Get so jaundiced about everything sometimes

I've had good results with meds and I see a lot of people here get in to remission from meds. Not just biologics either, I went into remission from Asacol, then steroids, then 6mp. I mean it would be great if we could all sit around and wait for a spontaneous remission but many of us don't have time for that - and I don't think it happens for everyone. I have to be feeling somewhat normal on a daily basis to live my life and get to work & make enough money to support myself. I don't have any family who would be able to take care of me so if I ended up unable to work, what would happen? These illnesses suck but I guess we have to do the best we can. There is just no way I can give up on being healthy enough to get to work. It's not an option unless I want to sleep on the streets. You really don't have it that bad, you're not stressed about ending up living on the streets are you?

I know I'm probably not making an awful lot of sense and am a bit incoherent. I'm too tired and too upset. However depressed I was before Crohn's, it took illness and medication to bring me to a whole new level of depression, the likes of which I have never known before. I was just ordinarily depressed before Crohn's and the medications messed with my brain and body, probably irreversibly.

I'm sensitive to drugs. Alcohol affects me badly and far faster than most other people. What was I doing, taking all these meds? Why? I was an idiot, an absolute idiot. Everything I took made either my depression, anxiety or Crohn's even worse than it had been before: everything. What was I doing? I'd never been ill before, I had no idea of the decade of hell I was letting myself in for.

hey nice - people come to this site looking for advice right ? you don't go searching for people to give that advice to, right ?

I'm sorry you're feeling so poorly. I have no good advise for you. I was hoping you had already improved with everything.

Hugs

NCOT, it's not your fault if meds don't work for everyone...they never worked for me or I was allergic (pred only helped a handful of times and quickly stopped working all together) I've never been in remission in my 23 yrs this spring since getting sick...in general, meds work for many, but there are tough cases like you and me that they don't work for (and for obviously many others as well)...I think even without meds people can go into spontaneous remission, just as people that take their meds faithfully can still relapse and flare again...there's no reasoning with IBD, it's a crap disease and it unfortunately controls people more than it gets credit for...even those taking their meds faithfully.

I don't know what else to say except that some people function better in the face of doom and gloom, with or without meds, in a crisis of health issues...etc.

Not a consolation, but there are always options as to how we deal...and it's on a continual scale of ups and downs. Some days are totally polarised, others are somewhere between. I couldn't do it without the meds I'm on or the doctors I have or the years I was in therapy (which was a lifesaver because of the psychologist I had). My husband is amazing....but I know being married to me is difficult at times. I wouldn't want to be married to me...sheesh.

Regarding expectations....low is OK. For some it's day by day, for others it's minute by minute. But there has to be a huge degree of reality in the mix as well as acceptance.

You're still a great support to the forum, even with the struggles that you've been going through...you're still trying to figure it out.

Wishing you a feeling better day...
qxx

You may have a genetic disposition toward depression or melancholy (old-fashioned name) and coupled with this harsh disease it makes your daily life very hard.

I am someone that Rx meds never helped and very, very few supplements have ever helped and it's been 13 years for me. But my genes somehow make me undepressed. I've had very bad times but not daily or prolonged bad times. But I know people without UC that are not as naturally optimistic as I am. I think it's genetic, really.

I do not feel destined for surgery as you think we are all.
I'm going to attach this article I just read, it's not about UC at all, but about someone who had a terrible incurable disease who was cured. No, I'm not saying "Do this" but I found it a positive thought for everyone who feels doomed with their disease.
edition.cnn.com/2014/01/01/living/psoriasis-cnn-anchor-zain-verjee/index.html?hpt=hp_t4

I hope you can find something to give you happiness or hope. I've taken to walking at least half an hour every day, easier because I'm in Florida I know, but getting out in Nature is good for our mind and body.

NCOT-I get where you are coming from about how all the meds just seem to make it worse. My oldest, while he doesn't have ibd, but may have celiac disease (we are testing), has horrendous depression and I believe he is also bipolar. He has been on sooooo many different meds. Been put in treatment twice. The meds either give him horrendous side effects or make his feelings worse it seems. He can be fine and then later that day be trying to kill himself. We are in the process of changing his doctor. Will that help? A girl can dream right? He's my baby and I just want him better.

Hugs to you sweetie.

Thank you, everyone, for being nice and understanding!

I'm feeling a little bit better now. I took the evening 'off' and watched Drive with Ryan Gosling: now I'm too cool for words >.>

The trouble is, when I rail like this, I don't have a specific target. Getting mad at big pharma or doctors is too general. I can't get mad at my GI: he couldn't have foreseen what Remicade would do to me. Can't get mad at my surgeon; she was only doing her job. I feel mad at my stoma nurse for not seeing me sooner, but I don't know what pressures she's under.

