Seeking Support for Ileostomy Recovery

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3219
Jules23
Nov 23, 2019 8:45 pm

Hi, just joined this site, looking to chat with people in the same boat. I had an ileostomy 8 weeks ago and feel a little overwhelmed by everything at the moment. 65 female, married, 3 children, 6 grandchildren. Still working full time although I'm off sick at the moment. Love animals, have 3 dogs, and volunteer for rescues. Anyone who wants to chat?

newyorktorque
Nov 23, 2019 9:45 pm

Hi Jules and welcome to MAO. Having an ileostomy just 8 weeks in is overwhelming! For me, it has been 3 plus years with an ileo, but I remember the beginning very well like it were yesterday. Yes, there will be frustrations along the way, but it does get better, little by little. I love animals too and have a fondness for ferrets. They are a lot of fun and easy to train.

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Morning glory
Nov 24, 2019 12:29 am

Welcome to MAO Jules. I had my ileostomy in 1987. You have come to the right place for information. I love animals too, although I don't have any at this time. I have one son and three grandchildren. I am retired.

Rebecca

Rev traci
Nov 24, 2019 1:53 am

Welcome! I stepped away from the group for a while only to come back and reconnect with amazing people! Hope you're resting and feeling well! Where are you from? I am from Ontario, Canada.

w30bob
Nov 24, 2019 2:02 am

Hi Jules,

Welcome aboard. Grab a drink, plop on the couch and feel free to chime right in. My first few weeks are just a blur. About all I remember is waking up each morning hoping it was all a bad dream and then touching my abdomen and feeling my bag. I think I finally stopped doing that each morning just a few months ago, and I got my ostomy in Sep of 2014.

Regards,

Bob

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
lovely
Nov 24, 2019 3:27 am

Welcome aboard, as Bob said. Feel free to join in and reply to any of the posts.

britathrt60
Nov 24, 2019 5:42 am

Hi Jules....welcome to MAO..I had my ileostomy in 1999 and can still remember how punk and weak I felt..went back to work 8 weeks after because that's the most time insurance would pay for...the weakness was so bad I had to use two hands to use a stapler gun for 1 staple...it gets better each day and eventually the ileo nightmare will end..we learn all the dos and don'ts and this site will be really helpful for you.

Rev Traci I live in Ontario too...welcome back

Cheers

Angela

Jules23
Nov 24, 2019 8:10 am

Thank you all for the lovely welcome. I am in London, England.

Not getting much sleep since my op and shattered every day, did anyone have upper back and chest pains after? Thought it was due to sleeping on my back but so painful I have to get up several times in the night, seen GP as much use as a chocolate teapot.

Bill
Nov 24, 2019 8:45 am

Hello Jules23.

Welcome to the MAO site and I am so pleased to see that you have had so many positive and helpful replies to your post.  Of course, having a stoma takes some getting used to and it can seem a bit overwhelming to begin with. However, most people settle into a routine an manage their new set of circumstances to the best of their ability. I'm sure you will be fine once you get the hang of it. 

By the way , I am about 30 miles North of you in the market town of Hitchin.

My wife and I also love animals  and (newyorktorque)have had some wonderful experiences with our ferrets in the distant past. 

Best wiszhes

Bill

Jules23
Nov 24, 2019 9:19 am

Hi Bill. Thanks for your reply, I am not too far from you in Barnet. It's still a London borough but also has the Herts in the address. I must admit I don't know much about ferrets, we only have dogs at the moment. Growing up (we lived with my grandad), we had a menagerie: chickens, rabbits, rats, mice, cats, and dogs. They all got along great.

I miss those days. I must admit my dogs give me a reason to get up in the morning, and I would be lost without them.  

I will now be looking up ferrets, haha. Although I couldn't have any here as my three are terriers. Nice to hear from someone local.

Take care. Jules

Jules23
Nov 24, 2019 10:39 am

Thanks Angela, it was a bit of a shock. I went in to have a colostomy and woke up to an ileo. Things were worse than they thought. Just got to get on with it. Funny thing is, the first 3 weeks were a doddle. Now I have other stuff going wrong. Keep thinking I will wake up and it's all been a bad dream.

