Hi, I've recently been told I either have the option of having a stoma or going on a drug trial. I've had crohns since 2004 when I was 12 and recently in a flare up since September. I haven't discussed the stoma yet with my dr so I dnt really no much about it I was just wondering what everyone who has one or doesn't thinks really ? I'm really worried and tbh I'm waiting for a second opioion cause I think my dr was to quick to make this decision I feel I'm in a flare up and I'm struggling with two abcesses one with a sition and one without which I've just had drained, I was told if I don't have the stoma then I'm just going to develop more abcesses everywhere. I had this when I was first diganosised (two abcesses) and they did heal up. I'm just worried about the stoma I no loads of people have it but I don't no what my bf will say some people say its the best thing they have ever had though? Any advice is really appreciated.
Scared
- Thread starter Jenny92
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PsychoJane
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Hello Jenny,
It's normal to be scared, it's normal at any age but I can totally relate to your situation. I've had Crohn for 13 years now, and a stoma since my first flare. I've never really had the time to ponder over the idea of having or not a stome. In my case it was pretty much a have it done or die slowly as I was literally losing all my blood and the treatment really were not working and making me sicker if anything.
I have to say I was scared of how others would see me. I was 14 so you can probably imagine how scary it was for me to start dating after that? I mean, I've never really known the dating before so for me it has always been the dating after. I never really felt sorry for myself because I had a bag. Despite that though, from 19 an up, I've rarely been single and when I was, it was by choice. It is something you will have to be discussing with your boyfriend if ever that is the choice you make (cause seriously, having a stoma, temporarily or permanently, may really bring the greater relief and allow you to live your life fully again). If ever he can't cope with it, then it's really unfortunate but to an extent, you don't want to be with someone that is shallow? That's always how I've seen things even though it's easier said than done. If he loves you for who you are he won't care!!!
I'll admit that what worried me the most was the dimension related to sexuality and the perception that would have my partners about it. Let's be honest: you can still be pretty, sexy and desirable even with an ostomy. Some guys may care but there for sure are plenty that will love you with or without it.
If ever you make that step, it's sure you'll have a transition period where you adapt to all the little details that are different, from taking care of the stoma to gaining confidence related to various situations (like going to the beach which, in my opinion, was the trickiest but totally manageable with one or two fashion tricks). You will sometime get mad as you learn but once that few months are behind, life is really good when it goes properly. You can generally eat like you never had before. You can enjoy the wonder of not having to rush for a bathroom and consequently have a better social life. Not having pain is also a great deal!
Anyway, in my opinion, it's really worthwhile to consider the surgery as an option and feel free to ask about any worries you have. By expressing them we will be able to help you reduce your concerns on these topics.
It's normal to be scared, it's normal at any age but I can totally relate to your situation. I've had Crohn for 13 years now, and a stoma since my first flare. I've never really had the time to ponder over the idea of having or not a stome. In my case it was pretty much a have it done or die slowly as I was literally losing all my blood and the treatment really were not working and making me sicker if anything.
I have to say I was scared of how others would see me. I was 14 so you can probably imagine how scary it was for me to start dating after that? I mean, I've never really known the dating before so for me it has always been the dating after. I never really felt sorry for myself because I had a bag. Despite that though, from 19 an up, I've rarely been single and when I was, it was by choice. It is something you will have to be discussing with your boyfriend if ever that is the choice you make (cause seriously, having a stoma, temporarily or permanently, may really bring the greater relief and allow you to live your life fully again). If ever he can't cope with it, then it's really unfortunate but to an extent, you don't want to be with someone that is shallow? That's always how I've seen things even though it's easier said than done. If he loves you for who you are he won't care!!!
I'll admit that what worried me the most was the dimension related to sexuality and the perception that would have my partners about it. Let's be honest: you can still be pretty, sexy and desirable even with an ostomy. Some guys may care but there for sure are plenty that will love you with or without it.
If ever you make that step, it's sure you'll have a transition period where you adapt to all the little details that are different, from taking care of the stoma to gaining confidence related to various situations (like going to the beach which, in my opinion, was the trickiest but totally manageable with one or two fashion tricks). You will sometime get mad as you learn but once that few months are behind, life is really good when it goes properly. You can generally eat like you never had before. You can enjoy the wonder of not having to rush for a bathroom and consequently have a better social life. Not having pain is also a great deal!
Anyway, in my opinion, it's really worthwhile to consider the surgery as an option and feel free to ask about any worries you have. By expressing them we will be able to help you reduce your concerns on these topics.
Terriernut
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Jenny, its understandable to be scared. But, as you read through this particular sub forum, you can see that our lives have been improved so very much. Many on here have temporary stomas, which I would think might be the case for you?
I see from your previous posts you have been on all the biologics. This is probably why the GI and surgeon are suggesting a stoma for you. Have they said if its permanent or temporary?
I am sorry you are feeling so awful with this nasty disease. I wish I could give you a huge hug. Dont let fear keep you from doing everything possible to get well again. You deserve a full and happy life.
