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Posted 11/2/2017 3:22 AM (GMT 0)
I am absolutely ******* terrified of the idea of invasive surgery. Super terrified of the idea of 3 surgeries, super terrified of getting my organs removed one by one, stapling other parts together, super terrified of the idea of my intestine coming through an open wound in my stomach so my body can eliminate waste that I have to LOOK AT/TOUCH/CLEAN ?? Super terrified of all the experiences I read online good and bad where everyone else who's gone through this says prepare for hell. I know not every experience I read is a good one and most are out living their lives, but I really need advice on calming my mind about these procedures because even though it could save me, my fear of all this is getting the best of me. Anything that helps about the surgery itself that isn't as scary as I think it is would be really helpful for me right now. I can't even sleep at night lately and I know that doesn't make things any better.
Posted 11/2/2017 5:03 AM (GMT 0)
I wouldn't sit around focused on surgery unless it's actually something that you see facing you in the future. You very well could get worked up for nothing and make yourself sick with stress. I personally was always worried about surgery, literally since my proctitis diagnosis. I read about worst cast scenarios and it kept ending with this awful, invasive surgery. I thought to myself "i'd rather lose a limb". Now, here I am without a colon and I am fine. I am so thankful I didn't give up a limb, or even a toe. The worst part for me now is the stoma scar. Without that, you would never know I had stapled parts or an intestine coming through, or whatever else you describe. I was on prednisone for so long and I had gained a lot of weight, I hated how I looked... being post surgery, I have my old body back. I am so much more confident about myself. I traded all the drugs, expenses, time-consuming doctors appointments for a petite figure and a scar.

Where do you get this idea about stapling parts or even three steps? Most people qualify for two steps. I don't think the surgeon is in there stapling everything everywhere. That sounds unlikely. Just go on a consult and get a realistic view of what surgery entails. Mine wasn't all that invasive. My pain was managed, I was in and out without complications - definitely not "hell". It's just time consuming and expensive, a good support system is imperative. I love the freedom of being off drugs, being able to eat what I want, not needing doctors, not spending on medical expenses, being able to pick up and go without worrying about "what if"... there are some really great things about life without UC.

having an ostomy is just something you have to get though. You don't have to touch it really, or look at it. Most of the pouches come in opaque and all you do it empty from the tail end. Every 5-7 days you change the wafer. You look at it at that time, but it's not so different from looking at any body part, and it's temporary in the case of a j-pouch. Have you had an upper series? You need to make 100% sure you're a candidate for a jpouch.
Posted 11/2/2017 5:32 AM (GMT 0)
I am having the surgery, it's just the "when" that is up in the air. Sorry I must have made it sound like I'm not, but I am I just don't have it scheduled. I have a consult in a month which was the fastest I could get in, and then the surgery following. I do qualify for jpouch but my GI said given that I am in a bad year long flare it would most likely be done in 3. I just am scared of all that could happen and waking up to horrible pain, throwing up, gross sites, possibilities of this and that. I'm a huge worrier. The time consuming stuff, I can deal with. The flares are time consuming enough that I can put up with a recovery. That is my thought process as well I told my boyfriend I would rather lose a finger! Interesting I'm not the only one that thought that. I've reached out to a few people and read some blogs and there's just so many recounts saying it was hell, non stop throwing up bile with your wound hurting everytime, not being able to even sit up on the side of the bed without this crazy pain in your stomach, tailbone, even shoulder? I just feel like there's so much to worry about and it is really hard because ultimately I do want my life back I just question if I'm strong enough to endure all that that takes sad



notsosicklygirl said...
I wouldn't sit around focused on surgery unless it's actually something that you see facing you in the future. You very well could get worked up for nothing and make yourself sick with stress. I personally was always worried about surgery, literally since my proctitis diagnosis. I read about worst cast scenarios and it kept ending with this awful, invasive surgery. I thought to myself "i'd rather lose a limb". Now, here I am without a colon and I am fine. I am so thankful I didn't give up a limb, or even a toe. The worst part for me now is the stoma scar. Without that, you would never know I had stapled parts or an intestine coming through, or whatever else you describe. I was on prednisone for so long and I had gained a lot of weight, I hated how I looked... being post surgery, I have my old body back. I am so much more confident about myself. I traded all the drugs, expenses, time-consuming doctors appointments for a petite figure and a scar.

