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Posted 10/27/2013 3:15 PM (GMT 0)
It's been 8 months since I had surgery. How long does it take to get over a single operation, mentally and physically? All I can think of is I would never have agreed to have the operation if I'd known it was going to open up this can of worms. I never wanted an ostomy; I should've gone with that gut instinct. I should have gone with it. I don't care now if I had to remain on Pred or even if the disease had killed me; I went against my instincts and now it feels like I'm being punished for it, like I'm always being punished for something or other.

I know the the 'party line' about having a colectomy for IBD is that it is a life-changing operation for the better; that the typical regret is not having had it done sooner. No more pain, no more UC/Crohn's, no more bathroom trips; what's not to love about it?

I don't know. Having a stoma for one thing? It's a bit like having a pet to look after, but minus the cuteness or companionship a dog or cat can provide.

And I never minded the bathroom trips. I would just lie on the cool bathroom floor and find it curiously soothing. Bedroom floor, not the same. Yeah, there were times when I was in wretched pain, but I only developed that kind of pain after my first hospitalisation in 2011. I don't know how I can go from having little pain for 11 years to having continuous pain. I just don't know what changed to cause that. How could I go from having mild disease to having a colectomy? None of it makes sense. I joined this forum to find answers; I learnt enough medical jargon to be able to understand the medical literature for Crohn's. And I still barely know any more than the day I joined this forum. I can't help myself, let alone anyone else. I never saw my own future coming, for christ's sake.

I just don't know if I'll ever feel better or not. In all the stuff I've read about ileostomies, I've only come across one paragraph about protracted depression. And here it is:


At a recent chapter meeting, a subject came up that I found intriguing. One of the participants in the rap session stated that he found himself depressed and withdrawn even though it has been a year since his surgery.
He wondered how long he could expect that feeling to last and, I think, whether it would go on for the rest of his life. Some people with ostomies adjust almost immediately. These folks see an ostomy as a cure for an illness that threatened their lives or restricted their activities. Others take a few months, generally feeling better about the situation as soon as they master the fine art of pouch changing and maintenance.
For many, ostomy surgery begins a process that appears, and is, very close to the grieving process, and like any grieving process, the amount of time needed to feel emotionally whole again will vary. It took me almost two years following my surgery before I felt like I had regained my former personality and was ready to move on with my life. Therefore, there is no magic amount of time needed to adjust to your new ostomy. Allow yourself the time you need and realize that the feelings of depression and isolation will eventually go away.

Maybe there should be a support group for depressed ileostomates, except there probably wouldn't be enough people to join. I also wonder if people who were depressed before falling ill are not psychologically suitable for having an ileostomy. My depression seems to have been masked to a certain extent by being ill, but once I became 'well' it not only came back in full force, it was worse than it ever was.

I've tried various antidepressants in the past; they don't seem to help. A couple of times I ended up in an even worse state. Therapy I cannot afford. All they offer on the NHS is CBT and I've come to the conclusion that's useless for severe depression.

Depression is a far bigger curse than Crohn's. I've experienced the worst of both and I'm saying that.
Posted 10/27/2013 7:17 PM (GMT 0)
Hi NCOT,
I'm sorry you are still feeling so depressed and that the CBT wasn't helpful enough to you. I only know bits and pieces about you, so I'm not sure if I can be helpful at all. I'm wondering if the ostomy has become a safe object to place your isolation and anger and depression? When you were ill, you were spending your time trying to survive the pain, researching medical answers online, etc. and in a strange way, you had a purpose. So now your health is improving, but life is feeling kind of pointless it seems. I know that for me, over time I've become more socially isolated. I can never predict how I'm going to feel, so I have a tendency to avoid inviting friends over or making plans. For example, I had the idea of having some of my neighbors over for dinner. I came up with this idea last May, and I have yet to follow through on it. I'm able to successfully go to work, go out with my husband (always last minute plans) and happily hang out with my adult kids when they are here in town, but that extra step of actually socializing, even though I am very lonely, doesn't happen. It's true that I often don't feel well, but it's also true that it's an excuse and I could do more than I do. (I don't know why I'm sharing this exactly...just letting you know it's something I'm working on for myself.)
I think it's time for you to try to focus outward away from yourself. I know people have given you all sorts of suggestions such as volunteering, or going to school or getting a dog. You are never going to be ready for it....you just need to pick one change and make yourself do it. I don't know when you will get to accepting your decisions about the ostomy. Maybe though, it's time to stop thinking about it and walk forward. I understand that our lives are very different, and maybe I can't completely understand your pain. But EVERYONE'S life experience is unique. I hope you make sense out of this all soon. You have survived a lot of emotional and medical trauma....please be as patient with yourself as possible.
Posted 10/27/2013 7:51 PM (GMT 0)
I just can't see any end in sight to this, gumby.

