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19 days with a temporary ileostomy, looking for support!  

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Shay10.6
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October 25, 2020 5:48 pm  

Hello fellow VeganOstomy forum members!

I am Shay and I have had Ulcerative Colitis for the past 12 years, I'm now 23. I had my colon taken out on October 6 and now have a temporary ileostomy.

I know I have only had my bag for 19 days, but I have been loving my life lately because I am not constantly in pain, running back and forth to the bathroom, and am no longer miserable, something I haven't experienced since I got sick as a child.

No one in my family has IBD so its been a somewhat isolating experience. I also spent the entirety of my teenage years at home or in the hospitals and didn't get to finish high school so I don't have any friends to talk to. I know there are many people in Canada and my area(Hamilton) who have ostomies and IBD, I just haven't met any, so I figured I would join this forum to hopefully connect with people who have had ostomies for longer than I have and can hopefully give me some advice!


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john68
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October 25, 2020 6:29 pm  

Hi Shay, Welcome to the forum. It’s really pleasing to hear you are feeling the benefit of your surgery. I had my stoma when I was 25. Life has been good and I look on it as my saviour. We are always learning and tips and advice from the members coupled with VO info is a gift. You may have missed out on some stuff but with your age and attitude lots of good things are ahead. Stay tuned folks we’ll be right back 😀👍

ileostomy 31st August 1994 for Crohns


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Shay10.6
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October 25, 2020 7:05 pm  

@john68 I am so grateful for Winnie(my stoma). My quality of life wasn't that great before and it is so much better now and for that I am grateful. People keep telling me how young I am and that I have so much more life to live, but I've never really felt that way. I have always felt much older than my age which I think is due to the fact that getting sick at 11 meant that I had to face make decisions that the average 11 year old may not have to make. At the age of 11 I was faced with the reality that we are all going to die someday and unfortunately being young doesn't mean that you will escape death. I went from a carefree child to what felt like a serious, pessimistic, and bitter adult housed in a child's body virtually overnight.  Now that I am in a better place health wise, mentally, emotionally, and physically, I am going to try to enjoy life more and try to get back to the happy, carefree(within reason, I am still an adult with bills and a job), and positive person I was before I got sick. I know my life is going to get better from here!


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Lynne
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October 25, 2020 8:59 pm  

@shay10-6 Hi Shay and welcome!  Sounds like you are now in a very good place physically and mentally.  I love your attitude and am sure you are right that your life is heading in a great direction.  I said good-bye to my colon (due to UC) when I was 23 and 3 decades later have led a full life with travel, marathons, hiking, and all the normal everyday things one can sometimes take for granted.  You mention temporary .. are you planning to have a jpouch or stick with your ileo permanently?  Either way, good luck and don't hesitate to ask any questions!


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VeganOstomy
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October 25, 2020 9:51 pm  

Welcome to the forum, Shay!

I can't relate to being a teen with IBD, since I was 28 at the time of my diagnosis 12 years ago, but I can say that having an ostomy changed my life for the better and I'm so glad that you've already experienced how positive things can be. 

Please, feel free to ask any questions and make yourself at home here. I'm sure that once things settle down with COVID, you'll be able to connect with others at a local IBD event or meeting. 😀

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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glenn.giroir
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October 25, 2020 11:22 pm  

Hi Shay.  I can relate to a lot of what you say.  I was not as young as you when diagnosed (I was 25), but I lived with moderate to severe Ulcerative Colitis for 26 years.  I also do not know anyone personally with ulcerative colitis, so I have felt the isolation you have felt.  I had surgery almost a year ago because my colon was pretty much useless, and I was developing pre-cancerous cells (dysplasia) in the lining of my colon.  I chose to have have a permanent ileostomy instead of a J-pouch quite simply because I was just done with all of it.  I wanted the best chance of never dealing with inflammation down there again.  While I can say that sometimes it is very annoying to have adhesives stuck to my abdomen always, my overall experience has been very positive.  The best thing to me is regaining some control of my life after years of living with up to 20+ bathroom visits a day.  I forgot what it was like to have control like I have now.  Also, I used to have severe joint issues associated with my flares.  Some days I could barely walk.  Those have thus far resolved after my surgery.  I have no regrets.  And, I am so much healthier now.  Good luck with everything, and welcome!  

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Shay10.6
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October 26, 2020 9:49 am  

@lynne My GI surgeon said that my stoma would be temporary, I go see him in January when we will discuss scheduling my reconnection. However, I'm not sure I want to get reconnected so soon because I am in love with the freedom that my stoma has given me. Aside from when I empty the bag, I forget its even there! I also start school in May to become an RPN and I don't want to risk not feeling well or having issues with the pouch during my program that will require me to miss school. I am now considering keeping the bag for the next couple years until I finish my program! If I don't like my quality of life with the pouch, I am definitely going to get a permanent ileostomy!

