Scared and angry

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Dawn Gibson

Joined
May 4, 2012
Messages
38
Location
Southampton,
scared and angry

Hello All,

I've kind of shyed away from this sharing and caring malarky, often taking sneaky peaks at this forum without actually signing up. I'm amazed at the support you offer each other.

Recently, thanks to a liquid diet (my idea), I've been feeling much better, unfortunately I've left it too long (I'm angry that the docs didn't suggest this before and maybe I could have saved my poor colon) and am now facing an ileostomy. But in the interim, the fact that I have more energy and am generally thinking more rationally is a) allowing me to seek support and b) allowing me to come to terms with it rather than being stuck in denial.

But having said that, I am still incredibly anxious about what this surgery will mean for me in the long run.

Advice, help and all that jazz is now most welcome. I hear it really could be the best thing I ever do...could this be true?

I should add that drugs are a big no no for me. Not because I don't believe in them, but because all of them, and I really mean all, have either resulted in intolerable side-effects, or severe allergic reactions.

I await your replies!!

Cheers all,

Dawn.
 
Hi Dawn, so sorry to hear you are at this point. I had a subtotal colectomy and an ileostomy about this time last year.

It all happened in a rush so I will tell u the things I wish I had known beforehand. Firstly the STC removed my colon from the ileum to the sigmoid - leaving the sigmoid, rectum and anus. I had been told I had crohns but my surgeon thought it could be UC. So he left the remaining bits so he could form a pouch if he was right.

As it happens it was crohns!! So, last week I had to go through surgery yet again to remove the rest.

Some people just live with the defunctioning bowel that remains, but I continued with crohns in there for another year.

Sorry this is so long - at home recovering so nothing else to do lol.

The stoma has been no problem. It is liberating. Takes a while to settle and then you get into a routine. Wouldn't change back even if I could.

Get loads of info and you can make an informed decision.

Best of luck, Kaz xxx

Ps I was / am the same cant tolerate drugs
 
Thanks Kaz,

I want to be informed obviously, but I don't feel like I have much of choice to be honest. And if I leave it too long I could end up needing emergency surgery which we know is not a good thing.

They are going to do a flexi sig to see if they can keep the rectum.
 
Welcome Dawn. I have a colostomy, not an ileo. But mine was an emergency. They had to remove my sigmoid.

Quite a few members here have ileo's though. Some temporary, some permanent. All of us would say dont wait till it's an emergency! The healthier you are when you undergo surgery, the better off you will be. You will recover much faster.

I'm sorry that the meds have given you bad reactions. Even the biologics?

It is understandable to be scared and angry about what is happening to you. I hope that if it must be done, you can come out the other side happy and well. More well than you have been in years. Alot of us here will tell you that we got our lives back after surgery. That it saved our lives (literally) and we are grateful. Not that we are without issues from time to time!

:welcome:
 
Cheers Misty. Yes in fact the humira and infliximab have been the worst!

I appreciate that the surgery and the subsequent stoma is not the end of the world - but....it's still quite a big deal, and it's taking a while to get my around what life might be like.
 
Have you had a good nose around this particular sub forum? It might let you know what you are in for, good and bad, and downright hilarious as well.

Getting your head around it can be difficult, for anyone. I think unless you are practically at deaths door (and even then I fought it), it can be a very scary proposition. And it's not an easy surgery either. In my case it was worth it, or wouldnt be here today. I literally was given the, which bag, body or stoma? I took the stoma! I figured I could make the Dr's lives hell after I got better. (glad to report I have)

Once I was given that stark of choice, I never looked back. Only forward, and I'm determined to be positive. Crohns wont beat me, bastard of a disease.
 
You've hit the nail on the head there. When you are unwell, and desperate, you pretty much don't care what they do to you. But right now, I feel good, and the proposition of having to actively choose to go through a tough time with surgery is hard.

Yes I have had a look around, and I've got to say, there is a lot of positivity going around. I hope it's contagious.
 
Misty Eyed (Michelle) is the one to talk to. She was feeling great before hand and almost cancelled. I've just tagged her, so she will reply soon I think. Alot on here had planned surgery. I dont doubt they were seriously bricking it beforehand!
 
