Community Forums

Want to join the forums? Register HERE for instant access.

Already have an account? Login below:

Newbie here and overcame a big hurdle tonight...  

  RSS

Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
13/12/2017 6:55 pm  

Hi all! I'm Michelle and I had an emergency total colectomy and subsequent ileostomy two months ago due to an ulcerative colitis flare that just didn't respond to anything! Was only my second flare so think I'm still in a bit of shock to be honest.

Anyway, I think I overcame the hardest part tonight - talking to my kids about it. I have 11 and 8 year old girls and they have been dying to see my scar. They also knew there was something else apart from the scar, they're not silly :lol: I took the opportunity to get a bath and change my bag while they were at their grans and they happened to come home when I was bagless, and they both came bursting into the bathroom. 

I put my hand over my stoma while they ambushed my scar and gave it a good inspection and poke. My eldest girl asked me what was under my hand (youngest had lost interest by then and wandered off) and ended up showing her my stoma and my bag and having a brilliant chat with her. She knows I have Ulcerative colitis and I told her my poo didn't come out my bum anymore because the bad bit of my bowel was gone, and I pooed out my small bowel into the bag now, but look how healthy I was now! And look how convenient it is and how much time I'll save by not sitting on the toilet. Cue lots of questions about how I pass wind and she noted it doesn't smell as bad as normal poo. She then asked if anyone could get one and if she could have one! I think it helped that she has type 1 diabetes, and could relate to bits of your body not working and having contraptions attached to you!

I know this has been a long post but it's a huge weight off my shoulders that they know now (my youngest kept wandering in and out during this conversation, taking it in but rather uninterested lol) and I had to share with people who would get it! That's how I wanted them to find out to be honest, just naturally, oh look, it's there, it's not a bit deal, rather than a big sit down talk. It was a scary time for them when I was ill and in hospital, and we had to cancel going to Disney :-( so I just felt they had dealt with enough with out having to deal with this huge change too. 

Super proud mum tonight though! 


DngrsCrvs, Allison, Zvitusk and 4 people liked
ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 861
13/12/2017 7:06 pm  

Michelle, thanks for joining us and thank you so much for sharing this! I'm proud of you! 

I love how some kids can get so interested in our stoma (my kids were, too). That helps a lot. 

Make yourself at home here! 😀

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Michelle and Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Reputable Member
Joined:10 months  ago
Posts: 343
13/12/2017 7:18 pm  

Welcome Michelle,

Thanks for sharing that great story with your kids. 

Its so true that being sick like that is the really scary thing. SO many of us are happy and healthy now after getting rid of the bad bits! And, have fun at Disneyland when you get to go there. Your children sound wonderful and now you can enjoy them!

YES!!!

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


ReplyQuote
Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
13/12/2017 7:28 pm  

Thank you! That's exactly how I feel, I'm starting to get my energy back and I'm really enjoying being a mum now after being so tired for so long and then so ill! I'm of proud of me too.

Disney better watch out, it won't know what hit when we arrive! 

Absolutely though - YES!!


VeganOstomy and Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Reputable Member
Joined:10 months  ago
Posts: 343
13/12/2017 7:32 pm  

Life really is so much better once you turn that corner!

Is is so scary being sick for so long, and most of the time not knowing whats going on. I kept thinking when I was sick ( 3.5 years until I got my colectomy) that I didn't know WHAT I would do if I had young children to care for. Well, YOU know. Life going forward will be great.

I am very happy for you.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


ReplyQuote
Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
13/12/2017 7:37 pm  

Thank you again. I'm very lucky to have my amazing mum (who had treated us to Disney) and a great support network. It takes a village and all that. 

It's all relative though - I'm not sure I would have pushed through if it wasn't for them, I'd still be on a heap on the floor I think if they weren't looking up to me.

