Do stomach issues ever really go away with this disease?

I know Crohn's disease comes back after surgery, but it at least seems to give most folks a few years of remission. This way I just feel like I'm not in a proper remission at all.

Edit: A friend put it well just now: "I do understand about being brushed off as 'okay now' with no idea if I really am or whether I will be in the future.". Yeah, exactly. My imbecelic family will think I'm fine now with NO idea of what I've been through, 'cos I'm not the type to go on and on to other people. In fact I never bring up my Crohn's disease to them. Don't want their fake, patronising concern; they can **** right off. Only one aunt made the effort to visit me in hospital: the others didn't even send a get well card for crying out loud. Then my mum will tell them the "good news", they'll pretend to be happy for me for 5 seconds, before launching into a 15-minute *****-fest about their latest cold, or whatever.

As for my medical care team, they don't care. I don't even have a follow up appointment until six months from now.

Edit 2: What I said to friend above: "I'm just weird, I think. I hunker down and cope with periods of illness quite well, but when recovery is on the cards I fall to pieces. Mind, I've not had what I call a real, honest-to-god, remission with this disease yet. That might be different if I did, I dunno.Or maybe I'd still find stuff to ***** and moan about :-/"

Edit 3: Friend again: "It's a shock though, when you are so prepared and used to bad news. Then there's worrying that you will still feel really ill while eveyone is saying there's nothing much wrong...". A1 spot on. Anyway, I'm feeling slightly better now... :-/

Post Edited (NiceCupOfTea) : 11/3/2011 5:01:55 PM (GMT-6)

The flatness has turned into full-on depression.

It's all over; except it isn't over. Just feels like there isn't a single thing to look forward to anymore.

My surgery did not lead to remission for me..I had it in my stomach, kidney stones ,joints, and all the extra stuff, too. I had my gallbladdder removed at the same time so I had severe bile salt inflammation and D so I am not sure if I would have had a better reaction if I had not had my gallbladder taken out at the same time..I do not have a day that goes by a don't feel some form of this disease internally it is hard to explain..
Cindy

Cup, there can be periods of time when we really do go into a true remission and have relatively no pain ( or at least very little pain). I have been there, although not for quite a while. It seems that as time goes on, things are getting worse for me but I am still hopeful that with treatment, I'll get things back under control.

No one has the answer as to what will get us into remission. For some folks, surgery of almost any kind will do the trick. Perhaps it's a simple reaction of the body to the surgery, even if it's in another area. I had my Gall Bladder removed 15 yrs ago when my docs couldn't think of anything else that could be causing my terrrible gut pain and D. I was young for GB in general, but have a huge family history of stones and my 21 yo cousin had hers out 3 weeks after mine came out. Anyway, we now know that my problems were CD, but having that surgery tricked my body into a real remission. For at least 2 years. Sure, I still had the occasional bout of D, but so do "healthy" people and I did have occasional pain in my LRQ, but I wrote that off to possible adhesions because I had terrible adhesions removed from my TI and Cecum during the Gall Bladder surgery.

I have also had other spontaneous periods of remission that occurred from out of nowhere. I just woke up one day feeling better. And I've also had remission brought about by medication. I'm hoping now that I'm back on Humira to see a gut remission again.

Depression is a huge problem that we face and I hope that you'll seek treatment for it from a real psychiatrist. Sure, a Primary Care Doc could write a script for an anti-depressant, but I don't let my Primary treat my gut or my joints and I won't let her treat my depression either. I honestly believe those are 3 things I need a specialist to treat. There are many anti-depressants out there and not every med works for every patient. I've tried quite a few over the years and most recently was on one that worked quite well for me 20 years ago, but it hasn't been too good now. This is something I need to have treated by a Doc who is very familiar with the gamut of meds available as opposed to the Primary who is familiar with the few newest on the market which the sales rep drops by to talk about. Also, there are many anti-depressants which also help relieve pain and that can be an added bonus for us.

The intestines are sometimes referred to as the "enteric brain" because levels of neurotransmitters like serotonin, dopamine and norepinephrine in the gut are second only to the brain. An imbalance of these chemicals can cause depression and gut trouble and this is why there is at least a small percentage of people who benefit greatly from treament with nothing but an anti-depressant.

