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Total Colectomy 2011.1

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Posted 1/29/2011 10:37 PM (GMT 0)
Rosemary, both times the chied doc accused me of having munchhausen syndrome/faking my symptoms.
Posted 1/29/2011 10:40 PM (GMT 0)
http://s1142.photobucket.com/albums/n607/boatnerj/
Posted 1/29/2011 10:41 PM (GMT 0)
my only chance to get surgery done by the wonderful neuro-urologist is getting a confirmation of my bladder condition by an appropriate result of a full thickness biopsy. thats why I want to have this procedure, together with full thickness biopsy of the stomach and small bowel. and this means surgery. i am currently trying to find a cooperating surgeon who is able to perform this special procedure; it requires special training if the tissue samples should be usable for analysis.
Posted 1/30/2011 12:19 AM (GMT 0)
Peltz,

Oh, I get it now, thanks. Yeah, someone very competent in safely taking these biopsies would be a good idea. Good luck with this. BUT Then if that could lead to you getting what you need done to hopefully be the most comfortable you can, then that sounds like the route to take. I sure feel bad for you. I had two docs using that Munchhausen crap on me and all I had were adhesions! Nothing as complex as you. Some docs just don't like to admit to the adhesion word because surgery is what makes adhesions and surgery is what surgeons do for a living. NOT saying they are all like that but there are some. Blame the patient. Some think it gets them off the hook for not helping, but actually it is pretty easy to see through. BUT I had to go to 2 psychiatrists who had to then write up reports saying "THIS WOMAN DOES NOT HAVE MUNCHAUSENS" False accusations by some docs created a ton of paperwork for me and the 2 psychiatrists. Then I had to do this big appeal process to get those comments taken back. I really wonder if some doc putting a false accusation about us in writing as two of my docs did is actually libel and could be sued for. As you know, I have bigger fish to fry in that department, but I just wonder. hmmmmmm!

Rosemary
Posted 1/30/2011 12:22 AM (GMT 0)
Hi Boat,

Still curious to find those pics of your colon. This time when I did the URL you just gave up came a selection of categories of photos like travel and so on. Do I type in your name somewhere on this page?

THis technology is fascinating when it works. Am still in the learning curve; how do I access it.

Rosemary
Posted 1/30/2011 4:07 AM (GMT 0)
Any one hear from Alllie or Lizzie? or about them?

I know Allie is very busy with school and Lizzie might still be the same. Just thinking of them and wishing them well as all of you.

Rosemary
Posted 1/30/2011 8:26 AM (GMT 0)

Hi Everyone,

 

My goodness you all move fast...couple days of not logging in and I'm pages behind in reading on here! I have been buried with school, so that's why there was a delay.

 

Mr. Boat, welcome! "You're too young" is not an excuse, so don't let any doctors use it! I will be 25 in just over a week and I had my total colectomy with ileorectal anastomosis when I was 21. I was in horrible shape- down to 83 lbs at 5'7", unable to study (had to take every-other semester off) because of pain, couldn't eat, etc. Age doesn't matter, your quality of life does, and you will not be able to deal with surgery and trying to heal while juggling med school. I think it is great you were able to get a year to get your health sorted first. I still have problems (and may have to go the ileostomy route), but my motility disorder encompasses my entire GI tract (stomach, small bowel, rectum), and I have pelvic floor issues. If you have any questions, please don't hesitate! I looked at your x-ray...the sigmoid flexure does look long and tortuous.

 

Sarah, I learned something in the course of studying today. The MEN2 gene is carried on chromosome 10. Even if they can't/won't run a test specific to MEN, would someone order a karyotype on you to see if there are any visual abnormalities on chromosome 10? Praying the doctor in London is able to send you to just the right doctors in Germany or that you would be able to go to London! Have you ever taken grapefruit seed extract? It comes in tiny tablets or drops that you can put in water or juice. It's a strong antimicrobial that bacteria don't become resistant to. It's hypoallergenic, and it may help with keeping the infections and SIBO under control. I take it and it does seem to help with bloating.

