I Am Going to Beat UC – Fecal Transplant or Jpouch

Kaitlin 18 years old ulcerative colitis

recent picture of me

Hey everyone, my name is Kaitlin and I am an 18 year old college student with UC. I have dealt with this disease for 4 years, and I’m about to get rid of it for good… hopefully

Colitis Symptoms Right Now:

Extreem Urgency
Occasional Bloody Stool
Cramps
Joint Pain (mainly in my knees)
Loss of Appetite

Colitis Story:

It all started when I was 14 years old. I began to have severe cramps, along with extreme diarrhea that was mostly blood. I was having close to 30 bowl movements a day and urgency. My parents took me to a local pediatric gastro doctor who gave me the drug Pentasa, and assured my family that all the bowl movements were “just a part of the disease”. He basically was telling me to accept the fact that I was going to live on a toilet and it was “normal” to have that many bloody bowel movements a day with UC.

Trusting the doctor, my family decided to go on our annual camping trip to the great mountains of New Mexico. My mom, wanting to help me, had purchased a portable toilet to take, knowing my urgency would need a place to expel even in the great outdoors. The activities of camping were taking a toll on my colon, and slowly I became more weak and less able to do much of anything. I laid in the camper alot and just rested. My mom kept calling this Dr throughout the weekend, concerned about me progressively getting worse. He kept assuring her I was ok and this was normal. We decided to go on a hike too, not realizing my sick body had lost more than half it’s blood. I had to be carried down the mountain by my dad, all 90 lbs of me.

Everyone started to notice I was beginning to look jaundice and yellow. We headed home and took me straight to the doctor once we got home (my family doctor, NOT the GI doctor that gave me the Pentasa).

Once at the doctor, they did a few blood tests and my family and I sat in the waiting room waiting for the results. My family doctor soon walks in, tears in his eyes, and tells us I had less than half of the blood in my body. He said he didn’t even know how I was able to stand up, let alone walk around.

I was immediately taken to the hospital. My mom headed straight to the blood center and started the process of giving blood, knowing she was my blood type. My parents fired the GI Dr that almost let me die. I was admitted to a room only to soon be moved me to ICU. All I remember from that first night in ICU was nurses constantly coming in and checking to make sure I was still alright, and my heart was ok. I didn’t find this out until much later that I was expected to die that first night in ICU, because my heart didn’t have enough blood to pump correctly. I had to receive almost 3 bags of blood! I spent 3 days in ICU, then 3 more days in a regular hospital room.

My family doctor recommended me not having dairy product as this would aggravate my colon. We went home and bought a juicer and stocked up on a ton of “non-dairy” products for me to eat. About a month later, I started flaring again in the night! I woke my parents, my mom called my pediatrician, and we were told to go straight to the hospital again… this time we went to a different hospital and a different gastroenterologist doctor at the recommendation of my pediatrician. I was in the hospital again for 7 days.

I got a new GI doctor and he changed my treatment plan and better explained this disease Ulcerative Colitis to us. I didn’t have a clue what this meant for my life ahead of me, nor did I know the complications I would come across with this dreaded disease. The doctor told us how to manage it, and I was given a new drug Asacol. It was working well and with it I was given a short dose of prednisone. I did end up going into remission, and stayed that way for a couple of years.
When I turned 16, I began to have more complications. Every now and then I would have diarrhea or bloody stools. This would always end up with me either taking a higher dose of Asocol, or Prednisone. It was always something interrupting my life with this sickness.

I hate prednisone by the way! I always end up swelling up like a cow, gaining a moon face on my already chubby cheeks, along with my patience going down the drain, weight gain, and irritance level shooting to the roof. It made normal teenage hormone problems even worse.

The summer before my senior year in highschool, I went to camp with my church. I started having bleeding and diarrhea at the end of camp. I came home and the Dr gave me Rowasa enemas, because I begged him not to put me on steroids again. I got better, but never got completely well. It all just seemed to drag on, but not bad enough to admit me to hospital, just to make my life miserable.

