Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

From Pancolitis to No Colon and an Ileostomy

Faith with ileostomy

That’s me!

Meet Faith:

Hi, I’m Faith. I’m currently living back in my small hometown, and I recently graduated from college. I have a lot of time to fill my days with random stuff– reading, shows, music, & hanging out with people.

Some more about me:

I don’t have my colon and when I was young I was given the nickname “Frogger” because I would toot when I laughed. I like to try cooking different foods as for a while I led a vegetarian diet. I enjoy sewing (most experience making quilts), and I also just like to be outside doing whatever (in the ideal world– gardening or biking).

Current Symptoms:

Mucus

From Pancolitis to an Ileostomy

I was diagnosed with Ulcerative Colitis this past summer in August (2012). My symptoms of mucus, blood, cramps, and urgency started in July (2012). They progressed after I started taking the antibiotics, cipro and flagyl. I wound up with the C. Diff. infection. I was given more flagyl. I couldn’t keep anything down and became very dehydrated and was hospitalized for my first time. In the hospital I had a sigmoidoscopy and was told I had UC. I started on Asacol along with Presnisone, vancomycin, and stomach acid pills. I found myself in remission– no more blood in my stool. Then in November another flare-up began and I lost even more weight than my first run around the block with this disease. I was hospitalized again and had another sigmoidosocpy. I definitely had pancolitis. This time the Presnisone was not successful at stopping my inflammation. I had my first blood transfusions, because I became anemic. I was put on TPN as I was quite malnourished because everything I consumed hurt me and came out right away. I was in the hospital for a 11 days and transferred to another hospital to have an emergency surgery- the surgery to remove my entire colon, since I had signs of toxic megacolon developing. Basically, I had the choice of removing my colon and getting an ileostomy or death. Of course I chose to live an alternative life than continue to suffer and die.

I felt so relieved after this surgery and happy that I could begin recovering. I want people to know that having an ileostomy or ostomy is NOT the end of the world. I feel so great now and feel like I was given a new life.

My life has changed from this disease by learning more about myself and what I want out of life. I think the disease really teaches you to appreciate the days you feel good and not take for granted things like eating and not feeling fatigued.

I would like to hear from people who have had the J-pouch surgery done, like how long their recovery was, how long it took them to feel comfortable going out of their butt again, and what complications I might face down the road…I want to know anything about people’s experience with the J-pouch.

I am going through the 3-stage surgery process. My first surgery just got rid of my colon, because it was so toxic and had barely any lining left. My second surgery will be removing my rectum and making the J-pouch. My third surgery will be taking down my ileostomy.

p.s. I have been open to everyone about my ileostomy, even though it is easy to hide from people, because I want people to know what this disease is and all that it entails.

Medications:

I am weaned off Presnisone! I take an iron supplement and a daily multi-vitamin.

written by Faith

submitted in the colitis venting area




18 Responses to From Pancolitis to No Colon and an Ileostomy

  1. OrdinaryWorldWhereRU February 2, 2013 at 2:35 pm #

    You seem so strong. Thank you so much for posting your story. It does help alleviate some of my fears and concerns. If I were to face the same outcome, I am sure I would panic a bit but I could come back to stories like yours for comfort and a reminder that life does go on. Thanks again.

    • Faith February 2, 2013 at 6:38 pm #

      Thank you. I am trying to stay strong and patient. I’m glad my story has helped you a bit! Stay in-touch with your doctors, and they should be able to get you through any bumps along the road.

  2. Lisa OH
    Lisa February 2, 2013 at 2:56 pm #

    Hi Faith. My story is similar to yours – diagnosed last Dec 2011 with UC which became toxic so had to go the 3-part jpouch surgery route, the first one being Feb 2012. I had my 3rd and final surgery on Dec. 20th. It’s been a rough road, many ups and downs. I’m still getting used to pooping normally, after having had an ileostomy for 10 months. At first, things were going great, healing well, getting used to pooping, but then I got cdiff (for the fourth time), which really really set my healing back by alot. I’ve been on a strong dose of vaco for the past month, and then will probably have a fecal transplant to keep that pesky bug away for good.

    Good luck with your surgery journey. You are a strong, resilient woman!

    Lisa

    • Faith February 2, 2013 at 6:43 pm #

      Hi Lisa! Thanks for the kind words. I hope that pesky bug stays away from you here on out. From my one time having it, I know how much of a pain in the a** it is. It’s good to know of someone who has gone through the 3-stage surgery process. It was sort of daunting when I first heard my surgeon say that after my first surgery it would be 4-6 month recovery time. But now that I am feeling so much better it does not bother me much. I have my second surgery sometime this spring; it hasn’t been decided yet. I wish you luck with getting back on the road to complete recovery!

  3. bev February 2, 2013 at 3:31 pm #

    What a great story Faith!

    I love how you said… ‘I felt so relieved after this surgery and happy that I could begin recovering. I want people to know that having an ileostomy or ostomy is NOT the end of the world. I feel so great now and feel like I was given a new life.’

    That is the best!!

    I am over the moon for you. You truly have your life back!

    Cheers
    :)

    • Faith February 2, 2013 at 6:46 pm #

      Thank you Bev! I really do have my life back and am so thankful that UC is “curable” by removing the problem area! Best, Faith

  4. shelly in maine February 2, 2013 at 3:41 pm #

    Hey Faith,
    Great post!
    You can look under the “surgery” spot up top under the ihaveuc title and read, comment,ask all those amazing people who have posted their inspiring detailed stories…you’ll be glad you did! :-)
    Continued health and healing, Shelly

    • Faith February 2, 2013 at 6:53 pm #

      Thank you that helps a lot!