 

I think the second round of antibiotics is finally doing its job on this Strep, thankfully! GI-wise, haven't been feeling the greatest (stomach feels so tight, and the volume intolerance is getting worse). Monday afternoon I was in a ton of pain in class, got home that evening and curled up in a tight ball for hours. I was "this close" to having my mom take me to the ER (and that would have been a first). Had a great talk with my surgeon two weeks ago about the surgical options; I see my GI doc on February 24th (also have significant nerve issues in my left leg that I am going to run by him), and I guess we'll go from there. Still hope to be able to complete these last couple prereqs for grad school...we'll see what happens!

 

Please pray tons for Lizzie. She had one heck of a horrible week. Cleveland wanted her off all pain meds to see if those were affecting her bowel. Tuesday morning she woke up in terrible withdrawals because her Fentanyl patch had worn out. She could have taken meds to get out of it, but instead called her Suboxone (drug that stops withdrawal) doctor and got an appointment. Tuesday afternoon she was on Suboxone and the withdrawal symptoms were much better. Suboxone has a bit of an analgesic effect that mimics Morphine, but it's really not enough to make any difference in her pain (seven surgeries). She has been in agony since then; heart rate consistently over 140. This afternoon, enough was enough, and she went to the ER. They got her pain under control and sent her home with a prescription. She is feeling much better now and her body is finally able to relax. She didn't notice any difference in her bowel or output while she was off the pain meds, and things are still going well with the tube feeds. She sees her primary doc on Monday and he is going to write referrals to a pain specialist and an urologist (ER said she definitely needs a scope done)...heading in the right direction! Hallelujah! This week was a really rough one for her, but she did not give up!!!! Pray that she would be encouraged and comforted, and that her pain would be controlled. Pray also for a great pain specialist and urologist- that they would know exactly what to do and do it quickly so she can continue on the road to getting her life back!

 

Ok, falling asleep typing...time for bed! Love to you all, and I'm really going to try to log on more frequently. Happy Sunday!

 

Allie

Post Edited (I'd Rather Be Riding) : 1/30/2011 1:33:24 AM (GMT-7)

Posted 1/30/2011 9:48 AM (GMT 0)
Rosemary, so it's gonna be May after all.... well i can't wait to see you!! thanks so much for all your efforts on finding me a dr. you're truly awesome!

Val, so glad you're still doing well. it's good to know there are success stories, so ppl with CI can still have hope.

Allie, glad you're feeling better. thanks for the update on Lizzie, i think of her every day and pray for her.
Posted 1/30/2011 4:29 PM (GMT 0)
Allie,

Great research for Sarah. If you can do that research why can her doctors not do it or respond?

Thanks for update on Lizzie. Likely the high heart rate is from all that pain. Sudden withdrawal from her pain meds even with that ineffective "substitute" not a good idea. Glad the ER came through. Praying for her and you.
Good advice to Boat.

Hodaya, I will get you exact dates, times, and places in May. Rosemary
Posted 1/30/2011 6:08 PM (GMT 0)
Were the docs not really willing to perform the surgery on you at first or were they relatively open?

I'd Rather Be Riding said...
<span style="FONT-SIZE: 10pt">Hi Everyone,

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">My goodness you all move fast...couple days of not logging in and I'm pages behind in reading on here! I have been buried with school, so that's why there was a delay.

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">Mr. Boat, welcome! "You're too young" is not an excuse, so don't let any doctors use it! I will be 25 in just over a week and I had my total colectomy with ileorectal anastomosis when I was 21. I was in horrible shape- down to 83 lbs at 5'7", unable to study (had to take every-other semester off) because of pain, couldn't eat, etc. Age doesn't matter, your quality of life does, and you will not be able to deal with surgery and trying to heal while juggling med school. I think it is great you were able to get a year to get your health sorted first. I still have problems (and may have to go the ileostomy route), but my motility disorder encompasses my entire GI tract (stomach, small bowel, rectum), and I have pelvic floor issues. If you have any questions, please don't hesitate! I looked at your x-ray...the sigmoid flexure does look long and tortuous.

