New to Ileostomy and Seeking Advice and Friends

Hi, my name is Zoe. I'm 26, living in England! I'm pretty new to this ileostomy situation and this website. I have no idea how to message people or talk to them! Feel free to chat. xx

Hi Zoe, from what I can gather, you can only reply to messages from paying members. You can't send any.

Hi Paul, thank you for that information. That's not very good, is it? Lol, I'm sure I'll figure it out. Thank you for your reply; it's very kind. xx

Hi Zoe, lol, no, not really. I'm new to this myself, not really got the hang of it yet. How are you adjusting? I see you had yours a month before me.

Yeah, I had mine at the end of November. I had my large bowel and colon taken away in August; it caused a blockage, so I went for surgery in November, and they put a hole in my small bowel, so I got rushed straight back. I'm not really good with the theater; I hate it, to be honest, but at the same time, I've never been out of the hospital for so long. Just the problems that come with it are a pain in the arse, pardon the pun, lol. I just need to accept it, I think. Is yours reversible?

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Lol 😄. Wow, you haven't had a good run, have you? Yeah, mine's supposed to be temporary. Yes, I hate mine too; it takes a lot of getting used to. I had mine in early December, the first flare in 10 years. I had an abscess and got a drain put in for that in October, also had sepsis, a blockage, and a perforation. So, I had that section of my small bowel removed. It seems to be under control now. I'm on Humira, which helps with the AS. It's a terrible disease, isn't it? Lol.

No, I was in the hospital from August until December. It was awful, but I was in a lot due to flare-ups and infections. It's a terrible disease, lmao! At least we can laugh though! It's lucky it's reversible for you! I'm due for more surgery. You'd think I'd be used to it now, but I'm dreading it. It's nice to talk to someone who knows how it feels. I don't think anyone else can understand, even though they try to be supportive.

It is you need to speak to people who understand. I'm trying to pluck up the courage to go to a local support group, feel a bit daft going into a room full of total strangers lol. My brother-in-law has a permanent one due to Crohn's; he's had that for over 20 years. So he's well used to it; he's forgotten what it was like in the beginning. Yeah, I'm not counting my chickens though. I have heard it's better to keep it, less chance of flare-ups. That's the main aim, so I'll see how it goes. I feel for you, more surgery!! Oh hell. You look really well; you must bounce back quite well. I'm on my second week back at work on reduced hours. Praying it'll stay settled.

I feel the same about a support group. My stoma nurse has mentioned it a few times, but I've been nervous, so I thought I'd try online. My gran bought me a funny book on ostomies, and this site popped up a few times in it, so I thought I'd give it a go. It's the best recovery I have had out of all my surgeries - I guess makeup helps, lol, but thank you! I have good and bad days as I'm also undergoing radiotherapy (nothing to do with the bowel). I guess I'm just not having much luck with health at the moment - my cousin has Crohn's. He's had a colostomy and ileostomy for years, and he's refusing to get them reversed; he's never been better.

Lol, exactly why I've come on here. There's a meeting tomorrow near me; in two minds whether to give it a go. Probably won't, see how I feel on waking, lol. Oh God, you are having a bad run. Hope you get better luck very soon. I don't blame him; if it's working, keep the sodding bags, probably what I'll end up doing as much as I hate it.

You should try it, although I keep saying I'll go and I won't. Sorry for the late reply; I was tucking my son into bed. I think mine is to stay in, seeing my surgeon Thursday to discuss the next operation because I still have the hole in my bowel and blockage. They did a loop ileostomy or something, but they think I'll end up with a permanent one. But I'm still here, and it saved my life, I guess.

Hello Miss Zoe & Paul.

Thank you so much for posting so that we can all read it. I don't have an ileostomy  so Feel that I cannot contribute much to this thread. However, I just thought I'd let you know that your conversation has been both interesting and educational so I hope you continue to find stuff to tak about that I can eavesdrop on.

Best wishes

Bill

It's fine, no need to apologize. I've just been picking my daughter up; won't see her for the rest of the night though—PlayStation and movie apps, lol. Yep, that's the way to look at it. I was told I was very lucky too. It took me 3 months to get an appointment though because I'd had no problems for years. Must be causing you some pain. When are they expecting to operate?

Lol No problem Bill. Not posted much. Just been floating around trying to figure the site out. Carry on eavesdropping 

I'm totally lost with this site - I'm wondering if I've done the right thing signing up lol 

Hi Bill! Thank you for your message. Do you have any sort of ostomy? I'm all new to this, so I don't know a lot or know much about the site either.

Hello Misszoe90. I have a colostomy for more years than I care to remember. For someone who doesn't know much about the site you're doing just fine!

I would encourage you to just explore different parts of it as and when you get time. Personally I like to look back at some of the older stuff and the profiles just as a matter of interest.

Best wishes

Bill.

You two, I highly recommend trying a support group. I've helped run a group in the past, became a visitor support volunteer with patients who've just had an ileostomy in the hospital, and it's great to walk in, look at all the people who have been where you've been. The best part is there is always someone else who's had a tougher time than you, and you wonder how they managed it. For me, folks have been so helpful, comforting, and supportive. Give it two or three chances and see if it works for you. Don't be afraid to ask anyone about anything. We're all here to help each other with this turn in our lives. Hang in there. It will get better.

