HealingWell
Search Close Search
☰

today's appointment

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/9/2010 3:48 AM (GMT 0)
Then I would definitely delay the scope & have your surgeon deal with it as he deems appropriate. Good luck with the other tests. I hope you can sleep tonight. I was thinking about your pain issues & trying to remember what Bennie posted about Bratcat's post-op 2 summers ago. I think she was taking Percocet for a while after her surgeries, but not totally certain about that. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)
Posted 6/9/2010 4:05 AM (GMT 0)
They let me have Dilaudid and that does help and keeps me relaxed, too. I will probably be up a lot going to the bathroom tonight, but at least the bleeding has not continued. I've just noticed a drop or two here and there today but nothing like last night
Posted 6/9/2010 4:47 AM (GMT 0)
I'm going to talk to them in the morning and my surgeon and see if he feels confident in them. If so, I'll go ahead with it. If not, I won't
Posted 6/9/2010 2:06 PM (GMT 0)
Pam,
If your surgeon is with another hosptial and you feel he is good then he must be affilated with an good GI over at that hosptial. At least the care can be more co-ordinated. This must be so overwelming for you. I hope that you have support in place.
Hope today goes well
Susan
Posted 6/9/2010 3:07 PM (GMT 0)
He knows some GI's here but he doesnt like anyone else to perform the scopes. They are coming in in a minute and I will see what they talked to him about

Ugh, some doctor just yelled at me--a hematologist. He came in and first he was talking about things I didn't even know about--about me being anemic and stuff and I said no one has mentioned that to me since before when I was having surgeries and my blood gets drawn weekly and whatever.
Then he said, what I thought was "do you have a history with your mouth?". He didn't speak English very well and was very difficult to understand. So I said "what do you mean?" and he said "your MOTHER, your MOTHER! What is your mother's medical history?! Why are you being disrespectful to me and trying to make me feel not welcome here because I can't speak English good?" I didn't say it at all in a disrespectful way and just said that I simply did not hear what he had said and was asking. ANd he kept yelling! I just started to cry and then he said he was sorry and that this was the first time he had ever upset anyone. It was so strange.
Posted 6/9/2010 5:05 PM (GMT 0)
Good grief! Not only do you have to deal with every kind of medical mishap there is, now you have to deal with some doctor's insecurity over his ability to speak english???? Come on! This is like a comedy of errors, only it isn't funny.
Posted 6/9/2010 8:46 PM (GMT 0)
Well, the scope today showed that it is almost certainly Crohns when they went above the pouch. The small intestine is bleeding and granulated and the GI here said it looks like Crohns but we will get the biopsy report tomorrow.
Posted 6/9/2010 8:55 PM (GMT 0)
Not the diagnosis you want, I'm sure, but at least now you can be appropriately treated for it. You need a break and an opportunity to feel well!

Sue
Posted 6/9/2010 10:56 PM (GMT 0)
Sue, I'm just so worried medications wont work. I failed the others before, so why would anything work now? And now I have no colon even so what happens when the small intestine can't be healed? What will happen to me?
Posted 6/9/2010 11:17 PM (GMT 0)
Wow Pam. That is truly terrible that you've been through all of this but I do agree with Sue, at least now you can formulate a plan of action. I can't believe this happened and that you weren't accurately diagnosed before surgery. I think this was a serious lapse on the part of you GI. Shouldn't this have been found before operating????? I always worry mine is Chrons but my doctor says it doesn't look like it is and all we as patients can do is hope our doctors are providing us the best information possible. I hope this is the start of a path towards a healthy future for you. *hugs*
Posted 6/10/2010 12:28 AM (GMT 0)
I had the blood tests, I had the biopsies. My last colonoscopy biopsies went to my GI's pathologist, who said Crohns. Then my surgeon wanted to be more sure before surgery because my rectum was not affected and he thought that was odd, and he sent it to another expert pathologist with more experience in just Crohns and UC, and she agreed with the UC diagnosis. I do not think it was a fault on the GI or the surgeon's part. They can be very hard to differentiate between. Even after surgery, pouch biopsies and blood tests were ordered again and sent to yet another pathologist who said there was "no indication of Crohns". Today the GI told me that I probably had Crohns Colitis, meaning the Crohns was affecting the colon at that time. After surgery, it then developed into the small intestine also. There is no saying that I had anything that could be seen by scope a month ago when I had the last one. I was not having bleeding at that point, but have been the past couple of days, so this may have just begun to bleed and look that way up there. I will not know until the biopsy from today is reported, which they said I should have tomorrow, but the GI said "this is Crohns. I don't know what else it would be". They gave me copies of the pictures from today. This is the first time I have ever been giving any of my medical records and I need to request them all, but they said I would probably be charged per page and have seriously extensive records from my old GI, the hospital I was in for 10 weeks, and now this hospital. But I need to have them. I want to look myself. and I want to have them in the future. I've always been questioning Crohns this whole time, just based on some of the things I had with UC--more nausea and vomiting than a lot of people seem to have with UC, the pain not limited to the colon, the rectum not being affected, the lack of absorption by the small intestine after surgery, and the fistula after surgery. BUt I kept getting told there were no indications of it.
I am having severe abdominal pain tonight and a lot of bleeding. I will probably be put on Humira if the biopsy confirms Crohns.

