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gut-wrenching truth about crohns

Living with Crohn's!

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

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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! 🙂

Confidence 


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! 🙂 

The good, bad, and ugly 

  

Ugly- The day after surgery was an emotional day. I ugly cried and could not hold a conversation without crying without my anti-anxiety medication. I needed it to keep my emotions in check. I couldn’t control the crying and it had nothing to do with pain or body image. It was purely an emotional imbalance. Thank GOD mymom was   there with me to realize I never got my Paxil yet. 

Bad– I then realized did I not receive Paxil but I didn’t get my prednisone either. The nurse told me I should be talking to the doctor about this. I felt like she thought I didn’t inform the doctor of my medications when I know I did. Tears flowing again because I know my body will go into shock without prednisone. The anesthesiologist told me I will need to be on the steroids after surgery to wean off them, not for treatment of the Crohn’s but because I was currently depended on them. You also need to wean off steroids and not stop them cold turkey or your body could go into shock. A fun fact, the anesthesiologist also has Crohn’s. 

Prior to that – the aide was giving me a look like I was inconveniencing her when I rang the call bell. I just had major surgery- show some compassion! I wasn’t asking ridiculous requests- just things like I need more pain meds or my vacuum pump battery is dying. Then there is a resident/ intern who is timid and doesn’t acknowledge that I tell him I still have a significant amount of pain with the pain pump. Keep in mind his bed side manner was not great and I am highly emotional.  

The Good–  I have great nurses at night and during the day. My night nurse is comical and excellent at patient education. He explained the importance of walking after surgery- something I didn’t do the as often as I should the first time I had my bowel respected. I took my first walk yesterday! It was somewhat painful but I completed it and that’s all that matters. Today I took two walks. Friends and family came to visit today which made the day go faster. I finally slept a few hrs last night! Things are looking good- just need my bowel to wake up! Which means I need to pass gas lol! 

Thanks for reading! 🙂 

*photo compliments of google image search 

The night before surgery 

Now that I have downed the nasty 3 bottles of prep and the antibiotics the hard part is over… For now. My stomach is cramping a ton and I am sure my nerves are on overflow. 

I have just packed by bags and you would think I am going on vacation to the Bahamas for a week. But a girl needs to be clean and have options for clothes! I need options! 

But tonight is the last night I poop from my butt! Whoo! That’s good bc it’s sore! Lol 

I wanted to share a few pictures of me pre-surgery. 

   
Prednisone face= moon face 

Thinning hair     
Weird bumps/rashes 


Ultra thin     
 

Last time my belly will look like this! 

But I am a fighter and this is just a new beginning! 🙂

Thanks for reading! 🙂

Long term side effect of prednisone 

  
Yep- you saw that right! My hands tremor from long term use of prednisone! I hate this drug, even tho it has saved my life several times! I need surgery desperately to get off this medication because it’s currently not doing anything because I have strictures. 

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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