gut-wrenching truth about crohns

Living with Crohn's!

Something in the air?!?

I feel like a lot of my IBD friends are having issues this week, including myself. 

One of them is in the hospital for a flare- in which she hasn’t had a flare in a long time. 

Another is in the hospital and might need surgery, again. She’s in the hospital every 4 months it seems. Her body can’t find homeostasis. They might be bumping up her surgery from a few months from now to really soon.

Another friend is suppose to have a reversal surgery next week- but she went for a scope yesterday only to learn that the Drs want to wait– she needs to be put on a medicine that she was on before surgery but the Drs told her to stop taking but now want her back on. Completely heart breaking as she had her heart set on the reversal. 

And I am having mysterious stomach pain. It’s sharp and I am having output still. No nausea or vomiting. But the pain is sharp. Today is day 2 of this pain. I hope it’s not a flare. Boo.

What is in the air that is making having IBD difficult this week? 

Thanks for reading! 🙂 

*photo compliments of google image search 


OstoMY Covers! 

OstoMY Expressions

I am making custom made OstoMY covers! Check out my Facebook page: OstoMY Expressions
Check out my work! I have lots of fun fabrics!
Thanks! 🙂

Return of the C word

Cancer. My grandma’s breast cancer has returned. This time in her other breast. She’s in denial about it and refuses to proceed with treatment at this time. I understand her reasons but at the same time it’s hard to hear. She just found out this week so she still has time to change her mind. 

I need to make a conscious effort to spend more time with her. I went to see her today and she is such a spit fire- I love it! Someone called her the other day in regards to surveying people about who they were going to vote for in the election and she told the person on the phone it was none of their business with a few other choice words lol. 

If it wasn’t for my grandma I wouldn’t have been able to earn my doctorate. She helped me with my loans so I could earn my degree. I will forever be thankful to her! She’s helped me in so many ways. I don’t want to waste the precious time I have with left with her. As I am older now, I appreciate her more and laugh with her over adult humor because that’s just the way we are. The more I learn about her, the more I realize how much my father takes after her. Neither one of them is overly affectionate, but they have huge hearts and their own way of showing you they love you., 

She really has a huge heart. I know that me having crohns is hard for her. It was really hard for her to adjust to my dietary restrictions for a while. She shows her love through her cooking. I sure do miss her sugar cut out Christmas Cookies! The rest of the family is probably glad that I can’t eat them because I ate 80% of them, lol. Grandma did adjust to dietary restrictions; she makes me applesauce now. She also took to my Ostomy surgery well. She’s happy to see me feeling better. She always ask how o feel every time I see her now. And prior to surgery she always reassured me that surgery would help. And my disease is something we really never talked about. I love her. 

I treat my dog Suzie like my child. She’s my fur baby. And my grandma also treats her family. She tells Sue that she is her baby and tells her girlfriends about “her doggie” to the point if she’s on the phone and we come over she’s got to go because her doggie is here- not her grand-daughter. Hahaha! 


Spend time with your loved ones. Say I love you. Hug them. Time is precious! 

Thanks for reading! 🙂

* first photo compliments of google image search 

Showering naked with an ostomy 

Initially when I got my ostomy- I had to sponge bathe because of my wound vac and drain. Once the drain and wound vac were removed I could shower. At first- I kept my bag on but covered it with clear wrap but the bag sti got wet. Coloplast bags seemed to repel water better than hollister bags. I had to blow dry hollister bags after a shower. Either way, I still had to wash under the clear wrap after the shower. Showering became a lot of work.

Today I did something I consider courageous- I showered naked without my bag! It was glorious just like the good old days, lol! But it was so nice to just have all my skin clean. I love being clean! There is a fear that your stoma will dump poop in the shower- but your in the shower so you can just keep cleaning up! I didn’t have that problem today. I am sure I will at some point. But I am def going to keep showering without my bag, it’s freeing! Whoo!

How do you shower with your ostomy?

Thanks for reading! 🙂

*image compliments google image search

Fun with my ostomy! Say what?!?!

My surgeon has written a script for me to use a two- piece ostomy system by hollister with a clear bag. I am not a fan of the clear bag because I don’t want to look at poop as I am sure neither does the anyone else whom I may come in contact with. The only thing I do like about the clear bags is seeing the stoma. I like to double check it’s looking healthy. I have named my Stoma, Stomie. So I like to check on Stomie from time to time! 