I'm not looking for suggestions on what to do. There isn't a lot to do, but what there is to do I can think of already, like volunteering or studying. I can't face people.

I regret having the operation less because of the stoma and more because now I have to live with depression for the remainder of my life. I didn't know it would be like this. Depression is going to dog me for every step of my remaining life, it doesn't matter whether I go out or stay in, it's a blight. I don't have any words with which to express how utterly depression has ruined my life. And if nobody has had long-term depression, they cannot even possibly begin to appreciate at how depression destroys absolutely everything that is good about life.

Utter, utter, utter curse. Worse than Crohn's and Crohn's is a wretched blight, too.
Posted 10/27/2013 8:22 PM (GMT 0)
The stoma didn't cause the depression. You already were struggling with depression. Certainly it created another challenge which has worsened your depression. I wish I knew how to help, as I hate hearing that you are suffering. You may be right that for the rest of your life you will battle depression in some form or another, but just like with Crohn's, your thoughts, feelings and behaviors in attempting to manage it will make it far easier, or far worse. Please don't give up...you haven't figured it out yet, but that doesn't mean you never will. I don't know how much it costs to get a decent therapist to help you in the UK, but even if you have to work part time to pay for it, I think it would be worth it to you. You are very smart and verbal. Is there anything you can do online at home to earn extra money so you don't have to deal with people until you are ready? Is there any way I can help???
Posted 10/28/2013 3:12 AM (GMT 0)
Thanks, gumby...

I need to go to bed, which means it feels like I am rushing my reply, which I hate. A therapist is about £40-80. Forty pounds is about $65. I wouldn't know where to start, even if money wasn't an issue. How do I pick somebody? How do I know if they can help or not? Things which most other people seem to find easy - phoning around, for example - is a massive barrier to me. I suppose it might sound I'm raising objections for the sake of raising objections, I don't know; but I'm not making it up when I say I panic at the prospect of having to talk over the phone, especially if I don't know the likely course of the conversation.

Personally I think the idea of a mental health professional who can make things better is a bit of a dream anyway. By far and away the best way of dealing with depression is to not develop it in the first place. But that really is living in a complete and utter fantasy land where everyone feels connected enough not to become depressed. Everyone on earth will become a billionnaire first before that happens.

So yeah, I seem to be stuck with depression. It was triggered when I was 13 - not that I was a wildly happy child before then - and it has never really gone away. I just wish I could have some peace of mind.

I don't know what I can do on the internet to earn money... :-/

Thanks again, gumby. You are, I think, one of the good ones. And I'm not just saying that. I'm off to bed now; take care. As for your social isolation you mentioned earlier, for whatever it's worth, a similar thing seems to happen to most healthy adults as they get older: it becomes harder to make the effort to socialise. So try not to beat yourself up about it, 'cos you have a health condition known to cause fatigue that most people of your age wouldn't have. Anyway, I'm off to bed now. Goodnight..
Posted 10/28/2013 2:06 PM (GMT 0)
Hey NCOT,
I hope you got some good sleep and are feeling a little better today. Here in the US the best way to find a good therapist is through word of mouth...either from friends or relatives or your primary care doctor. Then it comes down to talking on the phone to the therapist and asking about his/her experience and approach to therapy. In your case, you would absolutely need someone who understands depression as it relates to chronic illness, so someone who has some affiliation with doctors and the medical field would be best. It may be hard to find someone who specifically understands Crohn's and ostomies, but your ostomy nurse may be another source for a good referral.

