Bad day... and serology 7 question

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Date Joined Dec 2007
Total Posts : 298
   Posted 1/16/2008 12:30 AM (GMT -7)   
Just when I thought 2008 couldn't get any worse, I got a call this morning that my grandfather is in the hospital. He has metastatic kidney cancer, he already had a kidney removed in August of 2006. Things had been up and down but he seemed to be doing well lately. I talked to him on the phone twice last week and he sounded great. He had a brain scan in September that was normal, but now he has at least five metastases in his brain. Yesterday they caused a bleed, and now he has, essentially, stroke-like symptoms from the inflammation. He can't talk and the frustration is driving him to tears. There isn't really anything they can do. Even with radiation (which the docs are not recommending, as a quality of life issue) they said he has about three months. This is not good.
It's been about two weeks since I was diagnosed, and I have an appointment with the doc on Thursday. I figured I couldn't be that bad off, since he didn't want to see me for so long. I really wanted to go out there tomorrow, I had a ticket on hold, but my side feels weird and after being so upset all day I felt too exhausted to travel, especially without my husband, who can't leave yet. I made up my mind on the drive home from work that I would talk to the doc on the phone tomorrow if possible, reschedule, and leave early Thursday morning. Then I got home from work and I had a letter from the doctor (I have not spoken to him, but his nurse did give me a few messages). It said:
Dear (Confused in IL):
Your extensive work-up points to Crohn's disease of the small intestine. You have significant high titers of antibodies which may predict severe course of the disease. I would strongly encourage you to be aggressively treated. You may want to find another gastroenterologist if you are not satisfied with my care...
And he goes on to say he's willing to give me the names of other gastroenterologists who are "interested in treating this condition as well,"  and to let him know if he can be of further assistance to me.
I'm not really sure what to think. I only talked to him once for a consultation, and then he did the colonoscopy six months later. Obviously his impression from the consultation was wrong, but the doc in Chicago did not diagnose the Crohn's either so I don't hold it against him. When I had the colonoscopy he seemed mad, maybe at me somehow because he didn't order it (my primary at the health center did), of as if he felt like he was wasting his time and wasn't going to find anything. Is he just writing that because he didn't diagnose me properly the first time and he feels bad? Does he not feel able to treat me? I don't know. I am not too pleased with him because he won't talk to me on the phone, but I don't feel like I've really given him a chance.
The whole thing got me upset. Today I was so anxious I was getting a fever, but I walked on the treadmill for a little while and felt better. I'm just so confused. What does severe course mean? Aggresive treatment? Apart from this vague discomfort on my right side, started last night after dinner at a Mexican restaurant (lesson learned) I have been feeling OK.  But that pretty much sealed the deal, and the prospect of a "severe course" made my family think I should keep my appointment Thursday and wait until the weekend to fly out. So I'm waiting.
Anyways, these are my Serology 7 results. Reference values in parentheses.
ASCA IgA <12 (<12)
ASCA IgG 61.9 (<40)
Anti-OmpC 19.4 (<16.5)
Anti-CBir1 114 (<21)
IBD specific pANCA:
AutoAntibody <12 (<12)
IFA Perinuclear Pattern Not detected (Not detected)
DNAse Sensitivity Not detected (Not detected)
When I looked at it, I thought, "gee, three numbers are high, but I four out of seven are normal, so I think that means I'll be OK." Optimistic, I guess? Does any one else have numbers that high?
On top of all that, my recent CT scan said one of my kidneys looked inflamed and I have two "lateral subcapsular foci" in my liver, I don't know if my liver still goes down to my pelvic bone or not, didn't say. And my sister in law probably has MS. And my sister is pregnant, unwed, has an ovarian cyst, just moved to the other side of the country... And about seven years ago my father was told he had six months to live, he's still around but lately not well at all, I doubt if he'll see 2009, either.
Please tell me: Why must all this *&^% happen at once???  I told my mom today  that I was already writing off 2008 as a &^^%$ year, which is sad because it's only January 15th. Her response was "I hope it gets better soon, because I can't talke eleven and a half more months of this."

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Date Joined Mar 2005
Total Posts : 2486
   Posted 1/16/2008 2:43 AM (GMT -7)   
I am so sorry about your grandfather. What a trooper he seems to be. Are you able to visit him at all? Maybe you can write him a really comforting letter that he can keep with him while he's going through this. Reminisce about some fun times you've had together, send along an MP3 player loaded up with tunes from the days he was growing up - always has a recharging effect. Even just keeping up with those phone calls will mean so much to him, I'm sure.