With that said, I have been searching the Internet for ways to jazz up Stomie’s bag. I found a way to creatively add duct tape to the bag and leave the opening so I can see Stomie. Others may choose to cover the flange. It’s all personal preference. Credit to the idea goes Sierra Boring- she posted the idea on a Facebook support group. Thank you Sierra! 

(My first bag I covered with duct tape) 

The only thing I don’t like about covering the bag with duct tape is it makes the bag more rigid and it is just wierd wo me when emptying it. Not really that big a deal. You must be very careful not to cut the bag! I accidentally did today and I didn’t know it until I was emptying my bag and poop seeped out! Yikes! 

After the poop leaked out from the hole I accidentally cut in it decorating it, I thought I will try and make a fabric cover for it. I have  house warming party to attend tomorrow and a cover would be nice to wear. So I googled how to make one, bought the material, and hand stitched one to trial as my first one! (Shout out to my mom who supports everything I do and instill confidence in me! I love you mom!) 

(My first ostomy cover I made!- not bad considering I hand stitched it and I rushed it because I was tired.) 

Cheers to new crafting adventures for ostomy accessories! Bringing fashion and fun to ostomies! 

Thanks for reading! 🙂


I had my ostomy surgery 3 weeks ago today. I am happy to report that I am doing well. I am sore and get tired easily with simple tasks, but I am getting stronger everyday! I still have an open wound on my bottom that my home nurse comes and treats 3 times a week. I just got my wound supplies today to pack it with aquagel (a silver dressing) to promote healing! Hooray!

I am still getting used to having my ostomy. My biggest issue is that I want it to be discrete when I am out in public. I have been out running errands with my mom a few times to get back into a routine of things, get things I need, move around, etc.

One of the things I use to help keep my bag discrete under my clothes is a bandeau tube top bra over the top of my bag. It works pretty well and it’s affordable. (Click here to check them out Bandeau bra)

Also, to increase my overall confidence in public I need to feel good about the rest of myself. If I feel good about the rest of me- I will forget I have a bag or at least minimize its effect on my confidence. My mom knows this and she took my to get my a manicure and pedicure last week. This made me happy and I definitely felt more confident in myself after I had my nails painted . I love getting my nails done but I also love bonding with my mom! Double bonus! My best friend also got me a birch box subscription (5 beauty samples a month) for my birthday and I love it! I feel like “old me” when I would take pride in my looks and take the time to take care of my skin and do my make-up on a regular basis. So I love trialling these new samples and taking care of my skin again.  Looking good and putting in effort in my make-up and clothing choices makes me feel confident and almost forgot about my bag. As my confidence grows with everything else, I will only get more confident with myself and my bag. It’s all about feeling good about yourself – so do things that make you happy and take care of yourself in all aspects. During my recovery time I also want to complete more meditation to have a more sound mind as well. Right now I have found adult coloring to be relaxing and soothing which really helps in the healing process.

Looking to build confidence as well?

  • Find what makes you happy.  Add it to your daily schedule-even if just for a few minutes. (As weeks go on you can add more time for “happy” activities as your schedule allows.
  • Take pride in yourself because you are worth it!
  • Complete self-care to build confidence in yourself! You rock and you deserve it!

Thanks for reading! 🙂

*photo compliments of Google image search

Adjusting to life with an ostomy 

 *me getting used to my ostomy*

I am two weeks post colostomy surgery now. I have had my wound vac, jp drain from abdomen, and stitches removed from my bottom (rectum and anus removed). It’s so freeing to be rid of the jp drain!! Whoo! But the wound on my bottom now requires nursing to come daily to change the dressing and my nurse sees me first thing in the morning- so no sleeping in for now. Bummer!  :/ but she is going to change the order to every other day with an aqueous dressing (I think that’s what she told me today). The wound is about 10 cm long and maybe 3 cm deep. I also complete sitz bath to help keep the wound clean. I love sitz baths they are my new favorite thing since I can’t take an actual bath yet.

I am still getting used to changing my ostomy bag. I am getting quicker at it the more I practice, but the more I eat the more time I spending changing my bag. At times I get frustrated that I feel like all I do is eat, sleep and change my bag. But life prior was eat, sleep, and poop so it’s really no different except I am in a lot less pain and I am not crapping my pants! WIN!