:hug:
I see from your previous posts you have been on all the biologics. This is probably why the GI and surgeon are suggesting a stoma for you. Have they said if its permanent or temporary?
I am sorry you are feeling so awful with this nasty disease. I wish I could give you a huge hug. Dont let fear keep you from doing everything possible to get well again. You deserve a full and happy life.
:hug:
They said it would probably be permanent. I was told I have to have it for at least six months and after there is a chance I might not but they can't say until they have done it. I have tried so much medicine but until now I've been well for four years I've only had two serious flare ups in eight years (ironically every 4 years)
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my stoma is permanent, i had my surgery this time last year when i was 21 so i was a similar age to you.
i was happy enough to go for surgery at the time because i was just sick all the time and i'd had enough. it's nowhere near as bad as you think and i wish i'd had my surgery sooner.
i too was worried about how my boyfriend would cope- he was fine and just wanted me well again.
flick through some of our posts and if there's any questions you have just ask!
big hugs to you! take care. x
i was happy enough to go for surgery at the time because i was just sick all the time and i'd had enough. it's nowhere near as bad as you think and i wish i'd had my surgery sooner.
i too was worried about how my boyfriend would cope- he was fine and just wanted me well again.
flick through some of our posts and if there's any questions you have just ask!
big hugs to you! take care. x
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Hi Jenny!
I'm an old hag and at the moment have a temporary ileostomy. I freaked out when the doctor first recommended surgery. I did go for two additional medical opinions, read a ton of books, and spent a lot of time on this forum before deciding to have surgery. BUT, I am soooooooo glad I did!!
I will admit that I think the decision would have been much more difficult for me to make had I been in my 20s. However, whatever you decide, make sure it is YOUR decision and not pressure from anyone else. There are good and bad sides to all of it.
For me, the payoff of health and having a life again is just so wonderful that I don't mind the additional care of a stoma. I had approval from the surgeon to have reversal done a month ago, but I'm waiting awhile still. I really like my life right now.
I'm an old hag and at the moment have a temporary ileostomy. I freaked out when the doctor first recommended surgery. I did go for two additional medical opinions, read a ton of books, and spent a lot of time on this forum before deciding to have surgery. BUT, I am soooooooo glad I did!!
I will admit that I think the decision would have been much more difficult for me to make had I been in my 20s. However, whatever you decide, make sure it is YOUR decision and not pressure from anyone else. There are good and bad sides to all of it.
For me, the payoff of health and having a life again is just so wonderful that I don't mind the additional care of a stoma. I had approval from the surgeon to have reversal done a month ago, but I'm waiting awhile still. I really like my life right now.
Excuse my ignorance when it a Stoma needed what were the symptoms that led you you get a Stoma? Is it for the most severe cases or can be for any cases? I've read that if you have U.C and have certain part of your GI tract removed it will get rid of U.C but could end up with a permanent Stoma. However Crohns doesn't it tends to go to remission and can come back anytime, so what does the Stoma do if you have Crohns?
Thank you.
Thank you.
Nyx
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@SidS....I got my stoma because of a ruptured sigmoid colon and distended bowel. My stoma is permanent. All of my disease is in my lower system and mostly in my rectum. True, when you have Crohn's you can develop it anywhere in your digestive system, but you take what you can get. I've been in remission for over 2 years, and it's been worth it. If I get Crohn's anywhere else in my system, I'll deal with it when it happens.
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I got my stoma because my colon was communitcating with parts of the body it shouldnt have been, they disconected the colon to allow the intestines to heal,
there is a good chance it is permanant, either way, Ive already decided I am keeping the bag.
People seem to have this negative perception of getting a stoma and the bag, I have found that it not only gives me the freedom to do things I enjoy, I don't even think about the toliet while im out...
It is convienient, nobody knows I have it unless i tell them..
there is a good chance it is permanant, either way, Ive already decided I am keeping the bag.
People seem to have this negative perception of getting a stoma and the bag, I have found that it not only gives me the freedom to do things I enjoy, I don't even think about the toliet while im out...
It is convienient, nobody knows I have it unless i tell them..
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I second that!
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I got mine because of multiple stricutures in my colon that were almost closed up from 16 years of inflammation/scare tissue.
If it was not for those I would have not got it done, I actually felt pretty good going into the operation. I guess on the inside it looked terrible even though I felt pretty good. So they cut everything out until they got to some healthy colon. About 2/3rds gone.
I am hoping I can get at least 5 good years out of it, and maybe some new medicine in that time. I am starting Cimzia after my reversal, and I have already failed tons of other stuff and I really don't want to take Tsybri.
If it was not for those I would have not got it done, I actually felt pretty good going into the operation. I guess on the inside it looked terrible even though I felt pretty good. So they cut everything out until they got to some healthy colon. About 2/3rds gone.
I am hoping I can get at least 5 good years out of it, and maybe some new medicine in that time. I am starting Cimzia after my reversal, and I have already failed tons of other stuff and I really don't want to take Tsybri.