Finding the therapist isn't going to fix the problem though....my guess is that you already have realized that. It needs to be more valuable for you to move forward than to stay stuck where you are. Did you ever see the hilarious movie "What about Bob?" with Richard Dreyfuss and Bill Murray? (it's worth seeing if only to make you laugh) It pokes fun at therapists and therapy in general, but it does have a point about "baby steps." You need to try to make one tiny change at a time.

Try to hang in there and set tiny, easily reachable goals for each day. I hope you sort things out soon. I'm in a phase of cycling back and forth between C and D, and it's a D day....I'm not sure which I hate worse! I don't know if it's IBS or I'm heading back into a flare, and my guess is that my GI won't know either. My husband and I are supposed to go on vacation in three weeks. We are renting a house on the Gulf of Mexico near Clearwater, Florida to celebrate our 30th wedding anniversary. I picked it because even if I'm sick, I can still enjoy sitting on the beach and we'll have our own kitchen, so we don't have to eat out all the time. I'm getting anxious as we are getting closer to the trip.....I so much want to get to go out to interesting restaurants, and ride bicycles and go snorkeling and be active in general. My husband keeps saying that he'll be happy to just read a good book on the beach if I'm not well, but I don't want to ruin our trip....it makes me angry and sad that I have to deal with this stupid disease!!! I am seeing my GI next week so maybe he'll have some ideas, but I highly doubt it. Well, I'm rattling on about nothing...just sharing that I do understand a little bit about the frustration of not having a "normal" life! Take care.
Posted 10/28/2013 2:38 PM (GMT 0)
ncot,
I know it's been a real struggle for you. I hope you feel better soon.
Hugs!
Posted 10/28/2013 5:15 PM (GMT 0)
Hi, NCOT. I only have a moment to reply but I wanted to give you some {{{{{HUGS}}}}} and to gently ask, are you treating your thyroid condition? Because if not, that could be conributing to the depression.

Take care and I hope Tuesday is a good day for you.
Posted 10/29/2013 8:28 AM (GMT 0)
I'm really sorry to hear that you're still struggling and suffering, NCOT.

I wonder if you might find this site helpful. It offers free psychological support programmes for people with IBD-related depression and anxiety, and is provided by a doctor who has been fairly well supported in Crohnsy circles here in Australia.

Massive hugs to you. Depression makes everything so much harder, and you've been given a horrible road to walk.

http://www.mindovergut.com/
Posted 10/30/2013 1:07 AM (GMT 0)
I don't mean to open a can of worms, and I apologize if this is offensive, but I've found a lot of strength through my faith in my religion. Do you have something like that you can lean on?
Posted 10/30/2013 2:16 AM (GMT 0)
Just wanted to say thank you, folks. My parents had a long talk with my GP today and he is going to phone me tomorrow. I didn't even know my mum had an appointment with him :-/ She did ask me if it was okay a few days to talk to him and I said yes. I don't know what will come of it. I don't remember if I ever spoke about this on HW or not, but in 2009 I had a breakdown. At the time I was inclined to blame the antidepressant I was on for pushing me over the edge, but in retrospect I'm less sure. Not gonna go into details, but I took an overdose which resulted in a 3-day hospital stay. I was in my 30s, first time I'd ever done anything like that. Got no help afterwards. At the time I didn't think much of it, but I have heard of people having much more support than I have. Most of it's hearsay, but one example is very recent and absolutely not hearsay. I might as well be receiving my Crohn's diagnosis again for all I know what to do, because I'm just clueless.

One thing my parents seem to be finally taking seriously is me living independently, ie a place of my own and hopefully a job eventually. But I need help with that. I may come across articulately enough in text, but trust me when I say I can barely deal with people in real life. A minor run-in with a poppy lady today served to bring that point painfully home, in fact: I ventured out of the house to put the new tax disc on my car window; while I was there I also cleaned the windscreen. The window sparkled, almost like it was in shock at actually being clean. While I was nearing the end of this Herculanean task, a woman turned up in our front garden selling poppies. I mumbled something about not having any change on me and went back to cleaning the window. I dunno if the woman heard me or not, but she just stood there: cue the most awkward minute, ever. Eventually she spoke; asked if my parents were in, I said no; she went next door, rang the bell, and had a normal conversation with my normal neighbour.

Anyways, writing that out tired me nearly as much as cleaning the wretched windscreen did in the first place.

