I Just Want It OUT!

20 years with colitis KristenIntroduction:

My name is Kristen, I am a psychology student majoring in addictions and I love my dog more than anything. I have had UC for 20 years, I was diagnosed at the age of 2. My whole life has been spent working around my disease.

Colitis Symptoms:

I have bloody diarrhea, abdominal cramping constantly, joint pain, migraines.

My Story:

I have had Ulcerative Colitis for 20 years. I was diagnosed at two years old when my parents looked in the toilet and saw nothing but blood and rushed me to the doctor. My whole life has been spent working around my disease. I have been in and out of the hospital since I was two. I have been asked by a ridiculous amount of people throughout my life if I am anorexic or bulimic because I was so thin. I am distantly tired because anything I eat goes right through me. Nothing stays in my body so I am always hungry, but I hate eating because it causes so much pain. I have colonoscopies 2-3 times a year, no matter how often I do it, it still sucks. I have been on every medication from 5 ASA, prednisone, immuran to remicade. None of which have done anything but cause side effects. Currently I am on Remicade every 6 weeks and immuran twice a day. I cant take any pain killers because they upset my bowels so my dr gave me tramadol, which is great if I don’t gave to do anything all day. Remicade caused my already severe joint pain from colitis to get much worse. This caused me to go on hydro-cortisone at each infusion, which I hopefully dont think does anything. I am now being told my last option is j pouch surgery. I am definitely afraid of the surgery itself, as well as the healing period, taking time off school and work. However I am at the point where I just want it out of me! I have been sick my whole life and I believe the surgery will make my life easier in the end. After all, having UC for 20 years puts me at pretty high risk for colon cancer.

Colitis Medications:

5 ASA helped me for about 4 years when I was alot younger. Eventually it stopped working and I was put on prednisone, immuran…then eventually remicade and cortisone. Remicade caused me alot of problems, made my joint pain I already suffer with UC alot worse. Also causes bad headaches after infusion. Not to mention my veins are crap now.

written by Kristen

submitted in the Colitis Venting Area

16 thoughts on “I Just Want It OUT!”

  1. Hey Kristen!

    It must be so hard to not know how life is “without UC”. I suffer with you, and I hope you get in remission and stay there from now on! Although I do think you can experiment yourself to get there faster and easier. In my opinion UC is a combination of bad pathogen bacterias and “western culture food culture”

    Also another interesting question since you got it so “early”:
    Did your mum breastfeed you?

    Good luck!
    Have fun!
    Live life!

  2. Bless you for handling this for so long. I pray your suffering goes away. I have one question. What diet or alternate treatments have you tried over the years?

  3. Hi Kristen,
    Your letter breaks my heart. I had a total colectomy and have a permanent ileostomy. (Last surgery was November, 2011) I don’t have ulcerative colitis anymore!!! I have my life back. I was ill for 2 years and tried all sorts of natural (and un-natural) remedies, including the SCD and nothing worked for me. I wasn’t willing to give this disease another minute of my time. I would not have been a good candidate for J-pouch surgery, because of my age and the intensity of my flare/damage. You, however, may be a good candidate for J-pouch. I went to Dr. Medwell in Seattle who has been doing UC surgery for over 30 years. I don’t want to tell you what to do, but I have no regrets and as my health and vitality return I wish I’d had the surgery long before I did – before my health was so poor and I’d had a bunch of Remicade infusions.
    I wish you the best of luck. Don’t give up.
    PS – Check out the “Life Takes Guts” blog. I think there’s a connection thru this site. It’s a great history of a J-pouch surgery.

  4. Some things you might want to consider: Try following the SCD diet and taking probiotics. Many people have found relief by following the SCD diet ( without cheating) and by taking probiotics. I have had UC for 40 years and the diet, Lialda, and RX probiotic VSL#3 do help me and keep me in remission.

    Have you been diagnosed with C. Diff or UC? It does make a difference. There are some very promising therapies for patients with C. Diff.

    Because you are a student, you may be interested in this article: http://www.hindawi.com/journals/jst/2012/704953/

    You were diagnosed at a very young age. Ask your parents if you were administerd antibiotics prior to your presentation of UC. There may be a link.

    Wishing you the best of luck and good health.

  5. Thanks for the kind words guys. I have tried different diets, however when im in a flare I can drink water and it hurts when it goes through me. So i dont think thats the answer for me! And yes I was breastfed as a baby. Weirdly enough no one in my entire family history has has chrons or colitis that we know of. Just lucky me! Lol. Nothing ive tried over the 20 yrs has made much of a difference, which is why I am now leaning towards surgery.