Where do you get this idea about stapling parts or even three steps? Most people qualify for two steps. I don't think the surgeon is in there stapling everything everywhere. That sounds unlikely. Just go on a consult and get a realistic view of what surgery entails. Mine wasn't all that invasive. My pain was managed, I was in and out without complications - definitely not "hell". It's just time consuming and expensive, a good support system is imperative. I love the freedom of being off drugs, being able to eat what I want, not needing doctors, not spending on medical expenses, being able to pick up and go without worrying about "what if"... there are some really great things about life without UC.

having an ostomy is just something you have to get though. You don't have to touch it really, or look at it. Most of the pouches come in opaque and all you do it empty from the tail end. Every 5-7 days you change the wafer. You look at it at that time, but it's not so different from looking at any body part, and it's temporary in the case of a j-pouch. Have you had an upper series? You need to make 100% sure you're a candidate for a jpouch.

Posted 11/2/2017 11:43 AM (GMT 0)
I had my 2 step starting in October 2015 and takedown in Feb 2016. I had no choice for surgery, my quality of life was absolute crap, I was a prisoner to my home, no medications worked anymore. Surgery is going to be a different experience for everyone and mine gave me my life back. I'm living life medication free and doctor free and as "normal" as possible with a J Pouch. I'm doing things I could never dream of in my last few months before surgery. In no way is the surgery easy, it's a huge adjustment for your body to go through. I had to have open surgery so I woke up with the long incision in my belly. I didn't know I would have the long incision going into surgery, he wasn't able to do it robotic due to some previous scar tissue. Recovery was rough but I wouldn't consider mine "hell" even tho I had some complications following my initial surgery. I didn't throw up once either. There was pain but nothing that I would consider unbearable. You will have pain management to make sure you are comfortable. I never had pain in my tailbone or shoulder either. Again, I had a few complications following surgery and even with what I dealt with, I would go through it all again. The stoma was no big deal, I knew it was only temporary so it never really bothered me. I've also had a colostomy in the past so I kind of knew what to expect. Try not to worry about things that may not even happen to you, that will definitely keep you up at nights. Your body will adjust, your body will heal, just try to keep thinking it's a step to getting your life back.
Posted 11/2/2017 2:31 PM (GMT 0)
There's things we do that might be temporarily unpleasant that produce a better outcome, so we go through with them anyways. As an example, we hate the complexity and tedium of doing our taxes, and actually writing a check to the government. However, we do it because it is necessary and better than the consequences of not doing it. Everyone has some anxiety about a surgery which is normal, but it usually isn't crippling or overwhelming as you describe it is to you.

Everyone has their "I will never's" and it turns into a reluctant yes once there is no other way. For example. "I will never take a biologic" is a common sentiment expressed on the forums here, until there's no other option that works, I've been suffering for 6 months in an awful flare and then it becomes a must and a reluctant yes. Same goes for surgery for many of us, "I will never have surgery" is another common sentiment here, but now there's no other option and it should become a reluctant yes.

Have you considered having appointments with a therapist who treats for medical-phobias? You have a while until your surgery consultation and until the procedure itself, and that might be a great time to talk with an expert with such fears. I've read your posts in this and the prior thread on this topic and I do believe there is a medical-phobia involved and that's something that I wouldn't leave untreated. I know phobias are very pervasive, overwhelming, terrifying, and very difficult to treat on your own. My dear wife has medical-phobias, so I know 1st hand how powerful they are, and not to be taken lightly. Reading your posts, it sounds like my wife could have written them. She always adds visceral words that emphasize the thoughts of being stapled, cut, and gets very emotional and distant when such things are brought up ("I'd rather die than get stitches" is one example she's repeated). To that end: phobias are not at all rational, they're a protection-mechanism from our subconscious animal-brain, based on prior exposure to something that traumatized us. There's no rationalizing yourself out of a phobia. If there was then nobody would be afraid of spiders, no reason a 150 pound adult should be scared of a 1-gram, non poisonous spider right? Done, phobia gone. Doesn't work that way, no easy button.
Posted 11/2/2017 2:56 PM (GMT 0)
Pain is temporary.

