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Posted 2/4/2008 1:51 AM (GMT 0)
Hi Everyone,

So sorry to dump this on u all, but i just feel so helpless and out of control right now. I have been so sick with this horrible disease with no relief insight. As i posted a while back when i was in Vietnam on holidays and got sick over there last october to end of november i have been unable to beat it. I will try not to make this too long winded, but since coming back from overseas i have been hospitalized 3 times with bowel obstructions. The pain is horrible as i know u are all aware. I am on remicade infusions that seem to be no longer working as my inflamation and liver readings are through the roof, and its now got to the point my GI has no idea what to give me anymore since i have had severe allergic reactions to pretty much every other drug for crohns. I cant stop crying and even feel suicidal, i keep telling myself it has to get better but after 20 years of battling i am feeling like there is no light at the end of the tunnel anymore. The doc has me on 80 mgs of pred per day as well which i know would be accounting for my moods at the moment, but i am really scared at my frame of mind right now. I am reminding myself at how there are people worse of than me and i should be able to handle this but its getting harder as each day goes by. How do i do this? There is so much to tell u all but would be way too long. I do have a great family and 2 beautiful grandkids and a boyfriend that has stuck by me even though i have now lost control of my bowel in front of him 3 times now, but even with them i still dont want to be here anymore. please help. Going to GI this afternoon

andorable

Posted 2/4/2008 2:09 AM (GMT 0)
andorable,

Please contact me and I will give you a detailed report as to how I got off of Remicade and all meds. I went from 15 to 20 bm's down to about 4 a day. I don't suffer with joint pain, extreme fatigue anymore and the ulcers I had on my colon are gone; although I have colitis I feel confident that what helped me can help you.

Click on my username for my email address and I will tell you what helped me and what I'm and doing now to gain a full recovery.

Be well,

Steve.

NBT
Posted 2/4/2008 2:20 AM (GMT 0)
*hug* Andorable. Please, please hang in there. Humira is coming! It is out of trial and is awaiting PBS approval, so you are not completely out of medical options.

I know you're scared, and I completely understand how desperate you must be feeling at the moment. Please just try to get through this one day, and come back for more hugs and to tell us what your gastro said.

Is more surgery an option? Has anyone said?

I'm so sorry.

I.
Posted 2/4/2008 2:21 AM (GMT 0)
PS. There's also the Orencia trial. Has anyone discussed that with you?
Posted 2/4/2008 2:31 AM (GMT 0)
Another PS!

Andorable, I'm still thinking about you, and I'm worried for you.

I wonder if you might consider putting it on the line with your gastro, and telling him (her?) that you are worn out and simply can't do this anymore. I think, sometimes, that doctors forget that we aren't wonderwomen, and sometimes we do really have to scream for help before they'll realise just how bad things are.

It's very serious that you feel that you don't want to be here anymore. Please tell someone.

Sending you strength,

Ivy.
Posted 2/4/2008 2:56 AM (GMT 0)
Andorable,

I wish I could really DO smething to get you better or give you some relief.
So here is a <<<GIANT HUG>>> & <<<HUGE PRAYER>>> for you.


Matthew
Please take care of the depression too..
Posted 2/4/2008 6:49 PM (GMT 0)
Andorable, I agree you should also adress the depression. you may benefit from counseling. this disease is a lot to handle and some of us need help. I hope you find some meds that work. There are some trials out there as well so don't give up hope !! Karen
Posted 2/4/2008 9:18 PM (GMT 0)

Hi andorable,

I can so relate to you. I am not as sick, but I feel your pain. I try to make it one day at a time and when I thought this was too much I remembered my beautiful family and that the pain will go away. I also have been sick constantly since October. I had a baby in August and I felt like October hit and I lost control of my life. I had to stop nursing, I had to call in sick to work a lot and rely on my husband and my mom a lot. Last night was the first time I thought how can I do this anymore. The pain is too much. Then I woke up today and realized hope will come and I will win this flare and have my life back. I call in sick one to two days of my five day week and this is the first week I will start taking days without pay. I am scared, but I also know God and my family and my forum family will give me strength. You give me hope. I pray for you and do hope you feel my big hug to you.  I am also seeing my dr on Wednesday to discuss my anxiety and depression meds because my gastro thought they may need adjustment. I have learned I am not alone and I love that feeling. We are here for you. Please keep us updated.

Kgirlie

Posted 2/5/2008 12:36 AM (GMT 0)
Thanks so much for your kind words everyone. Saw the GI yesterday and we did discuss more surgery and i spoke to him about humira as well but he said that its apparently hard to get for a patient that has been on remicade, dont really know why guess it must be red tape rubbish. I didnt really take much of what he said in cause once again i was a blubbering heap. I am taking lexapro for the depression and have been to counselling but didnt find that helped. I am very much the kind of person that tries not to let anyone know how im feeling cause i dont want to worry anyone so i find it best not to say anything and just try to deal with it the best way i can. The GI has been in touch with the major hospital in brisbane for me to be considered for clinical trials on any new medication, but who knows when that may happen. I want to do so much but just cant and the frustration is driving me mad. My boyfriend and I used to go for lots of walks on the beach but i cant even do that anymore. Thanks for listening

andorable

Posted 2/5/2008 1:17 AM (GMT 0)
Andorable,

I just want you to know that I'm thinking about you right now and want to reach out and give you a big hug.