  5. uma February 2, 2013 at 7:03 pm #

    Faith you look so pretty and beautiful. And you are a strong and happy person too. We need more people like you.
    I wish you all the best in life.

    • Faith February 2, 2013 at 9:58 pm #

      Why thank you, that is really nice of you to say! Wish you well too.

  6. Jaime February 3, 2013 at 8:30 pm #

    Faith, you are so awesome and truly a strong person for your outlook on this and by expressing yourself through writing.

    • Faith February 5, 2013 at 1:25 pm #

      Thank you Jaime boo. I’m happy to have you through this all.

  7. Blake February 3, 2013 at 10:54 pm #

    Hey Faith,
    Glad to hear you’re feeling better and you have a really good attitude about your situation. I had a 3 step J pouch surgery, final surgery was last August 2012 and I have been living with the J Pouch since, so just a little over 6 months. I have written a few stories and you can find them in the surgery section. I can’t write everything about what it’s like to have a J Pouch, but I can tell you it’s simply better than having Ulcerative Colitis. I also liked the ostomy bag, felt great with it, didn’t know if I wanted to give that up for a chance at maybe not having so much luck with the J Pouch. I’m glad I went through with it though. I go to the bathroom about 5-8 times per day on average. That sounds like a lot… and it is for a normal person not dealing with UC or someone with a J Pouch, but it’s controlable, I know I’m not gonna have an accident, and I’m not in pain. Every once in a while there are nights where I have some leakage. Leakage is a nice way of saying you shit your pants a little bit. It doesn’t happen often for me anymore, but that is one of the drawbacks. Overall I’m very happy with my J Pouch and the only thing I would trade it for would be a perfectly healthy colon, but that’s out of the question. I wish you good luck on your future surgeries and keep that great attitude… it will make things so much easier!

    • Lisa OH
      Lisa February 4, 2013 at 6:09 am #

      Hey, Blake. I had my takedown on Dec 20 and still getting used to going out of my butt. Making progress, but slow going since C diff. It’s not bad, I go abt 8-10 w/in a 24 hr period, hoping to be in your range at some point. Do u go 5-8x w/in a 24hr period or just during the day? Also, how many times do you have to get up at night?

      As always, thx for your openness and candor!!

      Lisa

      • blake February 4, 2013 at 10:25 pm #

        Hey Lisa,
        Yes, I was referring to a 24 hour period. Some nights are better than others, but the normal for me is waking up at around 5 or 6 to use the crapper, which sucks because I dont have to be up till 7:30 and I usually dont fall back azleep. Then there are nights like last night where I think I woke 3 or 4 times to go, but it was Super Bowl night and I ate a lot of junk. Haha! I have had a few nights where I havent woke up at all, but that doesnt happen too often. I hope you get that C diff under control. I was probably right around the same range you are know a month and a half out of surgery so I wouldnt worry too much right now. I know you’ve probably seen my rants on my bidet I got after takedown, but I highly recomend you looking into getting one. They’re great!

    • Faith February 4, 2013 at 8:10 am #

      Hi Blake,

      Thank you. I hope you are well! I will check-out your stories. I’m having a tough time deciding what route I should take…j-pouch or permanent ostomy. Most people say that they are glad that they got the j-pouch overtime and those with a permanent ostomy adapt well and keep on living too. I guess I cannot go that wrong with whatever I choose, because both options are better than UC, like ya said. Thanks for letting me know the frequency of you BM, what can happen at night, and that there is no urgency or pain. If that’s all the “complications” you have had I think the j-pouch is worth trying. Good luck to you!

      Thanks for the wishes,
      Faith

  8. Emie
    Emie February 25, 2013 at 7:51 pm #

    HI Faith,

    You are such a strong woman!! I cant even imagine what it would be like to go through all of this so quickly. Im not sure if I was lucky to battle this for 9 years or not, I at least had the choice to have surgery or try other meds and you basically had no other choice. I had my 1st of two surgeries on Dec 19th, and am scheduled to have my take down on the 9th of March. I am pretty scared to have the next surgery though since I have been feeling so good having the bag. I feel the same way though about the bag, I like want to tell everyone that I have it just so there is more awareness about this disease, no one even knows what I am talking about when I tell them what I have, or had. It isnt something that anyone seems to want to talk about because it isnt pretty, but it is reality and it seems that so many of us have to go through it. I also agree that it really makes you appreciate life so much more and appreciate feeling good and eating a meal and not running to the bathroom, or drinking water for that matter. You are lucky to have found this site though, there are so many great stories on here. I think if you read lisa’s story you will be able to relate to her very well, she had a heck of a time too. My stories are on here too, I didnt have the same experiance as you but maybe you could get something from it too. Hang in there girl, you are strong and beautiful and your whole life is ahead of you, and it is going to be a great one!!
    Emie

  9. joanna February 25, 2013 at 9:06 pm #

    hey faith. i just saw your post. i’m on this site a lot but during the time your post was put up, i had c diff and ended up in the hospital for a week. that infection is a biotch, isn’t it??? total hell. i ended up with paralytic ileus and they had me on no food for a while. that was miserable but i’ve done that numerous of times in the hospital before. luckily, the vanco has helped but i see the doctor this week to check my stool tests. that c diff better be gone!!

    i’m glad you are doing better. i was very scared while i was there even though i’ve had problems with UC for years now. you just gotta do what’s right for you. i’m like you with the fact that i tell everyone about my disease and how i’m feeling. people can get easily offended by things UCers do if they don’t understand the disease. just best to be honest.

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