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Posted 7/30/2013 12:31 PM (GMT 0)
I could just get banned, but I don't want to do anything that dumb.

Truth is, I have a depression which is close to being suicidal and I think coming to HW and torturing myself by reading about all the people who can have reversals is killing me mentally and probably actually risking the return of my Crohn's I'm so stressed out by it at all.

I am stark raving mad I cannot have a reversal. The j-pouch has been around since the 70s and honed to the point it has a less than 2% failure rate. Meanwhile for the 2 Crohn's colitis patients a year who can't have a j-pouch, there is absolutely nothing. I don't see why an artificial j-pouch can't have been constructed by now, but the time and money in research for the 2 Crohn's colitis patients a year who still actually end up with permanent stomas probably isn't worth it.

Nothing can make this better for me. 99% of people could praise their stomas down to the ground, it means nothing to me. I hate having a stoma. I don't even like calling 'my' stoma, let alone giving it a 'cute' pet name. You know what I hate most about it? Seeing poo come out of it, and it going all over my hands, thighs, etc. It's such a revolting piece of apparatus. I honestly thought I was immune to being disgusted after 13 years of Crohn's, but I got one thing wrong: with a functioning butt you can't exactly see anything come out of the butt hole, luckily, otherwise it might be a different story.

I'm sure it's just me only. It usually is just me. But I have lost all faith and hope and for the last month been wishing I had never had the operation. Even if that choice had resulted in death, I would have been at peace with that, knowing what I know today. I can't accept that in this day and age, and with current medical technology, absolutely nothing has changed since the 1950s.
Posted 7/30/2013 12:59 PM (GMT 0)
I'm not even seeing the stoma nurses anymore. That was the one thing which helped, I think, and now the weekly/fortnightly appointments have just stopped. It wasn't like I went on like this during them either, but it did just kinda help me feel better.

I'm gonna go to the supermarket with my parents and sit in the cafe and have a cup of coffee..... :-/
Posted 7/30/2013 1:17 PM (GMT 0)
Man, don't go anywhere, I'd miss you.

Second you should have posted this in the ostomy section to stir the pot good.

Third, if after a year you have zero infllammation in your small bowel, you can demand to get a pouch and you can state that living with a bag is detrimental to your mental health and you cannot and will not live like that.

They will make you a pouch. I'm telling you, I know this lady that has Crohn's colitis and has a J pouch.
Posted 7/30/2013 1:52 PM (GMT 0)
Hi NCOT,
If you want to take a break fron HW, then you can....you don't need to get banned! I'm sorry this is all so hard for you! You need to do what is best for you, and if being here is too emotionally triggering, then by all means, take a break. I don't have any advice about the surgery, unfortunately. I for one, will miss you terribly. You have been a huge source of support for me, but like the rest of us, we will all muddle through. Do what is best for you, and know, to the extent that I can love strangers on the internet, I care very much about you and wish you well!
Posted 7/30/2013 4:44 PM (GMT 0)
Hey NCOT, have you heard anything about seeing a councellor /Phycologist yet? I think you would really benefit from seeing one you can rant and rave about how you feel to them and they will listen and are not jugemental at all.If your not seeing anyone yet maybe push your doc to get on to them and make you a priority. You have been suffering for nearly 8 months now and i really don't think you will ever accept your stoma without some sort of intervention from a professional I really wish I could make things better for you take care Bev x
Posted 7/30/2013 6:49 PM (GMT 0)
Back from the supermarket, but didn't have a coffee 'cos the Waitrose cafe was packed out with middle-class mums and their kids... >.>

I found out my brother is coming down next week. I dunno how long he's staying with us for, but that might help to get me out of myself a bit. The last time he came down I was doing the elemental diet and the elemental diet made me feel how 80mg of Pred would make other people feel: psychotic. At least I'm not not on that any longer.

I'm calmer now, but am not sure how long it will last... :-/ I was thinking of asking admin to close my account for a few months, partly for my own benefit, partly to spare other people my whinge-ridden posts. I do sometimes wonder if it would have been easier for me in pre-internet days in some ways. I wouldn't have had anybody else to compare myself, wouldn't really have known anything about reversals or j-pouches, etc.

