Had my appt yesterday-does this sound normal??

[blessedwithfour]

hi all. went to my appt yesterday to find out what the course of action will be. just diagnosed, well actually, not even 100% as they cant get into my small bowel at this rtime due to swelling, so anyhow. tapering down from 30mgs to 10mgs now of pred. my enzyme test came back comaptible to take IMuran. he has given me 3 choices, 1) continue as i am, i told him i wasnt feeling too bad on the gluten free diet. he says he expects i wont feel good for long with nothing. 2) start the imuran, he said "this will be a lifetime thing" and then proceeded to tell me the side effects etc. 3) surgery. he says that from the ct scan and what they could see from the scope it appears to be in terminal ilium only. 30 cms affected. he said that because im am over 40 when first diagnosed that often over 40 diangnosis are not as aggressive and do well with surgery. he said it may buy me 10 yrs of remission. no guarentees, he then said if i run into prblems shortly after the surgery i would then do imuran. he explained that numerous surgeries are not an option etc due to shortening of the small intestine. he then said another colonscopy is in order. my first one was aug 10th. he offered me the date of dec 15 or jan 17 based on scheduling availablity. we leave for a caribbean cruise dec 16, so i went with the jan 17 and am now not sure if i made the right choice. is that too long too wait? he said i couldn continue at 10mgs of pred till i get back from my cruise on jan 4, if i did the scipe on dec 17, id still be on pred and would that increase the likely hood of him getting into the bowel better?? by jan 17 i will be fully tapered and on nothing? will he still have a good chance to get in? also, thats 2 months from now with no course of actiion. the reason i wasnt keen on dec 15 is because if heaven forbid there was a issue, im suppose to board a cruise boat with my famiuly of 6, my parents, gparents and brother and his fam for cmas. im feeling pretty good right now. the whole thing is stressful, i am wondering am i crazy for going on the cruise with 10mg of pred in tow and thats it. feeling no farther ahead thius morning, just way more confused . what do all you guys think???

 

[Crohn's 35]

I gotta say you are brave! Just for the trip I would be up a bit higher and then taper when you get home. If you are on Prednisone and you have a scope, alot of the times it doesnt show much and therefore could be a waste of time. You have over 2ft of Ileum and I have had that much taken out and I am ok for absorption except for being low on b12. Being low on pred and being on a trip could mean your symptoms could act up , and you are stressing now and that can cause a flare. I would go before, because colonoscopies dont affect people for long.

If it were me I would get the scope now. Because you dont want to be on higher doses of pred and then have a scope. I have had Crohns 20 years so I know about most meds.

IF you choose not to have the scope I would up the Pred so you can enjoy yourself. Tough call. Let us know what you decide because YOU want to enjoy the trip too! :hang:

 

[Tesscorm]

Wow, I can understand why you're confused! :ywow: Those are some tough decisions. :frown:

I have very limited experience/knowledge of the meds but, did you mean that you could or couldn't be on 10 mg of pred until the end of your cruise? If you meant 'couldn't', is it possible to taper and reduce more slowly and lengthen the time of tapering (although at lower levels) until closer to the Jan. scope? I understand that pred comes with side effects but perhaps not too severe if at a low dose for only a couple of more weeks???

What are your concerns re doing the scope the day before? (Forgive me if these are 'dumb' questions, my son was only diagnosed a few months ago so my experience is limited!) My only experience with scopes was when my son had an endoscopy and colonoscopy - was sleepy the rest of that day but was fine the next day. But, I would still be a bit worried about doing the scope the day before such a great trip but what did your doctor think about this? Even if you have the scope on Dec. 15, as you're leaving on Dec. 16, nothing can be done until your return anyway. Does your doctor have concerns about waiting to start treatment until after your cruise? (BTW, are you on a waiting list should there be any cancellations for an earlier date?)

How long have you been feeling okay on the gluten-free diet? I understand that diet may not be the long term solution, but is there any reason to think that two months will too long before issues arise? Also, will the cruise be able to accommodate your diet?

The only suggestion I have, and this is something I would probably do as a 'back-up' is take some nutritional formula with you. My son's treatment was enteral nutrition. The formula provides all your nutrition (replaces food, wholly or partially :frown:, not ideal on a cruise), is very easily digested and reduces inflammation. If you can't continue on the pred, perhaps your doctor can prescribe a supply of formula that you can take on the cruise. Should any problems arise, you could start the formula right away. I know there are other members who use these formulas when they run into problems (until other meds begin to work, etc.).

I'm sorry, I'm certainly asking more questions than providing many suggestions but I do feel for you! :ghug: It's a tough spot to be in!

I'm sure other members who have had more experience with scopes will reply soon. Hopefully, they will have more insight!

I hope it all works out!!! And that you are able to enjoy a wonderful cruise! :rosette1: