Life after Ostomies

ostomy girl

By Sarah Sorge


I was diagnosed with Crohn’s Disease over 20 years ago and recently had surgery to remove my colon, so I now have a permanent ostomy.  It was an overwhelming process leading up to and even after the surgery.  There have been a lot of tears, anger and depression.  I had to go through the death and dying process of losing my colon and closing that chapter of my life.

Through this process I had to learn at great deal and most of it was by trial and error, lots of research and too any phone calls to count.  I did a lot of research leading up to my surgery, but it truly does not prepare you for the end results.


ostomy girl


List of Things to Know:

I have compiled a list of things that I have encountered that were not expected or just not thought of going into this chapter of my life. I hope this list will help you and others become better prepared for the aftermath of ostomy surgery.


1. Ask questions!

I keep a journal to write things down as they pop into my head.  I actually had my list with me to ask questions before I went into surgery.  I still have things pop up and wish I had asked before the surgery, such as:

  1. Where is the stoma going to be? (wish mine was a little lower)
  2. How long is the incision?
  3. Reliable contacts?
  4. How long is the actual healing process?
  5. Any special care for the rectum skin graft?
  6. 100’s of other questions

2. The manufacturers are going to be your new best friend until you find the right combination of appliances.

I had a hard time getting Stoma nurses to return my call and the surgeon and Gastro’s office were not as much help as I had hoped.

3. Get samples!

Call the manufacturer, Coloplast, MSC direct, etc. and ask for samples.  Tell them your issues and they will work with you until you find the right fit and before you order too much.

4. Do not order 3 month supply until you know what will work.

5. Once you get a good fit, be sure to ask the supplier what information they need.

They will need:

  •           Insurance
  •           Prescription sent to them from your doctor
  •           Payments information
  •           Physical address

I learned the hard way about this part.


6. Odds are that your bag will fail.

It’s ok; this is normal, frustrating, but normal.  Just breathe and move on.  It took 3 months until I finally found the right combination for me.  Again, thank goodness for the manufacturer reps.


7. Your skin will get irritated.

Since you are putting adhesive directly to your skin, and many times multiple layers and types, you skin will get irritated, blistered and peel off.  It does heal and becomes less sensitive.  There are products to help with the skin issues, just ask the manufacturer rep. I have noticed the skin under the bag is a different texture now and will still itch from time to time, but all in all I hardly notice it anymore and it’s only been 5 months.


8. Keep a change of clothes with you at all times.




I carry a backpack in the car and it includes:

  • 2 outfits
  • 2 pairs of underwear
  • Socks (learned that the hard way)
  • Wet wipes
  • Extra Ostomy bags
  • Stoma care items
  • Plastics bags (trash and dirty clothes)
  • Scissors
  • Paper towels


9. Clothes will fit differently.

Clothes are now hit or miss item.  Since the ostomy is typically just below your waist line, clothes make feel weird or just not look right anymore.  I looked at it as an excuse to go shopping.


10. The bag is really not that noticeable.

I was afraid that everyone could see my bag and it made me feel acquired at first, but in actuality, people don’t notice it at all.


11. Be sure to talk to and explain your situation to your children.

They understand way more than you think they do.


12. Your life is not over or limited by your bag.

I have not run across anything I cannot do because of the bag.  In fact it       is the opposite.  I am not in the restroom every 30 minutes and don’t have to find the restroom everywhere I go.  That’s been a nice change.


13. Sex is still sex.

I had/have more issues with the bag than my husband does.  I simply fold it over, so I cannot see the contents.  I have found a special line of covers and lingerie on line to help cover the bag for intimacy.


14. You can still bathe as usual.




I enjoy a hot bath at night and a shower in the morning.  I wasn’t able to take baths after my surgery because if incision issue and you should not soak in a tub until your wound is healed and if you have a complete removal, your rectum graft.   I also like to take my bag off and shower without it on.  I just enjoy the feeling of water on the skin under the bag.  It can get messy, so not recommended to do this in the bath tub.


15. Get organized.

There is nothing worse than trying to change your appliance and you can’t find the scissors.


16. Be open and honest

People are going to ask questions when they find out.  Answer them openly and honestly.  Educating people about your situation is a bonus for you and them.  It helps with understanding the situation and can even lead to options and outlets you never knew about.



I hope that you have found this article to be helpful.  I can go on and on, but I feel this is a good start.  Just remember you are not alone and there is help out there for every situation.


Smile and wave, makes them wonder what you are up to.

Battling Fatigue in Chronic Illness

2016-03-25 17.16.24

By Vanessa Blevins


2016-03-25 17.16.24

Chronic Illness can take many forms and will have varying impact on each patient, but one symptom that is commonly reported as severely debilitating is fatigue. You could have a condition that specifies fatigue such as Chronic Fatigue Syndrome or Fibromyalgia, or it could be a side effect of one of numerous medications; if you’re faced with chronic illness you’re probably facing crippling fatigue on a daily basis. So what can you do to help yourself stay active? For this article we’ve scoured the internet for every idea we could find to help you battle your fatigue.





We’ll start with the obvious. Your doctor has said it, your mother has said it, the random person in the checkout line at the grocery store has said it. You need to sleep. Well I know it’s not that easy and you know it’s not that easy but the kind-hearted well-meaning souls who say these things don’t always know it’s not that easy. Getting to sleep isn’t easy, staying asleep isn’t easy, and if you’re like me even when you do sleep you don’t get the restorative sleep you need to counteract fatigue. Where was I going with this? Ah yes, we were trying to get to sleep.


When a parent brings a new baby home from the hospital, (work with me here, I’m going somewhere) they read a lot of books about bedtimes. One of the most important universal tips across the board in all of the books is, they all tell you if you want to get your kid to go to bed without any trouble it is important to have a bedtime routine. Have a bath with some lavender scent, snuggle up with a quiet book, say goodnight prayers, everything in the same order, every night, so it teaches them that this is what they do when it is time to sleep. Once they’ve done all of the steps, the next obvious step is sleep.


You see where I’m going with this? Set yourself a bedtime routine. It doesn’t have to be a complete bubble bath with a novel and aromatherapy candles, but if you give yourself your own quiet time it might help you wind down a bit before bed. No matter how fatigued you feel, we both know your brain isn’t going to hush anytime soon, so steep yourself a mug of caffeine-free tea, turn off all the electronics, dim the lights, and snuggle up with your own relaxation tool. Listen to a song or two of your favorite musician or read a chapter of a good book. Take a few minutes to practice some meditation or breathing exercises. I know it sounds really silly, but I have a mobile in my room. It’s not a baby one for a nursery, it is actually a modern art piece, but I use it the same way that an infant would. When I just can’t for the life of me make my brain turn off, I’ll watch it’s slow rotation until I’m finally able to drift off into oblivion.


Golly I could write forever about trying to get to sleep. Herbal sleep aids, prescription medications, custom bedding, fancy mattresses, endless arrays of pillows, white noise machines, air purifiers, hypnosis, meditation, even overnight sleep studies and brain wave research. I could keep going, but that’s not my focus today so let’s move along now, shall we?


Conservation of Energy.

Also much easier said than done, I know. But there are sometimes options available, although a lot of these involve seriously coming to terms with your status as a disabled person. Every person who suffers from chronic illness is at a different stage in their journey, so this is a tough section to write. There is a very wide range of ages in our community, as well as significant diversity in the age of onset/diagnosis. I can only speak from personal experience but I know it took quite a bit for me to go out in public using a mobility assistance device at my age. I was in my early 30’s, very pregnant, and very self-conscious the first time I used my walker. Now I’m about to turn 35 and use my cane regularly. I’ve become much more confident about it in the past five years (if I do say so myself), but I have to admit that the looming prospect of a wheelchair still leaves me feeling pale and somewhat dizzy. But then again, so does the fatigue.


I use myself as an example, mostly because I know me and I have permission to share my story, but also because I know that others feel the same trepidations that I felt in the past and that I’m feeling now, and I want you to know it’s OK to feel that way. I also want you to know that it is 100% completely and totally OK for you to use whatever mobility assistance device(s) you and your doctor deem necessary for your well-being! If using a walker or a wheelchair helps alleviate your fatigue so that you can keep living how you want to and keep doing the things you love, that is a blessing! Don’t let negative thoughts tell you that you’re failing. Use the tools at your disposal with pride, it means you’re taking charge of your chronic illness and fatigue!


Vanessa grey


If your fatigue is so bad that even a mobility device won’t help you get out and about, don’t feel guilty if you have to cancel plans. Even people who don’t have chronic illness have to take a rain check now and then, it’s alright if you do, too. It’s often hard not to feel guilty when our health gets in the way of something we wanted to do, but we have to remember that this illness isn’t a choice. And while we are remembering things, I’ll take this opportunity to bring up the last thing you went to, do you remember? You told someone, “Next time I decide I’m going to push myself when I shouldn’t, remind me how I feel right now.” Well this is me, reminding you!



Vitamins, Supplements, & Energy Drinks.

Just as with sleep aids, there are any number of over-the-counter and prescription options available that could provide some relief from the constant strain of fatigue in a life already plagued with chronic illness. Some patients find relief from fatigue in the form of herbal supplements and other products. There are too many to even begin to list them here, from energy drinks and pills that are readily available at the corner store, to custom vitamin blends and powders designed by boutique nutritionist shoppes for a hefty commission, to pharmaceuticals available by prescription only. There is a multi-billion dollar market aimed at consumers who are desperate for a little pep in their step. Now, I do partake of the occasional energy drink, but I get nervous about adding vitamins and whatnot due to my unfortunate experiences with drug interactions, so I usually talk to my doctor if I think about anything stronger than a Red Bull. I’ve read great things about managing fatigue with prescription medications, but I’m not at a point where I’m considering that step for myself. The point here is, your doctor or pharmacist is a good place to start if you’re looking for advice about adding a supplement.




(I almost heard you groan, but I couldn’t because mine was louder.) I’ve read quite a few great things about regular exercise helping with fatigue. My personal experience has been less than stellar, but I’ve never been all that athletic in the first place so I may not be the best case study. For more information on whether or not exercise can help you with your fatigue, consult your doctor or a physical therapist for an evaluation. Don’t go to a normal gym! Most of them do not have staff who are trained in working with people who have physical limitations, and they are trained to push their clients well beyond their limits. That is not a safe environment for those of us with fatigue and other ailments. Please, I beg of you, if you do choose to go the route of exercise induced endorphin highs, do so in a safe environment, in a responsible manner, with properly trained professionals ready and able to help. And may the spoons be ever in your favor! (That’s a little “Spoonie”/Hunger Games joke from our support group.)


vanessa pic


Keep Hoping. Keep Dreaming. Keep Innovating.

Whether you are new to your diagnosis and the fatigue that comes with it, or you’ve been around the dance floor a few times together, there are medical and scientific advancements being made every day. Technology is progressing at a pace that I can honestly say is starting to make me dizzy. We never know what could be around the corner, and with the way social networking is these days, you never know if a solution you think up could be turned into a reality! Much love and hugs and spoons!