@Dude - Posting this on the Ostomy board probably would have gotten me banned... >.>

The thing what gets me about stoma vs pouch is this: when I'm worried about Crohn's coming back, the stoma nurses are all like 'don't worry about it!', but apparently if I get a pouch it'll be riddled with fistulas and so on within a year according to the surgeon.

I already argued once with the surgeon about a j-pouch (actually it was more like her laying down the law, but for convenience's sake I'll refer to it as an 'argument'). She just point-blank told me I'd waste another 4-5 years of my life if I got a j-pouch. Gave a year for the surgeries, a year for the Crohn's to return, another year or two of dealing with it, then a year for the surgery to revert to an ileostomy when I finally had enough.

It's having had terminal ileum disease which has really killed any chance of a j-pouch for me. I'm so utterly mad just a few extra inches of disease (now gone) could make such a difference. My only hope of a reversal lies in an ileorectal anastomosis, which the surgeon has said is possible. But that depends on having a disease-free rectum and I fear mine isn't. I'll take steroid and mesalamine suppositories to get it into shape if I have to... ._.

@gumby - Hey, it works both ways. You've been a huge source of support to me as well, including now. *virtual hug* >_>

@chrohnielass - Yes I have! Believe it or not, though it may not sound like it, I've had my first session already... >.> I didn't feel like the first session helped a lot, but to be fair I missed about 20 minutes of it (I was on time, but I went to the place it said on the letter and the receptionist didn't have a clue, so cue being sent to another part of the hospital, where they didn't have a clue either, etc.). Also, the session was spent mainly on getting the psychologist up to speed and not much on feelings. So hopefully it'll go a bit better from now on.

Anyway, thank you. Just from your sig alone, I can see you've suffered for longer than I have and ended up with a permanent ileostomy as well. You are always very sweet to everyone in your replies. Puts me to shame actually... >.>
Posted 7/30/2013 7:03 PM (GMT 0)
Hang in there with the sessions they do get better.the first few I had I thought what a waste of time but as the pro gets to know more about you the sessions get better and more indepth expect lots of tears & anger from your side it gets very emotional but that is all part of it. they will go right back to your childhood up to the present dayI had a few uncomfortable bits to deal with but ploughed through it. Just don't give up when the going gets tough. Best of luck with it really hope that the therapy helps you Bev x
Posted 7/30/2013 9:36 PM (GMT 0)
I hope it gets better, 'cos I wasn't sure what to make of the guy. I didn't dislike him, but I didn't warm to him either :-/

How long did your therapy go on for? I've been told to expect it to last for about 12 sessions. I'm a bit worried about having it cut off just at the point I start finding it useful!
Posted 7/30/2013 11:38 PM (GMT 0)
12 sessions isn't a lot of time...that's considered short term therapy...Is it the NHS that determines the number of sessions? If that's the case, my guess is that he'll focus on coping skills and more of your present day stressors, and much less focus on your childhood....that may be what you want anyway. The first session is hard, especially if you were so late. He needs time to get to know you and the first time he's gathering information and can't really give a whole lot of feedback in return. So you end out feeling like you just spilled your guts (pun very much intended) and you don't get much back. But hang in there and give it a chance. If you even gain a tiny change in perspective, it may do you a world of good.
Posted 7/31/2013 12:06 AM (GMT 0)
NHS, yeah. Mental health gets lowest priority, so the chances of them paying for two years of therapy to talk about how much your parents ruined your life is remote.

Like you said, the emphasis is on practical, CBT-type, therapy. That's not to say they won't ask about your childhood at all, but it won't be the main focus.

Spot-on about the first session: spilling my guts out without getting much in return was exactly how I felt at the end. But I do realise he needs that info to get anywhere. Hopefully it'll get better as it goes along.
Posted 7/31/2013 2:13 AM (GMT 0)
Hi NCOT - I have been following your surgery story and I am truly sorry for the struggles you are having. Are you feeling better physically from the surgery? I, too, am facing surgery in the near future, although it will be a resection, so I do not have the stoma to deal with, which sounds like your beast.

