Dreading making the wrong decision

[NiceCupOfTea]

First off, yeah, I'm new here, told my story in My Story, if you want to know my background. If you can't be arsed with the long version, the short version is this:

Crohn's for 12 years, mild to severe, all meds failed, colorectal surgeon, option of a permanent ileostomy if I want it.

Not had any surgery up to date. I have been badly ill at times, but most of the time I'm in some twilight zone where I'm not critically ill but not well either.

Currently on methotrexate and Remicade and feel rundown as hell, really.

Stomach just plagues me nearly all the time. Not in acute pain, but can't ignore the symptoms, which cause me stress and anxiety.

Have more-or-less decided I'd rather lose my colon and have a stoma than live in this dreary twilight where I'm terrified of the next acute flare-up. But every so often I break into a cold sweat and wonder what the hell I'm doing. Do I even sound ill enough for such a drastic operation?

 

[NiceCupOfTea]

Oh yeah, and if it's not obvious by now... the anxiety over the last few years has ground me down. I'm depressed :-/

 

[Ckt]

Nicecupoftea..I am so sorry you are having to go through this!i completely understand the grinding down of the spirit by illness. I'm not sure I can offer anything but compassion and understanding to you! I am clinically in remission but my quality of life sucks. I'm either in the bathroom or afraid ill be headed that way but all my labs, cat scans, colonoscopy shows I don't have active disease at the moment. I just came back from another trip to the er..in which I was told I have chronic pain syndrome..a nice way of saying its psychological. How nice. I'm sure if it were all in my head I wouldn't be in the toilet or chained to my house. I do not want to be sick..let me refrain that.. At this point I'd either like it to show up somewhere and be really sick or go about my life. The doctors make it sound as if I am making all this up for laughs and giggles. I used to feel like I knew my body best but now they have me questioning it.
I'm just tired..and to be honest, I'm not sure why I'm sticking around.. I don't have children, no one depends too much on me. So why not just pull the plug?hey but thats just me. I'm miserable and get pithy suggestions like try therapy(am IN THERAPY!), try alternative medicine(I've done them all),whatever..I feel done.

 

[NiceCupOfTea]

Thank you...

I feel so bad on behalf of people who have physical problems but no clinical evidence, because I know doctors just basically ignore you otherwise. Or tell you that it's IBS (or in your case chronic pain syndrome), which is equivalent to giving up and saying they don't know - but they don't want to put it like that.

Now I just feel worthless for feeling like I've 'caused' my own disease. I feel as though you do, I just feel done.

And I definitely shouldn't have joined... :-/

 

[Ckt]

No, you should have joined the forum!! I have known crohns disease and have had 6 bowel resections..it's just my clinical snap shot in this period of time doesn't show much. I'm switching to cimzia tomorrow if it comes in the mail. And regardless of what the experts say, here we are..
I do know if I could so choose it, my life would be much more full and have a better quality. I know you feel the same way! I am in a dark spot right now so listen to others too that can give you hope! I'm supposed to go to Chicago for a second consult but after he reviewed my records his nurse said there's no indication for surgery. Maybe not. At this point I'm grasping. And I know it!
I have heard from others in the ostomy sub forum that it has changed their lives for the better..maybe you should have a look in that forum too. If you have the option...well, it is an option..take care!!

 

[Tenacity]

Welcome to the forum

You did the right thing joining - you will find a wealth of information from people who have lived it, and so much support and kinship.

Your question about whether to take out your colon, and have an ileostomy - why don't you consider leaving in your colon, and just have a loop ileostomy. This way, you could have it reversed when you are feeling better and have mucosal healing.

 

[NiceCupOfTea]

Jesus, 6 bowel resections. That's serious stuff.

Literally nothing useful to offer, but I hope something changes for the better, and soon, not like in two years or something.

I'm in the Ostomy subform - aren't I? <_<

You take care, too. Hope this dark cloud lifts for both of us :-/

 

[NiceCupOfTea]

Oops, that was to Ckt, your reply wasn't there, Tenacity. I'll edit my post to add my reply...

Edit: Well, a quick google hasn't helped a lot... Can't tell the difference between that and a temp ileostomy without doing more googling, but nobody seems to be thinking of a temporary ileostomy in my case - I suppose because, with the Crohn's, there's no chance of a takedown.

I did mention it to one doc - GI, not a surgeon - and he seemed to say that most temp ileostomies turn into end ileostomies in the end, at least with Crohn's. For some reason I have not brought it up with the colorectal surgeon herself (yeah, she's a woman). She's a bit formidable :-/

 

[Ckt]

Nicecupoftea..aren't they all?formiable that is! but don't let them intimidate you..I'm a nurse and as far as I'm concerned they can blow that ego tripping out their own backsides!!haha!
Isn't it funny that even with a quite distinctive history I get that psychology speech??i have to laugh..after I get mad that is!
Maybe if you can read how others handle this illness..this has really helped me to no end! At least I know here I can speak my mind and get support!
You have every reason to feel angry,down,discouraged..of course you feel this way!! And you aren't alone by any means!
I won't insult you by suggesting you take up under water basket weaving or any other such things..not to down play hobbies..I knit;bead,do art. And read fantastic books when I can. I does help get my kind off things to a degree but if the symptoms go over that hidden line, no amount of diversions can rid me of them.take care Hun..and I'll be thinking of you!

 

[2thFairy]

Welcome to the forum!

