Ulcerative Colitis Tips


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Trying to Make Sense of All This

Andrew by the water!

Andrew by the water!

Intro:

I’m Andrew. I have a degree in criminal justice. I am a family man and my last jobs were in the field of armed security.

Some more about me:

I am very much into physical activities including exercising and sports. I am from the bay area of California and enjoy spending time outdoors. When I have a lack of energy I spend my time reading or learning something new online anything to keep me focused.

Symptoms:

Weakness from anemia, odd dull pains in lower abdomen every couple of days.

My Story:

Hello everyone, I was diagnosed with UC on February 2011. I remember I dealt with the unknown for about four months prior to being diagnosed because I didn’t have medical insurance at the time. Every day was worse than the previous mainly due to stress and continuing to eat damaging foods. The past couple of years has been the definition of trial and error for me as I try and figure out the do’s and the don’ts. The good news is that I have my diet figured out at this point but over the years I have taken more than a few falls mainly due to experimenting with different foods and catching a few illnesses. Most of my diet does include SCD legal foods with the exception to bread and a few others.

I have never taken any of the normally prescribed UC medicine with the exception of prednisone after my colonoscopy. I am terrified of them after reading so many reviews. During one of my many ER visits prior to being diagnosed I was prescribed Carafate and prevacid because it was assumed that I had an ulcer. When taking these two prescriptions combined with my daily diet (SCD Almond/egg pancakes, turkey sandwiches, and rice with organic ground beef) I never bleed.

carafate

sucralfate’s trade name is carafate

Every time I ask a Dr. if it is ok to continue to tak after three years I’m always told it is fine. It almost seems at times that I have a case of colitis without the internal bleeding unless I break my diet rules. I also taked ultimate flora critical care 50 billion probiotics.




During the time period of being diagnosed to the present day I have had major flares that have taken their toll on me resulting in 25lbs of weight loss and vitamin deficiencies along with anemia. I am confused by the fact that I have been eating the same foods back when I was 165 but now that I am 145 I don’t gain weight at times I think I am loosing weight. My biggest concern is a change in my stool which does not consist of any bleeding or diarrhea but the solidness of the stool has changed to where it breaks apart within seconds of hitting the water. I’m very puzzled by this as my diet has not changed I have recently become aware that I am deficient in vitamin d and am wondering if this maybe why. Any insight on the matter would be very much appreciated.

Thanks!

written and submitted by Andrew C. in the colitis venting area

Adam Scheuer, founder of iHaveUC.com

Adam Scheuer, founder of iHaveUC.com

Ask Adam

“Hi Adam, I was wondering what you think about the idea of completely avoiding Dr. prescribed meds?

Also how often should a colonoscopy be done?”

Hey Andrew,

Thanks for sharing, and what’s up to the fellow Bay Area Native!

Quick answers to your Q’s above:  I avoid them, and every 4 years should be good if you’re feeling good.  Below, I’ll go into more details…

You have a great question about “completely avoiding Dr. prescribed meds”

Of course in hindsight I wish to have avoided all medications right off the bat after my diagnosis and changed my diet, but that doesn’t usually happen for any patients right when you’re trying to understand your new disease.

As much as I don’t like western medications, I’ve realized I can’t hate them.  That would be impossible for me.

Heck, if it wasn’t for Prednisone several years ago when I had a flare up I wasn’t able to control myself, I may have ended up in the hospital.  And as much as I can’t stand to think about Humira, that exact same medication I know has helped many others all around the world.  I’ve talked with these people, and I know they love that stuff.

Of course it bugs me to no end to hear that certain medications have side effects that can literally cause your skin to peel off your hands and feet.  A doctor prescribed med gave me those fun gifts years ago.   But again, that’s life.  Things don’t always work out perfectly.  But for the folks who use western medications prescribed by GI doctors to treat UC and for those that are having success….AWESOME!.  I think we should all be happy for those people.  They are struggling with UC too.

In the end, I think avoiding Dr. prescribed meds can be a good decision, but you need to have a plan.  And don’t ever completely rule them out.  They may end up saving you someday from some nasty moments.

As for your 2nd question about how often for a scoping of the booty…  Well, again, here’s a question that has different answers depending on which Gastro doctor you ask.

My GI doctor who I think is great told me every 4 years.  He has UC just like I do, so whatever that’s worth to you, take it as you like.

I’ve heard from other UC’ers who say their doctors ask them to have a scope each year.  To me, that sounds like a ridiculous amount of butt probing (which often leads to flare ups mind you).  And I’m just  not so sure there’s any overall longterm benefit to that much colonoscopeeing.  I sure as hell won’t be going back for another round of the big snake annually.

The procedure is great to give you and your doctor a bird’s eye view of the inner walls of the colon, but between the prep, the probing, and the anxiety before and after…I think once every 4 years is probably adequate.