Then I got Strep throat before Christmas break. My pediatrician gave me a penicillin shot to try to keep antibiotics out of my colon hoping to prevent a flair. He is an incredible Dr who has helped me and supported me through this. The penicillin caused me to get CDiff. My GI Doctor didn’t realize I had CDiff because the first few CDiff tests came by negative. He thought it was a flair and treated it with steroid, which made it worse!

My parents and pediatrician thought my disease was getting out of control and helped my family get me into the Mayo Clinic in Minnesota in April. They figured out, after telling my history,I had CDiff and helped me recover from it.

Unfortunately, the damage from the CDiff was so bad that it caused another flair in July, just 6 weeks after I had started feeling better from CDiff.

I had to get on prednazone again and the doctors were very concerned about me dying from complications of steroids, because I had taken too much and my body was now “steroid dependent”. The doctors said I was either to have my colon removed or try Remicade. All oral meds have failed me, including Imuran. The doctors at the Mayo Clinic suggested that I try Rhemicade first, since removing my colon is permanent. I told my parents I did want to go ahead and try remicade, and last Wednesday was my first infusion. I was told I wouldn’t be able to see any changes in my body until after the 3rd infusion, and this has to be true, because I have not seen any positive results yet.

My old swim coach from my sophomore year in highschool is a Dr. Not my doctor, but a family friend. He called my dad after he went to a clinic with a Dr in town from UT Southwestern. This Dr was in town talking about probiotics (VSL#3) and a radical new procedure called a fecal transplant… yes… that’s what I said. Stool from a donor implanted into my colon to put “good” bacteria back in. My dad set up an appointment with this Dr and we traveled to this doctor, at UT Southwestern in Dallas this past weekend. We found out that majority of patients who have done this procedure and have UC have gone straight into remission, and one girl even was constipated for a few days… CONSTIPATED!:) I never thought I would hear that word again.

After meeting with this new Dr and finding out that this transplant may not work, because of the extensive damage my colon received from the untreated CDiff, I decided that I wanted to speak to a surgeon at UT Southwestern about the option of surgery. I spoke with the surgeon and I was given a “kit” to learn all about what my future after surgery might hold if I decided this option.

And that’s where I am today! We are going to try this fecal transplant in the next week or so. I am hoping and praying I’m in that large percentage of people it works in.

If it doesn’t work, I decided not to continue with Remicade. I struggle with upper respiratory sickness and want to travel and participate in missionary work and can’t go overseas with a compromised immune system. I’m also personally sick of being dependent on meds and don’t want to sit and get IVs every 6-8 weeks as a part of my life.

If the transplant is unsuccessful, and we will know that in 2 weeks, I have chosen surgery to get a j-pouch as the best option for me. I am ready to go ahead and have the surgery done, that way I can start to heal and be well enough to begin college in the spring. Unfortunately, I had to drop out since I due to my symptoms of UC and recent hospitalization.
I’m so ready to live a halfway normal life, instead of living on the toilet like I do as of now. I have to say that the Lord Jesus is the only way I have stayed halfway sane through out this whole thing and I have so many amazing friends and family who keep me in check and help keep my mind off of things.

I’ll keep you all updated about how this fecal transplant goes, it might be a new remedy to our situation! Stay strong guys, lets beat UC!

Where I’d like to be in 1 year:

UC free… and living the life of a normal 19 year old

Colitis Medications:

Prednizone- works great, horrible side effects (weight gain, moon face, irritability, hair loss)
Asacol- worked for a period of time
Pentaza- Didn’t work
Rowasa enemas- worked for a period of time
Remicade- hasn’t worked
Fecal Transplant (in the form of an enema)- about to find out!

written by Kaitlin

submitted in the colitis venting area




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cdiff, fecal transplant, jpouch

20 Responses to I Am Going to Beat UC – Fecal Transplant or Jpouch

  1. Magnus November 5, 2012 at 2:36 pm #

    Amen!