 


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Shay10.6
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October 26, 2020 1:26 pm  

@veganostomy I am already experiencing a better quality of life with my ostomy, so much so that I am reconsidering the whole idea of getting a j-pouch. I am really hopeful that post COVID I can meet up with fellow ostomates and people who have IBD in person. 

I am sure you hear this often, but thank you so much for your blog! Even before I got my ostomy, I spent hours on your blog reading up on the topic and have learnt so much. I think part of me having such a great experience with my ostomy so far is because I was hella prepared, thanks to you! 


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Shay10.6
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October 26, 2020 1:40 pm  

@glenn-giroir The joint issues for me were nearly as bad as constantly being in the bathroom. 2 years after I got diagnosed with UC I got diagnosed with Ankylosing spondylitis, arthritis in my spine. Like you, I had days where I literally could not walk, and sometimes no amount of Dilaudid or codeine would help, I just had to wait until my legs decided to work again. 

 

Having control of my life again has been great but also somewhat difficult and overwhelming. Before I has my ileostomy, I would be in the bathroom in pain or in my bed in pain so I had very little time and energy to do stuff. I forgot what I liked and what activities brought me joy because I rarely had time or energy to do any of them. Fast forward to now, I feel like I have to get to know myself again. i have all this time and energy and besides reading, I have very little idea of hobbies I actually like. It's a little overwhelming. 

I have also been feeling somewhat guilty for days when I decide to not do much other than stay in bed and read(reading is something that I have loved to do since I was a child, and I am so glad I could still read while I was super sick. It gave me a place to go when I couldn't go anywhere.) I feel guilty for not doing much now that I have been blessed with all this energy. A part of me feels like I should be being productive every second of the day since there was over a decade when I couldn't do that. I'm not sure if that sound weird. Have you or anyone else ever felt that way?


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Dona
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October 26, 2020 1:52 pm  

Welcome Shay,

I am really happy to hear you have had a great outcome after so many years of suffering. 

I also adjusted well and it was so amazing to get my life back. You are young and will have many opportunities ahead so enjoy them.

 You can now make choices based on quality of life, health and happiness. KEEP READING!!!  ( not a selfish activity by any means).

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


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glenn.giroir
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October 26, 2020 7:49 pm  

@shay10-6

Hi Shay.  This is a very interesting thought (feeling guilty).  Thanks for bringing it up.  I do know what you mean.  For me, the one positive thing about my illness is that when I was flaring, there was absolutely no doubt that I was not going to function, so I was very kind to myself when it came to taking it easy.  I'm pretty tough on myself naturally, so to have the times when I knew without any doubt that I had to give myself permission to do nothing - those times were therapeutic mentally even though I was very ill physically.  It's going on 10 months since my surgery, and I haven't had any symptoms at all.  So, yes.  It's kind of strange.  It's kind of like those of us who have had illness for so many years don't really know what to do when it gets better.  I mean, I was really sick for a really long time.  I worked through my illness, even many flares, but I was very kind to myself.  Now, it is a bit of an adjustment for how much I am supposed to be doing.  Strange thing.  

Also, I'm learning to deal with a healthy digestive system for the first time in 26 years.  I was so up-and-down before, because  I could lose a lot of weight in a flare.  Then I would work to get weight back on, only to lose it again.  It's a very interesting thing trying to find my happy place with food since my surgery.  I can digest food now and get nutrients from food now.  What a concept.  Most of my friends who did not even know I had UC say that I look so much better now.  I just need to be careful, because weight wants to come on a lot easier now.  I stay active and eat healthy, but I did have to cut back on what and how much I can eat.  Again, I can't remember the last time I had a healthy relationship with eating and not worrying about my gut exploding.  

As far as the decision about the J-pouch.  Sometimes I wonder if I made the right choice because there is no going back for me.  I had everything removed in one surgery.  I'm 52, so I didn't want to mess around, I guess.  I just wanted the best chance at resolution of a problem so I could get on with life.  So, no option for reconnection at all.  But it was an informed decision that I feel was ultimately the right one for me.  I honestly like my stoma and the life it has given me.  You have options, and that is a great thing.  Take your time and talk to people.  

You've given us some really good things to think about.  Thank you!        

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)

Doing what it takes to enjoy life to its fullest.


