Please read, desperate for advice

I am 27 with Crohn's in the colon since 2009 that has gotten so bad that I may need an Ileostomy. I am so upset that this has become my life, dealing with Crohns with no relief for more than a few months at a time. I need a new quality of life. Thats why I and my doctors feel I need this surgery. I want to work out and garden again, to do the physical things that a man should be able to do for his family. My main question, although I have at least a dozen, is will I be able to do the physical things I want to? Will I ever garden again? Will I be able to carry my boyfriend from our wedding? To help my future kids learn sports? Please, I need to know there is somewhere I can find relief, these are things I need to demand from life, I dont care if they take my whole colon. Thank you in advance for anything you can say or do. Please try to field my questions to the best of your ability.

Yes to every question, an ileostomy wont stop you doing anything and you will feel better and more healthy than you have for years, it will give you your life back 

Thank you for the reply. That is good to hear. I need those things again. Are there any foods I won't be able to eat? Can I drink wine again in moderation? Assuming I'm on the right meds and the docs say I could too.

Hi Jake, 

I'm so sorry that you're having to go through all of this and I've been where you are. I was diagnosed with ulcerative colitis when I was 20. The colitis ruled my life and I was a complete mess and constantly in pain. I would barely leave the house for fear I couldn't get to a bathroom fast enough. I had emergency surgery when I was 23. I had no choice but to have an ileostomy with a possibility of having it reversed later on.

My ileostomy saved my life quite literally. Recovery was hard because I was so very sick. I healed completely and learned to live with my new "friend"

There have been challenges, like everything in life but I can honestly say my quality of life is excellent and my "friend" doesn't hold me back from doing anything. 

I swim, dance, garden, work out, play sports, go camping, wrestle with the kids ( oh yeah, I had 2 babies 😀), ride roller coasters, and absolutely anything else I want to do!

I'm 49 now and still have my ostomy and still have great quality of life. I'm sure you will feel much better once you have it done.

Like I said, there will be challenges but having this surgery is a chance for you to lead a wonderful healthy, fulfilled life. This site is an awesome resource and the people on here are so kind and helpful. 

Feel free to private message me if you have questions or just want to chat. 

Casper❤️

This reply made me cry hard. I look forward to relief so much. And I want my own kids someday too, I dont want to be a sick dad. Please, if I can impose on you to detail the challeneges that you speak of. And when you do, please dont palliate these challenges, Ive been through hell for years already so anything you say shouldnt scare me too bad. Anything you can say with as much description as possible is so very appreciated.

Jake,

Everyone has a slightly different experience with an ostomy, so it's difficult to predict what your experience will be. However, there are some challenges that seem to be universal with an ostomy. First, getting used to how your ostomy works, and figuring out what products work best for you will take some getting used to, like anything new. It might take awhile to figure it all out - that's OK - the learning curve is always steeper at the beginning. You will probably get some help with that before you leave the hospital, but if I could make a suggestion - join an ostomy support group if you have one in your area. Your ostomy nurse at the hospital should be able to tell you how to find a group.  You will learn things in a support group that you probably won't get in the hospital. Second, all the ostomy product companies will send you free samples if you ask them to - this is a great way to figure out what products you want to use. They're all a bit different, and you will figure out your preferences if you have a selection to choose from.

You will learn in the hospital what kind of diet to start off with, and a general list of foods best avoided (if they don't give this to you, ask to speak with a dietitian). You might find, as a lot of us do, that you might eventually be able to tolerate foods on the "don't " list. The key to that is trying things in very small amounts, and chewing really well. Chewing is an art form for ostomates! We have to chew everything until it is easier to digest. And hydration becomes even more important with an ostomy, so you will need to be mindful of that.

There is no reason you can't be very active with an ostomy. You might need to use a support belt for heavy lifting, but once you figure out how your ostomy works, you should be able to live a normal life. Actually, your quality of life is likely to improve a lot, considering what you're dealing with now. You are young - you have so much yet to do in your life; this surgery should help you get on with living a good life. We're always here for support, so don't hesitate to ask questions.