I wish I'd been in better health when I had my surgery. I waited until I was so sick that it made the recovery process much harder (no meds worked for me, and I had been on a low residue diet as well...it was keeping me from going over the edge, but I didn't feel as good on it as you). Part of the reason I was weak by the time I got to surgery was because I'd been on a low residue diet for so long that my body didn't have enough oomph to fight through some of the complications (even though I took supplements like mad).

I had worked hard to avoid getting surgery. I'm part of the group that says "thank goodness." Like Kaz, I wouldn't trade how I feel now even if I could. I'm coming up to my '1st stomeversary', and it's one of the best celebrations I can think of.

It makes sense that when you're feeling good, the decision to have surgery is much much harder. Recovering from surgery and getting used to the Weird/Wacky/Wonderful World of Stoma is not easy. Perhaps this may not be the right time for you. Or perhaps this may be the best time. At the end of the day, listen to what your low residue gut tells you! :)

Kismet
 
I don't envy the people who have had to make this decision. I, like Misty (Terriernut), got my stoma during an emergency procedure after rupturing my sigmoid colon and distending my bowel. Prior to my surgery I'd never had surgery before, and the worst thing that had ever happened to me was a broken toe. I would not have chosen to get a bag...not because having a bag is a bad thing, but because I was ignorant and scared of it. Now that I have it, it's been the best thing that's happened to me in a very long time. It gave me my life back, both figuratively and literally. I've had it for 2 1/2 years and have been med free that entire time (except for pain meds right after surgery).

It's a tough decision to make, and I don't envy you having to make it. But, we're here for you either way. Hope you can take some comfort from our stories, and maybe even have a giggle or two...we're a strange bunch! Good luck to you!
 
No one advised us. But it becomes apparent that 'they' have personalities. They are a part of us. They definetely express their oppinions! One screamed 'OH NO' right before a root canal on a patient for instance! (that was Hannah's stoma) Honestly, they can be the funniest things!

And besides, when you are in conversation in public with a friend or family member, it's better to say 'Stan is having a very strange day' than 'my stoma is having a strange day'.
 
Hi Dawn!

I had a planned total colectomy and now have a temp ileo. Deciding on surgery was sooo incredibly difficult. I changed my mind about 20 times a day, did a lot of pacing, wailing, and in the end just couldn't see the point in putting it off. Recovery from surgery was difficult, but as it turned out, I was very well informed from all of the reading and conversing with others here in this forum. Each setback I had, both my husband and I reminded each other, 'well, that's what can happen and now this is what we should do' rather than panic.

I have no regrets on my decision. It's not for everyone, but it is certainly not the end of life as you know it...well, minus the bad stuff of a sick colon. :)
 
I just wanted to say that I'm glad that you decided to join us, despite your not liking this kind of sharing. I began viewing this site about a month ago and finally joined because I think that this is the only place where I am really understood. I have not been through what you are experiencing, but I'll say that I think that your chances of a happy life are much better if you continue sharing with the fine folks on this site, many of whom are very wise and experienced about IBD. My prayers are with you and I'll keep track of your story.:us_flag:
 
Ooo sorry I've been late to the party! Been on a week long residential course at a posh hotel and was way too hung over to get on here yesterday!!!

So as you can see from just that, life with a stoma is certainly liveable! Infact, last week was brilliant. Forgot I had a bag most of the time. I think if I had been on the course before my op, it would of been harder to cope with. I would of been worrying about going to the toilet, making smells, stomach pain, bloating.. The list goes on.

The actual reality post op was so different. I had such a brilliant week, met loads of great people, ate so much of whatever the hell I liked and stayed up till 4am on the last night and drank a lot haha. My biggest worry was the fact that I had no conditioner for my hair!

To sum up, I love my bag and my stoma. I love my life and my career. People could honestly not care less about my bag. Everyone is supportive about it but now no-one really has to be because it's not a big deal for me anymore. I see having a bag as a bit like needing to wear glasses for being able to see. Sure, it's not like that from the start and life is not all roses. Everything has a down side. But please don't ever think its the end of the world. It's just the beginning of a great one :)
 
Dawn Gibson said:
You've hit the nail on the head there. When you are unwell, and desperate, you pretty much don't care what they do to you. But right now, I feel good, and the proposition of having to actively choose to go through a tough time with surgery is hard.