I bet most women don't remember the extreme pain they had when they had kids either and would do it all again for their kids.

If the pain is what scares you, then don't worry cause it won't kill you and again it's only temporary...
Posted 11/2/2017 5:04 PM (GMT 0)
Oh yeah it's the worst--SO painful, SO gross, HORRIBLE scars, your life as you know it will never be the same and your boyfriend will probably dump you.
Posted 11/2/2017 5:21 PM (GMT 0)
Let's be nice.

Most everyone who has responded to this thread has had the surgery and can attest that it isn't that bad. However, with a phobia no amount of reassurance can truly satisfy a fear... only the absolute worstcase scenario resonates.
Posted 11/2/2017 5:40 PM (GMT 0)
Nice, you come on a forum that people need extra support to make fun of them. Even in a UC forum you still cant get away from nasty people. This is a support forum not a bullying forum. You have no idea what I have been through and why I have these fears, and I dont know why you are responding if you arent looking to help. Get out of here.

Plucky said...
Oh yeah it's the worst--SO painful, SO gross, HORRIBLE scars, your life as you know it will never be the same and your boyfriend will probably dump you.

Posted 11/2/2017 5:43 PM (GMT 0)
Yea i will absolutely consider looking into talking to someone about my fears because i feel like it definitely is considered a phobia at this point. Thank you for the advice

iPoop said...
Let's be nice.

Most everyone who has responded to this thread has had the surgery and can attest that it isn't that bad. However, with a phobia no amount of reassurance can truly satisfy a fear... only the absolute worstcase scenario resonates.

Posted 11/2/2017 5:50 PM (GMT 0)
Just FYI I did throw up twice after my initial surgery the 2nd day or so after in the hospital while trying to eat pudding for the first time. It's painful, but again, temporary. It won't kill you. You throw up, cry a little bit from the pain, move on and things improve. No biggie.
Posted 11/2/2017 6:17 PM (GMT 0)
Sorry I forgot to share my condition again in this post but I've been in a severe flare for a year now and after finding dysphasia in my last scope biopsies and failed medications and incisions surgery has been discussed as next step I just haven't scheduled the procedure yet I am consulting in a month as the soonest appointment. I know my mind is very powerful and the surgery itself does very much scare me but also all the thinking and stressing I do over the what ifs absolutely makes it worse. I also am aware that fearing it isn't going to make anything better but right now I'm just struggling after reading stories online I just wanted to know if it was as bad as some people make it out to be or as bad as I make it out to be! I would love to live with some buddhists after all this stuff passes lol


Connor77 said...
I lived with Buddhists for many years and learned a great many useful tools to deal with fear. The thing to realize about fear is that unless something is immediately coming at you like a bear attacking you or an oncoming car, then your mind is playing tricks on you. Look around you right now, are you safe? Is everything OK in this moment?

Yes, the awareness that you may need surgery is real, but like any situation, you deal with it when the time comes. Like you said in your first sentence: the IDEA of surgery absolutely terrifies you. Put that idea aside, and what happens? Are you less fearful?

Please note I'm not saying you should or shouldn't get surgery. I'm talking about your own mind in this moment being in a state of attachment to fear. If you remove that attachment then you won't be afraid anymore and you'll just continue dealing with life moment to moment as you always have.

Another thing that could help is sharing the details of your condition with us. Do you actually need surgery soon or was it just suggested to you? Because a lot of people live with UC who never get surgery. Doctors might talk about it with you because they need you to know the potential course of the disease, but not everyone gets to that point. Maybe you will, or maybe you won't. The point is, right now you need to chill. You're safe and loved.

Posted 11/2/2017 11:16 PM (GMT 0)
Hi. Just wanted to share my experience to try and calm your nerves if anything.

