Health Advocate

Crohn's is just one of those diseases that can cause you to look pretty good (normal) on the outside. Meanwhile, all hell can be breaking loose on the inside. No one knows the plight of someone with IBD like someone with IBD. Trust me. So, I write this blog not just because of its cathartic effects, but also because I truly believe my words can help someone else. In fact, it was Stephanie Hughes and her Stolen Colon blog that helped me tremendously. Stephanie's story is so similar to mine and she discussed in her blog the things that I would experience post surgically.

I have joined several online communities. All of them center around people with ostomies. Most recently, I had the opportunity to connect with someone who has only been out of the hospital a few days following her proctocolectomy (surgical removal of colon, rectum and anus). After reading it over, I thought I would share it here. I found it amazing just how much I have learned in these few short months. Hopefully, I can continue to shed light on the ups and downs of living with an ileostomy. It's a little long, but my new friend was so happy to receive the support. It was my pleasure to pay it forward!

• Conversation started Wednesday
• 1/29, 4:43pm
  

  Ava 
  

  
  

  Hi. I saw your post on My Bag & I. Do you have a new ileostomy or colostomy? A little about me: I have a permanent ileostomy. I use a 2 piece appliance because I find it easier to be able to just change the bag part if necessary without having to remove the adhesive part from my skin. You definitely should try a few samples and determine what works best for you. I know plenty of ostomates who use a 1 piece.

  As far as your other questions, yes, you are considered as a person living with an ostomy. You could also say living with an ileostomy. It is important (at least for the first few months) to measure your stoma size with the measuring device they give you. Your stoma will definitely change size. It is most likely still swollen from the surgery. After a while, it will settle down and then you can possibly use pre-cut wafers to cut down on the change time. Right now, it's best if you cut them yourself.

  You should empty your bag as often as you find necessary. It is not dangerous to do so. It is probably more dangerous to not empty often as the weight of the bag can lead to leaks and also it will just be plain uncomfortable carrying around that excess weight around your mid-section. People usually use stoma caps if they have a colostomy and need to irrigate. If you have an ileo, there should be no need for one.

  I really like my ostomy belt (called the Phoenix belt) and Eakin seals that are placed around the stoma before you put on the wafer. It provides more of a tight seal. I can't live without these two products!

  The main thing I've learned is that wafers come in different sizes based upon the circumference of your stoma. I was ordering wafers that were way too large and thus taking up a lot of space on my abdomen. Upon my surgeon's suggestion, I found a much smaller discreet wafer and pouch.

  The most common problem that I have has been finding bottoms (pants and skirts) that don't cut off the flow from my stoma. I lean more toward elastic banded bottoms. I really love jeans though so admittedly sometimes I will just wear my jeans open with a long top to cover it up.

  I don't see a dietician but the dietician that was following me when I was being treated for Crohn's sent me a few worksheets that had foods you should avoid with an ileostomy like popcorn, corn on the cob, nuts, seeds, salads....but I do eat nuts and salads (in moderation, of course with a lot of fluids) Oh yeah, speaking of fluids, make sure you drink a lot. Let me repeat that: drink a lot! You can become easily dehydrated. Become BFF's with water, lol.

  Ok, if you have ANY other questions, feel free to reach out. I'm happy to help. Best wishes on a speedy recovery. You'll be feeling fabulous in no time!
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