Colliding with Colitis

Aaron DamigosMeet Aaron Damigos:

Born on July 14, 1993, I was diagnosed on May 5, 2011 with ulcerative colitis and had my colon removed on May 14, 2012. In high school, I was a big band geek and now, in college, I’m studying to be a GI Nurse. I volunteer for the CCFA and am currently helping someone start a nonprofit organization for people with IBD.

Some more about me:

I am left-handed, I love spreading awareness about inflammatory bowel disease, and I am very good at playing the clarinet. I was born in New York and raised in California.

Symptoms:

Since I had my colon removed, I don’t have any of the symptoms you experience from ulcerative colitis and I am very happy about that, but I do have to adjust to life without a colon. I go to the bathroom about 4-6 times a day and my stool can be liquidy at times, but it sure beats having my colon.

Colliding with Colitis

I have ulcerative colitis and I am living with a fully functioning j pouch. I was diagnosed on May 5, 2011, though I did experience symptoms as early as Christmas of 2010. I had gone to see my pediatrician, because I was 17 at the time, to find out what was wrong with me. She told me that it was probably a hemorrhoid and I should try eating a lot of fiber. Of course, that just made everything worse and went back to tell her that I was still having problems after about 2 months of eating lots of fiber.

I was then scheduled to have a colonoscopy, where I was diagnosed. My GI had given me a steroid in enema form to take to make the symptoms I was experiencing disappear and I was also put on a bland diet. The week before my high school graduation, I had lost about 10 pounds, because of the lack of choice in my diet. Both the bland diet and medicine were working for me; I was not experiencing any type of symptom. My GI had then proceeded to put me on a new medicine called Asacol. I had taken that for a week, up to the day of my high school graduation before I realized that it was actually making symptoms worse. During my Sober Grad Night, I was running back and forth to the bathroom. I ended up leaving Sober Grad Night early. I was taken off of asacol and then put on prednisone. We all have our experiences with this drug. It did take away my symptoms of ulcerative colitis, but it also gave me the many side effects that are associated with it. I had night sweats, fast heartbeat, enlarged appetite, weight gain, and horrible acne breakouts. I experienced mood swings and was turned into a whole other person because of this one pill that I took. I was put on imuran during the tapering of the prednisone. Several days after I was off the prednisone, my ulcerative colitis symptoms slowly began to come back. I was supposed to be in remission after the prednisone treatment.

My doctor suggested then that I either take Remicade o r get my colon removed. I chose to try Remicade. This drug only worked for only for about three days. I had three more infusions, hoping that it would work again. April 2012, I wanted a colonoscopy to see how much my disease had progressed over the past year. My whole colon was affected and my GI suggested getting surgery. I agreed with him and I was scheduled to have my colon and rectum removed on May 14, 2012. Unlike most people, I had my colon and rectum removed and had my pouch constructed and attached to my anus all in one step. It was a successful surgery that only took about 2 hours, but I was stuck in the hospital for 12 days. I started to throw up and I lost my appetite on day 6. I lost about 30 pounds. I am now colon free with a j pouch. I take psyllium husk fiber powder and lomotil three times a day before every meal.

Having a disease like this one can be hard for any person. I am sick on the inside, but I do not look like it on the outside. It is hard for anyone to comprehend what I am going through unless I tell them exactly what is happening; sometimes it is hard for me, too, because it is too personal for me to explain. This experience with ulcerative colitis has really forced me to grow up on the inside because I have learned how to really take care of myself. I may not be “normal” anymore, but I am still my own person and I believe that is enough for me right now to get through life. I love talking to other people with IBD because it reminds me that I’m not alone in this. I am able to talk to and relate with people who also have IBD. Not everyone who has this disease is as open as I am, so it’s hard to find people that can empathize around the area I live in to discuss all of my issues with. I don’t need to go see a therapist or a counselor because they won’t understand how it feels either. Sure they could give me advice, but everyone else can too and it would all be the same. The only person who would be able to give me real advice is someone who has gone through what I have. I use Twitter (@aaronmichaeld), Tumblr (aaronmichaeld.tumblr.com), and other social media sites to connect with people. I would like to become a known person within the IBD world. I want to help others and let them know that they are not alone. I want people to read about what I’ve been through and let people know that I am here to help. I do actually appreciate my disease and I want to show people that there’s no such thing as normal. We are who we are.