Had 15 years of agony and just want my life back. It's been so long since I have been able to join in with stuff.

Family, sisters, although sympathetic at times, got quite abrasive after a few years. I was told to pull myself together, take some more painkillers, etc. as I missed a few Christmas and birthday celebrations. They had no idea what it was like. I am determined to see this through and get back to normal, whatever normal is.

People in the same boat know, and it helps to know I am not on my own. It has felt like it some days.

Thank you again.

Jules

Jules23
Nov 24, 2019 11:05 am

Thanks, just need to believe things will get better, not feeling so good at the moment.

J

Hermit
Nov 24, 2019 1:15 pm

Hello, welcome to the site!

Jules23
Nov 24, 2019 1:40 pm

Thank you.

ron in mich
Nov 24, 2019 2:58 pm

Hi Jules, I've had my ileo for 34 years. It wasn't a surprise for me as I was very sick from Crohn's/colitis and needed surgery, but after being released from the hospital and having to do the first change of apparatus myself, it was daunting. Being weak and tired, it was really a challenge. But like my surgeon said, accept the challenge and take control and make the best of it. Good luck and ask any questions; someone will have an answer.

Jules23
Nov 24, 2019 3:23 pm

Wow, 34 years. I'm just a virgin then. Eating is a bit of a problem at the moment - everything is very bland. I'm not allowed fruit or veg yet. High output is a nightmare, but they said it would settle.

I hate that I am so tired all the time. My dogs are wondering where their long walks have gone, as I can only manage short ones at the moment. How did you manage your diet? Can you remember? Not saying you have a memory problem, but yours was quite a while ago.

Me, I cannot remember what I had for lunch. I get what we call "senior moments."

warrior
Nov 24, 2019 4:48 pm

Welcome Jules,

I hope you find comfort here as we are all stuck in the same boat. Having a stoma is the basic denominator here.

I just joined this August 2019 and found a wealth of comfort and information. You are just months or so old with a stoma. I recall the mess dealing with leaks and various products out there. You find emotional and educational support here and possibly will make besties here for a long time. There are veterans here with a stoma and newbies like us. It's a learning process for us newbies. You just hang in there. I wish I knew about this site 2 years ago. Would have been in a better place for sure. Good luck and keep up on the replies and posts.

What I normally do before I reply to a post is check out the postee's profile to get an idea of what their story is, then reply. The people without profiles? I don't usually bother with them. It's a share and share alike deal the way I see it. If you don't show me yours, I am stuck. I showed you mine, ha ha.

Keep in mind some folks on here are looking to meet, greet, and even date. But more importantly, some are here to give and get support. You may even learn a few tricks to keeping those leaks at bay, for example.

As for family? Some suck and some don't suck as much. That's why we are here. We don't suck. It's a disgusting, embarrassing journey where here you will find your way, and no one cares you poop in a bag. We all do.

Good luck and welcome again.--Warrior

Jules23
Nov 24, 2019 5:22 pm

Thank you for the tips on profiles, didn't cross my mind. I did notice though that many are in America and Canada.. That's too far to meet for a coffee, well I say coffee because that's the norm,

I hate coffee mine would be a tea ha ha

w30bob
Nov 24, 2019 5:39 pm

Angela... I don't think using a stapler to keep your barrier on is such a good idea. If you peel the paper off on the backside of the barrier, it has adhesive on it to make it stick to your skin. Staples are very messy, make you bleed, hurt like heck, and can give you tetanus if they're not made of stainless steel. C'mon girl... get with it!

;O)

Sorry... couldn't resist!

