HealingWell
Search Close Search
☰

Depressed post warning

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 3/22/2012 12:30 AM (GMT 0)
This is not gonna be uplifting, I'm afraid. I have fallen into a state of depression I cannot shake myself out of. I dunno if posting will help or not. I'm just utterly out of ideas.

I was doing more-or-less okay until a few weeks ago. Not brilliantly, but coping. Then I started the elemental diet and everything went pear-shaped after that. I was on edge, agitated, anxious, depressed. I yelled at the IBD nurse over the phone for a bureaucratic decision that wasn't her fault; I apologised the next day on her answering machine and again a week later via email, but have not had a reply from her - so now I feel like she seen me in a different light and doesn't want to speak to me. Paranoid that she told the consultant, whom I'm seeing in a couple of weeks' time.

I managed to follow the elemental diet for two weeks, during which time I was not able to drink the recommended amount of drinks, even though at times I was starving. Instead of it calming my stomach down, I had bloating, gas, discomfort, and nausea. My fevers made a comeback.

After a family row, I decided I just didn't care anymore and broke the elemental diet with a bowl of soup, cheese and a bit of bread. Ever since then I have been eating normal food. Well, I have been less psycho since going back to regular food, but in some ways the depression is even more entrenched.

I feel unwell, unhealthy, exhausted, but not so that I can't function. I can leave the house. I have never been trapped by diarrhoea. But I have no energy, I don't have the mental strength to fight my paranoid, frightened thoughts any more. I feel like I am being 'punished' and even though the logical side of me knows that doesn't make sense, can't be true, I feel so utterly rotten inside that sometimes that is the stronger feeling, tbh.

I can have an ileostomy, but just feel caught between a rock and a hard place. Can't get better without surgery, but surgery has so many complications of its own, it feels almost like going from the frying pan to the fire. How can I decide about something like having a bag for life? I just can't; I don't know what to do.

I'm sorry.
Posted 3/22/2012 1:37 AM (GMT 0)
Well, turns out writing did help me feel slightly better, but now I feel guilty for whinging. Sorry :-/
Posted 3/22/2012 2:20 AM (GMT 0)
Hi NCOT,
I am sorry to see that you are having a rough time with everything. I wish I had something more uplifting to say than I hope you feel better soon. I know that Crohn's and it's little helpers arthritis, depression, and so forth can be overwhelming at times. I also feel that sometimes there is no point to putting up with this disease but my family and friends usually help me punch through the sadness and irritation. I know that you have alot of friends on this website and we are all wishing you well. Just hang in there! We are all in this mess together and we will all get through it somehow!

Sierra
Posted 3/22/2012 2:25 AM (GMT 0)
NCOT, take a few minutes to visit the ostomy forum and ask questions of those folks. How did they decide? What were they worried about? What turned out better than expected? What was worse? What surprised them?
Posted 3/22/2012 2:32 AM (GMT 0)
Hang in there! Give the Remicade a good chance, it can take some time especially with long term people.
Posted 3/22/2012 3:02 AM (GMT 0)
First of all, please don't apologize for feeling depressed and venting. I don't think it's possible to be sick for as long as you have and not feel depressed. It is a very tough decision to have an ileostomy, but it may be even worse having to live your life depressed, exhausted and in pain all the time. I agree with Kazbern that it may help to write to the ostomy folks when you are ready.

I also am wondering if you think antidepressant medication or counseling may be helpful. The antidepressants may help stabilize the intensity of your feelings, and help you to function. When I was really sick, I thought about taking them, but I couldn't get myself to add one more medication to the mix and deal with potential side effects,etc., so I completely understand why you might not want to try them, but it is something to consider if you are having trouble with depression. A mental health therapist could be an objective listener for you, and may be able to help you sort out your feelings and come up with a decision about the ileostomy.

I think there is an element of grief with chronic illness, but unlike a loss like a death, you don't go through the stages of grief once and reach resolution, but you go around in circles with it as your condition changes. I hate the feeling that you can't see the future so you don't have any time frame to count on to know when/if you are going to feel better. It really sucks! Even in remission, I feel joyful and happy to have my life back, but there is always that foreboding feeling in the background, knowing I can get knocked down at any time.