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Shay10.6
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October 27, 2020 10:56 am  

@dona Thank you for your kind words. Deep down I know I am young and have a lot of life ahead of me to live; I think having to deal with everything that comes along with being sick from such a young age has made me feel much older than I am. I haven't stopped reading and I don't intend to anytime soon! Thanks again!


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iebrowne
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October 27, 2020 7:04 pm  

@shay10-6

Hi Shay,

I just wanted to add to some of the other positive comments.

I was 16 years old when I had my Ileostomy surgery, in Belfast, Northern Ireland.

That was over 50 years ago and I am still going strong, having the Ostomy has not stopped me from getting on with my life.

 I got married, had two children and now have three granddaughters.

Keep reading for more information and support.

Irene.


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SqueakyandLiza
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October 29, 2020 2:07 am  

Hi Shay and welcome to our little ostomate family here. We may all have different journeys which brought us here, but we all know the feelings of isolation and the struggles of life with an ostomy, whether the struggles leading up to getting the ostomy or the struggles of adjusting to life with an ostomy. 

I am always amazed at the knowledge and helpful nature of the members here as well as the kindness and support offered. If you have any questions or come across things you are struggling with, post a message and you will get responses. 🙂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Shay10.6
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October 29, 2020 10:02 am  

@squeakyandliza I am realizing that this really is a community. People seem so open and eager to help others which is nice to see. I definitely will come here with any more questions I have!


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Shay10.6
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October 29, 2020 10:06 am  

@iebrowne It sounds like you have lived a very full live with your ostomy which is amazing! I am definitely loving the freedom from pain and having to constantly be by a bathroom that my ostomy has given me so far.


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LK
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October 31, 2020 9:24 pm  

@shay10-6....welcome to VO! I'm so glad you found us. But I am sorry you have gone thru so much to get here.  At any rate, you have a good outcome and positive attitude just by coming here & seeking support.

Like you, I was a young child living a life no one else ever let on about. I remember being 10 yrs old & dealing with everything that comes with IBD & no one to talk to about it. You were lucky to have had a diagnoses at a younger age.  There is so much known now about it then ever. I totally understand your point of being a child dealing with adult issues & decisions & feeling much older then you actually were/are. I put so many restrictions on myself because of my awful guts, that I missed out on a lot of fun kids my age were having, right up until I got married actually.  As a kid, no matter what I told my folks about how I felt & what's going on the gathered opinion was..." well it's over now, your better, so go play now! Not once was I taken to a doctor about my guts. My first flare as a newly wed at age 22 was a surprise to me when my hubby argued that this was not normal & no, everybody does not get this amount of pain on eating & guts moving! He insisted I tell my new doctor & ofcourse that was the road to my eventual Ostomy  when I was about 51 yrs old. My guts are wierd tho & because not all the symptoms were text book, It was often rudely suggested I go home & to make a long story short, sex would solve all my problems. I was after all an attention seeker one Gastroguy said as well! After that, my sweet hubby joined me at apts & insisted that I get as many opinions as needed to find out what is going on. In 96 I was given an complete colectomy Ileorectal anastomosis & J-Pouch which took care of a fair deal of my issues until it started to fail in 2006 I think, then my ileostomy in 2009. If I knew what I know now, I would have gone straight to the Ileostomy & skipped the JP altogether.

My life has been so improved with my ostomy then I ever remember it being. Then, on top of the ostomy accidentally finding Eric's site here at VO.  Everyone has been so kind & helpful it was like dealing with culture shock! lol! 

If you need time to lay back, rest, heal & get to know yourself as a new ostomate & healthier person, you just take all the time you need until your secure & confident  in how you feel. Reading is good, but if you enjoy crafts, do that too. Theres lots available you can do while resting. I do counted cross stitch, crocheting, sewing, painting, I'm learning to make cards too & and numerous other crafts. I like to try anything I can get my hands on & am presently trying to learn quilting! 

Tho I'm 62, widowed 11 yrs,    my health still throws me a curve ball here & there, but I no longer deal with the horrid bowel pain, burning runs, and exhaustion of the sort I did before my stoma!  I love my stoma!!! My life is controllable, & I can do & even eat so much more then before it. 

No question is a dumb question here, no feeling or need of support stupid. You are so welcome to join our group. Do not be a stranger here.  It won't be long before your the one reaching out to newbies, sharing & encouraging someone else. I like to say right about here, you've got this in the bag! lol! Hang in there & be well! 

Linda


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Shay10.6
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October 31, 2020 9:57 pm  

@dlkfiretruck Thank you so much Linda for your response. I have been wanting to try sewing or painting for years now but never got around to it.

