Just When You Think Everything Is Right with the World

…Ulcerative Colitis pulls the rug out from under you…

Introduction:

Hi. I’m Rick. I’m 60 years old and live in Toronto, Canada. After many years of dealing with weight gain, fluctuations between episodes of diarria and constipation (mixed in with some normal times), I decided that I was going to get healthy and begin eating properly. I began to watch portion size as well a eat healthier foods. This went well for about 6 months. The weight was coming down slowly and I was feeling much better. In May 2011 I began to experience the constant need to go to the bathroom along with constant bleeding. The bleeding I chalked up to hemorrhoids, which I have experienced over the years. After trying traditional Hemorrhoidal treatment, it became obvious that this was not the case. After visiting my Doctor and getting a referral to a specialist, I was diagnosed with UC in June of 2011. I have lived a roller-coaster ride with some good times and many flare-ups. I work for a major International Non-Government/not for profit Organization in a high stress position with frequent travel in North America and around the world, not to mention personal stress. Looking to share information and receive support from others who deal with UC.

My Symptoms:

Frequent need to visit the bathroom. Some bleeding periodically. Physical pain from an ulcer in the colon. Frequent problems with pressure from gas. Bathroom visits usually produce gas and mucus.
My day is planned around bathroom visits. When I am out, I have to know where the nearest bathroom is located. There is a constant desire to stay at home where it is safe. And I am heading toward depression if I don’t do something to change the course of my life.

My Story:

Before UC, I was more free and happy. Now I live with uncertainty which is centered around where the next bathroom is and will I be able to hold until I reach it. Tasks that I try to perform keep getting interrupted by frequent trips to the toilet. I have lost control and if I don’t do something to get that control back, I am afraid to think of the dark path that it will lead me down emotionally. I want to do things but I am afraid to leave the house. I have been known to procrastinate, but now it is getting absolutely ridiculous. Tasks that I need to do I don’t do because of my physical and mental state.
My specialist has been supportive, but I think that a second professional opinion on my condition would be helpful.
For the most part, my family and friends are trying to understand, but until you have experienced it, you cannot fully understand. I am in the beginning stages of the SCD with mixed results, and my family and friends are supporting me in that, some with a little skepticism.
My biggest concern is that if I don’t get this under control soon, I will be forced to graduate to stronger medications with bad side effects or even on to surgery. I want to avoid those choices if possible.
For a 60 year old, I think I look great, having slimmed down. But this is not the way to do it. I lost 30 LBs in a two week period, battling a particularly intense flair-up.

I am confused by the conflicting write-ups I see on-line in reference to diet. Writers seem to have conflicting views as to what a UC survivor can and cannot eat. All of my favourite foods now seem to be on the “do not eat” list. How have others coped with this?

Where I’d like to be in 1 year:

In one year I would like to be symptom free and eating healthy. I would like to be able to focus on other things in life and be able to have a new normal and not have my days controlled by UC. I realize that I will never be able to eat the way I used to, but occasionally be able to sample some of my old favorites, (within reason of course).

Colitis Medications:

I currently take Mezavant 1200 MG daily in the morning.
I use Salofalk 1000 MG Suppositories at night. I also have the Salofalk Enemas, but it only works if you can keep it in.

written by Rick S

submitted in the Colitis Venting Area

10 Responses to “Just When You Think Everything Is Right with the World”

  1. Laura from Toronto
    LauraJune 14, 2012 at 11:35 am #

    Hi Rick,
    I’m sorry that you are going through such a rough time. As a newbie, I remember being so confused and angry. For me it’s been 15 years, and I’m still trying to figure it out. It can be a bit of a rollercoaster ride, at least that is how it has been for me. I believe 100% that diet is the way to control this disease. Having said that, I also believe that we are all unique and what works for some does not work for others. The whole conversation about our gut flora (screwed up for all us IBD’ers) and it being a different composition per individual would support this. I think trying to create your ‘food safe zone’ (foods that do not cause symptoms) would be a good start. It’s not easy, and patience is key, if you do not know of any yet, start with a journal that records everything you eat and how you feel afterwards. Might be different for you, but no-no’s for sure for me are caffeine, refined sugar, anything with gluten in it and dairy. Also, although SCD safe, nut and nut flours caused issues.
    I’m also in Toronto, so if you ever need someone to talk to, let me know.
    Laura.

