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I'v only just had my stoma :(

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Posted 5/29/2011 5:33 PM (GMT 0)
Hi i'v never been on a site like this before and i thought maybe it would help me to find other people who have been through similar things to me.

I'm 22 and i'v just had an ileostomy after finding out I had ulcerative colitis, i was took down for my op 3 days after they found out. This didnt give me much time to get my head round it. after a month in hospital i'v been home for just over a month and now my wound has healed the nurse's dont come anymore. I'v got terrible scars and really dont like the bag, im finding it all a little daunting, altho my family and my friends are being very understanding i still dont feel that i have any1 one to talk to. i guess to be honest im scared about spending my life like this.

I'm hoping maybe i can find people to talk to and help me deal with this, surely i cant be the only person who's felt like this??

Thankyou for taking the time to read this.
Posted 5/29/2011 6:07 PM (GMT 0)
Hello Melski,

I can imagine how you're feeling. You don't need to feel alone. Most people with colitis don't have to have the surgery, at least, not so quickly. It's usually after a few years, but when you have read a bit more around the internet, you will read about all different kinds of experiences and cases.
It's really unusual that someone gets a first colitis diagnosis at a point when it's so advanced that surgery is the only possibility. If you were in the hospital for an entire month, you must have been really very ill, or there were complications after the surgery. It must have been a much more difficult time than you have described.
So no, you are not the only person who feels the way you do.
My doctor started talking about the possibility of surgery in July, 2010, then said in October 2010 we don't have to think about it yet. But when I got another flare-up of colities in January, 2011, and was not really responding to medication, plus I had a serious stricture in the colon, he really recommended very severely that I have the surgery. I had a lot more time to get my head around it, but even with all the time, it was not less of a trauma, and it did not make having the bag "ok". None of us want it.

But I can tell you that two months after surgery, I can accept the bag and want to get on with my life without the bag and the stoma being the center of my attention. There are other things in life and I want to live them.

So dealing with and feeling good about yourself and about your life is all a kind of proccess you go through over the next months. Don't be afraid of anything.

Did you doctor talk about reversal?

All the best,
B'Derech
Posted 5/29/2011 8:54 PM (GMT 0)
Melski,

Welcome to the list -- this is a great place to get support and information.

You've been through an incredible trauma. A lot of us were sick for years before having surgery and so it was a relief. If I had been as young as you are and the surgery had been as quick as it was, I would have been having a very hard time coping (it's still hard being older and planning for the surgery). Be gentle with yourself, it might take a while to feel better about things.

One thing you can get from this list is that a lot of people are having really good lives after the surgery. It does not have to limit you.

Is there a support group in your area? If not, is there a chapter of the Crohn's and Colitis foundation or the United Ostomy association? Both of these groups can hook you up with others who've had the surgery. I found it really helpful to meet people in person who are healthy and doing fine after the surgery (wow, she has a bag too? wouldn't have guessed it.....).

You might also consider some counseling, which helps many people. You've been through a lot both emotionally and physically, and you need a lot of support.

Hang in, and feel free to ask more questions.
Posted 5/29/2011 11:01 PM (GMT 0)
B'Derech

Well to be honest i went to a walk in clinic with sickness n diarrhoeal. id had it 3 weeks. i was told to go to a &e, wen i got there i kinda new i wasnt coming out. they did a lot of tests and within a few days told me what it was, gave me steroids which didnt help. so then they told me bout the surgery i didnt even consider saying no. i dont no much about when i was in hospital i think i blocked alot of it out. to be honest i even though iv spoke to my doctor n consultant and researched stuff it still doesnt seem real.

I have spoken to me Consultant (well his under study) and i have a good chance of a reversal but after reading some of the info online im more scared of that then keeping my stoma.

Blueglass

I can imagine its no worse for me as it is for planned op's. i have a stoma group in my area that i have been advised to go to but i find it very hard to talk to people face to face about it. i spoke to a psychiatrist wen i was in hospital but found i was very uneasy talking to her and too be honest rather worse after.


thankyou both for taking the time to write back to me, it means a lot

Melski
Posted 5/30/2011 12:06 AM (GMT 0)
Melski,

You might find a social worker or psychologist better than a psychiatrist -- the psychiatrists are often more drug dispensers than anything. Did you connect w/any of the nurses? Sounds like you might have....maybe one of them can recommend someone?