Yes I have had a look around, and I've got to say, there is a lot of positivity going around. I hope it's contagious.
Click to expand...

If you are feeling good then why do you need the surgery?

Have you tried LDN? Or Intravenous Immunoglobulins?
 
Dawn, I felt the best I ever had with my crohns before my op. I had lots of strictures though and I knew that if I got an obstruction that was too bad, they'd do the op as an emergency. I wanted it done in my own time and planned so I decided to go ahead.

Also rememeber that the better you feel before the op, the less risks of complications you'll have. I think alot of people on here can testify to that. I honestly wouldn't go back to life with a colon. I wish I could of had this done years ago to save so much pain and having my life held back. I'm still catching up! I know I wouldn't of been mentally ready then. I'm so mentally strong now.

I know it's hard, but always try to look at the positives. From what you've said, I think you're doing well with coping with it all :)
 
Dawn Gibson said:
I am on a liquid diet, Modulen, but when I reintroduce food I get pain. I need suregery because the colon is scarred and will not repair itself.
Click to expand...

You may have inflammation or scarring, but its important to know which.

If you did a stool test called CALPROTECTIN - widely available in England, you would know if there is any infllamation or not. It may help you reach a decision on what to do.
 
Hi Dawn, I was in very much the same shape as you in 06 when me, my other half and my GI doc had this face to face and he presented me the cold hard facts. My Lg. colon was so strictured and scared, emergency surgery was not if but when. I did have the plus of not having any know issues with my small bowel. I was in lots of pain at the time and being in pain helped me make the decission to move forward with ther Ileo surgery and a stoma was born. ('It") The worst issue for me was having "it" land on my belt line. (I am a jeans guy or was. I miss them more than my colon ; ) Good luck either way ok, it is a tough decission but once I made it, it was like taking a huge load off my shoulders. Bob E Maine
 
The pictures of the colectomy bags I've seen online on people, all look really large, and bulky like most clothes would still make them visible? Is this the case, because leaflets I was given, seem to show the bags folded up into quite a small size.

Does anyone feel ugly looking in the mirror with the stoma and bag?
As I'm classified as morbidly obese at the minute, I also worry that it wouldn't lie flat, or be positioned like it should be if I was slim. Has anybody gone from morbidly obese with active crohns to losing a lot of weight?

Misty - when you say you now live a normal life and are not held back, do you feel like there were certain things you couldn't do before? I've hated travelling for years, I avoid certain places, large cities etc, I can't walk far without panicking, things like a Sunday stroll after lunch are never in the picture for me since getting crohns - would all this magically go away if I took the surgery?
 
@perspehone300...I use smaller bags. Every company has a large range of bags you can use. It just depends on your output. My output is fairly regular and tends to be really thick so I can get away with a small bag (I also have a colostomy as opposed to an ileostomy).

I know you were asking Misty the question about a normal life, but I'm going to answer that one too...lol Prior to my stoma I couldn't travel far without knowing where every bathroom is, and even then I was a nervous wreck. Since getting Oscar I've travelled across Canada twice by car and felt great! I do everything I did prior to having Crohn's (that includes swimming, walking, dancing). It hasn't held me back at all. And, as an added bonus I get to gross my friends out....when I'm over at their place and someone gets up to go to the bathroom, I always say "I'm going right now"! It amuses me anyway..lol

Good luck to you!
 
Thank you Nyx, that sounds really promising.

Does it feel weird knowing you're going to the loo that way?? I'm a total control freak - couldn't even go on the commode when in hospital. Don't like the idea of losing that control, I'd want to hold it in!
 
I'm the same way... I won't go to the bathroom unless I'm at home. I adapted really fast to having a stoma. The relief from pain was enough to make me grateful. No longer having fear of leaving the house in case of an accident, being able to eat real food again, fewer medications, etc., is just sooooo nice.
 
I should also add that before surgery I viewed myself with a stoma as something to just hide and pass the time as quickly as possible before reconnection. I told my husband to get used to the idea of doing all of the grocery shopping because I wouldn't be leaving the house for the next 3 months. Instead, I go out wherever I want and have already had the okay by the surgeon for reconnection, but am waiting a little bit longer to do it. I think my ileostomy is WAY COOL. It's really fun to watch.