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">Sarah, I learned something in the course of studying today. The MEN2 gene is carried on chromosome 10. Even if they can't/won't run a test specific to MEN, would someone order a karyotype on you to see if there are any visual abnormalities on chromosome 10? Praying the doctor in London is able to send you to just the right doctors in Germany or that you would be able to go to London! Have you ever taken grapefruit seed extract? It comes in tiny tablets or drops that you can put in water or juice. It's a strong antimicrobial that bacteria don't become resistant to. It's hypoallergenic, and it may help with keeping the infections and SIBO under control. I take it and it does seem to help with bloating.

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">I think the second round of antibiotics is finally doing its job on this Strep, thankfully! GI-wise, haven't been feeling the greatest (stomach feels so tight, and the volume intolerance is getting worse). Monday afternoon I was in a ton of pain in class, got home that evening and curled up in a tight ball for hours. I was "this close" to having my mom take me to the ER (and that would have been a first). Had a great talk with my surgeon two weeks ago about the surgical options; I see my GI doc on February 24th (also have significant nerve issues in my left leg that I am going to run by him), and I guess we'll go from there. Still hope to be able to complete these last couple prereqs for grad school...we'll see what happens!

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">Please pray tons for Lizzie. She had one heck of a horrible week. Cleveland wanted her off all pain meds to see if those were affecting her bowel. Tuesday morning she woke up in terrible withdrawals because her Fentanyl patch had worn out. She could have taken meds to get out of it, but instead called her Suboxone (drug that stops withdrawal) doctor and got an appointment. Tuesday afternoon she was on Suboxone and the withdrawal symptoms were much better. Suboxone has a bit of an analgesic effect that mimics Morphine, but it's really not enough to make any difference in her pain (seven surgeries). She has been in agony since then; heart rate consistently over 140. This afternoon, enough was enough, and she went to the ER. They got her pain under control and sent her home with a prescription. She is feeling much better now and her body is finally able to relax. She didn't notice any difference in her bowel or output while she was off the pain meds, and things are still going well with the tube feeds. She sees her primary doc on Monday and he is going to write referrals to a pain specialist and an urologist (ER said she definitely needs a scope done)...heading in the right direction! Hallelujah! This week was a really rough one for her, but she did not give up!!!! Pray that she would be encouraged and comforted, and that her pain would be controlled. Pray also for a great pain specialist and urologist- that they would know exactly what to do and do it quickly so she can continue on the road to getting her life back!

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">Ok, falling asleep typing...time for bed! Love to you all, and I'm really going to try to log on more frequently. Happy Sunday!

<span style="FONT-SIZE: 10pt">

<span style="FONT-SIZE: 10pt">Allie

Posted 1/30/2011 6:43 PM (GMT 0)

My surgeon was very willing to perform a total colectomy on me. By the time I had a consult with him, I had seen countless gastroenterologists (many of whom threw up their hands and didn't know what to do, or diagnosed me as an anorexic), and had every test in the book run multiple times. I also saw Dr. Michael Camilleri at Mayo Clinic in Rochester. I'm from Texas, so it was a trip, but it was completely worth it! Dr. Camilleri is the head of enteric neuroscience and is Mayo's top motility doc. He ran every test over again, and had his team working overtime. His biggest thing is that he HATES to see young people suffer. They gave the final diagnoses of colonic inertia, rectal inertia/pelvic floor dysfunction, very slow small bowel and altered gastric emptying. I would've had surgery there, but one of the best colorectal surgeons in the country is in Dallas, not too far from home. When I met with my surgeon back in Dallas, he looked at all of those results, Dr. Camilleri's findings, and said that it was clear that I had tried everything. He said the best option was surgery. There was no arm-twisting him-- he knew what had to be done, but it took years of tests and doctors (it's hard to find the right ones who will fully commit to taking a motility patient on) to get to that point.