I know that even with a support network around you, it is very lonely to feel so sick. You have done your best with apologizing to the nurse. If she is a professional, then she will take into account that you lost it when you were at your lowest, and she will move on and not hold it against you. When you get into having very negative thoughts, like that your illness is you being punished in some way, then try to notice the thought and let your logic win. Think of all the innocent children, who, for no fault of their own get cancer, or all of the people killed by tsunamis, wars, etc. I know you well enough to know those negative thoughts of yours make no sense. Feeling are often not logical though, so I understand how you get there in your head, but you need to fight back with logic....

Ok, enough of my aimless rambling....Hopefully something I said was helpful, but I guess the most important thing I want to say is that I am so sorry you are having it so rough. Hang in there and keep writing. We are here for you.
Posted 3/22/2012 4:59 AM (GMT 0)
My best advise to tell is to come to the ostomy board. I promise you will not regret it! It is amazing how much an ileostomy will change your life for the better! Talking to people on that board, its really an eye opener, some stories you reade are of people crying with happiness because of how much better they feel. For me, that's truly inspiring and gives me hope.

What is it about the ileostomy that has you questioning it? An ileostomy will not keep you from doing anything. There is nothing you cannot do with it. Is there something, some activity, some place you want to go, that you can't do now because of your current condition? I bet you can do it once you feel better and don't have to worry about where a toilet is.

Just as gumby said, I've been around here for long enough to understand that you are not living the life you want to or should be living. You don't deserve to live like you are living. And don't scoff at that! I'm serious! You deserve everything you want out of life!

And I must ask you, and I hope I am not insulting here, that is no where close to my intention, why not do everything possible to make that life a reality? If surgery really is the best option, why not do it? I am somewhat being retorical here...more just trying to get you to think about the question. Is there something holding you back from getting better and getting well? Again, just trying to get you to think about it.

I also understand where you are coming from with those punishing and why me? questions. I've had disease after disease....first Crohn's then cancer then Crohn's came back with a vengenance, then broken bones because of prednisone...and I sometimes ask, why me? What did I do to deserve this? And the truth is, nothing, it just happens. I just have rotten luck in this matter. I think about what it is practically. It is what it is. I completely understand where you are coming from in this respect.

I also second what gumby suggests in regards to a counselor and some medication to get you through when times are tough. If you are already on some rx's, then maybe think about going on something different or maybe something stronger. If you are already on something, then it probably isn't working like it is supposed to know if you are so down in the dumps.

I really wish you the best with everything. Don't be afraid to ask questions to others AND yourself. We are here to support you and are not going anywhere! I give you my best and hope you to get better in everyway possible!

OH! And no apologies for venting! If you and everyone else weren't allowed to vent and write about troubled times, then others should not be allowed to write about happy times! So there is no reason not to vent! I encourage it if it makes you feel better! :)
Posted 3/22/2012 9:41 AM (GMT 0)
Morning NCoT

Sorry that you are having a tough time of it.
I personally know of 4 people that have a bag the youngest was 21 when he had his(now in late twenties(?)) Another had theirs about two years ago(late twenties/early thirties) the third last year(fifties) and the other many years ago(before I knew them) Every single one of them has said that it is the best thing they have ever done and that they have their life back!! Also what I would find reassuring is that unless they tell you, you really don't know what they have had done! I think that some peoples fear is that others will 'know', that in someway it will be obvious, but it really isn't. The young man I refer to who I have known for about three years, told me last week and I never had an inkling and it doesn't make the slightest bit of difference to me.

Chin up (((((((((((((((((hugs)))))))))))))))))
Posted 3/22/2012 2:16 PM (GMT 0)
Thank you, folks: your replies are much appreciated. I especially appreciate the encouraging comments about an ileostomy, because my parents and even my consultant have spoken about it like it's a dreadful thing, something better avoided. My mum is particularly discouraging. So I can't help feeling that unless it's an actual life-or-death emergency, it's somewhat 'indulgent' to electively choose to have an ileostomy - especially as in my case it would be permanent and irreversible.