As far as your own health goes, it's a very scary time for you, especially when you get a letter like the one you received. What I would do is set up an appointment with that doctor ASAP and say, "What do you recommend as treatment? What are my other options? Where will we go from here? What if I need to be hospitalized at some point, how will that work?" Ask him the tough questions. If he hems-and-haws, he very well may not feel comfortable treating you if he feels like your case is outside the realm of his expertise. It sounds like he wants the best possible care for you. So ask him if he can provide that and if not, you need specific suggestions and cooperation on his part.

I'm not a whiz with those numbers. Numbers, to a doctor, are fairly meaningless unless we have the whole picture in mind, which I don't. It does show some abnormalities but it's more complex than that. Many other members here have had the IBD-7 (myself included, not sure if I have the actual results) and I'm sure they will chime in.

In the mean time, please take care of yourself...sometimes life requires some rearrangements during times like this. I too am learning this lesson very quickly. Keep us updated, we want to make sure you're okay!
Co-moderator - IBS Forum

Veteran Member

Date Joined Oct 2004
Total Posts : 3042
   Posted 1/16/2008 3:33 AM (GMT -7)   
Hi Confused, My prayers are with you and your Grandfather.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital
in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.
 My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
My Internest doctor has me on Lisnopril-HTCZ and Folic Acid. Diagnosed
with Osteoarthritis July 2007

Veteran Member

Date Joined Nov 2007
Total Posts : 4384
   Posted 1/16/2008 6:50 AM (GMT -7)   
I don't know how to interpret the Serology 7 numbers, but I do know that they rate severity of Crohn's on not just that test, but your symptoms, colonoscopy etc. Where do you live in Illinois? There are a lot of great GI's in the Chicago area. Dr. Hanauer's group at University of Chicago is supposed to be one of the best in the country. I agreee with Sarita, that you should go see the doctor you have since you have an appointment scheduled, but you don't have to stick with him for treatment if you don't like him.
My mom has cancer and lives in California during the winter months. I've been very sick with my Crohn's, and I haven't seen her since last May. I talk to her every day, but it isn't the same. I know my mom totally understands and wants me to take care of myself. My guess is that your grandfather would feel the same. Hopefully one day soon, I will feel stable enough to get out there, but I've learned to take life one day at a time. Good luck with everthing!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

Veteran Member

Date Joined Mar 2007
Total Posts : 1642
   Posted 1/16/2008 7:17 AM (GMT -7)   

So sorry to hear of your grandfather!

I was told my disease was mild at first then my doctor switched me to severe due to blood tests etc.

I live in the suburbs of Chicago so if you want a Doctor recommendation I love my GI and would be happy to share his name. I can send it to you if you like. If you think you want to keep the same Dr I would make an apt with him and talk. tell him what you expect and ask how he would treat you. He may be misunderstanding what you are looking for in him.


good luck!



Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 1/16/2008 8:54 AM (GMT -7)   
Problems do seem to arrive all once, don't they? Regarding your grandfather, is he able to write or type? If so, supplying him with pen and paper or laptop might relieve some of his frustration at being unable to communicate by voice. If he has some paralysis, there are a variety of communication aids that could help, such as pictures or letters you can point at and devices that allow you to use your eyes to select letters or pictures. You might try EnableMart, which has a website and also a catalogue (look under "communication aids"), and there are also other companies that specialize in assistive technology.

For yourself, I would focus on the fact that you feel pretty good at the moment, regardless of what the scopes or tests showed, and that you already have a plan in mind for a treatment that you would like to try. No one knows what your course of disease will ultimately be, so I wouldn't spend a lot of time worrying about something that may not come to pass. Regarding the kidney and liver issues, you may be surprised that they subside once you are on a treatment that gets you into remission.

Good luck, and I hope you and your family have better times ahead.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/16/2008 9:16 AM (GMT -7)   
Hi all, thanks for the kind words. My grandfather has always had a great attitude, though it's hard right now. He's in the hospital trying to get my family to contact such-and-such a person about whatever insurance policy or client, he sells insurance and only retired last year. I was there in August '06 when he had the surgery. In the pre-surgical area, after he was given sedation, he told the (male) nurse that the stuff must be working, because "You're starting to look good to me." My family is in Miami. Now I can't really talk to him, the doctors said that inflammation has caused a disconnect between thought and speech, so although he thinks clearly, he has a hard time communicating. He has already seen a speech therapist once. I'm hoping we can fly out on Friday or Saturday and my husband will go with me.