    1. Hi Kristen,

      I had UC for almost 30 years. I was put into the hospital in Nov, 2011 for a flare that could not be controlled. After colonoscopy it was determined that my colon was in dire condition and I was taken into emergency surgery. My colon was removed and I was given an ileostomy. My second surgery was in May, 2012. They created the J-Pouch during this surgery. I still had the ileostomy but now instead of the end of my small intestines it was created from the side section of my intestines. My takedown surgery was in July, 2012. I completely understand where you are now but wanted to respond to let you know how well I’m doing! I read many things online that scared me but made it through. It is a difficult road both physically and emotionally but it is doable. I am 53 years old and I made it. The first surgery I was in the hospital for about 10 days I relied on my mom and husband for emotional support as I adjusted to life with a ileostomy. I found things became easier as time passed and my small bowel became more efficient. What you eat is very important. I was always very health conscious and had to go on a refined food, limited fiber diet. I limited what I ate late and usually only had to get up one time during the night. The second surgery was the tough one for me. I was in the hospital for about a week. This was a difficult surgery because with limited bowel I became dehydrated. This is very common. The problem is what you drink has minimal transit time and the more I drank the more I became dehydrated. I was hospitalized about 10 days for dehydration. In retrospect I learned how important eating is during this phase. What saved me was eating very ripe bananas, white rice and cream of wheat. This slowed transit time and allowed me to drink. As I neared my final takedown the ilostomy began to flatten out making leakage more of a concern but I only had this happen 2 times during my entire time. I spent 2 nights in the hospital for takedown surgery. This surgery was more just muscle aches in the stomach. After all the surgeries there is about a quarter sized hole in the abdomen that fills in with skin and heals. I was so concerned that I would not be able to hold my bowel movements or have to be using the rest room all the time. Yes I go to the bathroom more often but I always drink a lot of water and had to use the restroom alot from that. I sleep all night with no problem. I can do anything, hold my bowels and have no problems at all. Withing just a few weeks things were working well. I have no problems with intimacy and am about to begin exercising again. I am glad I had it done. It is something I don’t have to worry about again!
      Let me know if you have questions.

  6. hey ive only had uc for about 2 years now but ive been through all those drugs too and the negative effects always seem to last longer than the beneficial ones. Ive looked into western medicine and some alternaives and they all seem to be b.s. Im pretty relentless in finding a cure or even a treatment that can greatly help the disease. Im actually going up to oregon in july to do a 10 day retreat for a procedure called fecal transplantation and ive talked to a few patients with long term uc who have gone through it and they say it was better than any drug theyve ever taken. If your trying to find beneficial treatments other than surgery then this could be worth it. If your interested i can give you more info about it and even keep you posted on how i feel after the procedure.

  7. Surgery is tough and scary decision, but I certainly feel your pain. I had J-Pouch surgery last summer and, although it hasn’t been perfect (and I will require a fourth surgery this summer), I’m no longer sick, which is a blessing. I kept a blog through the whole process (knowguts.wordpress.com), which may be helpful to you. I found other people’s experiences the best resource out there. I’d also be happy to chat with you about my experience — just contact me through the blog.

  8. I suffered with UC for 19 years. I’ve had a permanent ileostomy for 22 years. You can actually live a life without that diseased colon! I haven’t regretted surgery for one minute. I was diagnosed in 1972 – long before the diets and meds you’ve mentioned. Prednisone was the only thing that worked for me so I do have all the side effects but I am still much better off than when I had my colon.

  9. Hi Kristen. I’m sorry to hear you’re so sick. It does sound like surgery is the way to go now, after 20 years of struggling. I myself am on SCD, but my symptoms are only mild, and in your case, I think I would have given up this fight long ago. Good luck with whatever you decide to do – surgery has definitely worked wonders for some people on this forum. :) Trish .

  10. Hi Kristen,

    It seems such a long time you have been battling this disease.But keep up the courage.If you have already tried diets,medicines then you can definately opt for the surgery.Atleast you are in a country where you have abundant help regarding your disease.As far as i am concerned i have suffered a lot too but am in a darkness as i don’t know where to turn too.There is hardly any doctors for UC and no help regarding alternative diet and surgeries in this country where i am living at the moment.I had colitis when i was 22 and i always remember the good times and my active life before that with so much joy.Life has completely changed after that,its more of a struggle.

    I wish you all the best.My Prayers are with you for your health and a good life.

    Keep the faith.Never loose hope.God Bless!

  11. I’m leaning toward sugery right now too, but really scared to do it. Thanks for posting. I hope to read after the surgery what it is like for you.

  12. My 19 year old daughter was in a year long flare. She was on Colazal, 6MP, Prednisone and Remicade. Every time she tried to taper off the Prednisone, she would continue to flare. Her doctor suggested surgery, because of damage being done to her body by being on steriods so long. She had already been considering it before he brought it up. She had a colectomy and ileostomy in January. She felt so incredibly good after the surgery. She just had her second surgery a couple weeks ago. She had the jpouch constructed and connected. She was in the hospital 10 days. It was rough in the beginning, but she is improving by leaps and bounds. She has no pain (the pain stopped 7 days after surgery), takes no medication, has only 4 or 5 B.M.’s a day. Thank God and knock on wood.

  13. Hi Kristen. You have been through it, girl! I don’t blame you for wanting your colon out. I had j-pouch surgery also, like Chris. None of the drugs worked and my colon became toxic w/in 2mos of being diagnosed. I am very glad my colon is out. NO MORE SICK!!! Hooray. I am currently waiting on the 3rd of 3-part surgery. I have no regrets so far.

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