    • Rick ShirranSeptember 13, 2012 at 8:25 am #

      Hi Laura. I posted my story and never came back to the website after. Thank you for responding. I agree with you in that I feel that I should be able to control this with diet, and have “played with” the SCD diet. After the intro diet, my symptoms diminished and I tried to continue to follow the diet. But I do a lot of traveling with my job and you know what it is like when you can’t get the food you need in resteraunts. I have also been under considerable stress over the summer which has not helped much. But I am trying to find ways of dealing with the stress, and I have committed to sticking as close to the SCD diet as I can. Just in the last three days I have seen a change in my symptoms.
      Thank you for the offer of someone to talk to. My family are trying to understand, but until you have been there, you can’t fully understand. The offer is there for you as well, although since you have been on this journey for 15 years, you could probably tell me a thing or two about it as I am a relative new commer to UC.
      Blessings and Thank you.

  2. BevJune 14, 2012 at 4:36 pm #

    Hi Rick…

    Just try this for yourself…please…along with the SCD, take a good probiotic right away. Just go into the vitamin store in your neck of the woods, tell the clerk what you have, and ask which probitic you should take. It should be a one capsule per day deal. Take them for at least two months, as it sonmetimes takes that long to work, along with the diet you are following. I sympathize with and hear you about not wanting to graduate to harsher UC meds. I feel the same, and am not on any meds at the moment. I am managing my UC with a probiotic that I was recommended by the clerk at the vitamin store. It took almost two months, but it worked so well, I weaned myself off of the 12 asacol pills that I was taking every day! I was on asacol for 13 years, and it stopped working, and the doctor wanted to put me on steroids, remicade and imuran, and I said no way. They can be both horrible and harmful. Try SCD and probiotics first!!! Always!!

    Just please try it. It can’t hurt you, and it just may help to keep you off the ‘hard stuff’!

    Cheers, and good health,
    Bev:)

    • Rick ShirranSeptember 13, 2012 at 8:30 am #

      Hi Bev. Once I began the SCD diet, I tried Asidophilus. It had a slight effect on my system. But just recently I began using “aline”. This propiotic seem to be working much better. My other issue was pain in the lower part of my colon and what to take to reduce the inflimation. I have finally switched to “Aleve”, which seems to be working. The last two- three days, things seem to be improving greatly.
      Thanks for your thoughts and support.
      Rick

  3. TrevorJune 14, 2012 at 8:55 pm #

    Very similar story to my ordeal with colitis. I decided when I turned around 30 years of age, that I would really change my diet and eat nothing but whole organic foods. Few years later I end up with UC!? WTF? It’s like a slap in the face for trying to do better for yourself!

    Mine started getting bad around Dec 2011 where I would need to do my business like 4 to 5 times a day. It progressed to more than that around March 2012 and stayed pretty steady between 3 and 6 times per day. Stuff that I never could have imagined landed in the toilet. Mostly loose small soft little drops of poops and sometimes nothing but blood!…..

    I started the intro SCD diet recently and it is working. I get nothing but logs now or semi formed long stools which is exciting. The odd time I get soft stuff mixed in, but for the most part, it’s logs. I found once I got a yogurt maker and made my own and started introducing that to the rest of the intro diet, it helped in a big way. The probiotics in the yogurt will cleanse you and promote good bacteria in your gut. It sucks only eating meat, yogurt, eggs and jello (soup too). But if it’s going to help your gut..DO IT!!!! I’ve been really strict on the diet, eating hard boiled eggs at lunch and lots of water with yogurt.

