Tag Archives: memories

2015 at The Stolen Colon

I’m always amazed at the end of each year as I look back and realize all that happened in the past 365 days. Obviously 2015 held even bigger changes than previous years as I announced  my pregnancy at the beginning of the year and gave birth (amid some ostomy drama) to my son. And if that wasn’t enough, in my personal life, we settled into our new home that we moved into just before the beginning of the year, I decided to leave my full-time job in favor of working from home and getting to spend time with my kid, and celebrated 5 years of marriage to my husband.

I thought I’d take this chance to highlight some of my favorite posts from the past year. I actually had a hard time narrowing this down because there were a lot of posts that really meant a lot to me this year. It’s pretty pregnancy / baby dominated, but I’m OK with that!

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From the mother of a Crohn’s disease patient

In honor of Mother’s Day, here is a post from a very special mother. She has been by my side, all of these years, fighting for me as I tried to navigate this life living with Crohn’s disease. Mom, you are such an amazing, beautiful, godly, strong woman and I am so proud to call you my mother. I know I would not be the woman I am without your love and support. Happy Mother’s Day!

One of the greatest fears of a parent is to have something bad happen to their child. I remember watching some telltale signs of weakness in
Stephanie, knowing she was running to the bathroom, and feeling generally lousy. Was it a stomach virus, salmonella, even a parasite? One by one, these were ruled out by medical tests, while Stephanie was getting more tired, paler, and thinner.

Our family doctor wanted her to see a GI, and he ran more tests, while telling me ‘not to jump to conclusions’ when I asked if it could possibly be Crohn’s.
He wanted to try some oral meds, and wait for them to work, while Stephanie continued to get weaker, paler, thinner.

stephanie hughes crohn's disease sick hospital lost weight child kid duke stolen colon ostomy colitis blog family parents sistersUltimately, we wound up with the pediatric GI team at Duke Hospital, and a correct diagnosis was made and treatment begun. My 75 lb. Stephanie, now only 50 lb., would spend the next 25 days in the hospital, and the following year recovering. Mother’s Day 2000, I was happy to have my baby on the mend – even though she was full-faced from all the steroids, hair in complete disarray as so much had fallen out, and now new hair was coming in underneath, but she was alive!

Several Mother’s Days since have been spent at her bedside, or walking the floor praying for strength for her. Mother’s Day 2008, we proudly watched her graduate from UNC Chapel Hill, thankful she made it through, sometimes on sheer will and determination. Mother’s Day 2012 was celebrated at her home, as we tended to Stephanie, just home from the hospital after her Ileostomy. Mother’s Day 2014 – my baby is feeling great, in Italy on a second honeymoon with our wonderful Jarrod.

I may not know what tomorrow holds, but I know Who holds tomorrow. Happy Mother’s Day to all women who are, will be or have a mother.

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My 2 year Stomaversary!

What I have learned in the past 24 months of living with an ostomy

It is amazing to me to think that on this very day, just two short years ago, I was at UNC hospital, saying ‘goodbye’ to my colon. (I actually wrote an obituary for my colon that day!) At that point, I was scared, but I was ready. I was ready to start feeling better. I was ready to be able to walk again without being in an enormous amount of pain. I was ready for my life to start again.

For several months, I felt like everything had just stopped. I had quit my job because I was feeling so bad. I had a hard time going out with friends, even for a short time. And I was trying every last-ditch effort I could think of to save my colon, like changing my diet and ultimately going cold turkey off of all meds. (Side Note: Not a good idea.) But obviously, none of it worked.

I think back to those times and wonder… Why did I fight it so hard? What if I had gotten the surgery soon? How would that have changed those years of suffering and exhaustion? But I realize that I should never think like this. It doesn’t matter “What if.” All that matters is what happened and where I am now. I also don’t think that I would as fully appreciate the new life my ostomy has given me if I hadn’t been through all of those things. I may not be as comfortable as I am with my ostomy if I didn’t have the memories of the difficult journey I have been through.

That’s the reason that I would never tell anybody, “You should get your colon removed and get an ostomy… It’s great… I’ve never felt better… I wonder why I didn’t do it sooner.” If you are blessed, as I was, with the ability to make a decision about having the surgery, rather than being taken into emergency surgery, then it should be taken seriously. The decision to let go of your colon and accept the idea of an ostomy bag, especially a permanent one, is a HUGE decision. It will change your life. It will affect the way you feel about yourself. It is a decision that the patient needs to make and on they need to be able to live with. So I would never push somebody in the direction of having surgery.

What I am here to say is, “It’s going to be OK.” Whether you have run out of options or you have just accepted the fact that you will do whatever it takes to feel better, this decision is not going to ruin your life. It does not have to be so scary. It does not have to be so devastating. Just as each person living with Crohn’s disease or ulcerative colitis have found a way to make it through each day and have adapted to the changes it has brought to their life, you also learn to live with an ostomy.

And after 730 days of living with an ostomy, that is exactly what I have found: It’s all OK.