Before, I wasn’t able to eat food, go out without worrying where the nearest bathroom was, have a decent social life, and I was in pain the majority of the time while only passing blood when using the bathroom. It was such a horrible experience, but now, since my colon is gone, all of the pain and suffering is a thing in the past. If anyone reading this knows or are a person with Crohn’s disease or ulcerative colitis, I am a person who has experienced it and is willing to talk about it. Everything will be okay in the end. If it’s not okay, it’s not the end.

Colitis Medications:

If medication does not work for you at all and you can’t find any relief with adjusting your diet, removing your colon is not a cure, but it can help you tremendously like it has helped me.

I got a one step procedure, personally, because my surgeon said that I was a good candidate and I didn’t want to deal with the temporary ileostomy or have multiple surgeries. My surgery was very successful. Do not settle on one surgeon. You have many options when it comes to this surgery because you can do it in one, two, or three steps. You should only get a one step procedure if you haven’t been using steroids recently. That is why I was a good candidate. Always get a second or third opinion when getting medical advice because it is your life that will be effected in the end.

When you wake up from surgery, you’ll feel like you’ve gotten hit by a bus. This pain is only temporary. The surgeon has cut through your abdominal wall to get to your colon. These muscles support your whole body, so don’t freak out if you aren’t able to walk right away. You just have to keep on trying. Walking will make you stronger and will lead you to a quick recovery. Walk as much as you can whenever you can.

With a j pouch, you’ll notice that your stools are very liquidy. With these loose stools, you’ll also notice that you’ll want to empty out your j pouch very frequently in the beginning. You don’t actually have to go. Your j pouch is at it’s smallest right now and you want it to keep expanding, so you can decrease the number of bowel movements you have in a day. Try to hold in the urge to empty your j pouch or it will never expand.

To slow down digestion, I take a medication called lomotil. It helps me a lot. It is a controlled substance, so I would not recommend suddenly stopping it. Like prednisone wean off of it. If you’re having trouble with frequency of bowel movements, ask your surgeon about lomotil. In the hospital, I went from 24 bowel movements to about 8 in one day. Keep in mind that this number will get lower with time.

Thickening up your stools can be done in a number of ways. I found that it’s easiest to take Metamucil psyllium husk fiber powder. I personally buy the Equate brand, which is Walmart brand. It’s cheaper and it works the same. Metamucil does offer wafers instead of the powder, but those tend to be more expensive than the powder. I usually eat those when I’m traveling so I don’t feel like I’m taking medication. They taste great and come in two flavors (apple and cinnamon). You also have a choice of flavors with the powder (berry, lemonade, and orange). I use the orange flavor because I heard that it’s the easiest to get down, but I haven’t tried the others, so I don’t really know.

When starting Metamucil, there is a specific process you’ll want to take to slowly build up to the full dosage. The first week of taking it, you’ll want to take one tablespoon of the powder (or one package of the wafers) a day. The second week you’ll take two tablespoons (two wafer packages) and on the third week you’ll take three tablespoons (three wafer packages). When building up to the full dosage, it’s easiest if you eat the wafers for the first three weeks and then switch to the powder on week four. Remember to take only one tablespoon (or wafer package) per meal.

When taking the powder, you won’t want to mix it with 8 ounces of water. The way I do it is I take a little bit of the tablespoon and put it in my mouth and then I sip just enough water to get it down my throat. Keep doing that until all of the powder is gone. I recommend only drinking about 2-3 fluid ounces of water per tablespoon (or wafer package). If you drink the full 8 ounces of water, it will not thicken up your stools. Now, wait about 30 minutes to an hour until you drink fluids again.

