Bad day... and serology 7 question

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."

Hi Confused, My prayers are with you and your Grandfather.

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

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.

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).

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 follow-up...it 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.

Thanks for the link!

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.

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.

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)