Okay. CT Enterography Report

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CrohnieToo
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Date Joined May 2003
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   Posted 4/24/2008 8:57 PM (GMT -7)   
Briefly:
CT enterography showed high-grade stenotic stricture approximately 5-6 cms in length in the mid-ileum w/marked dilatation of the bowel proximal to the stricture. Two additional areas of Crohn's disease, one in the distal ileum and another more proximally. Some thickening seen in the distal transverse colon. 8 x 6 xm cystic lesion in the left adnexa.
 
On the CTE images the dilated portion of the mid-ileum is as big as my stomach, at first I thought it WAS my stomach but unless I had two stomachs .... and then Dr Tremaine tells me that my stomach is distended due to the barium so that just made it more discouraging. *sigh* How can someone feel this well and have such horrible looking innards is beyond me! I don't feel anywhere near so bad as those images look!!!!
 
I don't even wanna think about how that partial obstruction I lived w/for 2 1/2 years when I was nauseated 24 hours a day, 7 days a week the entire 2 1/2 years must have looked on film!!!! The opening must have been no wider than a straight pin!
 
Since I don't FEEL that sick its really all rather interesting. I just wish it wasn't me and my innards that were so interesting. eyes
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sniper
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Date Joined Feb 2004
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   Posted 4/24/2008 9:41 PM (GMT -7)   
Geeeez C2, whats the next step?? More pokin and prodin or do they have an idea for some better meds?? Hope there is something to put you on the mend..Big Hug....
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/25/2008 7:01 AM (GMT -7)   
Thanks, Sniper. Unfortunately, it isn't inflammation, its scarring. *sigh* They've been recommending surgery for this since 1999 but symptomatically I was doing so well w/medication (Pentasa and Imuran) that I wasn't buying into surgery then. 2003 when the simple ovarian cyst showed up they really began pushing for surgery for both issues. But the cyst is presenting no symptoms and I was still running in and out of symptomatic remission w/the Crohn's so passed on the surgeries. Now they are almost positive it is "just" scarring and not inflammation. But - you know me by now. The big skeptic when it comes to the medical profession ... gonna check into the nuclear white blood cell scan to check the area for inflammation. Since I can't be sure of scheduling that procedure w/the local radiologist I have confidence in I'm going to check into U of M's experience w/doing the nuclear WBC for Crohn's inflammation or even Cleveland Clinic if I have to. Mayo felt it wasn't necessary and while I have the utmost respect for Mayo over ANY medical institution, its my bod and "I" feel it is necessary to help me decide on when to agree to the surgeries. I "should" have been more insistent instead of just mentioning it whilst at Mayo but .... what can I say, I had a lot to absorb and process in such a whirlwind round of tests, consults, etc. Hindsight is always better than foresight. *sigh* I can be a bullheaded ole broad when it comes to sedation and anesthesia - and surgery.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


dunny2
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Date Joined Jan 2007
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   Posted 4/25/2008 7:49 AM (GMT -7)   
C2, I'm sorry to read such dismal report, but it does sound familiar. My last surgery was done, following that kind of report.

I know you're very worried about surgery, but in the long run, It might just make a difference.

I wish you so much luck, and I think you are far more interesting than your innards. After all, on this forum, it's our insides
that are the same, not our personalities!!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


Sniper
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Date Joined Feb 2004
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   Posted 4/25/2008 7:54 AM (GMT -7)   
Well you be as bullheaded as you need be, but dont wait too long to do whatever is best to do. So far I have been lucky in the fact that any surgery I have had was a, You need this ,NOW, surgery, like my Bypass. I am sure you will steer the doctors in the right direction though. Keeping you in my thoughts and prayers...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/25/2008 11:40 AM (GMT -7)   
You know, Sniper, my first surgery (not Crohn's) was an emergency surgery. And my Crohn's resection was an emergency. Yer, right. I think I preferred that!!! Thank you for your thoughts and prayers. You know, of course, that you and Camilla have been in mine for some time now. (((hugs)))
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 4/25/2008 1:07 PM (GMT -7)   
Emergency surgeries are not the best way to deal with problelms with crohn's. I understand where you are coming from but somewhere between opting for surgery with the first symptom of obstruction and coming to the table as an urgent admission there must be a balance. Why do you prefer the thoughts of an emergency? Could it be because that way the choice is not yours to make. A choice to do nothing is still a choice.