Bob

warrior
Nov 24, 2019 6:16 pm

Bob, you have way too much time on your hands.   But cute.  

warrior
Nov 24, 2019 6:24 pm

Jules, a cup of tea, decaf, works for me.  Never liked coffee.  As for USA vs. Canada and UK people... hmm, well, I find there are a bunch of people scattered all over. I feel there are more UK osties than American.  Just my experience.. but who can tell.  If you find some locals, and you should, that would be great. A while back, I asked some NJ osties about a get-together... and  someone from Pennsylvania replied.. saying she visits her hometown in NJ... for holidays... which happens to be 15 mins. from me.  Go figure.. but none of the  osties in NJ I asked even replied to the idea.  So, I'm thinking it might be too soon to ask.  Whatever.. you be patient  enough, they will come around. :)    

newyorktorque
Nov 25, 2019 1:21 am

Hi Jules. The next time you walk into a room and totally forget why you were going in there once you arrived, that's not a senior moment. That's nature's way of telling you you need more exercise.

britathrt60
Nov 25, 2019 5:46 am

Bob, you are way too funny! I'm still laughing out loud...could be a good blonde joke too, and I am one, so seriously thanks for making me laugh...I really believe laughter is the best medicine...

Cheers, Matey

Angela

britathrt60
Nov 25, 2019 6:38 am

Hi Jules... I know what you mean about missing out on family stuff, etc. I had many painful years before my ileo too, and people who don't have what we do don't understand... I remember trying so hard not to limp because of the pain and constantly apologizing for not being able to do stuff... We are in the same boat, and you are on your way to a much better life... Given time, this journey will be a better one for you, and this site is so helpful... If you want a good laugh, keep reading notifications. Bob is hilarious and has me laughing out loud at some of the stuff he comes up with... Laughter is good too... There are a lot of wonderful, funny, compassionate people here.

Take care of yourself

Angela

Jules23
Nov 25, 2019 9:08 am

Thanks Angela, we all need a Bob in our lives. I have looked at some of his posts, ha ha. Getting there but can't see a light at the end of the tunnel yet. Have other stuff going wrong now.

I will get there!

Jules

ron in mich
Nov 25, 2019 3:23 pm

Hi Jules, when I first got my ileo, I ate small meals: soups, yogurt, pasta, toast with peanut butter, and scrambled eggs. I had resection surgery last year due to Crohn's, and my stoma was moved from the right side to the left. It was like starting all over again - small meals, no gassy food or hard-to-digest items like raw fruits or veggies. I also got a small blender and started making fruit smoothies.  

EvaJean
Nov 25, 2019 7:01 pm

I had horrible back and shoulder pain after surgery! I slept with no less than probably 6 pillows for weeks afterward! I found it really helpful to be propped up and have pillows wedged under both sides of me. My abdominal muscles were so weak after surgery that I couldn't even stand up straight to walk so my back muscles were trying to compensate. I tried to move as much as I could and I got stronger every day. All that pain is now just a "happy" memory. You'll get there!

warrior
Nov 25, 2019 7:17 pm

Chocolate tea pot? That is an interesting way to refer to a GP. Never heard it put so frankly. Ha ha. Yeah, a GP is useless, Jules. Gotta stick to the ostomy nurse or surgeon.   Although most doctors I find are useless, period. It's the people...the patients you gotta rely on.

Re: back pain...when you lay down, always prop knees up with back flat. No pillow at head. And a trick I have learned is to sleep on your side with a firm pillow between the legs at knees. I'm usually in a fetal position when trying to sleep. This helps my back very much. ....cheers. Warrior..

Jules23
Nov 26, 2019 11:25 am

Thanks, just arrived home after spending yesterday and last night in A&E, back pain worsened, light-headed and chest pain, Dr thought I had a blood clot in my chest CT clear ??? Back again in 2 hours.. Ho hum when will it all end!

As for sleeping, I always slept on my side, have tried to get back to normal but horrendous pain and pulling on my right lower side, stoma nurse said give it a few more weeks, and try again. Suffice to say I have matchsticks holding open my eyelids today. So tired.

Well, have to sort out my dogs, you would think I had been away a month not one night.

Have a good day all.

warrior
Nov 26, 2019 2:38 pm

Yes, blood clots are another matter we have to watch. Rest and go about things easier.