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Ulcerative Colitis
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Posted 6/8/2013 3:24 PM (GMT 0)
I feel like I am losing my mind, I have been battling this flare off and on since last June, I have had 4 colonoscopies and the last one showed active colitis through my whole colon, bleeding, and ulcers. I am miserable and I don't know what else to do, the pain is too much even with pain meds. I am on prednisone, masalamine, and humira and nothing seems to be working, my doctor wants to try remicade but I am scared because I have heard horror stories and I don't need anything else to go wrong.
I am all alone with no one to help me with anything, no one to talk to, no one to be at the emergency room or hospital with me, everyone I thought would be there, left me. I am at my wits end and fighting this disease is wearing on me and I can't take it!
Can someone lend me a shoulder to lean on, an ear to listen, and a hand to hold?
sad
Posted 6/8/2013 3:34 PM (GMT 0)
Hello and welcome to HW. What dose of prednisone are you on? I don't know that remicade is any scarier than Humira, they are very similar... Remicade has a higher success rate with UC from what I've read. It may not be a bad idea to try it. How long have you been on medication? Have you had stool tests to check for c diff or other bacteria? Tried antibiotics? I am sorry you feel so alone. I have no one as well so I understand. it's really hard to go through all of this by yourself. Driving yourself to the hospital and doctor having no one is not fun but it's what we have to do and try to remember that this will be behind you once you find the right treatment for you. It's a temporary situation.
Posted 6/8/2013 3:57 PM (GMT 0)
I feel for you. Its a horrible disease to have and with no support its so much harder. Even when you have family they just don't really understand it all which is so frustrating.

If I was in your shoes, I would give remicade a try. I know for me that I can't be in agonizing pain and super sick for a long time and if meds weren't helping I would be looking into surgery. But I have a family to take care of.

What dose of pred are you on? And have you tried any rectal meds?
Posted 6/8/2013 4:56 PM (GMT 0)
I would suggest looking into fecal transplants. It seems like a lot of people with pan-colitis see dramatic improvement after doing fecal transplants for 10 days or so. I am looking into this as well.

Take my hand to hold, if you'd like. I'm struggling with this too. We'll get through this, and we'll be stronger and determined to be more healthy because of it.
Posted 6/9/2013 1:43 AM (GMT 0)
I agree that Remicade isn't any scarier than Humira and I believe it does have a higher success rate. Often people choose Humira over Remicade soley due to the fact that it is easier to give yourself shots than sit for an infusion for hours.
Posted 6/9/2013 1:49 AM (GMT 0)
I have been on Remicade for 2 years and it was the best medication I was on. Most likely the side effects won't happen. The most happened to me was shingles and joint stiffness in winter. But I was able to have normal bm's so it is worth a shot.
Posted 6/11/2013 11:24 PM (GMT 0)
I feel for you :-( I hate that this takes so much away from us. I would go to emergency / doctor or just sit nxt to sm1 who needed me at any time i could, it is just horrible that we loose so much of the support we need when really just the tiniest bit of humility would soothe our doubts and fears for those moments.

My thoughts are with you, try Remicide, i know it must be hard the thought of what can go wrong on ur own i can only imagine.

Good luck xxxx
Posted 6/12/2013 2:34 AM (GMT 0)
When it doubt try anything. If the medicines just are not working, surgery might me the next best option. I was force to do surgery because of the amount of blood I was loosing. I had only battle with UC for three years before I had to loose my colon and rectum. It seems horrible to have to go through the surgeries but you can eliminate a lot of the pain. Which for me was the worse part. I can not say that I am pain free now and still do not have problems. But as people with UC I feel we have to accepted that we will only be able to reach a certain level and never a 100% of feeling good. But if anything you need to know you are not alone. You are not the only one who has felt the problems. Even though you feel alone at time and that the issues has pushed people away. It is not the end for you, but the beginning. Keep going, you are not the only one fighting this and my thoughts are with you.
Posted 6/12/2013 3:19 AM (GMT 0)
must have found a shoulder or hand -
Posted 6/12/2013 10:17 AM (GMT 0)
I know how you feel... for the last 4 years ive had a constant flare up. Not once has it gotten in a solid remission. Been on and off with steroids... Gotten Bone and muscle deterioration, nerve damage, migraines, high blood pressure, and a bad heart from those stupid things. Im on Imuron, Remicade, hydrocortisone, and many others to try and calm my stomach down, but nothing seems to help. Im in constant agony with cramps and pain to the point where all i can do is lay down and sleep and hug a pillow.. :(. and the worse of it is. Noone around me really knows what I am going through... so really noone understands how intense the pain is. and now the doctor just found out that I have severe inflammation once again... and im only 21... Ive been diagnosed since 8 years old. one of the youngest diagnosed people in the united states back in 2001. I just pray for at least 1-2 year remission at this rate.. now Im back on either Uceris or Predisone what ever my insurance is going to cover. but I hope things go more easy for you. Stress is the LEAST WE NEED! prayers and hugs go out to you! :)
Posted 6/12/2013 12:04 PM (GMT 0)
Monique,

Welcome to the forum.

Glad you've found us, although I am sorry you have to be a part of this terrible club.

We're all here for you!

We're here to support you, for you to vent to us, and to ask your questions too.

And we know what you're going through.

I hope you start to feel better soon.

A big hug to you!

:-)
Posted 6/12/2013 12:10 PM (GMT 0)
UCSurvivor,

Welcome to the forum.

Sorry you're in so much pain too.

The heating pad works well, have you tried that?

I know it's not a permanent solution, but it might give you some relief.

Posted 6/12/2013 5:41 PM (GMT 0)
i was scared of remicade at first too cause they say it is the big guns but you know what i havent had any side effects!!
Posted 6/12/2013 7:09 PM (GMT 0)
I was scared of remicade after getting side efects from sulfasalazine the 'safer' medication. I have my life back : ) only side effects so far are being tired the day I get the infusion and the first few infusions I had slight headaches, I no longer get those.
Posted 6/13/2013 1:04 AM (GMT 0)
I like philosophy so here is my thought for the day and then I'll be quiet. :)

Everyone, no matter how healthy or sick....

Dreams alone
Eats alone
Feels their pain alone
Feels hunger alone
Worries alone
Eliminates their waste alone
Thinks alone

And there's many more. So really, you are not "alone." :)

John
Posted 6/13/2013 1:43 AM (GMT 0)
smonique7,

I stumbled across this site today because I am in the middle of battling my first major UC flare (going on 3 weeks now) since I was diagnosed in 2009. The first 6 months were the hardest, the last 2 weeks have been 10x harder because I know what its like to feel good after feeling so bad.

I just thought I would share something that helps inspire me.
http://www.youtube.com/watch?v=HuoVM9nm42E

In case you didn't know, Jim Valvano was a college basketball coach who was diagnosed with cancer and died 2 months after this speech. I keep that in mind every time I watch this because as he speaks, he is so full of life.

"To think, to laugh, and to cry, that's a full day"
"Dont' give up.... Don't ever give up" -Coach Jimmy V

Post Edited (ba24) : 6/12/2013 7:47:43 PM (GMT-6)

Posted 6/13/2013 2:23 AM (GMT 0)
Welcome!

Hope never abandons you, you abandon it.

~George Weinberg
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