Looking forward to getting to know everyone! 


john68, VeganOstomy and Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Reputable Member
Joined:10 months  ago
Posts: 343
13/12/2017 7:44 pm  

It is essential to have someone who can scrape you up off the floor! I think we have all been there, literally. 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


ReplyQuote
VeganOstomy
(@veganostomy)
Admin
Joined:4 years  ago
Posts: 861
13/12/2017 10:07 pm  

Yes, I'm glad you had that support! I' looking forward to hearing all about your Disney experience 😉

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


Dona and Michelle liked
ReplyQuote
john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
14/12/2017 2:16 am  

Hi Michelle/Super proud Mum.

Welcome to the Forum, its so great to hear that you are getting on well, these early days are very important mind wise ie starting out with a positive attitude. Just think with the Holidays coming up and yer new health how much fun it will be. I wish you and all the very best and look forward to hearing a lot more form you. Yer not just Mum your the "Bionic Mum"

ileostomy 31st August 1994 for Crohns


ReplyQuote
Robert
(@njewell1)
Reputable Member
Joined:4 months  ago
Posts: 489
14/12/2017 1:07 pm  

Good Morning Michelle

Welcome to the group ! Sounds like you are doing really good with it all . Watch out Disney Land !

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


Dona, Michelle, Zvitusk and 1 people liked
ReplyQuote
Zvitusk
(@zvitusk)
Estimable Member
Joined:9 months  ago
Posts: 203
14/12/2017 2:43 pm  

Wow, you really are getting it together. Welcome aboard our friend'ship'. We are all going on a long cruise through the Sea of Ostomy. We hold hands when it gets rough and answer questions that we were afraid to ask. 

Glad to see that you are surrounded with a very supportive family. Helps a lot.  We have all type of personalities with one commonality. We have been there and done that,  and are willing to share and help.

Tell us about your self and your experiences,  so that we can get to know you better. (But only what you are comfortable with.)

See ya around.


Dona and Michelle liked
ReplyQuote
Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
14/12/2017 3:17 pm  

Thank you so much for all the lovely replies! 

I love the idea of being Bionic Mum.....I think I may only answer to that in future haha! 

In a nutshell, had UC for three years and only had one had flare before this one that responded well to steroids. Still felt so sluggish and had the odd bleed and spells of constipation/the runs before I started flaring again in September, was admitted to hospital for IV steroids which didn't touch it and got my emergency surgery on 10th October and was so so scared, my mum says now she thought I was dying and to be honest so did I, wanted to get everything in order incase I didn't make it through, or even to surgery! 

I'm a single parent and I study part time. I'm halfway through a biology degree that I thought I was going to have to give up for a while but powered through and submitted my last assignment of the year. Planning to go into teaching when I finish, and this hasn't changed my mind about that! 

The one thing I'm dying to do is put my trainers on, headphones in ears and go for a run - anyone have any tips? Waiting to speak to my stoma nurse for guidance, surgeon gave me the go ahead though! 


Zvitusk, VeganOstomy, Dona and 1 people liked
ReplyQuote
john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
14/12/2017 3:32 pm  

Hi Michelle, Well first good idea checking with the nurse, giving the pouch some support in the way of a wrap, band or Eric is a great fan of the stealth belt. give it a check out on the reviews. Take plenty of water or juice with you and what about Cyndi Lauper "Girls just wanta have fun" for the sound track! lol

ileostomy 31st August 1994 for Crohns


Robert, Zvitusk, Michelle and 2 people liked
ReplyQuote
FelicityG
(@felicityg)
Estimable Member
Joined:5 months  ago
Posts: 230
14/12/2017 4:40 pm  

For me it's been my poor mom. She cried when I got mine. I've since had proctocolectomy and been at my parents for daytime support. She's got an eyeful of me watching ostomy TV, I use clear bags and like to see that it's working ok. She walked in on a change. She's seen how much better I feel w it. Dad and I discuss it pretty unvarnished, benefits of him being a nurse.