I was diagnosed with Ulcerative Colitis in May of 2015 and for over 2 years was very very sick. To the point of being hospitalised and nothing at all working for me medication wise. I took the decision along with my gastroenterologist to have elective surgery in July of this year. In the weeks leading up to to my surgery I was severely ill. I couldn’t get out of the house and would go to the toilet at least 10 times within the first hour of waking up. It was all blood and mucus. It got to the point where I was missing work and generally feeling so awful. I was down to 60kg at this point which is by far the lightest I have ever been!

Anyway, I had surgery in July and I will admit the learning period was tough. Not in the sense of being painful or anything, it was tough in the sense of your body having gone through a huge change and learning to adapt with a new concept. I won’t lie to you and say it was plain sailing. However, 4 months into having a stoma I can quite happily tell you that it was the best decision I have personally ever made. My life has turned around completely and I am now able to live normally again! People barely notice that I have a bag and if anyone ever questions it, I just reply honestly and confidently. They usually are cool with it. Cleaning, touching it and living with it in general is very easy once you’ve become used to it and it is much MUCH easier than having to deal with colitis! I personally wish I had my surgery sooner.

You must remember though that this is my personal experience and views on it. You have to ultimately do what’s right for you! No matter what anyone else tells you. This was purely just a post to try and ease your mind should you decide to have the surgery.

If you have any questions, I would be more than happy to help so feel free to contact me.
Posted 11/3/2017 12:42 AM (GMT 0)

NeedUChelp said...
Nice, you come on a forum that people need extra support to make fun of them. Even in a UC forum you still cant get away from nasty people. This is a support forum not a bullying forum. You have no idea what I have been through and why I have these fears, and I dont know why you are responding if you arent looking to help. Get out of here.

Plucky said...
Oh yeah it's the worst--SO painful, SO gross, HORRIBLE scars, your life as you know it will never be the same and your boyfriend will probably dump you.

Don't edit your post after you called an ostomy "gross" and then come back to play the victim because I gave you a salty response to your *repulsion* at the mere thought of an ostomy. I just had my surgery last week and you came on *this* forum asking people how they deal with how *gross* an ostomy is. The irony. There is seriously something wrong with you and it's not UC and it's not fear. How DARE you say what you said, then edit your post, then try to shame me--a sick person who was offended by your post.
Posted 11/3/2017 2:25 AM (GMT 0)
??? I never edited my post? Don't even know how to do that on here. I will absolutely post how I feel about new things on my own posting, they are my feelings about what I'm about to go through. [edited for language] out of here with your [edited for language]. I've been sick TOO since UC since I was 2 "sick person", doesn't mean I am wrong whatsoever to feel new body changes are gross and weird. You're not the only one who is sick here and not everyone is going to feel the same way. If I'm not comfortable with seeing them than I'm not. There is nothing [edited for language] wrong with me, I am just a sick girl who is scared of these new changes and have phobias about the body and surgical procedures. There's something wrong with YOU for coming at me for it. Get off my post if you're here to criticize me I sure as hell don't need your ridiculous negativity.


Plucky said...

NeedUChelp said...
Nice, you come on a forum that people need extra support to make fun of them. Even in a UC forum you still cant get away from nasty people. This is a support forum not a bullying forum. You have no idea what I have been through and why I have these fears, and I dont know why you are responding if you arent looking to help. Get out of here.

Plucky said...
Oh yeah it's the worst--SO painful, SO gross, HORRIBLE scars, your life as you know it will never be the same and your boyfriend will probably dump you.

Don't edit your post after you called an ostomy "gross" and then come back to play the victim because I gave you a salty response to your *repulsion* at the mere thought of an ostomy. I just had my surgery last week and you came on *this* forum asking people how they deal with how *gross* an ostomy is. The irony. There is seriously something wrong with you and it's not UC and it's not fear. How DARE you say what you said, then edit your post, then try to shame me--a sick person who was offended by your post.

(Edited for language)

Post Edited By Moderator (iPoop) : 11/3/2017 9:08:06 AM (GMT-6)

Posted 11/3/2017 2:30 AM (GMT 0)
Thanks for sharing with me! I appreciate it. I too, can't leave the house anymore and called out of my shortened shift tonight because I just can't do it anymore . I know logically, surgery is the best and only option to save my life, based not only on my symptoms scopes and dysphasia findings, it's just the letting go and allowing someone to cut me open and change around my whole body is such a hard thing for me. Although not permanent, it's just hard for me to mentally get myself to that With my huge surgical fear, and hard time not being able to control things so also fearing complications, following new symptoms, etc. I'm really glad to hear that the surgery made you feel good again. Did you have it in two steps or 3? And have you completed it all yet?


