Sick in NJ

Introduction:

I have just been diagnosed with Sever US in the upper and lower colon in December. I am 35 father of two and may have had this for over 10yrs and did not know it. I was diagnosed as lactose intolerant at 24, my GI now thinks that was a miss diagnoses.

I am active and would like to stay active, I go to the gym, play golf and coach baseball. I have not found a diet that works for me, the SCD diet is difficult because I can not tolerate any dairy, so I am open to suggestions.

Colitis Symptoms:

Back pain, lower colon heaviness, upset stomach, Gurd, lose stool but not DH

Sick with Colitis In New Jersey:

UC has made me paranoid and scared. I have found myself crying at night wondering if I can every be the man that I was and that my wife and kids need me to be. My family has been great, but they really don’t understand the mental toll this takes on you.

I have been under a massive amount of stress as I have moved my family from FL back to NJ because I was laid off in May of 2010. The process took 18 months. The first year I spent away from my wife and kids making sure my job was secure, only to let me go because of a merger 30 days after we moved them back. The stress of this culminated 2 days before thanks giving when I have a major flare with a fever of 105.

How do you deal with this everyday

for the rest of your life?

My Doctor is very laid back, thinks I am over thinking things. He is not doing a colonoscopy until the 1 yr mark, he thinks I will be healed by then. He believes that Stress is what is causing this, I don’t disagree.

I know it is genetic also, I am worried I am going to get cancer or need my colon removed, I am just scared all the time. Which is new for me, I am the normal alpha male in the group. Either way I realize that I have this, and now I need to figure out how to eat with it. I know I should not eat bread but it actually is the only thing that does not upset my stomach….what can I do?

I need help, need someone to guide me. At this point if I could just figure out my diet that would be a huge win.

Colitis Medications:

Lialda 1.2 MG 2 pills a day

written by Edward

Submitted in the Colitis Venting Area

Tags: father

7 Responses to “Sick in NJ”

  1. MaggieMarch 4, 2012 at 4:15 pm #

    Find out what your blood type is. You can find all kinds of information on “Eating Right for Your Blood Type” by Dr. D’adamo. This could explain why the scd diet isn’t working for you. Just like one medication doesn’t work for everyon, the same is true of diet. The blood type diet also helps heal other ailments a person may have. Good luck, New Jersey!

  2. OrdinaryWorldWhereRUMarch 4, 2012 at 7:13 pm #

    I am sorry to hear about what you are going through. I know its hard to find peace right now but maybe if you try for 5 minutes of peace now. Then after that 5 minutes is up, try for 10 minutes of peace, and keep trying that. Take note of how tense you feel and intentionally focus on relaxing, first your jaw, then your shoulders, then arms, torso, and all the way down to your toes. Breathe slowly and focused. Try to let go of what hasn’t happened yet and may not ever happen. As far as diet, maybe try a low fiber (aka low residue diet) which is what my GI put me on during my worst flair. I didn’t even start with that much of it. I started with tender cooked chicken breast and potato water (very watered down mashed potatoes). I built it up from there. As far a not eating bread, it is a staple of my diet because that is what works for me. I have nearly stopped stressing about it and am growing to accept if that is all it takes to keep me stable, then bring it on. I never used to eat bread hence the slight aggravation with the fact that it is a big part of my diet. Hey, at least it keeps my weight up. You can find lots of information on the internet about a low fiber/low residue diet. Keep a food diary to track what does and doesn’t work for you since each person is unique. You are right in that those without the disease have simply no idea what it is like and that in and of itself can be frustrating. The most you can do is help them to understand better. Please keep us posted as to how you are doing and feeling.

  3. AdamMarch 4, 2012 at 10:46 pm #

    Hi Edward,

    I’ve read your story now 3 times today. Here’s one thing I think might make you feel ALOT better. It’s helped me out, and it has to do with surgery.

    So many people, (myself included) have been very worried/scared/ and not wanting to ever think or consider the idea of surgery. I totally understand. It’s simply has a big fear factor.

    Although I can’t speak from experience myself, my uncle and several people I know personally have had their colon removed, and are happy as hell about the decision. And I’m not talking about crazy people or freaks or side shows or anything like that, normal people who happened to have UC or Crohn’s Disease, people like you/people like me.

    So here’s the idea, if you do some reading(and maybe you already have) about these people, and many of their stories both before and after their surgery is on this site, I think you will get more comfortable with the colon surgery idea, and hopefully that won’t be such a scary thing, and I’ll bet that you might even stop worrying about that altogether. And my guess would be that by not freaking out about that, you’ll have a much easier time sleeping at night, and getting your UC in remission and back to a normal life.

    I’m one of the believers that stress plays a bigger part in this whole thing than most people, and I also think that by gaining control of certain parts of our lives that were previously out of control, we can on our own help to remove all sorts of unwanted stress.