Several years ago I had a conversation with a friend who had always tried hard to be as supportive of me as possible. She was relating how sick she had been that previous weekend when she had a 48 hour stomach bug which left her wondering which end to put on the bowl first. She said she had felt so bad and the whole time kept thinking about how that was what I suffer through. When she finished explaining her ordeal, I told her about the awful night sweats and gut wrenching cramps and then told her that really the worst of it was feeling that way so often, for many years and still having the Doc's tell me that there was nothing wrong with me!!!

I don't know what I would have done without me friends. I try to thank them for putting up with me whenever I have the chance.

I hope you find relief soon and can at least take comfort from the friends around you.

All the things that I dreamt of doing when better... just gone, for the rest of my life. I'm never gonna become fit and healthy, I'm never gonna find a job and become independent. Just none of it is going to happen.

*I am sorry NCOT, but I cannot let the last statement stay on the forum due to rules* Sorry!

Post Edited By Moderator (Nanners) : 11/4/2011 7:40:23 AM (GMT-6)

NCOT, here's a story that may seem unrelated but perhaps will give you some perspective.

i work in a job where we can do cool things like fly in an airplane that gets zero gravity every two minutes, for 30 seconds a pop. They fly in these parabolas, like a roller coaster ride, so at the top you have zero g, and at the bottom you have 2 gs. It's a ton of fun. about half of the people who fly on this plane get motion sickness and end up vomiting their way through the experience. The whole flight lasts about 2 hours, so that's a long haul of vomiting, KWIM?

So that's the set-up to my story.

When I was 20 I had an assignment that got me onto the "Vomit Comet," I had to run an experiment. The director of the plane project encouraged me to fly without any motion sickness meds. I was young and stupid and agreed, even though I knew myself well enough to understand that I get motion sickness really easily. I got on that plane, and as soon as they started the first parabola I knew my goose was cooked. I enjoyed the zero g experience twice, and then buckled myself back into my seat and got my airsickness bag ready. And then I waited .... and waited .... and didn't vomit. I sure felt awful tho.

The way they fly this plane is to go out in one direction for 20 parabolas, stop for a while, and then do 20 coming back. Rinse and repeat, as they say. For two hours. After 10 or so parabolas of not vomiting I started to think maybe I was in the clear. I was buckled into my seat, concentrating on relaxing, anticipating the feelings of floating and pressure, getting into the groove of my nausea. Then the parabolas stopped as the pilot took a break.

Then I vomited. Yup! I only got sick on the level flying portions of the day! Ha ha ha!

So my point is, you have spent the last couple of years with a seriously debilitating illness. Your mind has been focused on getting through the days, planning a strategy for healing, struggling with your NHS, dealing with it all. Suddenly the whole thing has shifted and you have a totally new reality. It is really disorienting! You are having to reset all of your thinking. It is going to be a while before the newness wears off and you have a different set of rules governing your day.

And here's the other thing. When I signed onto HW a year and a half ago, I was feeling sick everyday. I knew why, and I had hope that things would improve, and I took a lot of good advice from the folks around here, and I got a lot better. I eat my meals every day with very little discomfort. I spend almost zero time feeling nauseated, whereas a year ago I was nauseated every hour of every day. I exercise a lot, three days a week, and feel great about that. Even my knee hurts less - and that's huge for me.

Things will look up for you, I promise. I'm worried that you need medical intervention to stem this clinical depression, because that too is an illness that can be, and should be, managed with meds. I can't remember if you're taking any antidepressants right now, but it seems a good idea to get some on board, at least for the next month or two.

Start maybe with a nice cuppa St. John's Wort tea. {{{HUGS}}} NCOT.

Meh. Still don't see any point tbh. No suicidal intentions behind it; just don't see it any point. There were a couple of things I smarted at but whatever: I'm not gonna respond by saying "you have no idea". Actually yes I am. Certain folks here have no idea. It's not a freaking competition: "oh I'm sooooo much iller than you", but that's the mindset of some of this on this board. I never claimed to be the worst off of all; that's not really the freaking point anymore, though, is it? I've reached the end of my tether and if that seems trivial to you, don't post. I'm not "grateful", and trying to make me feel that way will just make me smart even more. I've had 5 years of bad times with this disease now; bad times which seem set to continue indefinitely into the future.

I'm not remotely convinced I'm heading for remission for a start. Why did I go into a massive flare up - the worst yet - on Remicade? Who's to say it won't happen again? Maybe it was the steroids which gave me a better scope, not the Remicade, in which case I've finished the steroids now, so the inflammation could come back again.