If things don't go well with my reversal, I have absolutely no problems with having a permanent ileostomy. I know that's not the case for everyone, but for me it has been a huge positive in my life.
 
persephone300 said:
Thank you Nyx, that sounds really promising.

Does it feel weird knowing you're going to the loo that way?? I'm a total control freak - couldn't even go on the commode when in hospital. Don't like the idea of losing that control, I'd want to hold it in!
Click to expand...

Well then you'll LOVE the bag. You control when and where you empty. It's great for that! That is after everything settles down of course. The first few months after surgery, you will have to empty alot more, but then the bowels adjust. I just check if I need to empty when I need to pee.
 
persephone300 said:
Thank you Nyx, that sounds really promising.

Does it feel weird knowing you're going to the loo that way?? I'm a total control freak - couldn't even go on the commode when in hospital. Don't like the idea of losing that control, I'd want to hold it in!
Click to expand...

The thing about stomas is that you can't hold it in. If the poop wants to come out, it's coming out (same with farts, can't hold them in either). There are no muscles there to stop it. But, on the bright side, you can't feel it, there's no more pushing till you're blue in the face (I was always constipated so was always trying to force things out), and like Misty said, you can empty when you want to...there's no rush.
 
Yeah I'm with everyone else. You have no idea when anything is coming out. I only know when something is in my bag when I actually feel my bag with my hand. It's great, I love it. Imagine life without never feeling like you need to go to the toilet ever again. That's how I feel. Also the output smells different, looks different and is a different consistency to poop.
 
Just a quick update from me. I'm starting to reintroduce foods, and I'm starting to get pain again.

I'm working away with people I don't know and I'm fed up of having to explain why I can't go to dinner with them. I want to eat. But I don't want to feel crap.

The problem is, it's never a good time to have surgery is it? You've always got something planned or something you can't miss. This is going to be hard. But the realisation that I can't go on like this is helping me come to terms with the fact that something has to be done.
 
Yes, there really isnt a good time for surgery. But, if you cant live like this anymore, its time. I managed to miss xmas in 2010. (actually I didnt really miss it, I was glad not see alot of people!)

But, the longer you go on, the more you actually miss of life!
 
Misty is so right. Plus if you plan it you can re-arrange plans or organise your life around it (plus get your head around it). You can't do that with emergency surgery!
 
Hi Dawn and welcome!

It's no fun to have emergency surgery, and it makes the recovery so much harder and longer because you are so sick going into it. It's really hard to make a decision to have the surgery, and in some ways the emergency surgery is easier in that way - the decision being made for you. But having done it both ways, I would always advise - DON'T WAIT! It's so much better to go into it in a somewhat healthy state.

I can't even tell you how much better my quality of life is with my stoma. No more accidents, no more pain, no more fear and anxiety of not making it to the toilet, no more ruined pajamas and underwear, no more "hot knife" shooting up my rectum. Road trips and travelling are soooooooooo much better and easier.

You'll find lots of tips and advice if you keep poking around regarding clothing options, bathing suits, bag choices, keeping on top of dehydration, thickening output, etc etc - all the things you need to know about life with a stoma.

The thing I would most like to convey is that, IMO, there is nothing gross or embarrassing about a stoma. Mine has given me such an amazing life that I can't help but love it.

Keep us posted on your progess and surgery date when you set it.

Take care - good luck - Amy
 
I will keep you updated, thanks. In fact I'm going to see the stoma nurse tomorrow to chat about the op. I guess I am still quite reluctant because I've never had a problem with being caught short. I've never had an "accident" or had to rush to the loo.

I'm just trying to keep my eye on the prize, which for me is being able to eat actual food, not the sickly sweet crap that Nestle keep telling me is "delicious"!
 
Dawn Gibson said:
I'm just trying to keep my eye on the prize, which for me is being able to eat actual food, not the sickly sweet crap that Nestle keep telling me is "delicious"!
Click to expand...

Great attitiude Dawn!! Real food is a great bonus/benefit of having the stoma! Don't be surprised if you gain some weight in the first year - most of us do because we are so excited to be eating again and have it STAY IN instead of rushing thru us like mad!!

You will do great - you have our support and will soon be part of this fun club where all the cool kids hang out!!

- Ames
 

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