VSingh said...
Hi. Just wanted to share my experience to try and calm your nerves if anything.

I was diagnosed with Ulcerative Colitis in May of 2015 and for over 2 years was very very sick. To the point of being hospitalised and nothing at all working for me medication wise. I took the decision along with my gastroenterologist to have elective surgery in July of this year. In the weeks leading up to to my surgery I was severely ill. I couldn’t get out of the house and would go to the toilet at least 10 times within the first hour of waking up. It was all blood and mucus. It got to the point where I was missing work and generally feeling so awful. I was down to 60kg at this point which is by far the lightest I have ever been!

Anyway, I had surgery in July and I will admit the learning period was tough. Not in the sense of being painful or anything, it was tough in the sense of your body having gone through a huge change and learning to adapt with a new concept. I won’t lie to you and say it was plain sailing. However, 4 months into having a stoma I can quite happily tell you that it was the best decision I have personally ever made. My life has turned around completely and I am now able to live normally again! People barely notice that I have a bag and if anyone ever questions it, I just reply honestly and confidently. They usually are cool with it. Cleaning, touching it and living with it in general is very easy once you’ve become used to it and it is much MUCH easier than having to deal with colitis! I personally wish I had my surgery sooner.

You must remember though that this is my personal experience and views on it. You have to ultimately do what’s right for you! No matter what anyone else tells you. This was purely just a post to try and ease your mind should you decide to have the surgery.

If you have any questions, I would be more than happy to help so feel free to contact me.

Posted 11/3/2017 2:38 AM (GMT 0)
This is the best advice I can give you....(oh...I have a colostomy..just a heads up...lol)

Once I came out of surgery...the pain was ....changed...different....it seemed manageable. Concentrate on that....and on all of the things you are going to be able to do once you feel better. I also recommend you speak to someone about this for support and ensure your CRS and GI know your thought on this.

Be prepared for a quick hard learning curve...cause you have to deal with recovery from surgery, emotional balance AND learn how to care for yourself and you ostomy. And this IS one of those times where you need to have a positive attitude. (It will help you so much)

I wish you the best of luck! Hopefully you will keep us updated and let us know how it goes.

Clo
Posted 11/3/2017 3:06 AM (GMT 0)
Thanks for your help! I guess I just wanted to see if it was manageable or if it is as hellish and miserable as so many postings/stories I have read. I'm going to have a big talk about all my anxieties with my potential surgeon at my consult for sure and see what more I can do about all my worries from everything I've read and stuff. I'm glad to hear it wasn't too bad for you. So are you sticking with a colostomy instead of jpouch and what was your deciding factors for that if you don't mind sharing?


clo2014 said...
This is the best advice I can give you....(oh...I have a colostomy..just a heads up...lol)

Once I came out of surgery...the pain was ....changed...different....it seemed manageable. Concentrate on that....and on all of the things you are going to be able to do once you feel better. I also recommend you speak to someone about this for support and ensure your CRS and GI know your thought on this.

Be prepared for a quick hard learning curve...cause you have to deal with recovery from surgery, emotional balance AND learn how to care for yourself and you ostomy. And this IS one of those times where you need to have a positive attitude. (It will help you so much)

I wish you the best of luck! Hopefully you will keep us updated and let us know how it goes.

Clo

Posted 11/3/2017 3:33 AM (GMT 0)
My diagnosis was changed from UC to Crohns disease after I developed fistulas.

Now....my GI has stated that I can be reconnected in the future but with Crohns disease and the likelihood of it returning to to the resection portions...I think I will keep the colostomy.

As far as the changing the bag....I too freaked out about it. (I can't even stand needles) The first time I had to change my bag by myself I had to lie down twice, I broke out in a cold sweat and thought I was going to faint. Within 3 weeks it was no big deal...and I had some pretty big complications AND I am 57.... BTW...I still haven't touched any stool or output since I had my surgery. Before there were accidents galore and output everywhere. I am much cleaner with the colostomy.

