I miss my healthy colon like the first born child I never had

This isn't the usual whinge fest about having an ileostomy; but it is a whinge fest

I don't suppose anyone will be able to relate to me. I'm not sure if it's even worth the effort of registering with another ostomy forum and posting about my experiences there, because how much different is it going to be to HW really? But in a nutshell my digestive system has gone to hell in a handbasket in the past few months. I don't know if it's anything physical or if it's purely anxiety-based. As far as I know my MRI scan was clear for Crohn's, but I'll find out more on 24th December (of all the days in the year, I have an appointment with the surgeon then. Or, more likely, whoever the surgeon has designated to replace her while she's off having lunch or whatever).

I'm not in serious pain but I am uncomfortable and in distress for several hours a day. It's caused anxiety spikes to the point of an actual panic attack several times. I can't go on like this. Almost tempted to beg for a reversal on the grounds I think I'd rather live with incontinence than this. Trouble is, I don't know if a reversal would even solve my stomach issues - probably not.

All I ever hear on HW is how much better everyone feels after having their colons taken out. I feel worse than ever before. I've lost all pleasure in eating meals, because nothing is worth the stress, anxiety and discomfort which follows - nothing. I'd swallow a 2000-calorie pill a day rather than go through. I've had absolutely enough of my bowels betraying me. And betrayal is exactly what it feels like. I had a cast iron digestive system before I got Crohn's: I literally never needed to give it a thought. Now it's ruining my life with no prospect of it ever getting better.

I should be feeling better, as for the first time in a year I've had some good news on the housing front. But everything is overshadowed by this life-ruining anxiety. Please don't suggest I post on the anxiety board: all they ever do is suggest mindfulness -_-

PS: I've been on 40mg citalopram for several months. Don't think it's done a thing for me except turn me into a zombie without actually doing much to reduce the anxiety.

I don't mean to be condescending but what exactly is your complaint? You are not happy about having the operation or happy you had the operation but not happy about the outcome?
Not everyone bounces back immediately following their colectomies. We all have some "issues" or we wouldn't be posting. Overall, I believe, most of us are delighted we had our colons removed because the disease and/or medications we took to alleviate the symptoms of the disease was killing us. I know for certain that was my case.

Christine1946 said...
I don't mean to be condescending but what exactly is your complaint?

Life >_>

whatever said...
You are not happy about having the operation or happy you had the operation but not happy about the outcome?

Both. I certainly am not happy I needed to have a colectomy, no. I would have been "happier" with a resection, although seeing some problems some people are left with after resections, I would far rather have an intact set of intestines.

In fact, I truly believe that we are in the relative dark ages of GI surgery and one day the wholesale butchery of human intestines will come to be regarded as a barbaric procedure and regarded - rightfully so - with horror that people ever had to undergo this ridiculous sh1t.

whatever said...
Not everyone bounces back immediately following their colectomies. We all have some "issues" or we wouldn't be posting. Overall, I believe, most of us are delighted we had our colons removed because the disease and/or medications we took to alleviate the symptoms of the disease was killing us. I know for certain that was my case.

I am neither delighted nor interested in trying to persuade myself and other people how much better off I am now. I'm one of the relatively "lucky" ones in that I haven't had any life-threatening complications or the return of Crohn's, and yet my digestive system is a shadow of what it was. Not surprising: the intestines were never designed to be butched, torn apart, and then sewn back together again.

Yeah, I would not have this surgery again. If I could go back in time, I'd try the ****ing SCD, I'd do anything. **** Crohn's, **** surgery, **** everything. My life is over, in no small part thanks to this hideous disease and the hideous surgeries which accompany it.

Edit: Urgh, HW's software is seriously nearly as primitive as Crohn's surgeries are. @CarenZ - Thanks. It could be a med thing, I suppose. I thought SSRIs were meant to be soothing to the gut if anything; I dunno anymore. So many meds. So very, very many useless, waste-of-space, meds I have been on. Life is one sick, sick puppy.

Post Edited (NiceCupOfTea) : 12/21/2014 6:28:19 PM (GMT-7)

Eva Lou said...
I'm not quite sure what the problem is either- well, I know, but.... so, when you eat, you get blockages? Or pain in general? Does the output cause you discomfort? I'm just trying to find out what exactly is going on with your digestive system- that's pretty broad! Is the stoma working properly? If so, it shouldn't be the cause of your distress. I'm glad too, about the housing- and insanely jealous, my housing situation is not ideal! I do think anxiety plays a giant role in your well-being, but you already know that- and probably agree with me, to some extent! I don't know what to say, except that you may as well whinge it out instead of bottling it up! So the Crohns doesn't appear active right now, based on medical tests?

Nothing to be jealous of unless you are on the verge of homelessness.

I can't be bothered trying to describe the symptoms in detail, sorry. It's just an intense sensation of pressure, discomfort and intestinal spasming for hours at a time. Obvs not a blockage 'cos I still get output and the pain isn't bad enough for that. Sometimes it does get very sore/achey behind the stoma.

Whatever it is, I just want it to go away. It freaks me out. I can't stand it. I don't remember it being like this in 2013 or even earlier on this year - but whatever. This barbaric ****ing disease has had the last ****ing laugh. Ever since surgery I've changed. No cooing and aahing from me about how happy I am, I know this ****ing surgery has done something to me, mentally - on top of the years of malnutrition, pain, suffering, etc. all done in silence with none of my idiot relatives having the first clue. They are more clueless than a crossword puzzle which doesn't have any clues. They are utter imbeciles, who don't know the first thing about Crohn's, my dad, my depression, my recently-diagnosed ASD, etc. etc.

Well HW does though. Lucky HW.

Hmm, it is entirely possible this is a massive IBS in your stomach and small gut caused by extreme anxiety/depression. OTOH, how many meds do you now take? side effects of drugs, say anti-depressants, or even supplements, could be causing digestive issues. It's great to hear that the MRI gave your small gut a clean bill of health. Not so great that no one seems to be able to get to the bottom of your symptoms. If you were on this side of the pond, an integrative gastroenterollogist would be the go to doc, or at least an integrative doc in combo with a regular GI. In any case, though we cant judge how extreme your real psychological mood is vs what you write here, I take you at your word that you are in near hysterics over your present state, and therefore I am tending to think it is a mind-body effect on your gut. You had some good spells, symptom wise, before didnt you? Hoping you can find a way back there soon.

I just want to give you credit for how strong you are for carrying on under all that you are enduring.

Merry Christmas, guys... >.>

I'm a bit calmer about my gut now, especially as I think the iron tablets I was taking was making things worse (have stopped them now, obviously). The doctor I saw yesterday confirmed that my MRI scan was clear and showed no signs of Crohn's. But he was quite nice and I ended up telling him about all my anxiety and some of the reasons for it (housing issues, etc.) :-/

He didn't prescribe me anything for the small bowel, but he gave me a 6-week course of Predsol enemas for the rectal inflammation. I hope I can retain these a bit longer than the 10 seconds I retained the Fleet enema for... :-/

I still wish my gut was "perfect", in the way that it used to be. But it has been better in the past few days, even though I'm eating more 'cos of Christmas. Even my brother's dinner, which I thought would ruin me with all the veggies, turned out to be okay.

@nssg - Isn't it? :p

@Gentle Now - Thank you. Now I just need to bosh my remaining anger issues on the head; a lifelong project... :-/ (Don't ask what I'm raging about this time. Need to take a step back from it.. >.<)

Hi NCOT, I wanted to respond to your comment about how you feel like a zombie on citalopram with no real benefit. One of my dear friends has depression but mostly anxiety and she found pristiq to be superior for anxiety of all the anti-depressants. It's not an SSRI but an SNRI.

pristiq worked really well for my attitude. I felt a lot less pissy while taking it. I am considering starting it again. I can't say whether it would help you but maybe it's worth a try :) I stopped because i was sick of taking so many meds on a daily basis. I think i felt less drained on pristiq.