Lol, hi Zoe! I'm a newbie to this site and am totally lost with how it works too! But I'm not new to having an ileostomy. I had mine when I was 17 and am now 55! At first, I thought my life was over and held a pity party for myself every day. I was wearing a clear 12" bag, lol, it took up my whole stomach...that had to change! I wanted to go out with my "normal" friends and do things! So I found a bag that fits my lifestyle. And it's tan in color (really, I don't see the need for a healthy woman to have to look down at a clear bag and see what she ate for lunch). My bag lays flush to my stomach and is a 9" long one-piece open bag (made by Hollister). Finding an appliance that fits you can really start the ball rolling to get back into the swing of things. I can honestly say no one would ever guess I have an ileostomy unless I told them. Hope you're doing well and if you can navigate this site, lol, or figure it out let me know too!...Marla

Hi Marla, very good post. Thank you for the boost of confidence. It is good to hear the positive about getting on with life. I agree with you regarding the clear pouches. I really disliked the clear bag because you could see what was going on...something I don't want to see on a regular basis. For me, the opaque bags are best. I really wish that the manufacturers would produce nicer looking pouches with some style and print/color options. It would make the entire ostomy situation less medical and more mainstream. Underwear is not all one style...why should ostomy pouches all look the same? Thank you again. Have a nice weekend. LH

Hi Lady Hope, thank you for responding to my post regarding: Clueless Newbie.  I am not very tech savvy when it comes to a computer.  Truth be known this is the first time I've been in any type of forum let alone an Ostomy site!  I am still trying to navigate my way around this site, I'm really enjoying the tips and the helpful hints everyone shares!  I'm also quite amazed how many younger people are going  through this transformation, I'm inspired by their courage and willingness to ask for help and support! (something I could not do at the beginning)

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Marla

Join a Web based support group. Try www.TheAmericanOstomyClub.com and their Facebook page.  Check it out.  And it's free. 

If you need help, get back to me. I've had mine for 5 years now.

Hi, if you have any questions, please feel free to chat with me. I am actually having my prolapsed stoma repaired and two hernias repaired, as well as having the entire ileostomy site relocalized to the left of my belly. My surgery is April 6. I'm scared to death, as I know this is a much more serious surgery because of the difficulty in dismantling the current stoma site and creating another one. I had an ileotomy for one year and had a reversal done that I lived with for ten months. It did not go well at all for me, and I had to go back to the ileostomy as the anal fissure I had would not heal. I had the ileostomy put back in June of 2014 at Cleveland Clinic Foundation and ended up having a bowel obstruction in June and July. That resulted in a surgery on August 1. I do not take Lomotil or Imodium. My new surgeon does not believe in it. It was a major part of my problem. If the output is too thin, I fiber up, and if too thick, I drink. It works great. I am hoping this surgery goes well. My surgeon will only move the entire site if I won't end up losing too much bowel. I told her I will not live with intravenous feeding due to losing too much bowel. Would love to hear from you!

Hey I'm Darren, 34 from Crewe in Cheshire. I have had my ileostomy since 2001 with two failed reversals. Also have diabetes.

I can really relate to the adhesive sticking and having issues with getting it all off before applying the new bag!

What adhesive remover is available to use?

Also, I had a hysterectomy and my ileostomy is temporary, but while I have it, I'm wanting to wear compression panties and am wondering how I'm going to

with the bag being in the way?! Anyone else having this issue?

Laura

Marla, I have that issue too—I get my bags from Hollister and think mine is the 9" bag too? It seems bulky to me

and fills up with gas-air, a lot! 😩

Do you have a cover for your bag, or is it just opaque?

Thanks—Laura

Hi All,

The objective of the site is to allow people to meet another ostomate, and I assume for the owners of the site to make money. Therefore, the option to "talk" to someone in private is to become a paying member.
There are numerous other supporting sites, www.inspire.com, www.ostomyland.com
and then there are several "closed" groups on Facebook.
If you are a non-paying member, you can still talk to people in the chat room, but you cannot talk in private.
Any member can "wink" at any other member, but if neither is a paying member, that is as far as it goes.

Cheers,

Ed

PS. If you wink at me, I will message you back.

Hi Zoe,

Welcome to the site. I know you feel like a "newbie", but hang around here, read the posts, answer or contact people, and start a discussion with them. You won't feel so "new"... People are really nice, supportive, and very helpful.

My name is Marsha, and I've had my ileostomy surgery since I was a teen of 15, and now I'm 67. I did most of my firsts with the surgery... dated, married, had children, went back to college, got divorced, and did a lot of traveling. While some things aren't always easy (with an ostomy), I've found that with the right planning, almost anything is possible.

Signing up and remaining a member is the right thing to do. It's worth the money, and you'll be surprised how your input will help other people who may not feel comfortable communicating as yet. And if you have one close to you, go to a local ostomy association meeting. When I was a kid, my doctor said go, so my parents took me "kicking and screaming" that I didn't need to go talk to old people... Ironically, I met a whole group of teens and young adults, and within a few months, we got our own young adult group started. Our needs and questions were quite different from those of the adult group... and I for one didn't want my parents involved to that degree. Back in those days, sexual & intimate topics weren't talked about as openly as today. You'll find that you can chat about almost any subject here... and meeting others (with ostomies) is also a big help.

If you have any other questions, feel free to write & ask, or post on the forum. Best of luck to you.

Marsha

Hi all.

I am also new to the ostomy thing. Had the operation last August, and another in January of this year. Now I have an ileostomy and am slowly getting used to it. I have done a lot of reading on it and the different products we can use. I am from Canada. Now I am looking on sites for ostomy clothing. All sites are from the UK; none in Canada. Hope all goes well with you.

Eileen