My Body is a Rebel

NatalieIntroduction:

My name is Natalie. I live in Ohio and I am married with 3 beautiful kids. I was diagnosed with U.C. while 6 months pregnant with my second baby and 20 years old. I have been living with this disease for 7 years now. The doc says I have an unusually severe version and I still have rough days despite having 3 surgeries, but the point is to adapt and educate yourself as much as possible. I mostly kept this to myself, but have decided to take this step to let it all out and finally stop hiding from U.C.’s ugly face. I can’t control this disease or diagnosis, I haven’t inflicted this either; I refuse to let u.c. run my life.

My Colitis Symptoms:

Despite having 3 surgeries and “pouchitis” as a result of those surgeries, I still have frequent flares. I was unsure if it was even possible to still have u.c. since i have NO large intestine, but apparently it is very possible. I have all the symptoms I had before my surgeries HOWEVER it is an entirely different level of symptoms. I can tolerate my symptoms now. I can live my life- it’s just a hassle. On a good day I might only go to the bathroom 7-8 times, but a regular day is about up to 12 times.
I am constantly dehydrated and drink water as if I had a leak somewhere. Drinking water is a very important part of my maintenance.

My Story:

When I was diagnosed with U.C. I was 6mo pregnant. I was in shock. I didn’t fully understand the diagnosis or how severe it was for me. I was underweight, losing weight, my baby was under weight and my ob wouldn’t listen to me that something was wrong. I didn’t have hemorrhoids like she was insisting. By the time I got to my family doctor my hemoglobin level 4.9. Being pregnant, the docs were concerned my baby was even alive, let alone how i was walking around. In one hours time I went to the hospital and it had dropped to 4.7. Once I realized i had to go to the bathroom- it was a race for time.

Weeks in the hospital, 6 transfusions, and 27 pills later i made it home. I finished my pregnancy and had a massive little boy. The doc said my symptoms should greatly decrease within 2 weeks after I gave birth, since pregnancy increases the symptoms. Unfortunately, my symptoms quickly worsened.

3 Remicade treatments later, a crazy amount of steroids and meds and my doctor decided surgery was my only choice. I had lost a lot of continence and I was literally sleeping on the floor in the bathroom. I had a nurse coming in around the clock and with a newborn and 15month old I was really struggling.

The prep for the surgery was awful. I still, to this day, cannot tolerate anything of the orange flavor. I actually messed up and thought I only had to prep 2 days before the surgery, opposed to 1 wk before. Well, I had pizza the day I Was supposed to start my clear diet. I was not about to tell me doctor to put off the surgery. I needed this and I was willing to reap the consequences. I vomited and was in the bathroom the same amount as I was without the prep so that didn’t change any.

From the moment I gave birth to my son, to barely under 6months later, just days before the surgery date I had lost 79 lbs. I was sick and looked emaciated.

The big day came and went. I was able to deal with the pain, but I had some difficulties during surgery and ended up in the PICU for a few days. I was supposed to be getting up and walking around in just one day. It was crazy. I also had the ostomy now and learning to care for that was terrible. I didn’t care about the messiness, but the way my stoma came out it constantly leaked on my stomach and burnt my skin all the time.

3 months later I had my ostomy reversed. I had never been soooo happy! I was a different person. I loved it. I still had a certain pain in my stomach though. IT was very strange. I had to take Zantac every time it happened. Within 10 minutes it would normally disappear. However, it was a severe pain. 14 months following my ileostomy reversal surgery I was at school and got the same pain. I passed out in class and was rushed to the ER. I had a full bowel obstruction because I had overgrown scar tissue. It was definitely a shock. The pain is gone now, most of the time.

I still have serious issues. I still can’t eat a lot of fiber, sugar, chocolate, no caffeine. The surgeon says I still have a very sensitive stomach and to be careful. I work out all the time and try to eat the best. Sadly, I put on a lot of weight following my third surgery.

