Frustrated after colonoscopy

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firecracker1
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Date Joined Apr 2007
Total Posts : 208
   Posted 2/2/2010 11:33 AM (GMT -7)   
A colorectal surgeon did my colonoscopy today because my GI felt that my issues are too severe for her to handle. I have fistulas, narrowing, and a benign mass in my rectum. Anyway, the colorectal surgeon, who had to use a pediatric scope on me due to narrowing, said my narrowing and the tumor are not bad enough to cause my issues. He said the fistula, on my left butt cheek where it meets the thigh, is only an abscess. ***? I know it is an abscess due to a fistula. I have had so many fistulas I know when I have one. He also said that  in 2004 part of my colon was removed. B.S. I only had a foot of my small intestine removed in 2004. Basically, he inferred that I was lying. That my abscesses are caused by something other than crohn's and the narrowing and benign mass are not really bothering me. I am a 38 year old woman and should not need a pediatric scope for a colonoscopy, but due to the narrowing he said he needed to use a small scope. I think me and the surgeon should switch rectums for a week and then he can tell me whether or not the narrowing (strictures) and mass are causing my issues. Thanks for letting me vent. I find it unbelieveable that even with a diagnosis of Crohn's it is hard, almost impossible, to get the doctor's to actually listen to me.

pb4
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Date Joined Feb 2004
Total Posts : 20576
   Posted 2/2/2010 3:37 PM (GMT -7)   
OMG, that is shameful, I can't even imagine what pain you must be in...has any of your docs mentioned Remicade for you? Remicade is suppose to be quite beneficial for fistulas/abcesses....maybe if you move on to another doc he/she can discuss it with you (or one of your current docs if you choose to stay with them).

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/2/2010 4:59 PM (GMT -7)   
Thank you, pb4. My GI has recommended Remicade, but is afraid I might have antibodies to it. Before my small bowel resection 6 years ago I had one infusion. I was taking Cimzia, but with the constant abscesses from fistulas I had to stop taking it. My body could not fight the infections even with antibiotics. My GI is sending me to an IBD center at the Cleveland Clinic. She said they will know more about Crohn's. This colorectal surgeon is probably a good surgeon, he just does not know much about Crohn's Disease. Even my GI is flabergasted by my issues. I am sure that soon I will be trying Remicade. It's just hard to get the time off of work for the infusions. My GI did tell me I will need surgery despite what the colorectal surgeon said. I have been eating a diet of lactaid cottage cheese and canned peaches. She feels that it has helped the inflammation,b ut that I cannot live eating like that. That the narrowing and the mass have to be addressed surgically.  

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 2/2/2010 6:06 PM (GMT -7)   
There's not a much better place to go than Cleveland Clinic for gastrointestinal issues, especially Crohn's. CC and Mayo in MN are the two leading GI departments in the USA, quite possibly the world. And CC prides itself in being a leader in bowel saving surgery.

That surgeon might not have been totally wrong. If your resection was at the distal end of the TI, quite likely they also had to resect some of the cecum which is the beginnng of the colon and possibly even a small part of the ascending colon due not just to disease activity but also due to the blood supply in that area. At least that is how I understood my Mayo gastro to explain it to me. The blood supply in that area has some bearing on having to resect some of the cecum and ascending colon or not.
My computer says I need to upgrade my brain to be compatible with its new software.


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 2/2/2010 6:44 PM (GMT -7)   
You can have a bad experience any where and we had one with Dr. Lashner at the Cleveland Clinic. My daughter's local doctor sent us there and Dr. Lashner was fine at the first visit but then was in a rush on the phone after the colonoscopy and was telling my daughter to just go back on Humira even though the week before he saw the after effects of her allergic reaction to it and said, "Wow, we don't want you to take that again." When she reminded him of that, he told her to take another drug she had already had a bad reaction to and finally he said to her, "Well what previous drug caused you the least amount of side effects?" She basically was deciding her own treatment. He called in a prescription for it but that wasn't really a good option either because it hadn't worked previously. Otherwise, she would still be taking it!