@Gumby - Nah, never seen that film. Happy 30th wedding anniversary though! <_<

@big better - Thank you, hugs back.

@kazbern - I was taking Levothyroxine for a month, but I stopped taking it. Yeah, I know! I just felt like it increased my fatigue and, even after a month, it wasn't getting any better. I read on a thyroid site about how taking a thyroxine replacement may trigger an underlying adrenal suppression disorder, so I thought of Pred and kept worrying about it. I'm seeing my GI next week and I'll ask his opinion; he was the one who found out I had a problem with my thyroid in the first place. Hugs back to you as well!

@ivy - I'll send you an email, but it'll have to be (mecifully) brief now... >.>
Posted 10/30/2013 2:21 AM (GMT 0)

scifigal2k said...
I don't mean to open a can of worms, and I apologize if this is offensive, but I've found a lot of strength through my faith in my religion. Do you have something like that you can lean on?

I didn't see this post until after I had replied.

But the answer in a nutshell is no :-/ Don't worry, I'm not remotely offended. In fact I sometimes wish I had faith because I think it might give me more hope. But I don't have it within me. Faith to me seems to be something that people have or don't have; I don't have it, but I do respect it.
Posted 10/30/2013 3:20 AM (GMT 0)
Hey NCOT,
I'm not sure I completely understood your last post....are you saying that maybe your depression will qualify you for disability, so that you can get help from the government for an apartment to live independently? I don't know if that's possible, but if you think having your own place separate from your parents would be helpful, then it may be something to consider. I still feel like you need a focus for yourself, but I think I get it that you just aren't there yet. It doesn't sound like you did anything weird with the poppy lady...maybe she was the odd one in that situation:-) Anyway, I'm glad your mom talked with the GP....maybe you will get more help and support. Hang in there.
Posted 10/31/2013 12:12 AM (GMT 0)
NCOT, I think you're not just depressed, it sounds like you're dealing with some form of a social anxiety (which CBT can help with).

This combined with depression can make quite a difficult (but not impossible to manage) combination. While I don't speak of it on here, I suffer from depression and anxiety (mostly unrelated to crohns). I have heard in the past of people offering sliding fee scales for things like therapy. That might be something to speak with your GP about. In addition, finding the right therapist is quite difficult sometimes. It's taken me a few years (I kind of come and go as I feel the need), but I've finally found someone who is treating the cause, not just the symptoms.

Also, I find a lot of help in the articles on this site: http://tinybuddha.com/. They are certainly not a substitute for an actual trained therapist, but it reflects a lot of what I need to work on personally.
Posted 10/31/2013 3:23 PM (GMT 0)
Still cracking up.

GP phoned, but the talk didn't really help much. Was so tired from lack of sleep could barely think. Got a pointless referral to a pointless somebody, which will take months to come about or possibly not at all.

@gumby - I can't focus on anything. Even this post. Have spent the last hour just staring at the screen mostly. But yeah, if I wanted to move out of home, only way I could do it without a job is to claim housing benefit. Dunno how to set the process in motion. Always seems to be a nightmare finding a new place to live.

I just desperately want a break from my life. Thought about taking a holiday, but can't really afford more than couple of nights away and what's the point of that? It's always boiled down to the same thing with me: being utterly stuck. I'd probably loathe every minute of it, but I almost want to be admitted to a psychiatric ward. Doubt it'd be a place of peace and rest, more like a place of bedlam.

@girlzilla - Well, if longing to be dead every single day isn't depression, then I'm not sure what is.

Had a quick look at that site. Sorry, that type of thing doesn't do a thing for me. I have no peace of mind, ever. Sentences like this one for example....

Remember that your struggles are just as beautiful as your success.

No, they really, really, really, really aren't. There has been nothing "beautiful" about my struggles with life thus far. Exact opposite, really.
Posted 10/31/2013 4:33 PM (GMT 0)
Sorry for the depressing post, guys, I feel slightly less grim now :/

Yesterday was a bit of a nightmare to drag myself through. It involved a long day at my brother's. When I'm depressed, I get paranoid my nephews are ignoring me. I'm pathetically self-conscious, especially with the older boy. It's not his fault at all, but when I'm unable to think of anything to say to him it reminds me of when I was young, and not in a good way. My teens were a miasma of uncomfortableness and awkwardness; of wanting to join in, but my mind being too blank to think of anything to say.