I talked first to people who had had the surgery by phone, would that be easier? Or go to the group and just listen don't talk?

But of course, if these things are too stressful for you, don't do them..... you really can get a lot of support/info from online, so if that's what's comfortable, go w/it.

I'm surprised they didn't try you on any drugs past steroids, e.g. remicade etc. There are a lot of other drugs, but I guess that's not all that helpful now. That's so fast -- I feel for you.

Do you have someone to help navigate medically? A parent, friend etc? It's a lot to do by yourself.

As for reversals, mine's permanent, but do keep in mind that people tend to write more when they're having trouble than when they're doing fine.... so you might be getting a skewed picture. Something like 90-95% of people who have a jpouch are happy about it.

take care
Posted 5/30/2011 2:11 PM (GMT 0)

Hello :) I'm almost the same time post surgery as you. I had my surgery just over 7 weeks ago, and due to a few problems spent the majority of the following month in hospital.

As you have already seen in peoples posts on here - most of us here have had surgery as a last resort looming in the background for a while, in the meantime trying different meds. I'm sorry you didn't have hardly any time to get your head round what you were about to have done.

I too have (what I call) an 'ugly' scar - about 6 inches running down my stomach area. Other people keep telling me its neat and of course will fade over time, especially if you can use something like Bio-Oil on it. I still need to come to terms with that, and also like you I still haven't got my head around the bag completely, but it has got better over time, and I'm sure it will continue to do so. But everyone takes different amounts of time to come to terms with things - both mentally and physically.

Have a look through some of the posts on here and post as much as you want, there are people on here at all different stages and so you're very likely to find many people who understand just how you feel and offer advice.:)

Posted 5/30/2011 5:04 PM (GMT 0)
Hi Melski,

I think I know how you're feeling about talking about it. I noticed I kind of withdrew socially a few weeks before the op, that means, there were maybe three friends who knew about it, and I didn't talk to or see anyone but them. One was a guy I was dating, and he bailed out of the relationship when I came home from the hospital.

For the next weeks after OP, I still only saw those two friends, and had a very hard time leaving the apartment. Just to go grocery shopping and make sure I was moving around enough every day. It just felt too weird to be on the street, and forget about buses or the subway. Part of that was my feeling physically sensitive and vulnerable. But part of it was also this deep feeling that I had been surgically changed into a a mutant species and wasn't quite really human any more, because of the stoma and the bag, and that my systems would never again function like a "normal" person's system.

Then I was in a rehab clinic for 3 weeks. I hated it there. I didn't want the other patients asking me any questions, didn't want to talk to them at all. I couldn't stand it that I had to sit at a table with people I didn't know and eat with them three times a day. I started taking meals up to my room.

These feelings have normalized in the last week or so. I've even gone into stores and tried on clothes. No one notices that I have the bag. I've realized that it really is true that no one can see it, no one would even ever suspect.  I can go through the day and start to think about other things. I am starting a new job day after tomorrow, and I know it means I will not even get a chance to think about the bag and stoma for at least 8 hours, except when I know I have to empty the bag, just like everyone else at work will have to go to the bathroom.

That's what I mean when I wrote, give your feelings a chance to heal too.

But it really helps if you have at least one friend you can talk to, who understands that you need to talk about  IT.

I have my oldest friend, far away, and we talk on skype. She is being wonderful to me. I even showed her the different kinds of bags (on webcam) and we talked about the pros and cons. This did me so much good, just to have someone I can talk about this stuff with in a totally normal way. That's the most important thing, getting it all so that it is just normal, I think it takes a few more weeks for you and I really hope you have a friend like that. It could even be someone you didn't expect. At some point in the near future, I really think you will start to feel like you want to be around people socializing the same way you always did.

Best,

B'derech

Posted 5/30/2011 6:18 PM (GMT 0)
I do socialize with people but i kinda forget whats going on and then when i remember i get upset, have a very good friend who i do talk to about it, but i think he gets worried about saying the wrong thing, as i tent to cry alot. i guess it still doesnt feel real. I no I should be feeling grateful that im well now, and that i should be trying to move on but to be honest i find alot of the time i just feel sorry for myself. I cant wait to start work again just to get me out of my own mind. stupid tho it sounds i dont feel like my bodys my own anymore, and worry about how people will react if i tell them altho to be honest i live in a small town and i think most people no, most sentences start with, how are u feeling now, and i no there look to see if they an spot the bag.