It is what you make of it. The hurtle of deciding to go thru with the surgery is one of the scariest parts. When they were wheeling me down I just kept envisioning what I was going to do afterwards and how much my life..and my husband and kids lives....would improve. (And we stopped the gurney twice because I still didn't know if I wanted surgery..and I had an obstruction....with fever, cramping and pain. I had to wait for another pain to hit me and I would say...no no keep going. It was just a brain fart...lol) And when I woke up I thought what was the big deal?

My friend has a jpouch. He is older than I am. He was retired when he went thru all of it. After he healed...he felt so good he went back to work building houses. Said he could not believe how much better he felt and how much more energy he had. He had UC.

So there are positives...just know you have to face your fears during your journey.

I will say...this forum has helped me tremendously...so just know we are here for you.

Clo

Post Edited (clo2014) : 11/2/2017 9:39:40 PM (GMT-6)

Posted 11/3/2017 6:07 AM (GMT 0)
No problems. Glad I could help. I completely understand where your coming from regarding the letting go. But you’ve got to remember that this Surgery is a commonly done procedure and your surgeon will have plenty of experience in performing it. It to was a difficult decision for me as it is for probably everyone who has it.

So currently the initial plan was to have it in 3. I’ve had the first step and gotten back to living such a normal life again that I’ve not even thought about the next two steps. At the moment I’m pretty happy with the way things are and am not planning on getting the next steps done but that’s me. By the sounds of it you want to have it all done and dusted as quickly as possible which is totally understandable. By my recollection, you can have the surgeries with as little as 3 months between each stage (someone will come and correct me if I am wrong). As I say it’s really not as bad as it seems. Best of luck with it all! There is light at the end of the tunnel! 😀

NeedUChelp said...
Thanks for sharing with me! I appreciate it. I too, can't leave the house anymore and called out of my shortened shift tonight because I just can't do it anymore . I know logically, surgery is the best and only option to save my life, based not only on my symptoms scopes and dysphasia findings, it's just the letting go and allowing someone to cut me open and change around my whole body is such a hard thing for me. Although not permanent, it's just hard for me to mentally get myself to that With my huge surgical fear, and hard time not being able to control things so also fearing complications, following new symptoms, etc. I'm really glad to hear that the surgery made you feel good again. Did you have it in two steps or 3? And have you completed it all yet?


VSingh said...
Hi. Just wanted to share my experience to try and calm your nerves if anything.

I was diagnosed with Ulcerative Colitis in May of 2015 and for over 2 years was very very sick. To the point of being hospitalised and nothing at all working for me medication wise. I took the decision along with my gastroenterologist to have elective surgery in July of this year. In the weeks leading up to to my surgery I was severely ill. I couldn’t get out of the house and would go to the toilet at least 10 times within the first hour of waking up. It was all blood and mucus. It got to the point where I was missing work and generally feeling so awful. I was down to 60kg at this point which is by far the lightest I have ever been!

Anyway, I had surgery in July and I will admit the learning period was tough. Not in the sense of being painful or anything, it was tough in the sense of your body having gone through a huge change and learning to adapt with a new concept. I won’t lie to you and say it was plain sailing. However, 4 months into having a stoma I can quite happily tell you that it was the best decision I have personally ever made. My life has turned around completely and I am now able to live normally again! People barely notice that I have a bag and if anyone ever questions it, I just reply honestly and confidently. They usually are cool with it. Cleaning, touching it and living with it in general is very easy once you’ve become used to it and it is much MUCH easier than having to deal with colitis! I personally wish I had my surgery sooner.

You must remember though that this is my personal experience and views on it. You have to ultimately do what’s right for you! No matter what anyone else tells you. This was purely just a post to try and ease your mind should you decide to have the surgery.

If you have any questions, I would be more than happy to help so feel free to contact me.