    Here’s my day to day eating schedule:

    Breakfast: scrambled eggs and water
    Lunch: hard boiled eggs, homemade yogurt, water and jello
    Dinner: Broiled chicken breast/beef, yogurt and water mixed with apple cider

    I saw hard poops with little red stuff on the second day. Still seeing red, but poops are consistent solid ones.

    Keep at it…..don’t let the other foods tempt you in the fridge and so on. Oh, and read “breaking the vicious cycle”. It explains everything you need to know.

    • Rick ShirranSeptember 13, 2012 at 8:36 am #

      Hi Trevor. thanks for the comments. I am on the SCD diet presently. I did the intro the same as you, and then moved on to some of the scd recipes. the food is rather good, but it takes good planning to keep it up. That is part of my problem. My schedule is so erratic and I work in the Emergency Disaster Services field, so the days schedule could change rather quickly.
      Good luck with what you are doing. It sounds like it is working for you.
      Rick

  4. shelly in maineJune 15, 2012 at 5:03 am #

    Hi Rick,
    First of all you are not alone. This a great site/support including Adam’s book which you can download and will help simplify the process in conjunction with Breaking the Vicious cycle.
    Adam makes a great point about taking time off with disability to get your UC under control…that is legally available now. I was forced into that last year as many uc’ers have. If you don’t have your health than you have NOTHING!!!…so first you have to make that very important decision as to where your health and life ranks compared to your work!

    The is hope, there is a light at the end of the tunnel and diet, probiotics DO matter!

    Hang in there, Shelly

    • RickSeptember 13, 2012 at 8:40 am #

      Hay Shelly.
      Thanks for that. I keep telling others that. “If you don’t have your health, you have nothing”. But when it comes to myself, I am not so quick to follow my own advice. But I am learning. I will hang in there and keep doing what I am doing. If it doesn’t work, I’ll make the tweeks that need to be made so that my system recovers and gets back to some kind of normal.
      Blessings.
      Rick

  5. KellyJune 21, 2012 at 1:52 pm #

    Hey Rick,
    I know it can be so disheartening at times, but it is true you are not alone and this website proves that. It has been a great source of comfort for me to know that there are people out there that understand exactly what I am talking about and what I am experiencing. There is something to be said about being able to tell your story and feel comfortable doing it. I second what the folks above said – try the SCD (read the book by Elaine Gottschall – it makes so much sense!) The diet is hard, I won’t lie to you, but if it makes you feel better it’s worth it. Probiotics are important absolutely – I take ones with only 1 strain lactobacillus acidophilus(GI Prohealth). There are a couple of guys who run a blog/website called SCD lifestyle and they have also been a great resource with a lot of great tips, support,info and books to help navigate the diet. They suggested the 1 strain probiotic to use during the beginning “stages” of the diet. They also talk about what they call the “four horsemen” dairy, nuts,egg, excessive fruits/honey (sugar)if the diet isn’t working completely, to eliminate these things and see what happens. You would want to eliminate them one at a time to be sure that’s what was causing the issue. I think even if you didn’t do the diet, these 4 things are good to eliminate – esp sugar and dairy. It may make more sense when you look at the basic diet and read Gottschall’s reasoning behind the choices (i.e. sugar feeds bad bacteria in the gut)
    Best of luck to you and keep your head up. Check back in with this site for inspiration, new ideas and support. It sucks to have this disease, but I figure we can arm ourselves with as much knowledge as we can to fight it head on, and make sure our lives do not revolve around a toilet(or finding one)! :)
    Peace,
    Kelly

    • RickSeptember 13, 2012 at 8:48 am #

      Hi Kelly.
      All the comments have been very helpful. I agree about the sugar and dairy. I have totally cut dairy out of my diet except for Yogurt. I don’t make the SCD Yogurt but use the Danon Plain Greek Yogurt which has not additives or added suger in it. Just plain yogurt. I also check the labels on every food item that I buy to check for wheat or corn products, and any kind of sugers.
      Yes the website has been very helpful and there is not a day that I do not visit to see what new information might be there.
      Thank you everyone for your support.
      Rick

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