I'v been advised to go to a stoma group it happens on the last day of every month, altho to be honest im not to sure what to expect when i get there seems a little strange to me :/

As for my scar i'm not to sure that bio oil will do enough :( seems scary to even look at myself in the mirror at the moment.

thanks for writing bak :)
Posted 5/30/2011 8:54 PM (GMT 0)
Melski,

I know exactly what you are going through. I was 22 years old when I was diagnosed with UC. I was on prednisone for most of my illness until this February when my life went down hill. I'm now 24 years old. I got such a bad flare up for UC that I went to the ER Feb 8 of this year and morphine wasn't even helping the pain. I was in the hospital for almost a month when they mentioned surgery to me, I had never heard about it. I opted for surgery Feb 24 to remove my entire colon, leaving me with an ileostomy. I hate the bag just as much as you do. I had the chance the reversal surgery also known as takedown because I had a j-pouch created out of my small intestine. I went in May 12 for takedown and it seemingly went well besides a fistula that formed. Not even a week later, I'm back in the hospital having the bag put back on until the fistula heals. So now I have the bag until who knows when. It's very hard to deal with emotionally, mentally, and physically. It seems to consume our lives at first because it's just not normal to be having crap coming out of our stomach, right? I'm having a very hard time dealing with this the second time around because we all thought at this point I'd be bagless eating what I wanted and being at work and unfortunately, that's not the case. The only advice that I can give you is the advice others are giving me, take it day by day and brighter are days are soon to come. (I'm still trying to live by that. It's difficult). If you have any questions, weird or gross, please feel free to ask me. Take care and feel better soon.

Caitlin

Posted 6/1/2011 6:29 AM (GMT 0)
Melski,

It's crazy how alike you and I are going through this whole thing. Ive had Crohn's Disease for 13 years (diagnosed when i was 14) and the whole time ive had it I've known that people do sometimes have to get ostomies but I always had the attitude that my disease would never get that bad and I would never have to get an Ostomy. In 2003 when i was 18 i had a surgery for my crohns removing a foot of my colon and 6 inches of my small intestine but was able to get hooked back up no problem but it left an ugly scar that ive been living with for many years. In febuary of this year i started having constpation symptoms (i know... constipation symptoms with crohn's disease... rare!) but it wasnt constipation at all. I dealt with it for 2 months going back and forth between my family doctor and my crohn's speicalist and finally on April 13th she told me she wanted to do a colonoscopy to see what the problem was. It turned out I had a blockage in my colon and the camera from the scope couldnt even fit through so she told me to increase my humira to once a week in hopes it would reduce the swelling. That night after the scope i was in the worst pain ever. Severe Diarrhea and losing a tonne of blood. The air they put in your intestines for the scope i couldnt pass and it was a nightmare. I ended up going to the ER that night around 2am, April 14th. Over the next few days they did a CT scan and a few other tests and found that behind the blockage i had a bunch of infected fistulas in my colon. They put me on antibiotics in the hospital and i was told that there would be a meeting between my doctors and the surgeon as to what to do next. Tuesday, April 19th a nurse came into my room in the morning and told me that I was on the emergency surgery list and I was to have nothing to eat or drink. Then at 5pm i was heading down to the OR. I was not ready. I'm 27 and i cried so hard the wh ole way down to the OR. I had no time to wrap my head around it either and I felt like my life was going to be over. It's been 6 weeks now and i still can't fully get over it. Like you I socialise with my friends and forget all about it and then when i remember I get really depressed. These forums have really helped me to overcome a lot of my fears and theres so many little tips to do everything and i see now that if I am going to have this ileo permantly that my life doesnt have to be over. But I know that I am not strong enough emotionally to be able to handle this permanently and im really hoping that Im able to get the reversal in a few months.

I'm really glad im not the only one that is going through this. I feel like im sad all the time. We will get through this though. Get better soon :)


~Desaray
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