My mum, of course, is entirely at ease with both boys. She has no concept of being self-conscious with them.

Anyway, so it was a difficult day and I nearly left, but I didn't: I stayed til the end. I woke up today in a rather grim frame of mind, but I'm finally not feeling quite so grim now. I'm sorry, I should really start up my own blog... :-/
Posted 10/31/2013 4:38 PM (GMT 0)
Hi NCOT,
I have no idea what psych wards are like in the UK. In the US, they keep you in for as short of a time as possible. The reasons for being admitted are for active suicidal thoughts or to get you started on medication so you can be closely monitored until you can stabilize. You may already know this but active suicidal thoughts are thoughts of suicide with a plan and intent. Passive suicidal thoughts are when you feel like you can't take it anymore but have no actual intent. You seem on the borderline to me.....it may help you go into the hospital for a few days and they can try with medication and group therapy to help you stabilize. I highly doubt if it's anything like the US that it will be relaxing though....that's only in the movies. I wish I could help more...sorry you are suffering....depression sucks!!!
Posted 10/31/2013 8:10 PM (GMT 0)
Hey NCOT, my Aunt felt the exact same way for a while when she got her ileostomy bag as well. She has had hers since 1997 now and it has just become a part of life. She has had Crohns for many many years and has had to go through so much. You guys are strong.
Posted 11/1/2013 3:37 AM (GMT 0)
Hi NCOT--

Apologies, as I didn't mean to imply you don't also have depression. I think in addition to your depression, you sound like you suffer from anxiety. (Of course, I am not a doctor, so I don't know. This is just from personal experience!)

Hey, those sorts of sites don't work for everyone! It's gotta work for you, and if it doesn't that's cool too.

I hope you can find some better resources. :/
Posted 11/1/2013 10:47 PM (GMT 0)
Hey NCOT, I know you say that faith isn't your thing, but I think it can be. I really do. Not trying to be pushy, but please email me if you'd like to talk about some things. I have some close family members who struggle with depression. In our church's last semi-annual conference where the leaders spoke via satellite to all members of the world, one of them specifically spoke on mental illness and especially depression. I actually thought of you a bit when it was going on. Here is the link to it, if you'd like. Again, not trying to push, I really am trying to help. I know how dark and deep and difficult it can be where you're at. It breaks my heart that you're there, and I really want to help.

www.lds.org/general-conference/2013/10/like-a-broken-vessel?lang=eng
Posted 11/2/2013 2:01 AM (GMT 0)
Honestly just feels like I'm going to be stuck with this depression forever. I made a long post on the Ostomy board which took it out of me. Half regret writing it now. Anyway, that means my reply will probably be even crappier and more unfocused than usual :-/

@gumby - That doesn't sound too different to the UK from what I know. about 30 years ago, a lot of mentally ill people who were previously in psychiatric hospitals were turfed out onto the streets under the 'Care in the community' banner. That was mainly the long-term patients, though; I dunno if short-term admissions have changed or not. But to be honest, have given up on the idea for now. It'll probably be awful, much like normal hospital wards are; no privacy, constant noise, wailing from the patients, etc. And I would probably have a bad reaction to any meds I was given.

@Whitney - Thank you sincerely. It does help to hear that! I just want to reach a point where the ostomy is part of my life. On that note, almost wish the surgeon had told me there was no hope whatsoever for a reversal. Having a slight hope just keeps me hanging onto that slight hope. Even if it came true, a reconnection could trigger the return of Crohn's. I just feel a bit hopeless, really. Like I've got all the torture of making a decision about surgery all over again.