I know doctor's can't keep tract of all their patients in their head but I expect them to have reviewed something before they get on the phone with you and quickly skim through your charts. Our local doctor agreed that Dr. Lashner did not take the time to really come to a good conclusion about what treatment would be best for her. So we never went back nor did he ever contact her again, even though he said his office would.

Hopefully your doctor will know of a better one to send you to at CC.

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/2/2010 7:03 PM (GMT -7)   
I've had issues with CC before as well. My GI is wonderful, but some other doctors there are awful. I had one huff and puff and cop an attitude with me when I wanted him to explain what surgery he was going to perform. Which is probaly why I had no idea cecum, which I had removed, is actually part of the colon. This most recent colorectal surgeon is with the CC as well. He did not explain anything to me or my sister other than to tell me he does not know what is causing my issues because he does not treat Crohn's. However, I have heard raves about their IBD dept. They are doing a lot of trials there and deal only with IBD. I think when that is all they deal with it makes a big difference.

My current GI is with CC and she is awsome. She always listens to me and if she does not understand what I am saying she asks me to explain it to her. Very willing to take the time needed with me.

Thank you everyone for your replies and info. I really appreciate it. I love coming to this sight. It helps me to vent my frustrations.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/2/2010 9:21 PM (GMT -7)   
If this current colorectal surgeon is also a CC surgeon then I would ask for a consult w/a different CC colorectal surgeon. I've even done that Mayo. Not that I encountered a colorectal surgeon there with an "attitude" but because I'm looking for a surgeon there who I feel sees eye to eye w/me on what will and what won't be done. I found a gyn/onco surgeon there I have every confidence in and who I feel VERY comfortable with and we see eye to eye on what needs to be done.

My gastro always uses a peds scope for my colonoscopies when I insist I do not want sedation and want to watch the scope monitor. The few times I've agreed to sedation she's used the regular adult scope. The peds scope was probably chosen w/an eye to your comfort and/or the anticipated narrowing or stricture.
My computer says I need to upgrade my brain to be compatible with its new software.


firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/3/2010 4:05 AM (GMT -7)   
I understand why the ped scope was used. They told me it was because of the stricture/narrowing. After the procedure he tells me there is no way the stricture and mass are causing me fistulas or keeping me from passing stool. That the issues are not big or bad enough to cause these. That is why I am frustrated. Stool gets to my rectum and it won't budge from there. I feel stool move through and I run to the bathroom only to have the stool sit in my rectum. I end up pushing it out (taking miralax and stool softeners daily) with difficulty and the next thing I know I have a fistula (I currently have 5 abscesses). For this surgeon to tell me that these things are not bad enough is frustrating. They are bad enough because for a year and a half now I keep getting fistulas. My gut instict is telling me the stool is hitting the mass in my rectum and it can't go anywhere. Alon g with the stricture/narrowing it is causing me to get fistulas. I spoke to my GI yesterday and she is going to speak to the Colorectal Surgeon. She's not sure why she feels these aren't causing my issues when she said my rectum is so narrow she can barely do a rectal exam with her gloved finger.

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/3/2010 4:16 AM (GMT -7)   
This disease is so frustrating to both us and doctor's alike. I am so grateful for this site because I can vent here and people understand what I am going through. Hopefully I will be done with my pity party soon and will be more hopeful : ) Gotta have the pity party, though.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/3/2010 10:57 AM (GMT -7)   
Well, as I said, I would ask for a different colorectal surgeon at CC. Most likely you will never have any confidence in this current one after your recent experience and I don't blame you. I know I wouldn't. I tend to agree w/your assessment about your situation. It just makes common sense. That doesn't mean "we" are totally 100% right but I'd be willing to bet we are closer to the truth than this surgeon.
My computer says I need to upgrade my brain to be compatible with its new software.


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3110
   Posted 2/3/2010 11:13 AM (GMT -7)   
I definitely agree with CrohnieToo...see another C/R Surgeon.