In the morning, I would mix the powder with my favorite kind of Greek yogurt and then eat it with my favorite cereal. It makes taking it so much easier than having to spoon it into your mouth. You’ll get used to the spooning over time that it’ll feel like muscle memory.

I know how annoying it is to adjusting to your j pouch, but it is worth it. You’ll feel almost normal again.

Like with all medication, this may not work for you. I am not telling you that you need to do this because I am sure that there are other ways you can thicken up your stools and slow down digestion. This is just what I do because I have found that it works for me.

written by Aaron

submitted in the colitis venting area

8 Responses to “Colliding with Colitis”

  1. TimMarch 4, 2013 at 9:22 am #

    Aaron

    I’m amazed that you had your colon removed within a year after you we’re diagnosed. I’ve had UC since 1991. I don’t plan on surgery … ever… Its a last resort for me. I believe surgery creates a whole new array of problems. MY UC is under control for now, I only have one BM per day. Having surgery is an individual choice. In your case you probably made the right one. Thanks for your story.

  2. Chris from Massachusetts
    Christopher from MassMarch 4, 2013 at 10:43 am #

    Thanks you so much for your story. You never know with this disease what its going to throw at you, but your story and insight really give me hope if I ever have to face this option. If I ever do I will definitely try to find this post to review your experience.

    • Aaron Damigos
      Aaron DamigosMarch 24, 2013 at 9:19 am #

      I’m glad that I could help. If you ever need anyone to talk to, I’m here. I’m usually always online. You can find me on Twitter, Facebook, and Tumblr.

  3. Lisa OH
    Lisa KappMarch 4, 2013 at 2:36 pm #

    Hi Aaron. Thanks for sharing your story. You have been through alot! I also have a Jpouch, having to get my colon removed 2 mos after diagnosis b/c it became toxic. Overall, I’m finding that surgery has been a good option, especially since none of the drugs worked for me. Here’s to many, many more years of good digestive health!!

    Lisa

    • Aaron Damigos
      Aaron DamigosMarch 24, 2013 at 9:22 am #

      My mom keeps of telling me that I should’ve had the surgery from the start, but I don’t think I should’ve. Surgery is definitely a last resort. I’m glad that I tried every option I had. I miss the moments when I had a normal, working colon, but I sure feel great now. I do have some bad days still, but they aren’t nearly as bad as before!

  4. bevMarch 4, 2013 at 4:10 pm #

    Yes…sick on the inside and look fine on the outside…very well said! That’s UC in a nutshell.

    Great story, Aaron…really great. It’s not yhe end of the world when we get diagnosed, even tho it may feel that way at the time.

    Cheers, and all the best!

    Bev
    :)

  5. BryanSeptember 4, 2013 at 11:38 pm #

    Hey Aaron,
    Funny story, I was born september 14th, 1993
    I was pooing excessively my Junior year of highschool and in Janurary 2012 I was diagnosed with UC… After coming down with drug fever from the Asacol, my body laughing at the steroids ( prednisone ), and double (yes 10mg) the regular amount of remicade infusions my UC just wouldn’t quit. I went in for my second colonoscopy and my colon purferated, became septic, and I had emergency surgery on June 23rd 2012… Lots more to share, but currently I’m taking my sophomore fall semester off to tackle my September 11th (bad omen?) J-pouch surgery. I already have the J-pouch this surgery Is the third and final surgery to reconnect. I would love to get involved and also just talk to you more because our stories are pretty similar: it was like reading my own story above Please reply and I hope I can help with my experiences, aid others, and continue talking to you that isn’t in the form of replying to blog entries :)
    Thanks
    Bryan

    • Aaron Damigos
      Aaron DamigosSeptember 26, 2013 at 7:34 pm #

      Hey! I apologize for the late reply, I never get notified when people reply to this. I would be happy to talk with you! I’m pretty much on every social media platform, so feel free to send me friend requests and stuff. I think I’m easy to find. If not, send me an email to aaronmdamigos@aol.com.

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