 

Allie

Posted 1/30/2011 7:20 PM (GMT 0)
Thanks , Allie, for your research. I do know that one can have a genetic/DNA test. But how to get it? that's the problem.
I start to realize that this won't be possible with German endocrinologists. That's why I contacted the MEn expert in London, and he said he would do the DNA test if his the GI doc who is THE motility expert in UK confirmed the possibiliy of a histopathological diagnosis consistent with the features of Gi pathology in MEN.
That's another reason why I would like to have full thickness biopsies agai as this is he only way to find this out.
Allie, I think once you mentioned that you have altered stomach emptying which manifests as either delayed or too fast gastric emptying.
Is this right? I have the feeling that while I have a firm diagnosis of gp that I now may cycle with rapid gastric emptying due to an incompetent pylorus. It has just become weak and does not close any more, it's atonic just as the stomach is. My gi doc thinks it has seomthing to do with my diffuse motility pathology as well.


Rosemary,

as far as I recall it properly you had an entero CT not that long ago.
You were afraid that your tickened output could indicate an adhesions problem and your Gi doc ordered an entero CT which ws normal.
Can you e-mail the images to me? I need a reference for my CT abdomen. You actually see only few parts of the small bowel, as it was only an abdominal CT and not an entero Ct with oral contrast for the gut.
My email addresse: [email protected]
Posted 1/30/2011 11:42 PM (GMT 0)
Sarah,

If I knew how to email you my CT enterography images I would do it in a heart beat for you. BUT I have no clue how to do this. I'm technically challenged!

I could get a DVD of my CT Enterography and send it to you. BUt it is a DVD that a doc has to run on his computer. Post me back or email me: [email protected] if you want me to do this for you and I will.

Rosemary
Posted 1/31/2011 12:24 AM (GMT 0)
I have a program on my PC with wich you can take a look at those pictures.
If you could view your own images you may just copy some of them (the final images, with the full contrasting of the small bowel) into a word.doc format and send this word file by e-mail
Posted 1/31/2011 12:59 AM (GMT 0)
Rosemary,

I just got another idea.
Can you post images on photobucket.com? If you could upload the final images of the follow-through then I could view them this way.
Posted 1/31/2011 2:13 AM (GMT 0)
Hi sarah,

I don't know how to do photobucket either. I tried to look at Boats' colon on photobucket and could not even access it with the URL he gave me. I just answered your email. I tired to open your pics. I have an APPLE not a PC and the pics would not open.

Do you want a DVD of my CT enterography of 2010 of all bowel loops open or did you want my DVD of them when they were shut in 2007. I could get you a DVD of either or both. Just let me know. Rosemary
Posted 1/31/2011 2:42 AM (GMT 0)
Rosemary, try it with my link: I have posted some images there:
http://s1206.photobucket.com/albums/bb441/pelztier86/

No, I need a "normal" entero CT, not the one with the scarred bowels. There are many entero CT images in the internet but of course, most patients have their colon and not an ileostomy.

Rosemary, I think you don't have to take the effort to send me the CD as I have just recalled that you still have your colon - as far as I recall it properly it wasn't completely removed??? Then, your images would be not comparable to mine anyway.

I would need images from somebody without a colon.
Posted 1/31/2011 2:43 AM (GMT 0)
To the others: feel free to take a look at my pictures. Allie, I sent some of them to you, but I found some new pictures i did not send you yet from the same study on CD.
Posted 1/31/2011 3:01 AM (GMT 0)
HI Sarah,

I tried your link and it says page not found. Then it says, but while you're here visit our other photobucket pics. Then there is a choice of travel, etc.

I do still have my colon IN me you are right. HOWEVER, it's not in use. prior to the CT ENTEROGRAPHY with the open small bowel loops showing my ileostomy too, I had to drink about a half gallon of water, so my small intestines were REALLY dilated. All loops dilated fully with the water and it showed some passage of effluent coming out of my stoma, so all looked good.