Laurie

I concur with everything that Casper said.  My ileostomy was when I was 21.  I'm 78 now and have had a full, active life.  I married at 25, had two beautiful daughters, was an active jogger as a younger man, put a pool in my backyard, and ate almost everything.  The initial difficulty for me was getting over the new thing on my belly.  But back then, the ostomy appliances were like Model T Fords compared to the Lexus quality stuff available now.  So the psych challenge was tougher than the physical.  But in time, caring for your ostomy becomes no more complicated than brushing your teeth.  It's obvious to me from reading what you've written here that you'll be fine.  Stay well.   HenryM

Hi Jake,  Welcome to the site.  You have already gotten lots of great advice and you will find the people here are always ready to help and answer any question you might have.  I agree with everything that has been said.  Your biggest challenges will be at the beginning, getting used to being an "ostomate" basically, learning all the tricks of the trade.  You will face upsets, learning to use the various products, and not always being successful, having leaks, it happens to all of us.  It will take time to find what works best for you, but you will get there.  There will also be the initial healing period to consider, so don't expect to be carrying your husband anywhere for the first few months!  Ostomates are more prone to hernias, so you will need to keep that in mind.  After the initial recovery period, you can start to incorporate some exercises  to strengthen your abdominal muscles, which will help protect you from hernia, but don't rush anything. Eventually, you should be able to participate in just about any physical activity you choose. The other challenge will be the emotional one learning to live with this new "thing" on your abdomen.  That is where support groups like this help. It has helped me immensely, not just with information, but knowing you are communicating with a whole network of people out there that are just like you, that you are not alone. 

You are young and you have a whole life ahead of you, with the prospect of a much improved quality of life.  You will have many more questions as the process unfolds, and we are here for you.

Terry

Hi Jake. Everyone has given you great advice! I just want to stress that most likely the biggest struggle you will have will be the mental aspect of it all. Try to prepare yourself mentally as much as possible. You will get maintenance help in the hospital, and even for a bit afterwards, but taking care of it at home and just doing it yourself will make it a much more comfortable process, as you will get into your own routine. But Jake, please try to keep this in mind: you will struggle mentally in the beginning, i won't sugar coat that. However, please try to remember that once you heal and figure out what appliances work best for your healed stoma, you WILL be greatful that you made this decision ... I promise you that! A lot of people, once I tell them I have an ileostomy, say "oh, I'm sorry." But i tell them, with a SMILE,  don't be sorry because this saved my life and I've never been healthier! Also, as you've been told already, you'll be able to eventually do everything you wish to do. Good luck, Jake! Feel free to message any time with any questions or just to vent frustrations. - Mandy 🙂

I couldn't agree more, such good advice Mandy.  I look at my ostomy as a blessing.  It literally did save my life as I had a perforated bowel requiring emergency surgery.  It has become my friend, not my enemy, and I'm thankful for it every day.

Terry

Hi Jake lots of good advice here, i would reccomend going to youtube and look at the videos, i,ve had my ilieo. for 30 some years and i learned a few things from the videos.  good luck 

Hi JakeB,

  Ever the realist, I need to interject just a touch here.  What everyone has said is, or can be true.  You said you have Crohn's in the colon.  Crohn's confined to the colon is usally called Ulcerative Colitis.  Chrohn's doesn't stop at the beginning of the colon, it can make a mess of your small intestine as well.  An ileostomy is when they disconnect your colon and stick the end of your small bowel out your abdomen.  It doesn't matter who much of your small bowel they save or have to throw away.......it's still called an ileostomy.  Your quality of life post-surgery will depend entirely on how much of your small intestine is left intact.  If they only remove your colon, and no small bowel........you'll be a happy camper, as described above. But the more small intestine they have to remove (along with your colon) the tougher it will be to maintain the quality of life you describe.  Regardless, it will still be better than the pain and BS you're going thru now, but there will be challenges.

If I were you (and I was many years ago) I would have a very candid chat with your Gastroenterologist AND your Colorectal Surgeon and make sure they explain to you EXACTLY what they plan to remove and what the impacts to your life and health will result.  You don't want to go into surgery all fat dumb and happy thinking no problem.....snip, clip and I'm back at it in a few months only to find out that won't be the case.  Different sections of your small bowel absorb different nutrients, etc.  Your Gastro should be able to tell you in no uncertain terms what you may have absorption issues with based on what they plan to remove.  And if they tell you they're just removing your colon and no small bowel..........you're on easy street.  Go out and celebrate!!  But be an informed patient, not a remorseful one. 

Best of luck to you........let us know how you make out!!

regards,

bob 

absolutley the best advice has been given by everyone  who has been there and done it. i can only add one more thing..a scary thing... sorry.. but I am sure a select few know what I mean here.

as Bob said above.. getting  a sit down with drs before going under the knife.. is ideal.. due to time.. and non emergency ....do that. but bring your note book. 

my biggest mistake today is when they removed my  entire large intestine, the drs agenda was  to reconnect to anus late on... which they can do..Now with  that  drs  mind set and expeience,  it could of  gone either way.. and u have to think hard about the mechanics involved there.  I dont think about it cause mine is coming out-- the rectum.. is next.. you see  IBD.. has no cure.   it moves.. inflammation in body seems to travel.. as you may find out in later years.. but.. my advice for you since its NOT being done on an emergency basis as mine was, they need to see whats going on in rectum... when they cut out the intestine .. they didnt do that on me..  under emergency situations, they remove the infected bowel..period.. "in and  out"    hoping to reconnect later which is usually the case with most of us... but...guess what?? 

