Tracy, I didn't realize how talented you are!!! :thumright:
:ack: :yfrown: :ack: :voodoo: :ack: :confused2:
Well, that pretty much sums up how I feel about yesterday's apptmt!
End result is we're most likely going with remicade. So, how we got there...
MRE shows no change from previous MREs - so good news that things haven't worsened, but no improvement either. He said it's not easy to determine if narrowing is from inflammation or scarring but, there is inflammation present - a significant length (his radiologist didn't give a measurement but the previous one did at 20-30 cm) in his distal/terminal ileum (and a bit at the jejunum). There's no way to predict when the inflammation will cause further problems - just because it hasn't so far, doesn't mean it won't in a month, 6 months, one year, etc.
He wants to get the inflammation under control as quickly as possible - said he truly believes that remicade (although he'll go with humira if we choose) is the correct treatment.
Flagyl, entocort - doesn't believe they will be effective in bringing the inflammation down.
Testing - he doesn't put a lot of value in labs. Believes there are too many variables that could affect lab results and that they are only a snapshot of that day (ie Stephen could eat something that could inflame his gut for a couple of days and, if labs were taken then, the 'higher' levels may not be an accurate overall picture). Uses labs just as indicators to guide towards other testing, assessing treatments, etc. Didn't give much value to the fact that Stephen's labs have all been improving since the summer.
Wants to do an endo- and colonoscopy in January. When Stephen was diagnosed through scopes, they showed inflammation in his stomach, duodenum colon and TI. All MREs since then have indicated no inflammation in his stomach and colon (no mention ever of duodenum, only jejunum) - he said sometimes MREs don't catch all inflammation, scope will give him more info re these areas.
Pill cam - asked to do pill cam so that we can also see small intestine. He doesn't like the risk of it getting stuck, I said I would also like to do the dummy pill cam first - he said he preferred the scopes and is satisfied with the info he has from MREs re the small bowel.
Biologics vs. immunosuppressants - said for the small increased risk in going to biologics, he believes they are more effective than immunosuppressants (between metho and imuran, he believes imuran is more effective so if we choose this route). Between remicade/humira - prefers remicade mainly because of compliancy/follow up - patient won't take treatment a day late, won't inject incorrectly, etc. plus can get f/u info from nurse if necessary and labs can be done at each injection. I asked him what he would be looking for in the labs, he said any indication that something is off (with Stephen there, I really didn't want to push questioning re cancer indications, etc.)
LDN - will no longer prescribe because now that he's seen the original scope results (which he hadn't seen before??), said he's not comfortable prescribing LDN when there is a chance the crohns is through the stomach, colon, ileum (this will be confirmed at the scope but I do not believe it will change his mind re the LDN).
So, where do I stand... (actually, not sure if I'm still standing :yfaint
... He seems very sincere, truly seems to believe that remicade is Stephen's best option. On the other hand, is offering NO options - no antibiotics, no entocort, barely immunosuppressant... for the most part, reason being he doesn't think they will be effective (how is it that nothing else can be effective?). Wants to do scope because he doesn't feel MRE is accurate enough to confirm there is no inflammation in stomach, etc. yet feels MRE is accurate enough to give him reassurance that small bowel has enough inflammation to warrant remicade (so pill cam not necessary). :ywow: :confused2: :ywow: Am I being nit-picky?? He did give his reasons for these questions...
GI really speaks of the dangers and consequences of untreated disease - I'm a bit torn if he's going overboard or if he's just trying to truly make us aware of the risks. Both times we've left there, Stephen's left fearful to not start remicade TODAY. :confused2: So, I have to take into account that Stephen is very much leaning towards doing remicade but is willing to listen to a second opinion.
So, for now, we're going to book his scopes and, I suppose, start the process for remicade (insurance, etc.).
BUT want that second opinion! My BIL had to have his entire esophagus removed a couple of years ago (as far as I know, this is a very complicated, risky surgery), surgeon who did this is not a GI but is head of surgery at the hospital. Husband has also met with him due to his own acid reflux issues. (Both have said he is a very compassionate doctor.) It so happens that my BIL has a follow up apptmt tomorrrow, so my husband will go with him to the apptmt, give him a brief summary of what's going on and ask if he can get us a second opinion with a GI very quickly. And am still waiting to hear back re the referral request Stephen's GP made a few weeks ago (it typically takes months to get an apptmt though
)
So... that where we stand. I'm kinda blown away and not sure what I'm thinking now... although I know I'm not happy and my bubble is nowhere to be seen!
:ymad: :ack:
❤