Sometimes I feel like I have to make up for lost time and feel like excessive time(anything over 3 hours a week) spent on anything other than learning French to become bilingual(something I would have done if I stayed in school) and getting a head start of studying before I start nursing school is time wasted. People tell me I am young but often times, all I can think about are the twelve years of my life that were taken by my UC. I feel like I don't have time to just have fun and live in the moment, I don't even know how to do that anymore. I feel like I am running out of time.

My career goal is to be a RN in a paediatric ICU and if my health doesn't take another dive for the worst, I will be 28 by the time I accomplish my goal. I am sure to older people 28 seems young, but to me being 23, and feeling more like 33, i freaks me out that I will be starting an entry level job at 28! I feel like I should have already done that by now. I also want to eventually have a family which will consume more time. Sometimes I think, if i "waste" time now by having fun it is going to delay my career goal. And in my mind, I feel like it would be better to focus on establishing a career before having fun. 

 

A part of me deep down yearns to be like other twenty something year olds around my age and is able to just focus on enjoying my youth and having fun, but I literally have no idea how. I feel like having to make such serious decisions at such a young age killed the fun loving person I used to be. I am trying to become that person again, but it is really hard. 

 

I apologize for dumping my personal struggles on you, its just I have never been able to talk to anyone(virtually or in person) who has even the slightest ability to relate to all of the struggles that come along with being sick with IBD especially as a child, physical, mental, and emotional.   

Thanks, Linda!


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LK
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November 1, 2020 10:20 pm  

@shay10-6....I totally understand what your saying!! While everyone else is going places & doing fun things, I was at home crocheting Afghans & doilies & embroidering pillowcases! lol! At 13 I could bake up a storm eventually earning the title Pie Queen! When my friends & sisters planned something my first thought was always, how far from the bathroom are we going to be??  I remember well how disastrous the day when I threw caution to the wind & went fishing with my Dad, something I loved doing on the yaught, which had a rather nice little washroom onboard, but oh my, on the ocean in a dinghy!! Not  a great decission on my part & I was 17 at that point, I should have known better! lol!! UGH, Imagine that one!! lol! As a young adult, I'm sure you know, dating was another issue! I worried about marriage, sex, childbirth, yes, in that order, keeping up with babies becoming toddlers becoming little kids...teens, so much had to be taken into consideration yet I  was determined to meet my goals too. Having children is certainly doable. My cousin was one of the first to give natural birth with an Ostomy!! She went on to have two more kids. She had Crohns as a child, but was at least diagnosed. That diagnosis made the difference for her. We live in different Provinces so I never really knew her. But I got thru it, we can become very creative when we have to. 

Shay, your  goals are fabulous!!  I nursed in Geriatrics for a few years & also with handicapped adults. It was a great job & I loved working with the patients so much. Working with children will be all the more honourable.  But...for your sake, I would strongly advise you find something to do with your hands that sets your mind at rest from a busy day or gives it time to process a bad day. Something you can do on those long slow nursing nights between patient needs & checks. As a nurse & nursing student you will have those good & bad days.  I so commend you for such an honourable most favourable goal!!   I'm so proud of you wanting to do nursing in this field. You already know your goal is going to take a lot of work & I have no doubt you can do it!  When I started babysitting, I took a first aid course. The first thing I learned was you have to LOOK AFTER YOURSELF FIRST. If someone's bleeding & you pass out, your no help to them. You have to look after you body & your mind no matter the job, but nursing has a few added responsibilities when dealing so closely  with others lives. 

I did find when I couldn't hide my gut issues on the job, it became very important to have my boss know what I was dealing with. They will work with you & your needs. I learned when to eat & what not to eat before  12 hour shifts along with the right fluids. I have found with an Ostomy  I am able to really plan my next day for whatever I want to do.

Doing things has  been so controllable for me once my body adjusted to my ostomy & a few other issues were sorted out. I deal with Chronic Anemia now, but at least I can still plan or not plan an outing if I choose. Yes, I know where all the washrooms are in my little town but I'm okay with that. lol!  I have been doing my own grocery shopping & running around, housework, gardening, flower beds & vegetables & this summer I even installed a watering system by myself at a fraction of the cost! Thank you "You Tube" again! lol!

