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The worst experience of my life.

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Ulcerative Colitis
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Posted 3/23/2010 11:58 AM (GMT 0)
I had a sigmoidoscopy yesterday, and it truly was the worst experience of my life. It hurt like absolutely crazy, and when i screamed for the doctor to stop, she wouldn't and just leaned on me to keep me still.

They wouldn't give me a sedative to settle me, i actually came out of the room quite traumatized.

So results were that i have moderate inflammation of the rectum and left side of the colon, and she told me to try Asacol foam enemas again!!!!!!! I mean god i have had this condition for 16 years, and have been intolerant to all medication, and she tells me to try that again.

I was hoping for surgery, but she said there is no chance.

So today i am bleeding lots, she took 6 biopsies, so i guess thats why. I have bad intestinal pain, and feel a little nauseous. Is this normal to feel horrid after a scope?

So what would you guys do now?
Posted 3/23/2010 12:15 PM (GMT 0)
Find a doctor that is a bit more compassionate?
Posted 3/23/2010 12:17 PM (GMT 0)
Mercury
I am so sorry for your trauma. I've had several docs inflict pain and know how it lingers in the mind (not a sigmoidoscopy but in other similar sensitive areas). You should change doctors if at all possible.

"Moderate inflammation" doesn't begin to tell how your life is affected does it? My scopes never showed a lot but I know how bad UC made my daily life. It's hard to remember what "normal" was like when I could eat and run out the door, get in a car for an hour drive and not think once about where the immediate bathroom is.

Two suggestions:
1. Make an appointment with surgeon (bring your latest scope results) and find out what surgical solutions are available to you.

2. Get a new GI doctor and discuss all your options including surgery.

Then you will have the information you need.
I am not on a surgical path as you can see from my sig. but knowing that it is the final solution gives me peace of mind. Something you are missing right now.

Best wishes.
Posted 3/23/2010 12:45 PM (GMT 0)
Wow. That's terrible. I would find a new doctor. Hope you feel better soon.
Posted 3/23/2010 1:12 PM (GMT 0)
Mercury28:

First of all, I don't share Lialda's point of view.  He sounds as compassionate as your Gi doc.  Second, I would definitely find a GI doc, nothing is going in my rear without some sedatives.  Third, personally I would try Remicade before surgery.  You have tried 6MP why not the biologics, a lot of people around here have done very well on that.  Trust me you will always find a surgeon willing to take out a colon if you look hard enough.  I would slow down and first find another GI doc.

Good luck, and yes it's normal to have some blood and pain after the sigmoid with biopsies.

Posted 3/23/2010 1:22 PM (GMT 0)
Thanks for the comments, i agree i need a new consultant. luckily i am moving next week so i can find another one.

I also agree that remicade could be an option for me, but i didn't actually get a chance to have a proper chat with her. I wanted to talk about all my treatment options.

I have actually just written an email to the hospital making them aware of what happened yesterday, and how unhappy i was with the treatment i got.

I am hoping i am going to feel better tomorrow, feeling very sore :0(
Posted 3/23/2010 1:22 PM (GMT 0)
yes well, while I disagree with lialda's comment.... I've had numerous sigs with no sedation, my doc apparently doesn't do sedation for a flex sig. They are extremely uncomfortable. I hate them!!!! Would much prefer an entire scope, just knock me right the heck out. As far as surgery goes, I think that's entirely up to you- you could make a surgery consult appt. w/out your GI's approval. If I were you, I would make an appt. w/your GI & tell her exactly how you feel- that you think she handled your sig very unprofessionally, & explain to her your feelings about surgery, that you would like to meet with a surgeon to discuss your opitons, & you'd prefer her to be on board with you. I wouldn't mention the no sedation- most docs don't use sedation for a flex sig- yeah they are awful, but it's only 15 minutes or so, & there's no lasting ill-effects. If your doc still is not supportive of you talking with a surgeon, find a new one.

Posted 3/23/2010 1:26 PM (GMT 0)
I'm so sorry. My GI doesn't sedate for sigs either, and my last one was absolute torture. I was screaming in pain as well-but he was very soothing and compassionate about it at least. He did biopsies as well, and after the fact, things got much worse for me and then I ended up int he hospital. Which is why when he wanted to do a colonoscopy yesterday to see how my progress was coming along, I refused. I didn't want to take the chance of getting worse again.

Anyway, I would find a new doctor or at least get a second opinion. I would not want to be with a doctor who told me no way about surgery. I mean, my GI wants to avoid it, but I know if it were what *I* wanted, he would get on board.

I have been on the biologics and they have offered me great relief. I have no regrets at all at this point about trying them, but I completely understand why others don't want to try them. And knowing it is temporary, I can see wanting to go the route of surgery, especially if you have been resistant to other meds.

Good luck-and again, I am so sorry!
Posted 3/23/2010 1:43 PM (GMT 0)
I have woken up and tried to strangle people during poor sedation. I think you need to call the patient advocate if this was done at a hospital.

I also would not want a doctor who did not respect my wishes for them to stop when they were inflicting pain upon me.
Posted 3/23/2010 2:25 PM (GMT 0)
My dr. sedates - and after what I've read on this thread I'll never let her not sedate if she ever suggests it!
Posted 3/23/2010 2:27 PM (GMT 0)
I've had a flex sig while awake and it wasn't a fun experience but I was able to get a few biopsies without complaining too much. It's definitely uncomfortable but I hate when people say it was "the worst experience of their life" because it scares other people. It wasn't the worst experience of my life, that's for sure, much worse things have happened to me. Either it was worse for you because you have bad inflammation or because your doctor was not gentle, I don't think it should be up there with worst experiences. I get migraines that are worse than a sigmoidoscopy. I am sorry you had such a difficult time. I agree with the other posters, it sounds like you should be seeing a different GI.
Posted 3/23/2010 2:36 PM (GMT 0)
I have always had sedation for any scope - 3 in 18 months.  I would refuse a sigmoid without being OUT - and I mean OUT!  My doctor was able to just put me out the short time it takes and I always feel fine right after.