 I was STILL bleeding  after they removed the intestine.. how so? the rectum four for four years and presently still bleeds due to......crohns..  in short. if they remove the  intestine, better get  that rectum checked out  and   if it looks bad, have  it all done at once..   rectum anus, intestine.  removed....poof.  no more worries..no more chance of a come back as I am dealing with that now.   my  surgery was 2016.... and when  i told them "im still bleeding"..   you know what they said?  oh its normal.. post op.. ( bullshit!)   four freaking years.. now for  5.... everyday!!   so pls..  get  that butt hole checked some how.. and get it all done once.

yes this was the scary part  of it... not knowing about the rectum..  i have to get it removed.."the stump" its called  is of no use being reconnected. you get it in writing dude, they will check that area out before cutting u open..

that is the best I can offer from MY OWN expereince.. it is called a KEN butt.   he has no hole..  neither will I eventually.. not looking forward to that , man.. just my two cents.. on top of what everyone said above, I agree 100%..

make some notes in a book.. a diary.. cuz believe it or not, time is gunna fly and you're gunna look back on that diary and say like all of us here.. "thank God for this group of people- they were all right".   go get them Jake--be informed. 

Warrior.  

Hi Jake, I'm five weeks post colostomy surgery. I had four days notice. However, I woke up without part of my colon, no utrerus, no cervix and no appendix. They call the opening in your stomach/side a stoma. I've named mine Stella. She's quite naughty, making rude noises, leaving her perfume behind and she never cleans up after herself. I could be still deathly ill or dead instead of taking this in stride, making jokes and looking forward to resuming life. I've lost 60 lbs in the last year and that includes all my muscle. When the nurses/doctors would ask to see my stomach, I'd tell them not to be jealous of my 24 pack, due to loose wrinkled skin. if you can be grateful for the opportunity to heal and dig deep for some humor, before you know it you'll adapt and adjust to a different but better life. 

Hi Mose,  I love your attitude!  For someone so recently out of surgery, it is extraordinary and inspiring.  Although I have not named my stoma, she saved my life too, so I can't be too bummed out about her existence.  I am grateful for her every day, although she can be a nuisance and is demanding at times, seemingly unconcerned about what might be convenient for me!  She also doesn't know when to shut up, so can be embarrassing to be around sometimes.  Unfortunately, there isn't any way to leave her at home, so I've learned to indulge her, and we get along just fine.

Welcome to the site!

Terry

Hi Jake!

I was diagnosed with UC in 1991 and had an emergency colectomy.

The deal that I was offered was that my colon and rectum would be removed.

In 6 months after I was healed from that part of the procedure I would have another surgery to reattach my small by fashioning a rectum replacement from the end of my small intestine called a j-pouch and attaching it to the opening that used to be my anus, and I would be as good as new and my bowels would go back to functioning normally, like nothing had ever happened.

Lol! What a crock of you know what!

I don't remember who said it but please talk to your surgeon and find out exactly what the plan is.

I lived with this hookup until 2017. 26 years of gradual hell until the j-pouch wasn't functioning at all. I lived on the toilet. If I hadn't had the ileostomy I was going to die. It saved my life and my quality of life hasn't improved because I had no life until I got it.

If I'd known I would have kept the ileostomy in 1991 that I had for 6months.

Everyone has given you good advice! Just remember that one size doesn't fit all! From the appliance you choose to foods you can tolerate is different for all of us.

The only thing I have to add is your skin around your stoma is sacred ground. Keep it as healthy as you can! You don't want any irritation and many things can cause irritation. For me I found out the hard way that I have allergies to some products. I also found out the hard way that there's no reward for keeping your appliance on longer than you should. Some people can go 5-7 days before having to change. I'm not so lucky! Hopefully you will be but if not change when you need to. Stool leaking under your appliance will cause irritation. Remove your appliance carefully because you don't want to tear your skin. I'd invest in some adhesive remover spray ahead of time so you'll have it from the get go.

Good luck Ryan! You will feel so much healthier afterwards.

E& I

Excellant advice Bob...I might add, since you have the option of planning ahead ask as many questions as you can think of and become familiar with the process and most of all seek out a surgeon you love and trust !