I hope work with a psychologist helps - it may be a combination of that and time. Just know that you are right to feel the way you do, you have lost a huge part of yourself and you are allowed a time to grieve for that. Just recognizing that you are depressed and having trouble dealing truly is a good step. I think it is good that you are getting out and still have a sense of humor about things. Life can be so unfair sometimes. Hang in there. While it may seem hopeless now, I think you have a very full and bright future - life is so variable.
Posted 7/31/2013 12:51 PM (GMT 0)
(((Hugs))). Keep with the psychologist - I've been seeing a good psychologist and taking an anti depressant and it is helping me. I hope it helps you as well. I know you don't feel any right now, but there is hope.

I have no advice, just lots of sympathy. The one thing I have learned through my husbands illness is that happiness is all about perspective. I sincerely hope you'll find and be able to remain in the perspective that takes away this pain and angst.

I have often wished the Internet didn't exist. I obsessively read about everything that can go wrong, all the med side effects etc. I know I annoy my husbands GI on occasion with my questions. I always felt knowledge is power. But I have also learned that ignorance is bliss. But sticking your head in the sand and pulling the ostrich maneuver can't be the right answer. So instead, even armed with information, I have been working on finding a perspective that helps with my sanity.

PV
Posted 7/31/2013 2:55 PM (GMT 0)
NCOI, I been seeing a therapist for about 14 months but now only see her maybe once every 2 months I also have her E-mail if I feel I need to see her before but, so far so good. When I said that the ask about your Childhood its just to see if problems stem from there but like the others said its just skimmed over. With me we found that mine stemmed from soon after being diagnosed with crohns. Good luck and keep going! xx
Posted 8/1/2013 12:19 AM (GMT 0)
Guys, I've got to go to bed now... Somehow half an hour passed without me noticing and I have to be up early for the appointment :-/

Myrne - Saw your surgery thread. I don't have any personal experiences which would be very relevant, but I think you're doing the right thing - surgery brings most people years of remission before they have to deal with Crohn's again.

PV - Cheers. Hugs :p

Crohnielass - Thanks!

Okay, goodnight folks. I'll let you know how it went tomorrow... >_>
Posted 8/1/2013 1:22 PM (GMT 0)
Well, after the excruciating first half hour (where he went over the sheets I had filled in for a week), it got better and felt more productive than last week.

But it's already being disrupted. The guy's now going away for 3 weeks and even when he gets back I don't have a guaranteed slot with him at the end of August. It boils down to too many people on the waiting list; now I've had my assessment I don't have top priority anymore and so somebody who's still on the waiting list might take my place instead. W-t-f? Nobody told me it was gonna be like that: I thought I'd have about 12 sessions.

Typical NHS. Absolutely zero continuity. The first thing I did when I joined this hospital two years ago was request to see the same doctor each time. I said I'd wait longer for appointments if I had to, but I just didn't want to see a different doctor every other visit. They did by and large honour that: on the rare occasion my own doctor wasn't in, I just remade the appointment (I saw a different, more junior, doctor once; it wasn't worth my time or his).

But this is a bit different. Mental health gets absolutely the lowest priority on the NHS. This psychologist doesn't even seem to be officially aligned with the hospital - he's obviously somebody they bring in one morning a week. Go to the hospital's website and he's nowhere to be found on there either.

Beginning to think the only way to ensure consistent weekly treatment with the same person is to go private.
Posted 8/1/2013 1:39 PM (GMT 0)
So it's all feeling a bit pointless now. I need the help now, not in a month's time.

Can't vent on the Ostomy board, they all hate me over there. Don't think the UC folk like me a whole lot either. The Depression lot haven't seen enough of me to hate me yet.

Well, okay, the psychologist's secretary has literally just phoned; I have an appointment with the same guy on the 29th August at least. Now to twiddle my thumbs for a month... :-/
Posted 8/1/2013 1:40 PM (GMT 0)
If you like the psychologist, then wait it out for him and maybe get some self help books on CBT in the meantime. Any possibility of your family helping you to go to a private therapist? That does really stink though NCOT, I'm sorry!