Posted 11/3/2017 11:25 AM (GMT 0)
I must admit, as somebody with Crohn's who had a stoma for 2 years and will almost certainly end up with a permanent stoma for life at some point, I get a bit tired of hearing people call stomas gross on an IBD forum. One person a while ago said they'd rather die than live with a permanent stoma - like, okay, I don't want to censor your freedom of speech, dude, but I should also have the freedom to say how that makes me feel. Which is, like utter crap.

I'm not going to lie. I never wanted surgery and I can't relate to most people's experiences of it. I hated the whole process both times - after my first surgery I was the most emotionally damaged I had ever been for at least 2 years afterwards (not helped by two very difficult drug withdrawals). Luckily the second surgery wasn't nearly as bad, apart from 2 weeks of hell with an ileus. And then I had months of physical recovery, getting up 4-5x a night to go to the toilet, extreme urgency in shops, etc. But at least I didn't go through another mental breakdown.

Frankly, while I am grateful to my doctors for being as good as they have been, I would much, much, much rather just never have had got Crohn's in the first place. I'm not somebody who can wax lyrical about surgery, even though in the long run it did undoubtedly save my life.
Posted 11/3/2017 2:56 PM (GMT 0)
It's not the stoma/bag idea itself that is gross to me. It's the idea of seeing my intestine is gross to me. I don't like seeing my own blood. So I absolutely have every right to feel scared or disturbed by seeing body parts like that that freak me out, not everyone is going to have the same tolerance of what they are comfortable with. It's a mental thing for me and this is my post on trying to get comfortable with the idea of it, and getting cut open (huge phobia of mine). If and when I have my stoma/bag and someone looked at it and said it was gross, I would be like man screw you absolutely!! But I'm not one of those people. I'm someone trying to adjust to it just like everybody else did in their way and if I need to express myself and see how people deal with these things i will. It's not going to magically go away when I have huge fears of body parts and blood, etc. And yea I bet you and anybody else would rather have just had good health than successful surgeries, I certainly feel the same way. I wish I could have perfect health like all my sisters
And not even have to think about this but that is life I suppose

NiceCupOfTea said...
I must admit, as somebody with Crohn's who had a stoma for 2 years and will almost certainly end up with a permanent stoma for life at some point, I get a bit tired of hearing people call stomas gross on an IBD forum. One person a while ago said they'd rather die than live with a permanent stoma - like, okay, I don't want to censor your freedom of speech, dude, but I should also have the freedom to say how that makes me feel. Which is, like utter crap.

I'm not going to lie. I never wanted surgery and I can't relate to most people's experiences of it. I hated the whole process both times - after my first surgery I was the most emotionally damaged I had ever been for at least 2 years afterwards (not helped by two very difficult drug withdrawals). Luckily the second surgery wasn't nearly as bad, apart from 2 weeks of hell with an ileus. And then I had months of physical recovery, getting up 4-5x a night to go to the toilet, extreme urgency in shops, etc. But at least I didn't go through another mental breakdown.

Frankly, while I am grateful to my doctors for being as good as they have been, I would much, much, much rather just never have had got Crohn's in the first place. I'm not somebody who can wax lyrical about surgery, even though in the long run it did undoubtedly save my life.

Posted 11/3/2017 3:09 PM (GMT 0)
NeedUChelp, please respect the forum rules regarding foul language or I will lock this thread. This is a family-friendly-themed forum system. Lashing out and attacking others is also against rules.

Consider yourself warned.
Posted 11/3/2017 3:47 PM (GMT 0)
? When did I use foul language in that post, I said if someone were to say that to me that is what I would say. I'm just defending myself and my right to feel scared like anyone else can. I didn't come on here for people to judge me I came here for advice. You saw I was attacked on here making fun of me like "your boyfriend will leave you" and stuff just because I don't know how to deal with this stuff? This surgical stuff and all it's aspects are new to me and I didn't come on here to be criziticized.

iPoop said...
NeedUChelp, please respect the forum rules regarding foul language or I will lock this thread. This is a family-friendly-themed forum system. Lashing out and attacking others is also against rules.

Consider yourself warned.

Posted 11/3/2017 4:00 PM (GMT 0)
Please no cursing, that's what I edited out. A little less of a confrontational approach would greatly be appreciated. Loosing my patience...

And you are insulting members who've had the surgery by your choice of words.
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