    Well, just an idea, but maybe it will help you out a bit. Take care Edward, we’re all pulling for you.
    Adam

  4. TrishMarch 5, 2012 at 2:09 am #

    Hi Edward. Sorry to hear you’re feeling so rubbish. Personally I am absolutely convinced that a lot of the fear we feel with UC and Crohn’s is due to loss of B vitamins – this really messes with your head. Get yourself some SCD B-vitamin complex from Lucy’s Kitchen Shop and start taking them at the rate of one quarter tablet a day, and work up slowly. Much of my fear and depression with UC disappeared quickly once I got enough B vitamins down me.
    If you’re losing blood, eat plenty of liver and black pudding (called Boudin Noir here in France – I keep loads of it in the freezer).
    You have been through a MASSIVE amount of stress – no wonder you’re in a flare, and you’ve got that alpha male thing going, which is no help when you’re suddenly vulnerable. But be assured you can do the SCD without dairy – you can take SCD-compatible acidophilus (Lucy’s Kitchen again) instead of the yoghurt. However, SCD-fermented yoghurt, hard, fermented cheese and butter contain no lactose -SCD is a lactose-free diet, if this is the issue – have you thoroughly read Breaking the Vicious Cycle to understand the principles behind the diet? If you have a problem with casein, though, that’s different and you would also have to avoid SCD yoghurt, cheese and butter too. Still do-able, though: you can eat fruit, veg, meat and fish practically to your heart’s content.
    Digestive enzymes may help with the GERD – I order mine from Holland and Barratt in the UK (can’t seem to get them here in France).
    Please don’t worry about cancer (I know, it’s like saying, ‘dont think of an elephant…’) because people with UC only have a tiny increased risk of cancer. Besides, since you’ll have more frequent colonoscopies than most, they’d pick up a cancer quickly – it takes a good 10 years before it becomes dangerous, as they just start out as polyps.

    But my advice would be, do take the B vitamins, and quickly. People who haven’t had this illness don’t understand why it makes you weepy, frightened and useless (when I was first ill, my husband had to cancel business trips because I was terrified of being alone and scared I might kill myself) but much of this is physical, not mental.

    And get yourself on that chicken soup SCD intro diet, PLEASE – it knocks the diahorrhea on the head. With SCD it’s crucial not to come at it at an angle, you really do need to read the book cover to cover, keep a food diary, get on the BreakingTheViciousCycle forum etc, and take things very slowly. And as others have said, a bit of meditation or yoga can work wonders – gives you a safe place to go in your head when you’re panicking.

    Finally, remember, UC is CURABLE with a colostomy. That’s something we all have to be thankful for – we are so much luckier than Crohn’s patients. Lucky lucky us!

    :) Trish

  5. JasonMarch 5, 2012 at 12:30 pm #

    Edward,

    I am in NJ as well and have suffered from UC for almost 9 years. I also enjoy a lot of the same activities as you. Feel free to send me an email and I can try and shed some light on diet and lifestyle tips that have helped me a little bit.

    Jason
    jayponj@hotmail.com

  6. RebekaMarch 5, 2012 at 1:06 pm #

    Hey Edward,
    Thanks for sharing your story! I remember exactly having the feelings you described. I am also generally the alpha person at home, I take care of everything. When I was sick, everyone who usually relies on me was let down – or so I felt. I wanted nothing more than to be better and strong again, but it just didn’t happen for a long time. I also felt that nobody could understand how horrible I was feeling because it wasn’t necessarily visible. Then, I was scared because things just didn’t seem to get better at first. BUT THEY WILL!
    It seems that your UC is stress related, I feel like so is mine. So don’t worry too much whether you should eat bread or not for example. If it doesn’t upset you, you should go for it, I think. I ate whatever didn’t cause me pain, but I make sure the ingredients are as pure as possible. Try to find something that helps you with stress. Meditation, yoga, counseling, writing, whatever you can think of and whatever it is that helps you.
    I think most of us here thought they would never feel normal again before they actually did. I remember I emailed Adam, asking him about whether bowel movements would ever normalize again. They will! Just hang in there!
    Keep in mind that a different approaches work for different people. You might find a mix of ideas will be best for you. Just keep educating yourself and try out things to see what works for you! You will definitely feel like the person you were before the diagnosis, IF NOT BETTER! (I was diagnosed in October with 20+ bloody bowel movements a day, today I saw my GI and we looked at my blood results: No trace of inflammation, and all other values were great too, whereas I struggled with anemia for the longest time)

  7. George in NapaMarch 6, 2012 at 12:36 am #

    Hi Edward,
    I do not have the same problem eating dairy as you do but I do understand the frustration that you are going through regarding your diet because I went through the same frustration myself when I was first diagnosed with UC. I was afraid to eat solid food because my rectal inflammation was so bad that I felt like I was depositing a rabid porcupine in the toilet bowl. All I ate for 2 weeks was stage one baby food. I was in real bad shape for about a month. Fortunately I found a good GI doc who helped me get rid of the inflammation and I was then able to concentrate on my diet. It took me several months and a lot of trial and error to adapt the SCD diet to suit my needs. Yes, I can occasionally eat bread and some other things that are “forbidden” by SCD. Finding the right combination ain’t easy but if you are persistent you will succeed in developing a diet that will be right for you. Like you, I go to the gym (4 to 5 days a week) and I used to play golf but decided to quit when I had an urgent need to take a crap in some bushes on the fourteenth fairway. Those 3 guys that I was golfing with haven’t invited me back….. can’t figure out why.
    You’re right Edward, stress can cause a big time flare. When I feel stress, I relax by reading a good book…. thats what works for me.
    Keep us informed as to how you’re doing.
    Best wishes,
    George in Napa

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