Have you thought any more about getting that puppy? Summer is the best time to train one and it will take your focus somewhere else.
Posted 8/1/2013 1:59 PM (GMT 0)
Another idea is to ask NHS to pass your intake information to a therapist that is available sooner and start with another person quicker than the 3 weeks wait. I am frustrated for you, so I can imagine how you feel!!
Posted 8/1/2013 2:04 PM (GMT 0)
I just don't think self-help books are enough. They're too general. They're always aimed at people who may be suffering in some way, but they've still managed to marry, have families and work. I haven't, and I want to know why I was so unable to function I literally couldn't pursue a normal life. And a CBT self-help book can't give me that info that I need to know...

As for a puppy, I must admit I have been putting that off. I was almost gonna bite the bullet and go for it: ring up people, etc. And then I became so hopeless and depressed about everything, I just gave up. I felt like I couldn't do it.

:-/

Edit: The psychologist did actually ask me if I wanted to see another member of the team! Thought about it for a minute, but decided I was okay with him. Anyway, there isn't any guarantee that if I switched to somebody else, they wouldn't pass me from pillar to post, or keep on cancelling appointments, either (like a certain occupational therapist, who was quite good, but cancelled more appointments than she ever kept).

Post Edited (NiceCupOfTea) : 8/1/2013 8:07:31 AM (GMT-6)

Posted 8/3/2013 5:18 AM (GMT 0)
Hugs, if you went, I'd miss you. I think being as honest as you are really does help people. You're just telling it the way it is, and I appreciate that. Now they are working on crohn's research more than they ever have. Something is bound to come up to help you. You are in my prayers...keep the faith and keep on keeping on, one day at a time.
Posted 8/4/2013 10:16 PM (GMT 0)
Thank you, dorri, for a sweet post :p
Posted 8/4/2013 10:48 PM (GMT 0)
HI NCOT!,
How's life treating you today?? I have my SBFT test tomorrow. I'm not really expecting it to show anything, but doing it anyway. I suppose if it shows a minor narrowing or some such thing, then maybe my doc will move past the stupid Pentasa and do something else.

I hope you did something fun this week-end. My 24 yr old son was in a soccer tournament in a men's league downstate. It's just a recreational league, but I haven't watched him play since he was in high school and it was pretty fun. He's really talented, so it was beautiful to watch and I missed the old days when he was a little boy. I missed the first game due to getting stuck in the bathroom pooping, but they made it all the way to the finals so I saw a lot of soccer. Came home exhausted, but I'm trying to live my life, even when I don't feel well....I have this fear that I may get worse, and this may be the best I can get. I guess that sounds pretty depressive, but I'm a little stuck at the moment. Anyway, just checking in. I really want you to get that dog.....I think you will be so glad you did.
Posted 8/4/2013 11:58 PM (GMT 0)
Yo, gumby :p

Today has been okay, except I seem to be just twiddling my thumbs and not really having a clue what to do now that I'm better :-/ So, nah, not a very good weekend from my point of view, but I'm glad you had fun watching your son's match. Is that 'soccer' as in real football (sorry, I don't know what else to call it... >_>) or American football? Anyway, congrats to your son's team: sounds like they did really well.

No, trying to live your life despite exhaustion and other physical issues isn't depressing. Fear of getting worse isn't depressing; it's realistic. Not that I think you will necessarily get worse! But the possibility is there, and pretending it isn't would just be lying. I know when you're ill, if it goes on for long enough that starts to become your new reality and you can't imagine ever being well again. That was my reality for years; then surgery made me better and now I have a whole new raft of difficulties to face that I ignored while ill - there's depressive thinking for you >_>.

I'm going to start looking for a dog as from tomorrow. I think you may just be right...

Okay, I'm gonna be off to bed now: 1am for me here. Goodnight, gumby, take care :p
Posted 8/5/2013 12:34 AM (GMT 0)
Futbol... not American football. Americans call it soccer. Can't wait to hear about the dog search...I'm a big dog lover. Take care
Posted 8/6/2013 12:41 AM (GMT 0)
Cool :p

I, er, haven't started my search yet... :-/ I keep putting it off, much like the rest of my life =/
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