@girlzilla - Yeah, I do suffer from anxiety as well. Got the fun of both depression and anxiety :-/

@scifigal - Thank you, but it's no good.... I really don't/can't believe :/

I'm gonna go to bed now, goodnight folks.
Posted 11/2/2013 2:58 AM (GMT 0)
Cup O' Tea,
Ya gotta have faith. No faith means no help needed. You have already done things most people with this condition will never do, talk about it. Those people will live a long life just as you will. It isn't over and you aren't dead. You won't be dead either, not from this. You are talking about it freely to the world right now. You are not trapped by this unfortunate disease. The fact that you are asking for help is indicating you are not a recluse forcing you to a dark corner of your room. You are speaking your mind and it is a strong one. You will never know how far away a cure is. It could happen tomorrow. Have faith!
This is awful for you because it forces some very private things into the open. You have to get to the right balance, meds vs., activities. No one needs to know if you want to keep it private and hide. A choice you did not take, you are slowly moving forward. I will suggest what I did. I did not take the surgery route because I do not have the courage. You are courage’s for just starting to talk to people about your emotions. You will be OK. I have had the horror stories as well. They came and went. They come and go. How long does it take to get over the depressed feeling is up to you. There are thousands of us. Some stop living. I am not a doctor but, I do have a way to reduce all symptoms. NEVER eat more than a few tablespoons TOTAL of anything you want at a time. Do not take away your favorite foods eat them over time. Eat a few Tablespoons of food every few hours and maintain a safe weight. Take a water soluble fiber. It is always better to be in a diarrhea situation though it keeps you close to a facility. The pain is much less and the disease less damaging than when it swings to constipation. Everyone has something to deal with. You and I and all Chron's sufferers cannot eat very much at a time just a little every few hours. Learn to love peppermint. The only thing that makes you different from some others is you have a touchy gut. Millions do. Faith is many sided. Faith in yourself (we all know you have that because you are discussing personal things on a web site). You are reaching out. You are unafraid. You never mention fear. Learn to eat to live not live to eat. The Chron's creed so to speak. Get your chin up and learn your body again. Get back in the ring. You are going to be fine. You just happen to not be able to deal with food the same as some others. For all of us it has a small part of our lives. There is no other choice. So the world is changed for you. Food is no longer your priority. Life is. If you have no faith who gave you the guts to be as strong as you are now? Faith is your own. It means you believe in something. Something that is all yours to believe in and celebrate how you believe in it. You believe in yourself obviously. You aren't giving up your reaching out. It appears as if you have Faith in us, others and most importantly, yourself. I believe in God. I believe you are making progress. I wonder where you got the faith to carry on? Win this it is only about food.

Bobby
Posted 11/3/2013 12:45 AM (GMT 0)
Thank you, Bobby dude >.>

I do feel a bit better today. I went with my mum to the local fireworks display on the village green this evening. Beforehand, I had no enthusiasm about going, but I'm glad I went 'cos it was the first thing I have managed to enjoy in months. The bonfire was cracking. And the opening of the fireworks was genuinely spectacular; it was a windy night anyway, but it positively howled during the intro, Bach's fugue in D Major, a suitably gothic and dramatic piece of music (my mum knew the title, not me). And the fireworks themselves were great. Not a lot to say about fireworks other than they go bang and look pretty, but I do like them.

@Bobby - Yeah, I think almost everyone with Crohn's ends up changing their diet to manage their symptoms. Some folks follow preset diets, while others just make up their own rules. With me, I just ended up eating less and less, until I lost loads of weight that way and became underweight. It didn't happen quickly and I wasn't even doing it all that consciously. I did find I could control symptoms to some extent that way, but never entirely; more to the point, in me it did not stop the underlying disease from progressing to greater severity :-/ But in somebody else it might do.

Anyway, with an ileostomy I can eat more freely now. I'll never be entirely free from the fear of obstruction, particularly as people with ileostomies can have them even without a bowel disease. But I don't go overboard with food - luckily, I don't incline towards comfort eating when stressed or upset, otherwise I'd be about 50 stone by now. But I do eat fairly cautiously. Spicy food seems to be no problem anymore, but that's about the only major change in my diet, really.

Anyway, I am off to bed once again. Take care, chum :p (And everyone else, too)
Posted 11/3/2013 2:54 AM (GMT 0)
Fireworks on the village green set to Bach sounds amazing! What's the weather like where you live? It's already quite cold where I live. I'm glad you got out for something fun!
Posted 11/3/2013 6:54 PM (GMT 0)
Not as cold as it normally is at the beginning of November. We had a really mild autumn; some days you could go out in a t-shirt.

The feeling slightly better is continuing, but I don't want to jinx it... >.> I'm not even asking to be happy; I just want the depression to go away :/

Anyway, thanks muchly, gumby :p
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