I had my colon yanked due to UC and hadn't had anywhere near the number of issues or complications of IBD that others around here had before surgery, but when the time came, I was ready for surgery.

I also suggest that you consider a temp ileostomy and see how you do with that first. I have a temp, but have decided to keep it long term. I like the stoma, but I'm sure a lot of my acceptance was based on knowing it was temp. However, I feel so good now that I don't want the reversal just yet even though the doc says I can.

 

[NiceCupOfTea]

@Ckt - Another thing about surgeons is that they do just seem to want to cut things out. I've never had a GI recommend surgery to me, but surgeons, they're like, "Let's cut that shit out, yo" <_<. I didn't find this out until later on from my consultant, but when I was in hospital nearly a year ago, there apparently was a disagreement between the gastros and the surgeons over surgery. The surgeons wanted to operate, the gastros wanted to wait and see if Remicade would work. Gastros got the final word that time.

Love the psychology speech; think they'll still be giving it to you after your 10th resection?

Hobbies are truly the next best thing after supportive family and friends, I believe. Unfortunately I have the concentration span of a goldfish with dementia at the moment, so it makes it hard to do anything. Probably a combination of depression, braindeadness and physical discomfort, in no order. I'm hoping if I can get rid of my painful and sore colon, I'll have energy enough to tackle the mental issues.

@2th fairy - Thanks!

Glad that surgery was a success for you. It's also kind of good to hear from somebody who had it done who wasn't in a dire state and was happy with that; I have a bad habit of comparing myself to other people and feeling like their symptoms are oh-so-worse than mine.

I'm not sure a temporary ileostomy will be an option for me; the j-pouch certainly isn't. I'll see if I can pluck up the courage to ask the surgeon's opinion about it though...

 

[Ckt]

:rosette1nicecupoftea..so true about medical vs surgical mds! I was in the hospital on my vacation in the isle of sight this past April and the two teams had a fight over me! The a & e docktr warned me..then he visited me on the ward and said..see?its all politics! Some things are universal! I figure 1) if it really is my body then 2) why can't I have the whole shebang cut out if I want it to prevent possibly more resections and further pain and suffering?! I found out today that the second consultant I'm supposed to see in Chicago reviewed my chart and doesn't see a clear indication for surgery there. So I'm trying to make another appointment with..yes..the surgeons there for a consult..or to a surgeon here for one..I don't really care! Do I know it doesn't cure crohns?yes I do..do I know I may still get obstructions?yes..am I willing to try it anyway at this point?(having tried diet, acupuncture,Ayurvedic, therapy,hell..I'd probably try dousing or oujii boards at this point!)..
I've also tries physical therapy..unr I had so muc diarrhea I couldn't go to them anymore! Hey! But my labs are good!!
Hobbies are good and I shouldn't poo poo them at all. Work would be even better..and getting away from this Podunk town I'm in!they think eve retinue here is all about the drugs..as in narcotics. They are beyond crazy on the hunt for anyone using them in any way. I don't like to use them at all. Hopefully someone will hear us and keep us positive and open to whatever works!

 

[NiceCupOfTea]

Did they fight in front of you? That would have been kind of cool...

Tbh, after six resections, I would have thought you'd be close to the point where short bowel syndrome would become a reality. I don't really know though, so forgive me if I'm talking out of my arse.

Anyhow, if you want a green light for surgery, see a surgeon every time! GIs on the other hand seem intrinsically suspicious of surgery - quite the opposite.

You've tried more than I'm prepared to... >.> I might be more willing to try new things if I had a considerably higher confidence in them actually working. But a) I don't really expect them to work and b) I don't have the patience left. I suspect my colon is simply knackered to the point where, even if I went into remission, I would still have symptoms. It has not had much respite in its life. As a child and teenager I had dreadfully bad constipation, a few short years of normality in my 20s, and then Crohn's.

Work would be nice, too; brilliant, if I could find a full-time job I'd actually be fairly content in...

Pfft, the Americans are crazy about drugs, and by 'crazy' I mean weird.

And for no other reason other than I like them... :strawberry:

 

[2thFairy]

As a child and teenager I had dreadfully bad constipation, a few short years of normality in my 20s, and then Crohn's.

Yeah... me too! (Well, not Crohn's, but UC.)

 

[NiceCupOfTea]

RIP our colons... :-/

 

[Tenacity]

NiceCupOfTea - you won't need a j pouch or take down if you have a temp ileostomy reversed

They simply create a stoma without removing any colon. If and when you want it reversed they just hook it up again. There is no j pouch or anything complicated.

There are many people who have crohn's, who have had temp ileostomies, and a successful reversal. At least you would have to option to have it reversed if you wanted to. It would also give you bowel rest to let everything heal up nicely before reversing it.

 

[Terriernut]

Nice cuppa welcome! I did just read your whole my story. I still have questions though! You have been on several drugs alright. But what I want to know is, is it only affecting your large bowel or have you had further issues elsewhere in your battle with this &£:,?@ disease?

This will help me and others give you a better response. And yes, I get the fed up sick and tired and depressed bit very well indeed.

 

[Misty-Eyed]

I wasn't even that ill when I got mine out but I'm so glad I did!!! I'm like a normal person now. I eat like a normal person and don't worry about going out etc. it's the best decision I ever made and wish I'd had it done years ago!

Also, glad I got it done by choice and on my own terms! Much easier mentally!!