I am in the process of seeing a new GI doc and when I interview him/her I will ask about scopes and sedation - if they do not agree I will find another one.  They work for me - not the other way around.

WE all have our different thresholds of pain also.  I know last sigmoid I had verset and Demerol.  I am under Medicare and insurance might have something to do with it.  I would offer to pay the difference!

ElaineNY

Posted 3/23/2010 2:36 PM (GMT 0)
In my own experience, the sigs hurt if I'm inflamed and don't hurt if I'm not.

But you knew you were inflamed...... I think a new doctor would be a good answer. And since you said you're moving anyway, it just might all work out for the best!

I usually bleed a for a day or two after biopsies, especially if I'm inflamed.
Posted 3/23/2010 2:45 PM (GMT 0)
I don't mean to scare anybody. I am being serious though it was the worst experience of my life, and i thought i had a high pain threshold.

The first sigmoidoscopy i had 6 years ago was ok, uncomfortable, but tolerable. This was just excruciating, and i believe it was down to my consultant not being gentle when she knew i was flared up bad since christmas. She also put so much air up there it was just crazy! It felt like my tummy was going to explode and i actually thought i was going to vomit. I feel like crap today, very sore and very bloody.

I have made a complaint to the hospital about my experience.

Please people don't think just because i had a bad experience you will too.
Posted 3/23/2010 2:49 PM (GMT 0)
I remember years ago I had a barium enema test where you drink white stuff and then when it gets to your colon/stomach/whatever they pumped air from below and took xrays - suppose to be for diverticulitis.  I would NEVER have that done again unless I was sedated heavily!  It was very painful and worse than having a baby.

I thoroughly understand!

Anyone who wants to try these tests without sedation (my husband would be one of them) - go ahead - just be sure my doctor gives me a choice!

ElaineNY

Posted 3/23/2010 4:42 PM (GMT 0)
We've all had bad experiences with something at sometime in our lives and this just happens to be yours. Everyone is different on how they respond to things. For instance, one of my worse moments was in the dental chair having a molar removed. I was just numbed up but it didn't help much. While to me that is traumatic, others have had this done and thought it no big deal.

I've had numerous sigs at different degrees of inflammation and the worse one I had was my last one about 3 years ago. The air was horrible and I was in excruciating pain afterwards. But before then I never had much of an issue with them. Sure they aren't pleasant and no one wants them but sometimes they are needed to have a look-see. I'm sorry that your doc was very unsympathetic and I am glad you are going to find a new one.
Posted 3/23/2010 4:45 PM (GMT 0)
notsosicklygirl, I wanted to add that I agree about being inflamed. This last sig I had was horrible because I was so badly inflamed-and he tried to be as gentle as he could be. I have had many other flex sigs without sedation, and while none of them are comfortable or fun, let's be honest, they weren't a big deal when I was in remission or even when I had minor inflammation.

It really depends for me on how my colon is at the time-normally I don't mind that he doesn't sedate because it is over quick and it isn't a big deal. But I think i will ask for something if I *have* to have a procedure done during a more than very minor flare.
Posted 3/23/2010 5:14 PM (GMT 0)
Wow, that sounds horrible! I hope that you can find another doctor. This one doesn't seem to listen or really care about what you're going through. Since meds don't agree with you, it really seems that surgery is the way for you to go. I'm sorry. When do you move?
Posted 3/23/2010 5:43 PM (GMT 0)
I am moving next Thursday. I live in Dorset in the UK and will be moving to Berkshire, which is near London. We are meant to be moving to Canada, but we are awaiting our Permanent residency application approval, and who knows how long that is going to take!

I just can't believe how my tummy feels today, I have such a bad tummy ache, and it is going into my back aswell with a slight feeling of nausea. I have just been feeling so drained as well. I saw my GP this morning and she said it would be normal to feel yucky for a couple days after the scope, guess i just wasn't expecting to feel this bad.

It is so difficult, i have 2 children, my youngest is not at school yet, and it is just so hard to care for her when i feel so ill. My colitis had settled down a little before the scope, but now it feels so much worse.
Posted 3/23/2010 5:54 PM (GMT 0)
I'm not at all familiar with how the health care system works in the UK. Would it be possible for you to see a different GI very quickly once you get to Berkshire?

I really hope you find a better doctor. FWIW, my GI has said that he's really not concerned with what the colon looks like, so much as he's concerned with how that patient feels.
Posted 3/23/2010 5:59 PM (GMT 0)
Yeah i agree with that, she said it looks mild/moderate, but i bet my biopsies show otherwise! When i had my last one, 6 years ago, he said it looked mild, the biopsies came back moderately severe! I also have no quality of life, so i need to find a doctor who will actually listen to me. The waiting times in the UK are about 6-8 weeks to see a new GI. I had to wait 6 weeks for my scope.
Posted 3/23/2010 8:40 PM (GMT 0)
I am so sorry you sent through this. I can relate. When I was younger I had a sig without medication. It, too, was the worst experience of my life. I was in the doctor's office and I was screaming at the top of my lungs to STOP. I have had 2 children and this pain was worse.

My question for those more experienced people...why would they do a sig. over a colonoscopy? I would much rather have a colonoscopy and be drugged then another sig. without drugs.

Yes, find a new doctor and good luck with your move.
Posted 3/24/2010 2:20 PM (GMT 0)
Mercury28 - You need to put a complaint  in, and fast.  Ive come across sadistic doctors in the past, and a formal complaint usually does the trick.
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