On the job, on breaks,  I had Cross stitch or crocheting I took to work. It gave my mind a chance to concentrate on something else other  then my sickest patients & you can still talk while working on it. You will be ruined if you take the stress of work home with you. Tho I admit it is somewhat unavoidable, being human & you will always feel the loss of a patient, but your mind will have & need  a place to go & rest as well as your body.  I wrote a lot of poetry in the years of raising & praising children. It was a huge release. I  am published in it. A huge goal of mine. Mostly in Anthologies, but still, seeing a poem of mine in print & in the newspaper was always a big  thrill.  If you want to learn to sew ....I'd love to help, but we are a few Provinces apart. Having repaired my oven once & my dishwasher twice now, you can likely learn it on, thank you...You Tube! lol!  Start small!  Most Fabtic shops are willing to help you choose a simple dress pattern or Apron to get you on the right track. Some even teach. The instructions are in the pattern step by step. Buy a cheap second hand machine from a repair shop, you may get a bit of a warranty. My 2nd hand machine is five yrs old & still purring!! Yes folks, they actually purr...well, sort of!! lol!! 

Shay, your going to do great in your life & reaching these goals will be a wonderful accomplishment! I don't have to tell you  it's going to be hard work, you already know that but do not let your guts or ostomy hold you back. You will figure out what works best for you & I'm sure you'll accomplish everything one step at a time. you've got this!

Linda


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Shay10.6
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November 2, 2020 9:54 pm  

@dlkfiretruck Thank you for our positive and helpful message. It really means a lot. 

You earned the title of Pie Queen? That's impressive! After I got sick, baking was the first hobby that I picked up. Although, I have never earned the title of Pie Queen. I could never get the ratios right for pies or any crust really, my specialties are cookies and quick breads. My favourite thing to make are chocolate chip cookies, they are a surefire way for me to instantly be in a better mood. Do you have a favourite or go-to recipe?

 

Dating and relationships do weigh on my mind. However, by talking to other ostomates and my own self reflection I have come to the conclusion that the right person for me will love and accept me and everything that comes along with me including my bag and all of the emotional and mental tolls being sick has brought upon me. I don't have a doubt in my mind that I will find the person I am meant to spend the rest of my life with. I am hoping that by the time I am a mother my health may be in a significantly more stable and better place.

 

I am already anticipating all the hard work nursing school will bring. I won't lie, I do wonder frequently if I will be able to do it. I was out of school for 8 years because I was too sick to go and just got my GED a couple years ago. Not finishing high school and only having a GED diminished a lot of my confidence in myself to do well academically. I have explored other career paths and besides being a nurse and taking care of people there is nothing else I can imagine myself doing for the rest of my life, so I am going to have to find someway to push through and succeed. I love your advice about loving yourself first, that is something I am trying to work on. All of my self confidence and optimism on life diminished while I was super sick and I am just now trying to get that back. I realized that I talk very negative about myself and have no confidence in myself to do things(like nursing school) and I am trying to speak more kindly to myself and kind of be my own cheerleader and tell myself that there is no reason I can't achieve the things I want to if I put my mind to it and work hard. It isn't easy and there are still some days that I am not very nice to myself but I am working on and I think,no I know, eventually I will get to a point where speaking about myself in a negative way feel foreign to me.  think that by me working on my relationship with myself and loving myself that I will be a better and happier person, and eventual nurse, wife, and mother. 

I completely agree with your idea of letting my future employer know about my health struggles. I used to be ashamed of being sick and tried to hide it, but I have realized that having health issues is nothing to be ashamed of, more people deal with IBD or ostomies or know someone who has, and that people are a lot more understanding that I may think. My current employer at my retail job in the mall has been an angel in helping me with this whole process. She knows people who have ostomies and was great about me taking as much time as I need off work and even just checking in on me to see how I am coping. I hope to find a similar employer once I become a nurse. 

I am still working on staying hydrated and having some kind of an eating schedule but I am only a month in and I am sure I will learn what works for me once time goes on. 

I am still working on developing hobbies but thanks to you, I am going to my closest Fabricland tomorrow to get started with knitting, it always has seemed like such a relaxing and rewarding thing to do. I also have anemia and am always cold so i like the idea of being able to knit myself cozy things like scarves or blankets! I eventually want to venture into sewing and the crocheting and Cross Stitch that you mentioned even though I have no idea what they are, I like the idea of doing things with my hands and making things. I would also be very appreciative of any help or advise you could offer in terms of sewing, knitting, or crocheting or Cross Stitching.

I think I may also do some reading and find some indoor plants that I can have to take care of. I have always jokingly said that i have a literal and figurative black thumb because I always kill plants, but I am going to figure out which plants are good for beginners. 

I feel really privileged to be communicating with a published author. Congratulations on that, it must have felt amazing to see your name and work in print! My mom got me a book of Emily Dickinsons poems when I was younger and I remember that I loved it. I haven't ready any poetry in a while but I think I will start reading again. Do you have any favourite poets besides yourself?

I am trying to get better at living in the moment and not wasting today by worrying about future days and slowly I think I am getting better at it. Deep down I know I will reach my goals on step at a time and by loving myself and working hard!


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