Where I’d like to be in 1 year:

In one year I would like to manage my amount of bathroom trips by being much more conscience of what i am eating. I know that what I am eating has a great impact on my body and sometimes I don’t realize how much I am attacking an already sensitive part of my body.

I would also like to have lost 40 lbs at the least.

Colitis Medications:

I currently take 8 Lomotil pills per day

I’ll be quite onest and say that I don’t remember all of the meds that I have taken for this. I do know I have taken several, a lot of steroid meds, and I have taken the Remicade treatments a few times before having my first surgery.

written by Natalie

submitted in the colitis venting area




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9 Responses to My Body is a Rebel

  1. Carol August 2, 2012 at 8:20 am #

    Natalie,
    I thought I was reading my own story (just with only one child). I live in Indiana-right on the state line by Cincinnati. Just recently I was also diagnosed with Crohns. My GI doctor said the crohns was basically “attacking” the j-pouch so I now have official diagnosis of both UC and Crohns . I just went to my Surgeon (Dr. Janice Rafferty-Christ Hospital) for a follow-up of my latest surgery of a C-Tong for a complex fistula. My next appointment will be back with my GI (Dr. Helper-IU Medical Center) to begin Humira.
    I have tried different kind of supplements (etc) over the years and have found two things that seem to help with the bathroom trips as well as energy and a better quality of life. One is a juice called Mon-a-vie and the other is a supplement from Juice Plus. I only take two oz of the Mon-a-vie a day and if I know I have a long day or a lot to do I will also drink either part of or all of one of their energy drinks. For the juice plus I take the childrens/gummy-chewable fruit and vegetable supplements in the adult serving. This truly has an affect on the BM itself as well as the frequency. I would love to send you more detailed information if you would like.
    Just remember to take one day at a time and don’t over due it. I was hesitant to even consider the Humira when learning about some of the possible risks-but when Dr. Rafferty (who by the way is from the Mayo-Clinic) told me having the numerous boughts with pouchitis will eventually cause me to loose my pouch and have to have a bag back – I agreed to do it. She also told me that surgery was worse/bigger than any of the ones I had already had. Just the thought of having that bag back brings tears to my eyes.
    Again-If you would like me to send you anymore detailed information about either of the above I would be happy to. They are both purchased through distributors-I can send you those contacts as well.
    Take care-and God Bless!
    Carol

    • Natalie
      Natalie August 3, 2012 at 1:19 pm #

      Carol, thank you for your reply. I would love any and all of the information you have. I need to get this under control. I still have very rough days. Thank you!!!

      • Carol August 5, 2012 at 6:23 pm #

        Natalie,
        For the Juice Plus information = the lady I get my products through has her own website. The direct link to the Juice Plus part of her website is http://www.laurahuber.com/Products.aspx. When I spoke to her yesterday she stated after you have reviewed the information and make contact with her she would be happy to send you a DVD to review. I have a call into the lady I get my Mon-a-vie from to see how she would like to be contacted.
        Carol

  2. Shannon August 2, 2012 at 9:39 am #

    Dehydration! I could never figure out why I drank so much water but was always thirsty! Now I drink two Sobe vitamin waters a day with Purvia instead of any fake sugars. I have found that it helps keep me from getting the chronic colds I used to get all the time and makes me feel more hydrated. I also follow a strict diet, I do paleo, with a lot of taboo foods thanks to my sensitive tummy.

    I agree, take it one day at a time. It is a constant trial and error process and I congratulate myself when I figure something out.

    Good luck!

  3. Steve August 4, 2012 at 7:22 am #

    Hi Natalie. Thank you for sharing your story. That one was a toughy, as you just can’t seem to catch much of a break, yet like so many others here, you haven’t let it beat you. I have studied nutrition and physiology in college so if you want any help, I may be able to offer some pointers or support. I’m in the middle of losing weight myself—and learning the SCD diet after learning the raw diet—so whatever you want to know…lol.