I'm also so useless dealing with people, it's not even funny. I thought of a few questions I wanted to ask the IBD nurse, so I called her earlier on and left a message. At half four, when I was just about to pop out, she phoned. I had the questions written in front of me and yet I still couldn't ask any of them: I just couldn't think of how to word them without constantly stuttering and stumbling over my words, like the inarticulate fool that I am. Anyway, the nurse agreed to call me back on Monday afternoon.

PS:

To claim that people here don't have any idea, wow, really?

All right, I'll be more specific then. You don't have any idea. No offense or anything!

Tsitodawg was saying that actually, Keah...

And he is probably right. But so what? Does it stop me being depressed about my own situation? No it doesn't. Billions of people across the world are worse off than us, but so what? Does anybody really, deep down, in their hearts of hearts, care? The vast majority don't, because if the vast majority cared (enough), the world would be a very very different place. I'm not taking the moral high ground here; I'm no better than anybody else in that regard. It's also known that, statistically speaking, westerners are a pretty miserable lot and that wealth - beyond a very modest point - doesn't make you happier.

In other words, the 'be grateful!' line of reasoning simply doesn't work for most people. That probably doesn't say anything wonderful about human nature, but it would appear to be true all the same.

I also don't really agree with your "every morning I have two choices" argument. For you it presumbably works. For me, it simply doesn't work like that. It would be quite hard to explain how it works, but it isn't like that. I don't "do" positive thinking; aiming to wake up with a smile isn't, in any way whatsoever, me. I don't bother with striving to be happy; that isn't how happiness is derived anyway, IMO. If I have an absence of bad feelings, that, to me, is happiness.

And I have been happier of late. Not that this thread would indicate that, admittedly. But I really have. And yesterday, the rug was pulled from underneath my feet and I fell back into the h*llhole that is depression. I'm still in it, but with a tiny bit more perspective. I think I have a 'right' to be depressed and nobody can take that away from me. I can't 'choose' to be happy right now, because every cell of my being is telling me 'enough is bloody enough'. Not in a suicidal way, but certainly in a depressed way.

Thank you anyway. *said sincerely and not in a snotty way, because it can be hard to tell tone in text*

I want to say it is not a competition of who is sicker..I do understand your frustration, and I had to go through a grieving process of what my life once was. I was mean, hateful, depressed, and did not want to be around anybody because I felt nobody understood..I was not suicidal but just having a hard time dealing with my current disease and life quality in the future. I was your age, and I am 41 years old now..I had four kids, full time job, husband, aging parents, and I could not seem to get off the couch..I ended up in the ER or at the doctors office on a regular basis..I do not know if I will end up there again..I am trying to go ahead with my career, but could end up back where I was at 34-36..There are plenty of us that deal with this looming in the back of our minds when we have gotten better! We understand more than you think and just know the board has many personalities just like anywhere else..We are all here cause we share this DD...

My CD is more than microscopic - it's still there! It's just not as bad as it was on the last scope and the stricture I had has gone. And no I'm not glad about that; I couldn't care less what the scope shows if I'm still feeling as rubbish as I did before I became extremely ill. I'm also very very very far from convinced the Remicade is knocking the Crohn's on the head, but only the next few months will tell on that one.

@cindy - I don't think anybody does understand me really. And by that, I most emphatically don't mean "my disease is worse than yours". In fact most people here seem to have even more severe cases than I do. I just mean something else really. A way of seeing things. Also, most people, despite everything, have married, had kids, etc. I've never married, never had children, never had a career or even a permanent job. That gets me down so hard at times, because I think I've missed out on the experiences that make a person human. And then at times like these, I do feel the lack of support from a partner.

I'm just waffling now. Sorry, folks, if I've been obnoxious.

Are you up to watching a movie or reading a book or playing a computer game there, NCOT?

My new faff addiction is Five and, by the way, curses on you for even mentioning Bejewelled a few weeks ago, because I searched for it, found it, and got completely hooked on it for a while.

Do you have cicadas there? As pupae, they spend years and years and years underground - sometimes seven, sometimes more than forty - and then finally emerge one summer, shed their skin and erupt in a riotous noise, and are dead by the end of the season. I sometimes think we can find a lot of meaning in that. If the pupae ignored those seven-forty+ years, longing for its brief season in the sun, then it would wish away the longest part of its life. We need to find some way to make our dormant life meaningful, instead of longing for the life we'd have if we had complete health.

I still recommend reading. It's a good way to keep learning things, and then, if you ever do feel well enough to go to uni or whatever, you'll have a huge headstart on the eighteen year-olds who are just starting out.

Ivy.