At any rate, I have read some threads about the experiences of having an ileostomy, but have put off asking anybody about it. I think I'm scared. I've got an appointment with a stoma nurse next week, so maybe that will help. And I will make a thread on the ostomy board...

Re depression. I'm on a low dose of Venlafaxine (generic Effexor), which for a while appeared to work. At any rate, I felt more cheerful and even my GP commented on how better I seemed. Alas its effect seems to have utterly worn off. The most obvious thing would be to increase the dose, but I'm wary about that due to a past history I won't bore or depress you all with now. That said, because I am on such a low dose (37.5mg), I think I can afford to up the dose to 75mg without hopefully too much risk.

I'm also due to start group CBT therapy on the 3rd April: unfortunately that clashes with an appointment with my consultant :-/ That's not so good, as I did really want to speak to the consultant. But I can't help feeling that skipping the first session of group therapy will put me at a disadvantage. Maybe I'll rearrange the appointment with the consultant if it isn't set too far back.

Re the feeling of being 'punished'. I know I am not being punished really, because if I was, then millions - if not billions - of others must be too. The feeling tends to occur in the evening/night, when I am nearly always at my lowest ebb. Night can be an extremely bad time for me, for various reasons, and sometimes I have literally no strength left to fight my brain. However, for the sake of my sanity, I have to try... :-/

Thanks once again, folks.
Posted 3/22/2012 5:59 PM (GMT 0)
Sorry you're feeling so low, NCOT. Some great advice above. Now why would you have to have a permanent ileostomy?

You're not being punished. I'm pretty sure our suffering is just a part of our broken world. Some have this, some have that, some have something else altogether, some seem to have lots of luck. But most of us probably suffer in one way or another at some point. It helps to hope for better things later on.

Hope you feel better soon.
Posted 3/22/2012 7:04 PM (GMT 0)
What about trying antibiotics? If I were in your situation, I would try anti-Map therapy before surgery. There's John Hermon-Taylor (at Kings? Can't remember?) in London. He does respond to emails and if you drop him a line he might put you in touch with a GI who would be willing to offer you this treatment. It's worth a shot? Just throwing that out there as a potentially promising option?
Posted 3/22/2012 7:24 PM (GMT 0)
My stoma nurse took great pains to tell me that the posts you see on the ostomies board are not indicative of the typical ostomy experience. Just as with the Crohn's board, people tend to post there when they're having trouble, but she said that lots of people just sail through with few dramas at all.

Group therapy sounds a great idea - glad you're trying it.

Got to run, but hang in there.

Ivy.
Posted 3/22/2012 7:47 PM (GMT 0)
As well as Prof Hermon Taylor what about looking into research that was going on at Nottingham(Queens?) Hospital.
It involved chemo and bone marrow(I think). One of our members went on it and became well again(so much so that we haven't seen him since !! :) )
Posted 3/23/2012 1:47 AM (GMT 0)
Hi NCOT,
It sounds like you are systematically taking all the steps you can to get well. Good for you! It makes sense to me for you to increase the Effexor dose, as long as your doc thinks it's safe and won't cause side effects. I think you may really like the CBT group. They will teach you how to recognize when you are having negative thoughts and teach you constructive ways to look at things with more logic and positive thoughts, feelings and behaviors. You may really like having group support too. CBT does not deal with family dynamics....I know you struggle with your parents sometimes. Is the CBT group specific for people with Chronic illnesses, or just a depression group? I hope you get lots of good info from the stoma nurse too. You sounded a little better in your last post. I hope that's true, and no just my wishful thinking. Take good care and let us know what you find out.
Posted 3/23/2012 6:09 AM (GMT 0)
NCOT, so very sorry you are having such a rough time right now. I remember feeling like I was being punished when i was at my sickest. I think it's only natural to have those feelings when you have suffered so much. It can slip into depression. It also seemed that when I was my sickest, I would have depression and anxiety. While I didn't end up needing it, I would have taken a colostomy to get out of the darn pain.
Posted 3/23/2012 10:59 PM (GMT 0)
I finally managed to post on the Ostomies board and, as usual, it's a whopper of a post from me... >_>

The combined effort of thinking and writing has tired me out, however, so (luckily?) this will be a much shorter post :p

@Roni - They won't do a resection because, as I have Crohn's throughout the colon, there is no healthy tissue to reconnect the small bowel to. They won't consider a j-pouch because I have Crohn's. That leaves permanent ileostomy as the only surgical option left, apparently :-/

@killcolitis and vixen - I'll bring up those two things with my consultant: seems like nothing is lost by doing so. I dunno about contacting Prof Hermon Taylor directly: I'll check him out (stalk >_>) on google first before deciding if it is worth appealing to him as a last hope.

