So I saw the consultant today...

Heh. Title almost sounds like the first half of a really bad joke. But no, no joke. Apart from the hospital appointment times, possibly <_<

Anyways, I was told by the nurse yesterday that I had been given an appointment at 12pm. Didn't get seen until 1:30. I knew I'd be the last patient to be seen, because mine wasn't a regular appointment. The one positive thing I'll say about my consultant right now is that he does spend proper time with each patient - a trait which reminds me of my GP, and which I also like my GP for. So that was partly why I waited so long: I noticed the other consultant was done and dusted with his patients much sooner... >_>

I have no memory, so it's impossible for me to recall everything that was said and in what order. Would be boring anyway. Luckily - since I gave almost the worst account of my symptoms possible - he picked up on the idea I might have a stricture anyway. Blood test done today to see if I have inflammation. MRI scan if I do. Infliximab goes ahead, regardless... Or does it? I can't remember <_<. He was a lot keener than I that I should continue with the Remicade at any rate. Apparently it was showing signs of doing some good eg. platelets (an inflammatory marker) going down. Not yet into the ideal 'green' range, but down.

He was pretty insistent that Remicade has nothing to do with my current woes. I just about believed him, but if a stricture isn't found and my bloods don't show inflammation, I feel stuck with a set of symptoms that I am finding unbearable. I told him that I was coping before, but I'm not coping now. I'm scared to eat and have only been eating 400-ish calories a day for the past few days. Even was scared to drink yesterday. And the lack of calories has taken their toll: I'm weaker than I was, which is evident in how much less further I can walk. I struggled with the walk from the car park to the clinic; collapsed in a chair and a concerned nurse asked if I was all right :-/

Anyway, I must have sounded and looked really miserable, because the consultant noted that I looked better when I was in hospital. He also brought up depression - my heart sank. Not because I'm one of those ones who think having depression is a weakness and deny having it, but because I really don't think it's related to my lying on the bathroom floor in agony! And, weirdly enough, I don't really feel depressed. I'm certainly not a happy bundle of joy, to put it mildly, but I'm not crying, having suicidal thoughts, etc. Mostly, I'm just numb.

I don't want to turn this post into a novel, and I think I have covered off most of the main points of the visit. I think more than a small part of me would have been quite happy to hear, "we'll take out your colon today", but realistically speaking, since that was never gonna happen, I'm about as satisfied with the visit as can be expected, I suppose. Which is to say, not very, but I do appreciate the consultant taking time out of his lunch hour to deal with me. Oh yeah. One thing I almost forgot: he's gonna refer me to a dietician. That wouldn't have happened but for the intervention of my mum at the end, bless her. But he obviously wouldn't have done it of his own accord. Look, I know I'm not a concentration camp victim, but why do doctors underrate nutrition and being underweight or malnourished so drastically?

One final note: managed the majority of a ham and cheese toasted croissant and a bottle of vimto for lunch. Not healthy. I know. The vimto was sweetened with sugar and artificial sweeteners, so its sugary carb load was mitigated. At any rate the food and drink did the trick and gave me more energy. Hence this post :p

I agree with Gail. Sadly sometimes you with for something to show up so they'll continue to investigate.

I wouldn't put the idea that Remicade could help out of your mind. I obstructed after my second infusion and my GI didn't think the meds had time to work, and I stayed on it and did well.

Sounds like he's actually a good dr and is being logical in his plan for you. I really think you should consider taking a notepad with you to appts to take notes. You get so much info in a short period of time, so it's overwhelming. Did your mom go into the room with you? That's probably helpful also so you have someone to help you remember things.

When is your nutritionist appointment, or have you made it yet?

Many many hugs to you. I know the past year has been so rough and you've been through so much with doctors and this DD. I hope this new consultant brings you to a healthier place.

Oh Cup.

How the world wants to crush you sometimes.

It certinly seems that way often. I am still 7 days out from my scope, could be stricture, ulcers, erosion, pancreatitis, obstructed biliary ducts, blah blah blah....

2 months of eating soup and strawberries with honey and fiber one cereal, no milk. Total, about 8 to 10 fork fulls of food a day, try to stay liquid as much as much as possible myself during these painful times, ensure helps alot, no pain meds for me (

What is my point to my sum up.....

You arent alone, your anxiety is completley natural as well as the thrill you will feel when this turns around, then your amazing discovery of how badly your body wants to fight and live. You are going to come out of this on the other end.

Stick with your GI, keep pushing for testing, wether its a barium scan, mri or what have you.

This may have been asked, but has your GI tried Prednisone for these emergency situations, when most tests fail them, when my GI cant find "the smoking gun of inflamation", somehow going back on 20 mg pred a day begins to turn things around for me within a week.

Strangley, I was on imuran for 2 months and geting sicker and sicker, as decribed above. Won't bore you with gory details of sickness.

Suffice it to say, my anxiety from being in this much pain has hit epic levels, I have to hide my emotional fears from the ltitle woman so not to scare her or myself more, I have to remember, Iv'e been here before, I got through it, I will get through it again. I can't wait to get through this next scope.

I am going to be ok, and so are you. I don't know what the next test will show, it is always a surprise to me or it could show nothing, which would be heartbreak again.

Not long from now you and I and others here will be talking about completley different problems and you will be in much less pain, me too.

Us Capt. Kirks have to stick together

"No, No-Win Scenarios"

Your Friend

Jon

 

NCOT, I feel like we are twins. I feel so sick with fevers and fatigue and bloating, some pain too but definitely not as much as you are going through. But so far, my gi has only found "minimal chronic inflammation" in my rectum from biopsies taken last week during my colonoscopy. I have an MR Enterography this friday but I am guessing it won't show anything (i just want to be fixed and feel so pessimistic). My platelets are really high as well.

I am wishing you the very best with this doc, as he sounds great. I hope you feel better soon! Big hugs to you...

Monkiray said...
I agree with Gail. Sadly sometimes you with for something to show up so they'll continue to investigate.

I wouldn't put the idea that Remicade could help out of your mind. I obstructed after my second infusion and my GI didn't think the meds had time to work, and I stayed on it and did well.

Sounds like he's actually a good dr and is being logical in his plan for you. I really think you should consider taking a notepad with you to appts to take notes. You get so much info in a short period of time, so it's overwhelming. Did your mom go into the room with you? That's probably helpful also so you have someone to help you remember things.

When is your nutritionist appointment, or have you made it yet?

Many many hugs to you. I know the past year has been so rough and you've been through so much with doctors and this DD. I hope this new consultant brings you to a healthier place.

Hello!

Hope you are better NCOT!

And yes, it is so sad to cry that things must go worse before docs take you seriously, I totaly agree with you Monkiray! SIHG!

All best to you, NCOT! Hope you will get little better and not worse.

YP9