Only kid in my life is Nephew has not seen but has a standing invite if he ever gets curious. He know I don't poop it fart out my butt anymore because of Crohn's. 

I am certain when I go camping I might have curious kids/ friends and am ready to approach it as appropriate. My friends are pretty aware thanks to Facebook. Shared some clean pictures of Oscar the Pouch before he dirtied the bags.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


Zvitusk, Michelle and Dona liked
ReplyQuote
Dona
 Dona
(@dona)
Reputable Member
Joined:10 months  ago
Posts: 343
14/12/2017 4:45 pm  

Michelle, it will be wonderful for you to get to run again! Wow, a milestone for sure and the 'road to recovery' too.

I have seen some inexpensive wraps on Amazon that are meant for pregnant women. I don't know if they would offer enough support, but maybe?

and have a blast.

For me it was swimming and walking...I really missed those things and recovered quickly when I could get back to it.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


Michelle liked
ReplyQuote
Michelle
(@michelle)
Active Member
Joined:2 months  ago
Posts: 13
14/12/2017 7:51 pm  

Thanks John68 and Dona for the suggestion of wraps, I will definitely look at some! I like having my bag close to my body and have some firm support underwear, just feels more secure.

 

Dona I never thought I'd say I miss exercise! But that was my escapism and I miss it so much, it's what I do. I think the weightlifting will have to be put on hold for a bit longer though! Really reassuring to hear you're back to swimming, I don't go often but like to go into the pool with my girls, so good to know that can be overcome! 

My mum found it difficult as well Felicity, at the end of the day we are still their babies and no one likes to see their babies in pain and ill. It's not that she can't accept it, it was more the emotional impact and she had to take over the role of mum to my children while watching her only child deteriorate. She is also a nurse though, so is able to discuss things no problem but I can see the strain it's put on her. I also stayed with my mum while I was recovering, home now though, even though still got a bit of recovery to do! You're so brave sharing it on Facebook as well, I'm not sure I'm at that stage yet! I have to watch who I share my health issues with as my ex partner would use them against me so can' t really document them publicly. Kids are so accepting as well, love how your nephew has just accepted that you don't poo out your bum, no questions asked and it is what it is! 


john68 liked
ReplyQuote
john68
(@john68)
Honorable Member
Joined:4 months  ago
Posts: 698
15/12/2017 2:49 am  

Hi Michelle, Check out the Post by Bubbles, "Inspirational Ostomy Peeps" Sharing that you have an ostomy is a personal choice, some times in certain places say work it may be necessary so your needs can be met etc, I can count on one hand the number of negative feelings I have had from any one that knows. You will find that people will be understanding and admire your courage.

ileostomy 31st August 1994 for Crohns


ReplyQuote
FelicityG
(@felicityg)
Estimable Member
Joined:5 months  ago
Posts: 230
15/12/2017 8:27 pm  

I'm pretty lucky my circle of friends, community and work is very supportive of folks with chronic illness. Lots of folks w various health problems. I left an art festival pretty sick and hated to not communicate what was happening to me. We thought I was having issues with the heat... 

Hopefully if you need to you can vent here. It's been incredibly helpful to have folks who get what is happening.

 

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


ReplyQuote
Barbara
(@msbjlee)
Reputable Member
Joined:3 months  ago
Posts: 275
15/12/2017 10:40 pm  

Michelle, a bit of a late welcome from me today. But. I'm so glad you found us.  It took me several months to get here. As everyone has said ... vent away and we'll all try to help.  I have learned more here than when in  hospital or rehab. Glad to hear about your super kids, and as Eric said, be sure to let us know about Disneyland!!

Severe rheumatoid arthritis, spondoloarthropy, poly myalgia, type 1 diabetic, IBS and finally, emergency diverticulitis surgery, colon removed Stella born Jan. 27, 2017. Enough already!!


Zvitusk liked
ReplyQuote
  
Working

Please Login or Register