Feel a total failure!

[Welsh-bird]

Well I guess the title says it all and explains exactly how I feel right now!
Only joined this forum on Monday and had some great advice and welcomes (thank you), readmitted to hospital Tues and am now venting again!

In the past 4 months, I've tried and failed at Asacol, Mesavent XL, Ciclosporin, Hydrocortisone IV, Azathioprine, and now it seems 6MP! I've sat and watched other IBD patients come onto the ward and leave after a few days IV treatment, and been wondering 'why can't that be me?' I know that sounds so selfish, but I can't help but think this! My time's running out, and I know that soon I will have my colon removed. Having been released today, my IBD nurse has put me on Temazepam to help me cope, and has also sent an urgent referral for the clinical psychologist. I just feel so low, and wish some one would come take this away!

What I'm wondering is..is it normal to feel this way? I have yet to tell my parents, brother and close friends just how bad thing's have become. Even played down the Ciclosporin drip, and the trip to the colorectal surgeon and stoma nurse 2 weeks ago! I just don't want them worrying. Also I've been taking between 100mg and 40mg of Preds since Feb this year, can these horrid thing's affect your mood? I've had UC for nearly 11 years now, and can honestly say I've never felt this low before, and am certainly not the 'poor me' type - I hate feeling like this!!

Time to pull myself together I think...but in the meantime, thanks for reading!!

Wishing you all a good weeeknd,
And x

 

[Rossy]

Hi there,

How you feel is really no surprise when you consider what you've been through and what you are thinking might be ahead of you, re possible surgery.

It does seem that you have'nt reacted as well as most with all the meds that you have tried so far, however there may be some others that will work for you, so don't give up hope.

I should say however that having your colon removed might just give you your quality of life back, but as i have'nt ventured down that road myself i don't feel able to say anymore, just what i've read others have said.

Pred, Aza, Cyclo and the others are very powerful drugs, some can cause mental imbalances and make you feel "not yourself" your doses at 100mg of pred is really quite high.

You do need support with this, its so much to deal with on your own, its one thing playing things down but you really must let your family know what is happening.

take care

g

 

[Nyx]

Prednisone will definitely make you moody! Especially if you taper too quickly.

Re. having your colon removed: I don't miss most of mine at all Getting Oscar (my stoma) was the best thing that's ever happened to me and my quality of life. If you do wind up going down that road, feel free to contact me if you have any questions/concerns.

Good luck to you, I hope they find something that works for you soon!

 

[Jennifer]

I'm sorry you're going through all this. As said above, Pred is one of the main drugs that screws around with your mood and 100mg is a really high dose. I was on 75mg for a year before they decided that I needed surgery. I don't have a stoma but after reading Nyx's and others posts about having one, it really doesn't sound as bad as we make it out to be in our heads. If that's what you have to do then that's what you have to do and you'll feel better with it. I agree that you should talk to your friends and family about your situation and how you're feeling because you deserve all the support you can get and do go to a psychologist because they are very helpful.

 

[Jerman]

Hi Welsh bird, I am sorry that you are going through such an awful time. I can only advise you to seek out as much support as you can because of the emotional and pyschological impact that these diseases have on our mind, body, and spirit. Feeling physically unwell can slowly creep into your pysche and just adds more troops/stress to the enemies side of the battle. I hope that things get better for you really soon, please be good to yourself.

 

[Swirl]

You were on all those drugs for the past 4 months.
What have you been trying other then the drugs the doctors given you for the past 11 years?

 

[seaofdreams]

It is absolutely normal to feel this way when you're going through everything you have.
Not responding to medication after medication must be incredibly frustrating and I really feel for you and hope that you can find something that works for you soon.
Prednisone is the med from hell. Even on doses as low as 20mg I am moody, anxious, depressed and paranoid so I can't even imagine how you must feel on 100mg.
Don't ever feel guilty or bad that you're sick and that you're worrying your friends and family, it's so important to focus on yourself and to surround yourself with people who care about you and who know what you're going through.
Stay positive and know that you're not alone in this

 

[rygon]

Have you been eating the same things since. Maybe a long shot but it could be something you are allergic to thats giving problems. Make sure you see a dietician. maybe keep a diary of what you eat for a week and post it on here, see if theres anything that can set you off we can see.. again a long shot but you never know

 

[Welsh-bird]

Hi all, thanks so much for the positive advice. Have rung my IBD nurse this morning and left a message with her, advising that I would like to start to tapper down the preds, at least it would eliminate the possibility that they are playing with my head, other than that, maybe it's just the fear of surgery that's causing the anxiety.

Swirl - have tried all those drugs since May this year. The only one's that ever overlapped were the Ciclosporin and Azathioprine. Developed toxicity probs with Ciclo, and an allergy to Aza, hence now trying 6MP. Previous to this, have managed fairly well on Asacol (tabs and occasional supp) with intermitent doses of pred for almost 10 years. Think that's one of the reasons I'm finding this hard. Had one drug hold it for so long, and now can't find anything to take it's place!

Thanks again to you all, it's good to know there's a place to come and sound off with out someone thinking your going crazy!

And x

 

[c1nd1]

hi welsh-bird, my heart goes out to you, i cant understand what your going through as i dont have the disease but my son has some sort of ibd yet to be confirmed, you need the support of your family and friends just being open with them may help some of your anxiety. i hope you start feeling better soon!
cindy

 

[ameslouise]

Welsh-Bird - I do hope you start to feel better soon with the 6MP.

However.... if you are a candidate for the j-pouch surgery, I would urge you to seriously consider it. I wish I had proactively had the surgery, but I kept holding out for the meds to work, and ultimately my colon ruputered. I don't tell you this to freak you out, but to emphasize how GREAT it was to have my colon removed. I felt so much better immediately! I had a bag for a year (it would have only been 3 months if my colon hadn't ruptured) and then the j-pouch construction and ileostomy take down.

There are several of us on here that have had the j-pouch surgery. Sickranchero is one that just had it recently - you can PM him and see how he's doing.

I wish I had thought of surgery as a viable option instead of a last resort. Instead, I waited too long and the decision was made for me when I was rushed to emergency surgery.

With UC, when the colon is gone, the disease is gone! And you can have your life back again....

Good luck - Amy

 

[RiaCake]

Sending a huge hug!! I'm sorry you feel low. It will get better tho, sounds like you'll be much better off having the op, try not to worry too much and trust your doc's x