This picture is probably the last one ever taken of my stomach pre-ostomy, next to one of me from today.

stomaversary 2 year anniversary stoma colon ostomy ileostomy blue dot stomach stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blog ostomy

Yes, sometimes I wish I still looked like the one on the left, Yes, sometimes I miss having a colon. Yes, I still get upset at times when I look at my stoma. Yes, I sometimes try to remember what it’s like to be “normal” (even though I can’t really do so). And YES, it has all been worth it.

I am now living with a lot less stress and worry and pain than I used to. I wouldn’t go back to the life I had before for anything. My ostomy has changed me. And while I may not like every single thing that has changed along with it, it has given me back some of the hope I had lost in living a beautiful life.

Spending Easter in the hospital

It’s amazing to think how far we can come in just a few short years. On this day, just two years ago, I was sitting in a hospital bed on Easter Sunday. I was on day four of my second trip to the hospital within a week and probably my sixth hospitalization in as many months. I was worn down. I felt defeated. I wanted to fight, but I didn’t have much left. But more than anything, I was scared. I was scared of what it would mean to live my life without a colon, scared to go on with a bag stuck to my stomach.

ostomy nephew birthday sick illness memories stephanie hughes stolen colon crohn's disease ulcerative colitis inflammatory bowel disease ibd blogI wrote this post on that day in the hospital. It was for a fundraiser my friend was hosting on her blog that raised money for Crohn’s disease and ulcerative colitis research. The picture I included was taken about two weeks before that hospital stay at my nephew-in-law’s first birthday. (I didn’t allow many pictures to be taken, so this is the only one I could find from around that time.) You may not know it from the picture, but I was able to hold him long enough to take that picture and had to quickly hand him over because my stomach could not take the stress. I also spent the rest of the party propped up on the couch because my knees and back were aching with arthritis so badly that I could hardly move.

It is, as I said, amazing to look back and remember those feelings that day. I will always remember them. But even more, I will always remember rising above them

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April 8, 2012

I am writing this from a hospital bed. It’s not where I imagined I’d be spending my Easter weekend, but I had a bad bout of symptoms kick up this past week and I ended up here. Now, I have to debate the possibility of losing my colon.

I was diagnosed with Crohn’s disease in 1999, when I was thirteen years old. For a couple of years preceding the diagnosis I dealt with symptoms including stomach pain, diarrhea and weight loss.  In 8th grade, my symptoms hit an apex. I was a tiny 75 pounds, and quickly dropped to down 50. I stopped going to school. I was constantly running to the bathroom. I was even blacking out at times, once almost falling down the stairs. I was admitted to the hospital and hooked up to all kinds of fluids and nutrients. After twenty-five difficult days of medicine and prayer, I was able to go home. It was a rough road to gaining weight and strength, not to mention trying to fit back in at school after missing half a semester.

I got back on my feet and spent five years with no symptoms, other than an occasional “flare up” that would last a couple of days. It wasn’t until my freshman year of college that I had another big Crohn’s related issue and landed in the hospital for the two weeks before Christmas. After that I spent several years teetering between flares. I’d have periods of symptoms and periods of normality. Then about the time I graduated, four years ago, things seemed to level off and my symptoms decided to stick with me constantly. Since then, I’m not sure that there has been one day I have not dealt with symptoms.

Crohn’s is an invisible disease. You don’t pass somebody on the street and know that they’re dealing with it. If you saw me at the mall, you’d never guess I had an issue. That’s because it attacks the gut, and those of us with Crohn’s have had lots of practice hiding it. Many people don’t realize the severity of the disease because its sufferers don’t often “look sick.” Crohn’s disease involves inflammation of the digestive tract, or “redness, swelling, pain, tenderness, heat, and disturbed function of an area of the body, especially as a reaction of tissues to injurious agents” (dictionary.com), i.e. when a sprained ankle swells up. But this inflammation is irritated by the food moving through the digestive tract leading to the pain, and the food is pushed through without nutrients being absorbed. Ultimately, there is diarrhea and often a loss of blood.

There are a number of medications out there, but many have severe long-term effects and some are so new that the long-term effects aren’t even known. Most Crohn’s medications were developed for other issues such as arthritis, psoriasis and even MS, which have similarities to Crohn’s.  No major medication has been specifically developed with Crohn’s sufferers in mind.

For me, I’ve run the gamut. I have tried about every medication possible, and have even done some alternative treatments such as diet and acupuncture. Nothing has seemed to work. So here I am, doing all I can to hold on to my colon and not lose a vital organ from my body. In my scenario, losing my colon means an ostomy bag.

Research for Crohn’s and other inflammatory Bowel Disease has come a long way in recent years. New medications are on the horizon and I continue to hope that a cure is within reach. I can’t say “thank you” enough to Reagan and Glory Tree Flowers for wanting to take part in something so needed and so close to me. I can only hope and pray that in the near future; someone else won’t have to be laying here wondering if they’ll be able to keep their colon.