Make sure you indicate that you only want one who specializes Crohn's Disease, too!! there are docs there that don't handle Crohn's patients (like you found out) You can get an idea of what docs do by going to their website and doing a search by disease.

Doc's are just like "normal" people with personalities and I don't know about you, but there are some people who's personalities I just don't get (or want to be around)! I've also changed doc's because of it, so don't feel bad...it's your body and your health!

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/3/2010 11:25 AM (GMT -7)   
Gurr, I will put the smack down them for you!  JK! I agree with everyone else time to see a different c/r surg.

Post Edited (MMMNAVY) : 2/3/2010 11:43:55 AM (GMT-7)


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 2/3/2010 12:03 PM (GMT -7)   
It makes you wonder how this can make any sense to the surgeon. If his reasoning is that complicated, then you would think he would feel compelled to explain it to you so you would feel comfortable with his diagnosis. I have found that most doctors don't want me to question because I'm not qualified to even discuss it with them.

firecracker1
Regular Member


Date Joined Apr 2007
Total Posts : 208
   Posted 2/3/2010 3:34 PM (GMT -7)   
Mastermom you are so right. We're not qualified to understand anything or discuss it with them. This is my 2nd colorectal surgeon at CC. The other one huffed and puffed and said 'do you need me to draw a diagram for you' when I asked him what surgical procedures he wanted to perform. He did an examination on me as well and told me I was not in that much pain because a pediatric scope would fit. I fired him and got this one. They both work in the same office. The IBD Center deals only with IBD so I am hoping to get help there. Thank you all for the good advice. I am going to ask specifically for a c/r who treats IBD.

Becky77
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Date Joined Dec 2005
Total Posts : 1768
   Posted 2/3/2010 4:40 PM (GMT -7)   
Grrr, the fact that "we're not qualified to discuss it with them" is absolutely rediculous. If they feel we don't know about what's going on, they should educate their patients more. Luckily I work in the medical field, so my GI talks to me almost as an equal, and because I do understand things more in medical terms, that's how she presents things to me. My surgeon also does the same. Sorry to all of you who don't get the explanations you deserve...it must be so frustrating...but on your behalf I'm irritated!

Regardless of your education about your disease, etc., if you ask a doctor a question...it is THEIR JOB to answer the question. Too bad not all doctors do all aspects of their expected jobs. I worked for a hospital that advocated patient education, and because of that, I think all patients should be educated. The more you know and understand, the more accidents and mistakes can be avoided.
Becky

31 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, sublingual B12, Coumadin


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 2/3/2010 8:56 PM (GMT -7)   
Everyone just remember, half the Doctors finished in the bottom 50% of their class.
Male, 54 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since early 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. 5-asa Salofalk, Entecort, Imuran and Prednisone in the past.


mastersmom
Regular Member


Date Joined Dec 2009
Total Posts : 93
   Posted 2/3/2010 9:13 PM (GMT -7)   
Yea and they were apparently absent the day bed side manners were discussed.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 2/4/2010 9:09 AM (GMT -7)   
The way I look at it "I" am the most important member of my medical team, after all I'm the one who endures the benefits or consequences of any decision "we" make - and "I" have the final say.

Since I am paying the bill, whether thru insurance or out of pocket is immaterial, I'm still the one paying the bill, "I" am therefore the employER and "they", like it or not, are MY employEE. Since they, supposedly, have the education and knowledge, THAT is what I am paying them for. They make suggestions based on their knowledge and experience, "I" decide whether to follow their suggestion - or not - since I am the one who benefits or suffers the consequences. It is THEIR job to see to it that I am FULLY INFORMED to the best of their ability. If that isn't good enough then I need a different doctor. If it doesn't make sense to me then it doesn't get done.
My computer says I need to upgrade my brain to be compatible with its new software.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 2/4/2010 9:10 AM (GMT -7)   
If you cannot explain it to a 18 year old then it is not something you should be doing.
There is a reason why in the military they say explain it to the level of Private Joe Snuffy who graduated because they got tired of seeing him.
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