I wish you the best Andrew.  Thanks again for sharing your stories, and I wish you the very best with a full recovery and long lasting remission.  (Stay away from the breads:)

-Adam Scheuer




10 Responses to Trying to Make Sense of All This

  1. Charlene H
    Charlene March 6, 2014 at 5:23 am #

    Andrew,

    Frequency of colonoscopy depends on your condition. When my UC was only in my descending colon and in remission, every 4 years was enough. I have had UC for 25 years now. It is in my entire colon and currently in remission. I have a colonoscopy every 2 years. After 25 years my risk of polyps is higher. When I’m not in remission, it’s every year.

    Regarding diet and drugs, if you can control your UC with diet/probiotics, more power to you. Keep in mind that your diet may need to be revised periodically. There may come a time when diet won’t be enough. That is when better living through chemistry comes in.

    Find a doctor that works with you as a team to find the right combo for you.

    This website is a good place for battle plans and support.

    Good luck,
    Charlene

    • Andrew C
      Andrew March 19, 2014 at 10:52 am #

      Thank you for the helpful insight regarding my situation. I have a colonoscopy scheduled in a few weeks that I’m a little nervous about due to the fact that I was in remission before my last one and came out in a full blown flare. I do understand the importance of needing to know exactly what is going on so I will just have to pray for the best. I agree I may need to alter my diet a bit and try to find some more “good” foods that will hopefully help me put on some much needed weight. Thanks again.

  2. bev March 7, 2014 at 12:34 pm #

    Hi!

    That probiotic that you (and I) take is a LIFESAVER. I have been on it a couple of years now, and it is keeping me in remission, I am certain….along with the L-glutamine of course!

    I’ve been telling everyone on this site about RENEWLIFE’S ULTIMATE FLORA CRITICAL CARE ever since it helped me into remission and I will keep on spreadin’ the word to anyone who wants the info!

    Cheers:)

    • Andrew C
      Andrew March 19, 2014 at 10:56 am #

      Hi Bev, several months back when I was going through it and looking for solutions I came across this great website and read what you said about this specific form of probiotics so here is a huge THANK YOU! they have helped me maintain a very consistent and good digestion for the most part.

  3. Lisa March 8, 2014 at 9:14 pm #

    I have had UC for about 30 yrs. I was diagnosed 15 yrs ago. My colon was very scarred by then. Very severe pancolitis, and I needed colonoscopy yearly . I have been thru the gamut of alternative medicines, I have learned about and tried many alternative systems and measures and diets. Eventually I had to go for the big guns, oral sulfasalazine, 6MP, Methotrexate, Prednisone. I had the anemia, called ACD- Anemia of Chronic Disease. Shots to help my bone marrow make blood. B12 shots when I was malabsorbant. We have discussed going biyearly, as I am stable now on Remicade. But things are still changing.
    If what you are doing is working keep it up[, but if it stops working let it go.
    Good Luck :-)

    I was Vegan for a while. I thought it helped. I did juicing. I thought it helped.
    This disease, which is autoimmune and will continue to fight you until someone finds a way to reset the immune system, keeps upping the ante. Prednisone was wonderful, but it is a horrible drug. I was on it about 5 yrs. That is why I am on Remicade now, I could not wean off the Pred without a flare. Remicade keeps me pretty much in remission. I have had no bad experiences on it.
    I may be becoming resistant to it though, I may be experiencing something not often found, Colon Failure. Doc and I will have to map out a plan for this, and I may have to move on to another wonderful spot that saves me for that phase.

    • Andrew C
      Andrew March 25, 2014 at 11:33 am #

      Hi Lisa! Thank you for helping me with some much needed insight into medical forms of treatment. I must say you are quite the trooper considering what you have endured. I believe as soon as we accept what life throws at us and decide that we are going to make the best of it we have half the battle won. I have also considered a vegan diet but hit a wall when I try to figure out how I will maintain a sufficient amount of calories because I already have a hard time gaining weight. I recently started receiving vitamin IV’s hoping it will make help things overall. Thanks again for your thoughtful comment and information.

  4. Andrew C
    Andrew Casillas March 18, 2014 at 12:30 pm #

    Thank you for your valuable insight Charlene I really appreciate it. I have a colonoscopy scheduled in a couple weeks. I am slowly carefully trying to find other options to include in my diet it seems impossible to gain weight I am stuck at 145.

  5. Andrew C
    Andrew Casillas March 18, 2014 at 12:33 pm #

    Hi bev! You are actually the person to thank for these probiotics because several months back when I was going through it I found this website and read your comments about Ultimate critical flora so here is a huge THANK YOU.

    • bev March 21, 2014 at 6:20 am #

      Andrew! Hi!

      You really have no idea how happy that makes me. Whenever that probiotic works for someone, all is right in the world.

      :)

  6. Andrew C
    Andrew Casillas March 18, 2014 at 12:40 pm #

    Hi Adam, Thank you for the info relating to getting scoped. I am a bit skeptic because the last and only time I had one done was about 3 years ago and I went in to the procedure in remission (thanks to Carafate and Pevacid) and came out in a flare that required Prednisone. I will keep medicine in consideration I just don’t appear to need it at the moment. I am mainly concerned with gaining back some much needed weight. My diet is partial SCD but some SCD foods I can’t tolerate such as chicken or black pepper.

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