I have as noticed that I have consistent BMs after breakfast and at night while I am sleeping. I was told with a colostomy I would develop a pattern of when I would go. This may or may not be my pattern- it may be too early to tell.

The surgical pain is getting better everyday. My physical endurance has definitely taken a hit. If I walk 2/3 mile – my ass is kicked for the next day or so. So I am going to try to reduce that to 1/2 a mile and see if that manageable because 1/3 I can tolerate fine. I walk every other day right now. If my body is too tired, I listen, and skip a day. 

My mom is changing my wafer and my bag still. That is okay! (As the saying goes, Rome wasn’t built in a day)  But next week my nurse is going to have me do it. I think I am ready for the challenge. I have already transitioned to preparing the sitz bath for myself and Saran wrapping my bag for the shower myself as well! #adultingwithanostomy lol

It’s the little things that show progress.

In the mean time, reality TV and adult coloring have kept me occupied!

Until next time.  🙂 
Thanks for reading! 🙂

*Image compliments of google image search

Ostomy surgery 

I had my ostomy surgery. I was in the hospital for a total of 5 days! Everything went well and I had my wound vac and stitches removed one week after surgery. The wound vac removal didn’t hurt. The stitches removal hurt some but it was bearable. I was adviced to take my pain meds 1 hour prior to my appointment to help decrease the pain and that DID help! 🙂  All that I have left is jp tube to drain extra fluid from my abdomen. That gets removed this week! 🙂 

I was in surgery for 7.5 hrs and the surgeon was almost able to complete the entire surgery laparoscopically until the end when he found adhesions and had to go in by hand. He went over my old scar from my previous bowel resection in 2008. The scar looks amazing, like a pink pencil line, because I had a wound vac for a week to help with the healing. 

My bladder is still recovering from surgery and having a catheter for 3 days. I think it spasms and causes me to have to go but not empty all the way. In time, it will function again normally. 

The pain from the ostomy surgery and “Barbie butt” surgery (removal of rectum and anus) isn’t terrible. But I think I have decreased sensation in my rear – so I think the pain in my rear probably should be much worse there than I actually feel. But my surgical pain overall is well managed by pain medications. 

Right after surgery in the recovery room I was loopy and in pain and I let everyone know it! Lol. I kept yelling “OW” and “help me” and “nurse” lol. I was obnoxious until I gained more control of my emotions. Once I got into my room I played a prank on my nurse and said “ow you are hurting me” when he was untangling all my cords and not even touching me. He had a good sense of humor and we joked a lot during my hospital stay! He also took the time to tell me the importance of walking for my recovery process! Patient education is very important as I was not told I needed to walk my first vowel surgery. It’s now protocol for bowel surgery! 

To be discharged I had to have a bowel movement, pee without a catheter (and walk to the bathroom), demonstrate that I could empty my bag by myself, tolerate my normal diet (low fiber, low sugar and low residue) and have my pain managed by oral meds. 

Discharge on a Sunday was a little chaotic. My surgeons associate was the doctor who discharged me along with like 5 of his residents. The ostomy nurse and discharge planner weren’t working on Sunday either. So I didn’t know when I was getting my starter kit from hollister- the brand of ostomy supplies the hospital uses. The nurse said she would get me a belt but since she wasn’t there for discharge I didn’t get one. Things just felt very disorganized. I also didn’t know if my home nursing was set up- but my surgeon said they would come on Monday. 

It probably would have been better to be discharged on Monday- but the doctors were pretty adimit on discharging me last Sunday. It was nice to come home and be with my family and fur babies and get some much needed rest, because I wasn’t getting much sleep in the hospital. 

Thanks for reading! 🙂 

*photo compliments of google image search * 

Prednisone ruins skin 

Prednisone is ruining skin. My skin is all broken. I got 100 mg of prednisone during surgery and am on 60 mg currently. After surgery I was picking at my skin (I know a bad thing) but I believe I was doing it as a result of anxiety! Anyways, my skin reacted with super inflammation. Take a look:,

Any ideas on how to heal this fast? 
Please let me know! 

Thanks for reading! 🙂 

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Dylan B. Nelson

Live life to the fullest! CoFounder @MEDI+SWARM Living with Crohn's Disease, Avascular Necrosis, Enteropathic Arthritis and an Atrial Septal Defect

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