Please don't give up - I know how hard it is to live with this darn disease, but I also feel there has to be some better treatments just around the corner.
I'm glad you confided in us. I too have had suicidal thoughts in the past and felt that everything looked hopeless. Thankfully I did not follow through, because things have improved dramatically for me - I fell in love and met my wonderful husband, and now have a pretty fulfilling life. I never thought that would happen, because I didn't think anyone would be interested in me. Still some days the crohns symptoms mess me up big-time, and I have my share of "if only" days.
I also lost a friend to suicide 2 years ago this March - and I still question whether there is something I could have said or done to prevent it. The circle of friends she left wishing for one more chance to share a day with her was huge. I cry thinking of her even now. And question if there was some way to have prevented it. I feel guilty I was not there for her. Please seek some help. Go back to the doctor who gave your the anti-depressants and say they're not effective. Go to your local emergency if you're acutely suicidal. They'll help you.
Posted 2/5/2008 1:57 AM (GMT 0)
Hey Andorable! First I am so sorry you are suffering so much. As I am in the US I can't give you much information about local resources. But you are so smart to recognize first and foremost that the high dose of Pred you are on is likely contributing to your suicidal thoughts. You took a huge step admitting them to us! Now you need to admit them to your boyfriend, your kids, your doctor, everyone that is close to you! If that Pred starts attacking you worse you need someone who knows what is going on who can step in and help you. If you ever find yourself thinking of a plan, do not hesitate, call your local emergency number... and stay with someone so that you are not alone!! Once your doctor knows s/he may adjust your pred and try new anti-depressants for you. You are not crazy! You have a chronic disease and medication that is making it so much worse. You need to open up with the people who can help you. I know it is easier said than done and don't forget you always have us!
Posted 2/5/2008 2:25 AM (GMT 0)
andorable
Hello this is Kitt. I am so sorry you are struggling so but please know that your feelings are normal for all you are going through.  You have a very debillitating disease that is in full flare right now and you have every right to feel down and it does seem like it will never get better.

Depression profoundly impairs the ability to function in everyday situations by affecting moods, thoughts, behaviors, and physical well-being. Add to that your disease process.  You are frozen in place.  I know the pit of depression is dark and oh so lonely and sad but there is a light, and if you look up you will see that tiny flicker of hope.  Hold on to it, don't lose it.  Stay in the moment and never give up. 


Begin working, a little bit at a time to climb up out of the pit.  Start now with babysteps. Vent your  feelings and frustrations here on the site.  We are here for you.  Through the day,  take time-outs to relax, breathe deeply and listen to some good music.  Rest when you need to but try to get some exercise in.  It does not have to be a lot at one time but maybe some yoga or just stretching exercises.

I do not know your dose on your med but perhaps there is room to increase your dose.

Most of all believe in yourself and know that you are an important and caring person.  Do not give in to the negative thoughts.  You are much needed by your family and friends.  Use this support group to help you stay strong.

I wish you peace and happiness.  Remember you are in control so rule well.  Hugs
Kitt

Posted 2/5/2008 5:02 AM (GMT 0)

Hi Andorable,

I have been thinking of you constantly today. I send you a big hug. I had a tough day today too. I also saw my gastro and I was in tears. She suggested some more diagnostic tests, but also talking to my primary care doctor about my depression meds. I am taking 20 mg of Lexapro and I know they are no longer doing their job. I am falling asleep and waking up with severe anxiety and horrible depression. I always blame my CD, but unfortunately I have depression and anxiety and I have to remember they are linked, but not treated the same. It's funny because you sound so sweet and you said you don't share your problems, well again unfortunately I do share mine and it is coming back to bite me in the fact that I don't look sick and I have a boss who is challenging my disease. I was informed of her overstepping her boundaries, but I now have to learn to share parts of my life, but not all. Hang in there. I am thinking of you and the biggest blessing is your supportive family. My disease is taking a toll on my husband and he is still hugging me when I am sad and hanging in there. Your boyfriend sounds the same way.

Kgirlie

Posted 2/5/2008 3:52 PM (GMT 0)
Sorry you feel so awful! 80 mg of pred is such a high dose, no wonder you feel worse mentally. I hate prednisone. Well, most of us can relate.

Have you tried imuran recently? Sometimes higher doses of imuran help. Takes a while, tho, as I'm sure you know and I'm not sure how your liver would take it.

Also, have you tried diet changes like the Maker's Diet? It has helped alot of my more severe symptoms, especially obstructions. Some people here who follow these diets very strictly go into remission, after facing surgery as their last option.

If your present treatment isn't working or even helping to make CD more tolerable, then you really need to explore other avenues. Try diet changes & natural things like drinking chamomile and taking probiotics.

Also, you can ask your GI if he can get you into clinical trials. These are extremely risky, but I've been desperate enough to try them. There are also more clinical trials going on using more natural methods nowadays, if that would make you feel more comfortable.

I hope you feel better soon!
Posted 2/5/2008 4:16 PM (GMT 0)
Andorable,

(((((HUGS)))))

I hope that you feel better soon!
Posted 2/5/2008 4:27 PM (GMT 0)
Cyber hugs to you.
As stated before, prednisone can do some funky things to the brain...it did to mine. Yet this disease also sucks...I'm feeling depressed too. Again, cyberhugs...

Ps. Vietnam...WOW, that sounds like such a cool holiday. One day, if I'm lucky...But my husband and I want to do New Zealand and Australia first...when I get better and can afford such a vacation...
Posted 2/5/2008 5:52 PM (GMT 0)
I wonder if you got some type of worm /parasite over there. Worms can create a huge ball mass of worms maybe that is your obstructions. Some worms can become 7 ft long or more get a bunch of those coiled up and you can get blocked. My DH travels all over the world and the company Doc tells them about the many bugs they can pick up . Maybe look into getting meds for these types of bugs. It cant hurt you to get wormed.
Posted 2/5/2008 6:00 PM (GMT 0)
That is so disgusting... but a possibility lol. My husband grew up in Asia and went to tons of rural parts of the various countries. He has bad IBS and I want him to get tested for non-American diseases and parasites.
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