    Fecal transplants sounds like a great option, and hopefully soon standard treatment for UC. Keep your promise and keep us up to date about how it goes! It’s very interesting:)

    Stay Blessed!

  2. bev November 5, 2012 at 5:28 pm #

    OMG!! You are so freaking wonderful Kaitlin! Fabulous post!!

    Good on you for trying this fecal transplant. It will work…I just know it!! It’s all about good bacteria and probiotics. We have to actually heal our colons, and drugs do not do that. I have attained COMPLETE (finally) remission just with probiotics. I had to stop taking asacol, which I took for 13 years straight, because not only wasn’t it working, but it was making me even sicker in so many ways…more bleeding, looser, worse pain and cramping, nausea, and the list goes on. The specialist told me that all those things were symptoms of the UC…BULL!! It was the drugs!! When the specialist recommended steroids, remicade and imuran, I said…forget it! I read all about the side effects of those drugs and there was no way I was going to try them. Every drug eventually stops working with UC because the drugs don’t CURE it. The only way to cure it is through repopulation of good bacteria into our colons. Kaitlin…you are doing the right thing! Fecal transplant and probiotics ALL THE WAY!!

    Please, don’t consider the surgery just yet. I know you’ve been through the gamut, and what you said about this disease always seeming to interrupt our lives…we’ve all been there. It is a HUGE pain, this awful so called disease.

    I am sure this is going to work. I was going to have the transplant as well, but it took so long for the specialist to call, that I had already cured myself with the probiotics and L-glutamine (which heals the mucosa of the colon).

    Great luck to you!! You ARE GOING TO BEAT THIS!! Get this tranplant and ask the doctor if you should take probiotics afterwards, or even before and during, okay? I think you are supposed to, but I’m not positive on that. Heal that colon!

    Cheers girl!
    Bev:):):)

  3. joanna November 5, 2012 at 6:58 pm #

    hey girl!! i hope the fecal transplants help you. how many are you doing? i know the typical amount i’ve heard is 30 transplants- one per day and then you taperto once per week, once per month until you have no symptoms. it’s a slow process since the whole colon is damaged and requires a lot of help, but you can do it if you stay dedicated. you really need to find a reliable person who can be a donor since it’s a big commitment. i ended up doing 8 transplants at home but i got much worse unfortunately. i was a vegan and my donor was a meat eater so i think this might have something to do with how sick i got.

    post back if you start doing them. i’m curious to see if it will help.

    • Kaitlin November 5, 2012 at 7:54 pm #

      Hey Joanna, I am doing the fecal transplants for 10 days, and today was day 2. So far I have not seen a difference… which is sad because of how nasty they are… My doctor told us that if it does not work in 10 days, then we will know my colon is officially “uncureable”, and I will have surgery. Im ready:)

      • joanna November 6, 2012 at 2:30 pm #

        yeah, i agree that it is quite unpleasant haha it’s easily the grossest thing i’ve ever done in my life. blending poop every morning is not something i will ever do again… especially since it didn’t help me. do you have a doctor doing it for you or do you have to prepare everything yourself?

  4. uma November 5, 2012 at 7:15 pm #

    Probiotics has put my 22 year old colitis into remission for more than 2 years without a symptom. IT is Garden of life Primal Defense. I also took slippery elm and boswellia too, not anymore as things are fine now. The fecal transplant should work. Good luck and best wishes.

