of carbohydrate, low glycemic index, high content of dietary fiber, antioxidant compounds, and anti-inflammatory effects, reduces the risk of certain pathologies”.

And, as you’ll notice, this is super similar to the diet ideas of SCD and what I do daily.

Thanks for sharing Nancy, and best of luck to you however you move forward,

Adam Scheuer

3 thoughts on “Tired of Being Sick”

  1. Nancy, I have read and reread your account. I wish I could offer some solution. The only thing I can do is ask, “Where is the possibility of surgery in your thinking.”

    I had emergency surgery years ago now and got an ileostomy, having lived with uc for several years. It was a wonderful cure. I can’t imagine what my life would have been like over the years without it. It made everything so easy and simple, after the physical and mental horrors of uc.

    I wish you all the best moving forward.

  2. Thank you for your comment. I am happy that you had good relief with your surgery. I know this sounds a little crazy , but then my life WAS crazy for many years (think soap opera), but surgery was never an option, in my mind. For years I had only proctitis and still have only “mild” inflammation, but now the entire colon. (recent colonoscopy) I was an RN for many years and worked ,in the hospital, with many patients whose ileostomies were like a horror story. I know many UC patients have great results, but none of them ever landed in my unit. For a long time going dairy free helped but eventually I became sensitive to many more foods and developed more autoimmune disorders. I have not had a flare with blood in 20 years, and have not been on constant meds, so I tell myself that I am doing okay. (denial ??) I know I have leaky gut and I am determined to heal it and get to feeling better. SCD makes total sense to me when I review my medical history. I just hope I have the courage to keep at it until I do get better. It is not an easy change for me.

    1. Thank you Nancy for the update. I hope things work out well, and that you are able to travel to see that grandson without the physical and emotional stresses of uc . Anyone who has already lived with uc for 25 years deserves a break.

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