    Best thing I can say without knowing more is if you have never done it, start a food diary. It will do wonders in the long run. The other thing is to stay positive and keep at it but also try to know when to relax. I know when I was severely depleted in the past I didn’t know when to slow down and it hurt me. Lots of people here seem the same way but I say that as a positive thing! Hope to hear from you. Steve

    • Vicky Smith August 4, 2012 at 2:44 pm #

      Hi Steve, You turned me on to the SCD diet this last year. I am trying to keep from having a ileostomy. Mine al went crazy in 08 when I had to take a radio active isitop due to having my Thyroid removed from cancer. within no time I was in pain and bleeding etc. I found your story and have been trying to stay meat free. I am having a flare now from stress and living on pudding to keep the bleeding down. I take Humira shots once a week, 4 Lialda, and a small dose of predisone because of the flare and many other pills, but I finally feel after all this time I am slowly getting better. Diet is important I try to stay gluten free and the panin level is way down so I don’t have to take anything very often. How is your UC? Did your skin clear up from the shots? Vicky

      • Steve August 4, 2012 at 10:29 pm #

        haha. I’m not sure if you have the right Steve…but I have had skin issues so it is possible, although not from shots but steroids. I doubt we have talked before but hey, awesome to meet you/catch up. :) This is my first time—the other day—I have posted here.

        I am assuming you are using store bought pudding as it is something soft and it somewhat agrees with you? I know the feeling, though there might be better options that gives your gut the ability to rest while also giving you more nutrition for your efforts. How well do you tolerate cooked vegetables? I don’t mean anything in a bag or box…I mean fresh produce where you can control all of the ingredients? One other thing as I don’t want to ramble too long…but have you ever juiced your own fresh made juice? I’ve always found that can really relax my body(gotta do it slow and carefully) and give my gut time to repair itself. Even the homemade jello from BTVC would suffice, made with legal juices.

        Sorry to hear about your thyroid and the big C word…major props from trying to make changes after going through stuff like that. I would likely be a mess dealing with that or need a swift kick to the backside. As always, look forward to hearing from you or anyone. Yes, I waste lots of time here. I suppose I should share my story. Dun dun dun…

  4. Richa August 4, 2012 at 2:45 pm #

    Hi Natalie,

    I hope things turn out good for you in the long run.I am also surprised to know that the symptoms still persist after removing your bowels.I have UC from past 11 years and i struggled for 5 months with a flare after my baby was born.I just got to remission and have 1 2 BM’s per day.If i am not careful about my food i get diarrhoea and later have blood in my stools.I guess food is a very important part to stay in remission.

    I read from your post that you cannot eat sugar,caffiene and such stuffs.I guess they don’t benefit your body in any way so it’s good to stay away from them.When i was desperately trying to get my flare under control after my baby was born i analysed what food i was taking and i realised that i was eating candies,marshmellows and a lot of bakery.It was too much sugar which was doing harm,as soon as i started eating low fibre home made foods and no sugar,caffiene,soda’s,junk and all i got into remission soon.Imuran also helped me get into remission.

    I keep a food diary and yes it is very helpful.all the best to you

  5. TiiniTete
    Tiinity August 7, 2012 at 1:46 am #

    Hi Natalie!

    I am also struggling to get my body under control. I only had one surgery so far: I have a bit of large intestine left and hope to keep it. For me I am trying to get the puzzle just right with SCD/GAPS diet and also having issues with candida and adrenal fatigue and thus altering the diet so it will fit all of those criteria. Eating pea soup is great (for me), probably this is not true for others.

    However what I more and more have realized is that the only key is to learn how to listen to the body and give it what it wants but look out for the cravings. And basically it means for me to get nourishing food (and for the moment no fast carbs…), some exercise at the right level and living a life I enjoy.

    All the best to you and your family!

    /tiinity

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