WOuld the presence of my unused colon really confuse things if you used it for comparison as the loops of open small bowel really showed up bright with all that water? Let me know and I will still be glad to get you the DVD copy.

If you have this test, I would suggest just drinking water for contrast. It really stretches out the small bowel. With an ileostomy, any thick sweet contrast would stimulate the small bowel and be in our bag before the CT Enterography could even be done. That is why they had me do it just drinking water. Of course I have no transit issue, so I think my doc figured any thick sweet contrast would be history in 15 minutes. As you have transit issues, they may have you drink something thick and sweet.

Anyway, let me know if you would still like a copy of the DVD and I can order it for you. Rosemary
Posted 1/31/2011 3:14 AM (GMT 0)
Rosemary,

the link works, I guess its your incompatible system.
I don't know if the presence of your bowel alters the image.
Of course, the contrast is only in the small bowel, but I would guess that total removal of the colon makes the small intestine to drop more into the pelvic region. And it would be very expensive for you to send the images. Maybe someone else has had an entero CT after colectomy..?
Posted 1/31/2011 3:24 AM (GMT 0)
Sarah,

You are right. I totally forgot that the absence of a colon does make the small intestines drop lower into the pelvis. I do remember I asked my ileostomy doc why he was not going to remove my colon and he said it was cause the small bowel can drop into the void left by absence of the colon and that can cause kinks in the small bowel. I said sure don't want that. OK, I see what you mean. Glad you remembered I still had my colon. Good luck with this. Maybe someone else without a colon will have this test that comes out normal and you can get it for comparison.

I think you're right, my computer system isn't compatible with PC links. :-(

Rosemary
Posted 1/31/2011 4:43 AM (GMT 0)
Rosemary,

maybe you can help me nonetheless. I assume that small bowel loops located under the lower wedge of the liver are ileal loops. Do you know the exact distribution of jejunal and ileal bowel loops in the abdominal cavity?
Posted 1/31/2011 3:29 PM (GMT 0)
Hi Sarah,

No, sorry, I don't off hand; and because you are colon-less, in you the distribution of certain small bowel loops of the different parts of the small intestine would be much lower than those of us with a supporting colon. As I leaned all too well (retroactively) that even the presence of the uterus is what holds up small intestine. COlon also holds up small bowel.

I think for normal anatomy, and general info, you could google something like "parts of small intestine" and get some general information, if this is of any help.

Rosemary
Posted 1/31/2011 6:39 PM (GMT 0)
Hi everyone and welcome to boat. It is kinda nice to see that a male is going through this same issue. Well, not nice but now I dont see this as only a female issue.

My endoscopy is tomorrow and I do not have much faith that it will show much. But, I am just doing whatever the doctor wants me to do. So I have had an ultrasound, blood tests, and now the endoscopy tomorrow. Then see him next week. And go from there.

The hard thing with our disease is that I really do not think it will ever be totally better. I hate to be discouraging, but I wonder if our bodies can even heal from this. Your digestive system is just such a huge part of your life and when something is wrong with it, I wonder if it can ever recop. Maybe I am just depressed, but it seems like I will never feel good. I am so used to having pain and feeling sick that I do not remember what it is like to feel good.

And another thing.........I am also tired of being looked at like I am making this all up, that I am anorexic, that I like feeling this way, its all in my head. I hear this so much on this forum and it seems like we are all getting this treatment. SERIOUSLY!! Why would anybody go through all those terrible tests if we were not so desperate in knowing what was going on with our bodies. It just makes me so mad. Even my friends are like, your surgery was a year and a half ago, you should be feeling good by now. HELLO!!!! Obviously they take for granted that they can go sit on the toilet and have a good poo one or more times a day.

Sorry, got on a kick there for a minute. Its just hard not too as you all know. I think this has got to be one of the hardest things I have had to go through.
Posted 1/31/2011 8:31 PM (GMT 0)
Hoddaya,

didn't you have an entero CT after your ileostony or colectomy procedure that was normal and did not show any narrowings etc?
MAybe you want to take a look at my images.
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