My appointment is tomorrow. I need to draw up my list of questions so I really appreciate all the great suggestions. Since I don't really have a "relationship" with this doc yet, I will see what he thinks, if I need to see another gastro. I think though that he is one of the few local gastro docs that also has an interest in hepatology.

Last August I saw the director of hepatology at University of Chicago. I have not called them yet, I wanted to wait until after my local appointment. I need to have a further work-up on my liver, plus I was hoping they could help me get connected with one of the IBD docs there. If there is anyone at a Chicago hospital you recommend--please e-mail me!!! I live in Champaign so I can drive or take the train.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/16/2008 9:19 AM (GMT -7)   
Thanks Writer. My grandfather cannot use his right arm, which he writes with. I suggested my family brings him a laptop, I will look up the website you mentioned. He has already seen a speech therapist once, and if the inflammation goes down he should regain some of his faculties, but it's unknown for how long.
I do know what I want to try (enteral nutrition) but I'm not getting any support from the fam on that. They want me to just do what the doctor says. Granted I have not seen the doctor yet and I can't really predict his opinion, but if he suggests "aggressive treatment" I imagine that would include drugs. I will talk to him about it tomorrow.

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 1/16/2008 9:41 AM (GMT -7)   
Good luck with the doctor. Another idea for your grandfather, since he has one good hand, is that there are keyboards made for one-handed people (available for either left or right hands). You do have to learn a new version of the touch system since the keyboard is obviously different, but if he enjoys an intellectual challenge, that could be something that might be fun to master while he is stuck in bed. You can hook these keyboards up to a regular computer or laptop using a USB port. Another company you might find useful for exploring the sort of product is Infogrip (they also have a website).

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 1/16/2008 9:36 PM (GMT -7)   

"Agressive treatment" might mean only that the doc feels that a plan of action needs to be put into place to treat the disease right away.

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/19/2008 4:59 PM (GMT -7)   
I had my appointment on Thursday, must say I was disappointed. The doc spent most of the time babbling on and on about how "excited" he was to make the diagnosis, and how since I'm not in much pain and don't have D or C, there is no way to monitor my progress short of a scope. I asked about blood tests--esp. since I get them for free at the health center--he was not interested. Based on my size, and that I'm the smallest person in my family, he thinks I probably have had this for my entire life...

He gave me three choices: (1) Entocort 8 weeks + Imuran for the rest of my life, which was his strong recommendation, (2) Entocort alone, or (3) Do nothing. I asked him about enteral nutrition, he had never heard of it, and totally brushed it off as not working. I said I was willing to try the Entocort but wanted to try enteral nutrition first for two weeks and have another blood test. At that point he was rushing us out the door and not listening, but I did manage to get a script to see a nutritionist. My impression is that he wrote me off as choosing option (3), he said he'd see me in a year for a scope. I didn't even get the chance to ask any of my questions.

He also made no mention of a follow-up scan, expressly recommended by the radiologist in the CT report, so I don't feel like I can trust him with my liver, either. (As an aside, my grandfather had a brain CT scan in September that recommended a never happened, and now he has 5 metastases, some very large.)

I figured on Monday I would call University of Chicago about liver stuff and start shopping around for a new gastroenterologist. If anyone can recommend one in Chicago or East-Central Illinois, I'm all ears. I am looking for a nice person who has IBD experience and isn't rushed all the time.

I'm in Miami with my family. My grandfather is improving, though the situation is, ultimately, grim. My side is still uncomfortable, but I'm hoping that goes away soon.

Regular Member

Date Joined Dec 2005
Total Posts : 124
   Posted 1/19/2008 9:18 PM (GMT -7)

This link has more info about the serology markers. Basically the panel helps to distinguish Crohns from UC but it's a problem when you have colonic involvment only...i.e, you could have an elevated pANCA (UC) but it could still be Crohns colitis...

Hope that helps

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/20/2008 5:45 AM (GMT -7)   
Thanks for the link!