I only ask because I have come to realize that that's been my history.
Belleenstein:

30+ years living with Crohn's.


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/25/2008 6:57 PM (GMT -7)   
Man, CToo! Certainly not what you were wanting to hear! I'm so sorry!

CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/25/2008 7:01 PM (GMT -7)   
Well, I wouldn't go for an emergency surgery locally!!!! I'd high-tail it for Mayo. That is what I did my first resection. I was admitted locally thru ER, refused to let the local surgeon operate, he was one of those who would lie thru his teeth to get you to do what he wanted to do and tried to tell me the Crohn's was all up and down my small intestine and wouldn't commit in the least to what he was gonna do if I let him go in. I spent time on an NG tube and IVs, then released myself and flew to Mayo, was admitted thru the ER there and had surgery either the next day or the second day. I forget which. I wouldn't wait as long this time before going to ER, let them stabilize me and fly to Mayo - or drive. In a pinch it is only a 12 hour drive to Mayo from here and we don't have little kids still in school to have to make arrangements for. We are free to just head for Mayo at the drop of a hat. Thank God!

Hey, when I'm sick enough the decision isn't that hard to make at all. But when you feel fine 95% of the time or better. No pain, no nausea, it just is NOT that easy to agree to surgery that MIGHT leave you w/diarrhea and/or urgency and/or the need to be drinking Questran every day, etc., etc. When the alternatives look better than the now is the time for agreeing to surgery in my book. NOT before then. I'm not saying that is the SMARTEST way to go, but I am saying its the only way I'm willing to go.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 4/25/2008 10:04 PM (GMT -7)   
C2 your thoughts remind me of a great aunt I loved very much. She was DX with what the doctors told her would kill her in less than three months if they did not operate right away. She refused. She chose to see what life had in store. I was in high school then. When she passed away, after out living her husband and her only son, I had been married for about 27 years. Yes I trust my doctors , but I also trust that gut feeling(no pun intended) that tells me when something is right or wrong. When I had my heart trouble and they found 100% blockage doc looked me in the eyes and said you need bypass now. I could tell from his look that he was very concerned and I knew from the way I felt that this was what needed to be done. Even still , one artery that was blocked had begun to make a new path around the blockage. It had been there that long. So why didn't I die,,even the surgeon could not answer that one. Doctors cant answer all questions.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Sarita
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Date Joined Mar 2005
Total Posts : 2486
   Posted 4/26/2008 12:22 AM (GMT -7)   
C2, it's daunting as all get out to be in this position. Remember that the doctors suggest what has the "highest chance of success for most" - but ultimately it is going to be up to you, and what's "best for most" may not be best for you. Tricky, tricky. Where's the manual on this one? I need one too.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 4/26/2008 7:09 AM (GMT -7)   
Giggle. It would depend on WHO writes the manual, Sarita. I don't learn software easy. I remember the manual that came w/my WordPerfect 5.1 years ago. It obviously had been written by computer geeks FOR computer geeks. It sure wasn't written for the computer illiterate!!! THEN I found and bought a secondary WP 5.1 manual by either Sybex or Que. I forget which. Man! It was SO EASY! There wasn't ANYTHING I couldn't do in WP 5.1 thanks to that manual!!

Trouble is, like you I haven't been able to find one for Crohn's Disease 101. *sigh*

Sniper, I am very much a "gut instinct" person. Have been all my life, long before Crohn's disease reared its ugly head. So far they've led me in good stead so I see no reason to change now. (That's one of the reasons I don't wanna part w/any more of them than absolutely necessary any sooner than necessary *wicked grin*) I'll have to remember to use that one on my gastro when I see her and she pushes me - again - to have the surgery. Might as well give her something else to roll her eyes about.