It's hard because I'm mad that treatment hasn't worked better, and yet there isn't really anyone to blame. I suppose I would like some more warnings in place, but the warnings that I would like would probably bum another person out. I told my mum today what the stoma nurse had told me before the surgery and my mum thought the stoma nurse shouldn't have said that I would feel better and not regret the operation. Knowing what I know now, I couldn't agree more: you can't be too pessimistic for me. You can tell me it will hopefully make me better, but don't make any promises that you can't guarantee, because you have no idea really.

#s.t.o.p.s.r.a.n.t

@quincy - Thank you for those kind words. I do know what you mean about some days being up and others being down. It can be quite polarised at times. Mostly for me it is down, to be honest, but I do have times when I feel in a good mood. Weirdly enough, it unnerves me sometimes; I just want to feel "normal", which is neither too down nor too happy, and not anxious or agitated either. That normal state (which ironically enough seems to be my rare state) is my desired way to be.

@pb4 - I'm sorry about your mum. I had a cousin with Crohn's who died of a brain tumour in her early 40s :( I barely knew her (she lived abroad), but I felt for her family. She came back to England for treatment, but it was too late: the cancer had spread. Very tragic. I don't know how the Crohn's had affected her, really, but she was able to go off on long adventure holidays, so I presume she was sometimes in remission at least. She was hospitalised once, but don't think she had any surgeries for it.

Luckily my brother is in better shape. Overworked, a bit gaunt-looking, and overtired, but at least basically healthy apart from his Crohn's. He's been on azathioprine for a long time, so maybe that helps. He goes on occasional courses of steroids for flare-ups, one of which he's just got over. (His Crohn's, incidentally, seems to take the form of proctitis.)

Oh, and apparently I have Irish relatives over the sea with Crohn's, not that I know who any of them are.

@imagardener2 - There's a strong history of depression in my family as well. Yep, I really drew the short straw on all genetic fronts >_>. I do think there is a very large enviromental component to depression, but undoubtedly some people are also more genetically prone to being wired for depression. It's probably a bit like IBD in that respect: if you have the genetic tendency, various enviromental factors can trigger it off.

But unlike getting IBD, I do think that probably almost any human has the capacity to become depressed, given the right (or rather wrong) circumstances.

I never for a moment meant to imply that everyone with IBD is "destined" for surgery. The lifetime surgery rates for UC are usually estimated at 25-30%. In most cases, surgery will happen within the first 10 years of diagnosis, and a significant number within the first year. My argument is that meds seem to do little to avert surgery for that minority, but the remainder don't have a lot to worry about. Most people who get UC will never have to have surgery.

Read the article on the woman with psoriasis. It was interesting, and I admired her for being so open and honest. I'm just glad she found something which worked, because psoriasis really does sound like the skin disorder from hell.

@John - I'm 38, and I intend to stay that for the next eight years >_>.

@sherbear - Hugs to you as well. I'm so sorry about your son :/ I can only hope a change in doctor helps. It's annoying it's so late now, as I'm trying to think of something which might help. In all honesty, it doesn't seem likely that help will come in the form of a pill for your son, so if money isn't a barrier, I think I would look into trying different therapeutic approaches. If your son has digestive issues, maybe a change in diet might help. If he gets diagnosed with coeliac disease, he'll need to go gluten-free anyway. Might be worth trying something even stricter, like the GAPS diet.

But in reality, I don't have any real ideas :-/ All I can do is hope that your son gets better.

@pmedic - Your experiences with meds sound hideous. I at least have no permanent damage that I know of, apart from fearing what was done to my brain. 5-ASAs and SSRIs I had severe intolerance reactions to, but at least those were short-lived. More worrying to me was successfully being on non-SSRI antidepressants for a couple of months and then becoming suicidal. I had major flare-ups on the immunesuppressants: draining ones with high fevers. Remicade, well I mentioned that already: was in hospital with toxic megacolon a month after starting it. Oxycodone turned me into a dope with a severely sensitised skin problem. Pred was the ultimate troll med and I become steroid-dependent.

Anyway, glad you have found a route which has helped you, pmedic.

I must, absolutely must, go to bed now. I'm too tired to go back and edit this post for length, I'm afraid. Sorry folks, but at least you know it'll be the last post from me tonight :p That was even more of a whale of a post than I thought... :-/