  5. Kristin
    Kristin November 5, 2012 at 8:05 pm #

    I agree with Bev! What an inspiring post! Your strength through this horror is admirable and encouraging. Good luck on your next journey and please keep us updated on your progress. My daughter is pretty successful on SCD but if ever she were not I would do fecal transplant before I EVER put her on prednisone again. Good luck. I’ll be praying for you! :)

  6. Lisa OH
    Lisa Kapp November 6, 2012 at 6:11 am #

    Hi Kaitlin. I like your spirit! You are a fighter and no way is this crazy UC gonna get you down! I was diagnosed Dec 2011 & by Feb 2012 my colon became toxic, so out it came. I’m waiting on the 3rd of a 3-step jpouch surgery. If I had had the chance to try other things before surgery, I definitly would have, like the probiotics (listen to Bev, she knows what she is talking about), SCD diet, etc. It is great that you are doing the fecal transplant, I hope it works. As for surgery, it’s rough at times, but it is AWESOME not to feel sick. I can’t say I miss Mr. C or Mr. R., and things are going well so far. If you have any questions about that route, hopefully you won’t have to go there, please feel free to ask!!!

    Good luck,

    Lisa

  7. Justin
    Justin November 6, 2012 at 11:46 pm #

    Hey Kaitlin! Im sorry none of the medicines helped :-( but you have such a strong attitude you are gonne kick the uc in the ass lol. I hope the fecal transplants work. I wish i could have tried them them but like Lisa my colon became toxic and had to have emergency surgery. My colom ruptured during the surgery and i got sepsis and massive infection it sucked. Im not gonna lie the surgery was rough but it is soooooo nice to have all the uc symptoms vanish. I would just say make sure you have exhausted all other options before you go under the knife. Definitely keep us updated and i hope you get some relief soon! :-)

  8. Tammy November 7, 2012 at 8:02 am #

    We at Santa Fe FCU miss you and wish you a speedy recovery!! We love you and are praying for you!!!!

  9. Terri November 7, 2012 at 2:32 pm #

    Kaitlin’s condition worsened and they are preparing her for the first of three surgeries for a J-pouch which will take place tonight in Dallas. Prayers are appreciated for my precious niece!!

    Thank you!

  10. Buffy November 7, 2012 at 5:25 pm #

    Kaitlin, we are praying for you!!! I am so inspired by your faith and fabulous attitude! I have a wonderful book for you to read written by a friend of mine who had rectal cancer and had to have the surgery. It’s called Flying High and that totally describes what you have done through this journey!! We love you and look forward to your continued testimony of an everlasting God!!!

  11. Diana Johnson November 7, 2012 at 7:21 pm #

    Kaitlin,Praying for you as you go through the surgery. May you feel God’s presence and His peace in your life. Also, praying for your family as they watch you go through this!

  12. Lisa OH
    Lisa Kapp November 7, 2012 at 8:00 pm #

    Sending healing thoughts your way…..

  13. Robyn Goss November 7, 2012 at 8:40 pm #

    Kaitlin,
    We are praying for a safe surgery. You are such a strong christian and I admire you for staying so strong through all your health balttles. Your blogs are amazing. Sending lots of prayers from Canyon!
    The Goss Family

  14. Teresa November 8, 2012 at 8:16 am #

    Kaitlin you are such a strong person, my thoughts and prayers are with you.

  15. Kristin
    Kristin November 9, 2012 at 1:42 pm #

    Praying!!! Please keep us updated!

  16. Bianca November 27, 2012 at 7:58 pm #

    My doctor told me that once I’m about 24 or something like that, my UC will calm down. Because just like you are, my body is changing. Hormones and stuff. That’s why our UC can’t go into total remission yet. I hope to survive until then without any surgery. But even if I do, it’s only the last foot of my colon. Not the entire large intestine. How much of your intestine is inflamed?
    I hope you get better and your transplant works for you. Good luck!

    Bianca

  17. Celeste October 28, 2013 at 5:34 am #

    Hi. Just read this now. How are you Katilin? No update in a year, so I am very curious and hoping you are well.

  18. Salsaflamenca February 4, 2016 at 4:45 am #

    Hello, I am also wondering how you are doing Kaitlin, did the fecal transplant work?
    I really hope it did! Were you able to get off remicade?

    Uma, I find this wonderful you got into remission for so long with probiotics, slippery elm and Boswellia. How much do you take per day?

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