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 1/20/2008 8:40 AM (GMT -7)   

What a frustrating doctor's visit! Re: doctors in the Chicago area, I don't know any myself, but you might want to try asking also on the Dragon Pack board for parents of kids with IBD:

There are a number of parents on that board whose kids have used enteral nutrition, including I believe some in the Chicago area, and they might be able to steer you toward a G.I. practice that supports this (although of course many will be using pediatric GIs).

Forum Moderator

Date Joined Apr 2007
Total Posts : 32602
   Posted 1/20/2008 6:02 PM (GMT -7)   

Dear confused,

Oh my, what a merry-go-round you are on..........well get off sweetie and write down in order what you need to do first.........and in my opinion taking care of you has to be first right now.
I would sure look for a new GI and set up an appointment after checking out this person's credentials and reputation.  I think some recommeneded the University. You gave the phycisin a fair chance and your right you were rushed out the door and did not feel good about that. 

I am so sorry about your G-father and it is a long trip and stressful so if you are able to get there to see him that will be good but I feel he knows in his heart that you love him and at this stage he would want you taking care of you.

Remember we are all here for you and you can count on the members of HealingWell to support you and help you through the tough stuff as well as share the good times with you.

Blessings to you and prayers for your G-father.


Kitt, Co-Moderator: Anxiety ~ Panic  ~ Crohn's
*~* *~*
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~

Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 1/25/2008 8:42 PM (GMT -7)   
Dear Confused,

I go to University of Chicago and my GI is Dr. David Rubin. He works in the same group as Dr. Hanuer who is like the best in the country. Dr. Rubin is always there for me if I have a problem I shoot him an email and he is quite responsive. Based on your past posts I think you will like him because he is the Program Director, Fellowship in Gastroenterology, Hepatology and Nutrition. Check Dr. Rubin out at "Crohn's and Me" he is interview with patient Ally Bain (Ally's Law). Also I have a Doctor's appointment there on Wednesday January 30th at noon (with my surgeon) if you're in the area and want to meet let me know.

Dr. David Rubin
University of Chicago Medical Center
5841 S. Maryland Avenue
Chicago, IL 60637
(773) 702-6140
Crohn's and Ostomy in 2004

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/27/2008 5:15 PM (GMT -7)   
Thanks for giving me that info. I called Chicago last Thursday and spoke to a nurse I saw in August. She said they will help me follow-up regarding liver issues, I will send them a copy of the CT scan tomorrow. And they can help me get an appointment with an IBD specialist there. I'll ask for Dr. Rubin.

Tomorrow moring I see the nutritionist, and after that I plan to try enteral nutrition for 8-12 weeks. Hopefully they will help me decide what diet... Right now I am thinking Nutren 2.0. The doc did write in his report (I received it in the mail) that we can check my C-reactive protein levels to try to monitor progress, so I need to talk to my primary about that. We'll see how it goes, I hope I can tolerate the stuff! I am "motivated" so it should be fine. Been feeling pretty good lately.

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 1/27/2008 6:57 PM (GMT -7)   
My prayers are with you and your grandfather as well. Just my two cents : if a doc feels like his own treatment for you has been inadequate or if you are unpleased with any aspect of your care, i think it best to look for another doctor. Trust me, it's hard to feel comforable about ur care and treatment if you don't have trust or confidence in your doctor.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!

Regular Member

Date Joined Dec 2007
Total Posts : 298
   Posted 1/27/2008 8:03 PM (GMT -7)   
At the time I was not displeased with that doctor's care--not until after our most recent meeting. I found out at the meeting he said that because I had gone to medical records myself and obtained my reports. I had done that many times before at the health center and a different hospital, and thought nothing of it. But he thought I should have asked him to make copies, so by going to medical records, it implied there was a breakdown in communication and I did not want to talk to him. Based on the recent appointment I don't feel he has enough experience and he is not attentive enough, not to mention his weird mannerisms, so I'm looking elsewhere for someone I feel I can trust.

My grandfather was discharged from the hospital and is now in rehab, getting physical therapy, speech therapy, etc. He is also getting radiation. Things are...complicated. His prognosis is the same (three months) but I think that reality is, next time the tumors bleed is the end, and there is no telling when that will be. I'm going to try to fly back for the weekend in a few weeks.
Thank you for the kind thoughts!

Post Edited (Confused in IL) : 1/27/2008 8:06:02 PM (GMT-7)

Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 1/29/2008 12:04 AM (GMT -7)   
I hope for the best for your grandfather, he is very lucky to have a grand child who is so involved.

Crohn's and Ostomy in 2004

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