Here's my lovely, bloody small intestine. Hard to see but you can tell it's bleeding quite a bit and doesn't look good

http://img.photobucket.com/albums/v421/pronback/Photo175.jpg
Posted 6/10/2010 12:44 AM (GMT 0)
Well, that certainly confirms a few of us who questioned the possibility....

I'm speechless...OK, not really, but the hematologist would have understood two most popular words and a gesture in any language. What a jerk.

Do you know how much of your small intestine is affected? If it's only the ileum, maybe having that out as well would help? It's not guaranteed it would spread beyond that....at least possibly you have a chance to heal afterward?

You've been through hell and are on the train back with lots of stops....OMG I can't believe how so many have have treated you through such a disrespectful and humiliating process.

I've moved you up to hero status! Your stripes are in the mail....
quincy ;-)
Posted 6/10/2010 1:03 AM (GMT 0)
Thanks, Quincy. I don't know how much is affected as he didn't go that high up. It was just a sigmoid scope
Posted 6/10/2010 1:03 AM (GMT 0)
No, Quincy, with Crohn's the reasons to do surgery are stricturing or fistulizing-- but for inflammation itself drugs are used. The idea is to conserve as much of the small intestine as possible because that's where nutrients get absorbed. So sorry that you're going thru so many hassles, Pam, including an imbecile resident to boot! This is the worst run-around described on the Forum, I think, since Princesscolon reported her many experiences with disagreeing or nasty physicians who disputed her diagnosis over time. There probably are few IBD-savvy personnel who participate in Medicaid, which likely contributed to your complicated treatment history. / Old Hat (30 yrs with left-sided UC ; presently in remission taking brandname Colazal)
Posted 6/10/2010 1:17 AM (GMT 0)
Yes, I do not want to lose any more intestine. I am already not absorbing things well with what I have.
Posted 6/10/2010 2:58 PM (GMT 0)
I want a copy of my medical records from the hospitals. They are 75 cents per page. I have extensive records (11 weeks in the hospital, 5 surgeries, etc.) and it would be thousands of dollars. They told me if a doctor requests them, they would send them to him free and I could pick them up from the doctor.
My doctor's office says "we don't do it that way. If you were going somewhere for a consultation we would send them the records, but why do you need them personally?" Maybe because they are MY records, about me, I want to know what they say, I want to see the blood test results and biopsies and scopes. I have a right to know what is in my personal medical records and making it too expensive for me to get them is not letting me have that right. I'm pissed. It's only been 6 months and it's already hard for me to remember every surgery date, every admission, etc. and I get asked these for patient histories and stuff. Plus, what if I want to move and want to have my records? I also want to know what my previous scopes were and if I'm been sitting here for 6 months suffering from Crohns and no one bothered to look high enough up into the intestine. I don't want to sue or anything, but I want some answers.

It says in the hospital policies book that you have a right to your records at a reasonable fee (75 cents a page seems beyond reasonable, but whatever) and a patient will not be denied records because he can't afford to pay. But when I called back to ask if there was any way to get them if I can't afford them, I was told no.
Why won't my surgeon do this for me? He faxes a request, I go in and physically pick the records up from his office. He is not even inconvenienced in any way. It's more like "what is he afraid of me seeing?"
✚ New Topic ✚ Reply
123