And, Sniper, you are another step ahead of me. I don't trust ANY doctor! Some I have more confidence in than others - but trust - uh uh. They don't live in this body, I do! Ultimately, I don't trust anyone but me. If I make a mistake I don't have anyone but me to blame. And that works best for me.

(((hugs))) to both of you!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 4/26/2008 9:47 AM (GMT -7)   
Crohnietoo:

How sick is sick enough?

My concern isn't about whether you can get to an appropriate medical facility in an emergency. My concern is that waiting for an emergency is like playing russian roulette. Maybe you'll dodge the bullet, but maybe the next emergency might be the one where you've gotten too close to the brink and by the time there is no choice but to undergo surgery, your body might not be as ready to deal with the challenges and complications that can arise in an emergency.

It sounds like your bowels are starting to get seriously distended proximal to the most severe stricture. Sure you feel fine most of the time, but your bowel isn't fine. It sounds as though it is severely compromised. It is in situations like this that abscesses and fistulas can form (that's what happened to me, but all the while I was "fine"). What if the pressure on your bowel causes a free perforation? Do you really want to wait until you are in septic shock for surgery? Yes, if that happens you WILL know you are sick enough, but what consolation is that?

Not saying you should or shouldn't have surgery. Just saying it is really important to remain rooted in your reality. The results from that CT enterography are a significant piece of that reality. And despite how you feel, your bowels are sick. You are fortunate to have had access to a diagnostic procedure that so clearly identified the problems. Now comes the tough part. What to do with that information? You say you don't trust any doctors, but why are you submitting to radiological examinations, which are conducted and interpreted by physicians? Isn't there a part of you that recognizes that you can't do this all on your own.

Sarita is right. It is not easy, but right now it is your reality.
Belleenstein:

30+ years living with Crohn's.


ski bum
Regular Member


Date Joined Jan 2007
Total Posts : 451
   Posted 4/26/2008 12:22 PM (GMT -7)   
Crohnietoo, you said you wouldn't go for "emergency" surgery locally, but rather, would take a 12 hour trip to Mayo. I believe you live in Michigan? I am also a Michigander and just had surgery at William Beaumont Hospital in Royal Oak. I did my due diligence and found a colon and rectal surgeon who the anesthesiologists, OR nurses and staff at the hospital recommended. I was not disappointed. I am a strong believer that we have excellent, caring and highly competent physicians in Michigan and have not felt compelled to look out of state for care and treatment. (Then again, my case is not complicated and if it were, I guess it could be a whole different story). My experience at Beaumont was about as close to perfect as a hospital stay can be. I had a tough time making the decision to have surgery and the thought of waiting for a surgical emergency passed my mind, but I eventually opted for elective surgery. I'm only 4 days post-op and too soon to state unequivocally that I made the right choice (the diarrhea is a bit discouraging) but it's wonderful to be without pain. I hope you will eventually find a doctor whom you can trust. It doesn't have to be blind trust, but at least having some faith and trust in your doctor can help you sort through the decisions you may eventually have to make.
50 y/o F. CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira and Entocort.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 4/26/2008 4:56 PM (GMT -7)   
Thank you. I can have confidence in a doctor but not complete trust. And, yes, I've heard great things about Beaumont and they are rated highly in US News & World Report's annual hospital ratings. But our experience has been w/Mayo Clinic - my family has been going there since I was 16 years old. They are the EPITOME of EFFICIENCY. And, yup, Bellensteen, I waited too long my first resection. I had perforated according to the doctors and surgeon. I wouldn't wait that long this time. I trust me. I will KNOW when it is time. Thank you guys so much for your concern, support and advice. I do appreciate it. Honest injun!
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

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