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No surgery... still hurting... please help me!

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Ulcerative Colitis
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Posted 12/13/2014 5:33 PM (GMT 0)
Hello everyone. I made a post a long time ago asking what the ain is like for everyone else with severe ulcerative colitis. My pain is so bad, I pass out for like 10 minutes frequently because of it. My whole colon is inflamed now, the slightest movement feels like a stab in the stomach. Ive been laying in bed for 2 years, and the doctors think I'm drug seeking now because I ask for pain medicine, and the pain medicine doesn't help very much now anyway so I stopped asking for it because I don't want pain medicine, I never did. I want the total and permanent ileostomy surgery so I can live again and not have to worry about pouchitis.

It seems to me that most people who have had the surgery were able to get it very quickly. But Ive been begging my doctors for 2 years, now going on 3 years, and Im still begging them to do it! They tell me that they're worried because I'm "too young" since Im 26 years old. Bull ****! I've offered to pay out of pocket and everything. I finally got the only surgeon 200 miles of my area to agree to do the surgery, he is located 150 miles from where I live and no one has any money to keep appointments with him. But he still wont do it for atleast another month IF not longer, and from the way hes treated me before, he will tell me "he will take care of me" which makes me think hes going to do the surgery, but then he just blows me off... So I think its probable hes going to make me wait longer than a month.

Now Im at the point where my local hospital throws me out of the emergency room. I went in via ambulance once and they sent me home on a bus! They keep telling me to go to KU medical center, but every time I do, I get thrown out of there as well because they say the only person who can help me right now is my surgeon and hes refusing to do the surgery. Why are they making me wait so long? Its been nearly 3 years now and counting...

Has anyone else here have to wait this long... suffer with this horrible pain for this long? Should I try to go to a big city in a different state something? I'm literally going insane here...

Post Edited (edenenix) : 12/13/2014 10:37:06 AM (GMT-7)

Posted 12/13/2014 5:42 PM (GMT 0)
I personally would go to a major city to find a very experienced surgeon. This is not a surgery you want performed by an amateur. They say the #1 important factor in surgical success is the surgeon. If you do go to a city, you can make a consultation with a doctor, you shouldn't need any special referral unless you have an HMO. The doctor's office should treat you professionally, as they would any patient, if they don't, you should consult with someone else. I can't imagine you would pay for this out of pocket, that would be really expensive. Why don't you get a health plan through healthcare.gov and cancel it after the surgery if you want to?
Posted 12/13/2014 5:55 PM (GMT 0)
Nosey question but, do you have money or don't you? Do you have health insurance or not? What country are you in? I'm assuming you are in the US. If you have money then you should have health insurance, or you said you could pay out of pocket. In either case, if you have severe UC you should be able to get surgery at any age so something doesn't add up there. If you don't have any money then you should be able to get insurance anyway for free because you are low income, in which case you should be able to get surgery also so something still doesn't add up. Maybe they are afraid to do surgery on you because of reasons you are not telling us, for example, you really are a druggie and surgery would be risky. Just a thought, not an accusation, but there is a reason why EVERYONE is throwing you out the door. That really doesn't happen to any of the tens of thousands of members on this site.
Posted 12/13/2014 6:19 PM (GMT 0)
I don;t have the money, but I would gladly take the debt (I have insurance that will pay for it though), because right now, the pain I'm in, its as if I'm dead anyway. I can't take care of myself, I haven't eaten anything in days because it hurts to eat. It even hurts to talk and breathe. I haven't taken any pain pill in a long time, and when I did it was only like hydrocone 7.5 every 4 hours, and at first I refused to take it because I knew that it was a drug that people abuse and I didn't want to be thought of as an abuser. I might be able to get more pain meds but I'm not going to try because that's not what I want... I know it won't help me... I just want the surgery, I don't see why I have to wait so long, I don't know why I can't just get it done now. First they told me that, even though my uc is bad, its not megatoxic nor is it ruptured. Then they told me that I wouldnt want it because I'd have to wear a bag. It took me 2 months t convince them that I don't care about the bag. Now they tell me that I need to wait and see if the Humara they prescriped to me will work, but I've been taking it for almost 2 months now and its not doing anything for me. My surgeon said he will do the surgery but he wants me to take another months worth of humara even though it isnt working, and every second destroys a part of my soul. I'm afraid that by the time I get the surgery, IF I get it that is, I'm going to be so mentally handicapped from the pain driving me crazy that it wouldn't even matter anymore.

So it seems you're telling me that you didnt ave to go through all this ridiculousness that I'm going through right now, you were able to get your surgeries right away. Well, I'm glad to hear that you did. Now I know for sure that for some reason they're making me needlessly suffer. I'm very sorry if my post sounded too negative, but I'm upset because most of the doctors Ive seen so far has treated me so inhumanely and unprofessionally. And I'm suffering because of it.

Post Edited (edenenix) : 12/13/2014 11:24:47 AM (GMT-7)

Posted 12/13/2014 7:19 PM (GMT 0)
People with severe inflammation, especially if bleeding and constant diarrhea, usually get hospital admission, IV steroids, and surgery consultations very easy. Many report surgery is mentioned even before they are ready.

They either are concerned you have CD, or the inflammation is not in proportion to the amount of pain you are having and they do not have a diagnosis for the cause of your pain.

Some pieces of the puzzle are missing here. I hope you get some relief, but things are too unusual to even know what would be helpful advice.
Posted 12/13/2014 11:33 PM (GMT 0)
Do you have support from family or friends? Surgey is not an easy thing. It can take months of recovery and almost impossible to get through without the help of someone to help you. They're not going to let you stay in the hospital for months just because you have no one to help take care of you at home. That's just a wild guess but if true could be a major reason why they want to give Humira another month instead of doing surgery now.
Posted 12/14/2014 12:21 AM (GMT 0)
What kind of uc drugs have you tried?
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