It’s all done. Over with. Finished. I was given my first ileoscopy yesterday and it was an interesting experience to say the least! I initially had some concerns with dehydration and managing high-output from the prep (read HERE), but I’ll have to admit that things went a lot easier than I expected. I took a lot of notes, so hopefully this will give you an idea of what to expect, but keep in mind that our experiences can differ greatly.
On July 9th, I’ll be getting scoped as a follow up to my ostomy surgery and to also make sure that my Crohn’s hasn’t spread to my small intestine. When we lose our colon, we don’t expect that we’ll ever need to be scoped again, but the reality is that those of us with IBD (especially Crohn’s) need to get monitored to make sure that our illness is kept in check. Before getting my stoma, I was told that my chances of Crohn’s spreading to other parts of my bowel were very low – still, it’s always a possibility. While researching for my post on the Environmental Risk Factors for IBD, I came to realize that even though I can make lifestyle decisions which can reduce my chance of flaring or a reoccurrence, nothing is guaranteed. I was feeling pretty great after my last two surgeries, but after receiving a tetanus booster in February, my joints started hurting and haven’t felt right ever since. This reminded me that my body is still primed for IBD, losing a colon didn’t cure it and there will always be a chance that Crohn’s will one day rear its ugly head again.
I’ve been trying a new Hollister ostomy system out, and I immediately noticed something that I found rather annoying: the pouch outlet just dangles from the bottom. It’s not obvious if you have an empty pouch, but as you start moving and your pouch fills up, poof – it dangles around like a Christmas ornament!
Curious, I took to twitter to see what other Hollister users thought, and the response I received was a bit surprising. One ostomate said that you simply get use to it and another uses a binder clip to keep it in place. Call me spoiled, but companies like Coloplast and Salts have already solved this issue by adding a strip of velcro to the pouch to keep the outlet from flapping around. So I thought, “why not do the same with the Hollister pouch? ” And so I did.
Yesterday, I had a pretty normal morning… emptied my pouch at 7am and then again at 10:30am. For brunch, I had some leftover rice with avocado, followed by two medium-sized apples.
My stoma is usually pretty inactive in the afternoon, but when 4pm rolled around and there was no output in my pouch, I knew something was up. I started getting abdominal cramping soon after and with a few stoma “farts”, I still couldn’t get anything to move. I finished 2L of water and began massaging my belly until around 10pm. At that point it had been almost 12 hours since I last emptied my pouch and there was only a little output in my bag, so I went onto Plan B.
I’m honored to have been asked to write a guest blog post for the Crohn’s Forum Blog. I’m an active … Read more
Inspired by another fellow blogger (Behind the Times by Stephen Dempster), I’ve decided to finally get a proper EDC (every day carry) bag for my ostomy supplies. This new bag is replacing a MUCH LARGER tactical shoulder bag, which I may still use for hikes or whenever more supplies are needed.
6am on a Monday morning. I wake up in a haze, ballooned pouch at my side, but something was wrong…
Leaks. One of those things that happen to ostomates at one point or another, it’s just a matter of when and whether or not you’re prepared for it. This morning it happened to me, and I’ve learned a few valuable lessons in the process.
“IT’S NOT WHAT YOU EAT, IT’S WHAT YOU ABSORB”
When it comes to nutrition, that’s the golden rule. You hear a lot about how eating a healthy diet will improve your health, but that’s only IF you absorb the nutrients from your food. For most healthy people, this isn’t a big problem, but if you have a digestive disorder or if you’re eating a plant-based diet, there are things you can do to enhance the absorption of nutrients.
Food substitutions may be required if your digestive problems extend to more than just having a stoma. For some of us with IBD (Ulcerative Colitis or Crohn’s), there may be problems like strictures, internal scarring or active disease that might be preventing us from eating certain foods. This certainly poses a problem, as getting adequate nutrition often involves eating a variety of food. So what can we do about that?
I’ll be heading in for my second surgery soon. This time it will be to remove my rectum. For my ileostomy surgery, I brought a lot of stuff to the hospital – too much, in fact. So this time I’ll be trimming down what I bring based on that experience. Here are some things that you should bring or may want to consider bringing during your next hospital stay.