@ivy - Thanks, that's pretty reassuring!

@gumby - I increased the Effexor dose last night. Not worried about contacting my GP to do it, as he would have me on quadruple the dose if he could <_<. Had terrible nausea, but luckily it passed quite quickly. Even on 37.5mg I feel a bit sick sometimes, but it's gone after about an hour. As for the CBT group, it's for the depressed in general, not for the chronically ill. Hopefully that won't really matter, though. I worry more about the group consisting of all mums; not that I mind mums in any way, but I am not a mum myself and I think that does make a difference. By the way, it's not entirely wishful thinking on your part. I do feel better today, although I will have to rest after this post :-/

@gumby - Yeah. Logic tells you that nothing is punishing you (or else millions, if not billions, of others are being punished as well), but when you are really sick or depressed logic flies out of the window. And while I don't have extreme pain, it's chronic and ongoing enough that I have frequently reached the point of being prepared to have surgery to get rid of it.
Posted 3/24/2012 12:13 AM (GMT 0)
NCOT,

I am so sorry that you are feeling so overwhelmingly depressed. I have been there too at times, and it's tough. I think being able to reach out to others helps a little.

I'm wondering if you might not be very low in both: vitamin b12 and vitamin d3, both correlate (low levels that is) with serious depression, and if you're low in both it would be like a double whammie!

Also, have you eve given any thought to trying LDN, low dose naltrexone?
Dr. Jill Smith at Penn State did 2 studies (which were published in medical journals ) showing a high percentage or people going into remission.
Why not try LDN before surgery?

What do you think?
Posted 3/24/2012 7:47 AM (GMT 0)
I'm so proud of you and happy for you for making that post on the Ostomies board! :)

You'll definitely get great advice there, here lots of stories and have people tell you like it is!

I think it's a good idea with increasing your Effexor meds. That should hopefully make you feel better!

I'm definitely all for trying all of the alternative treatments and therapies possible before having that final, major surgery. I'm doing that now as well. I'm not trying to throw out suggestions to any therapies that is not my intention by any means, but you also need to consider what is best for you and what is not. Someone had mentioned a treatment that mixed chemotherapy and a bone marrow transplant (or something to that effect) and I cannot imagine personally trying that treatment. As someone who has had cancer before and had radiation (not the same as chemo, I know), I know how much this can destroy your body. I have no experience with bone marrow and have no knowledge about it but I can't imagine it would be easy, not painful, or not haveside effects. For me, personally I would skip a treatment such as this and choose major, final surgery instead. Just want you to realize and choose for yourself what is best for you, your situation and your quality of life. (Just to be clear, I'm not against any treatment if it can make someone well! Just trying to point out that some options are not viable for some people while some are possible for others.)

Also, I just want to let you know that I am in the same boat as you, more than I actually realized! I currently have a temporary ileostomy, but have had it for almost two years. Not a lot has worked, including the ilesotomy (through no fault of the ostomy, though); I still have more options though, in fact, I have gotten worse in some aspects, and am possibly lookng at a permanent ileostomy with everything removed as well.

I'm so happy you took that big step!

Good luck and we're all here for you!
Posted 3/24/2012 4:39 PM (GMT 0)
NCOT,

Have you considered trying non-traditional medicine? If the surgery is your only option I feel like you with have nothing to lose with trying something different. Maybe an herbalist and accupuncture? I did a study about 5 years ago that involved herbal treatment of my Crohns and it worked well for me. Then the study was over and after several months I wound up on Remicade. I'll try to find the name of the herb for you.
✚ New Topic ✚ Reply