GI apptmts - how often?

[Tesscorm]

My son is on remicade and is now considered to be in remission. We just had a follow-up apptmt where everything was 'good' and have a follow-up colonoscopy scheduled in a few months (first colonoscopy since starting remicade). My son also has labwork done at every other infusion.

When the secretary called with the date for the colonoscopy, I asked to set up the follow-up apptmt and she said it may not be necessary if all is fine with colonoscopy.

So, just wondering... even when you are in remission, do you still have regular GI follow-up apptmts? And, if yes, is it an annual apptmt? Or, if no, do you go without any apptmts while in remission (unless either labwork or symptoms indicate a problem)?

thanks

 

[Trysha]

When you have the next colonoscopy ask the GI directly about follow up appointments., and ask for printout instructions.( may not be available if they have not thought of this)
I would not be taking the word of a secretary---they are not always right as I have discovered.Mostly they do very good jobs sometimes in very trying circumstances.
I would have thought when someone is having any kind of treatment a regular follow up should be mandatory.
Trysha

 

[CrohnsChicago]

I'm in my first remission right now. When things started getting better I went from 1-2 times/month visits to every 3 months.

I actually had a GI appointment over a week ago and since things are still consistently well after a number of months, we have pushed my next appointment back 6 months. He was willing to keep me on 3 months if I really felt that I was more comfortable with that and of course if anything changes in the meantime I am to make an appointment asap but if things are consistently fine after about half a year then 6 months until the next appointment it is.

 

[Johnnysmom]

After 2 and a half years, Johnny was just moved to appointments every 6 months. They will draw labs before that and want a call if he has any symptoms.

 

[Clash]

C has always been on a 3 month schedule but when we came off remicade and had our follow the GI said to call if any issues arose(this was a month after starting EN. I think the GI felt he'd be hearing from us sooner than 3 months so now I need to schedule a check ip appt I guess? Not sure since all is still fine. His rheumatologist is over seeing blood work for mtx injections and faxing results to GI.

Just not sure since everything is well. GI did say he wanted further testing when symptoms flared but he has also said surgery is next step so wondering if we are in the lull before the storm.

Some of the kids that were doing well on remi at his office were on six month visit schedule with blood work every other infusion and a couple were yearly appt with GI and blood work every other infusion.

 

[Tesscorm]

S's apptmts were initially every couple of months, but since moving to adult GI, it hasn't really been on a set schedule because we had intro apptmt, then MRE follow-up, then colonoscopy follow-up, then after remi loading doses and THEN one more before he left for school last August. At that apptmt, GI suggested waiting until now (May) for the next follow-up as S would be away (unless something came up). I'd assumed the next follow-up date would be given to us when his secretary called with colonoscopy date so didn't ask GI about it. But, now it seems kinda vague about if/when there will be an apptmt?? (But, Trysha, I agree that the secretary's decision on this may not necessarily be correct. :lol

I'm totally fine with an annual apptmt if all is good and I will ask GI after the colonoscopy... but just wondering what's normal?? Is even 'annual' typical if labwork is good and no symptoms?? What would be discussed? And, I guess, now also wondering what tests are typically done when in remission (other than labwork at infusions)? MREs? I don't think colonoscopies are typically done annually (think he's primarily having it done this time as a follow-up/baseline since he's started remi). (By the way, non-urgent scope date - Mar 2015!! Just in time for the 'annual follow-up' anyway! :lol: We do have our waits here!!)

I'd also expect that it's a bit different with younger kids as there are more issues to follow (growth, development, etc.)

 

[CrohnsChicago]

Well with my 3 month / soon to be 6 month visits we do all lab work, we have a lengthy discussion of symptoms and lifestyle changes and any addition/omission of medications both crohn's related or otherwise that have occurred since last visiting the GI. I give him an idea of what I have going on in my life as well as what I hope to accomplish however it may relate to my overall health but especially with crohn's.

He does his in office examination. Answers any questions I may have regarding my current condition or how things may or may not change in the future and we base what happens next on those talks. This is how we have done it for majority of my time seeing him.

With regards to what specific tests are done, he does my 6-mp bloodwork, does a CBC and if I ask he will do my B12 and other vitamin/mineral testing. The blood work will be related to my specific condition.

 

[theOcean]

I still have regular GI appointments every three months, and blood tests done every two.

 

[Catherine]

We had a follow up GI appointment to January. She had a colonoscopy in August of last year. There was no follow appointment. The colonoscopy was main clear due to micro inflammable had a couple of phone consults and a medication increase.

 

[Cross-stitch gal]

If I'm doing well, I only have one once a year. This year though, I'll need to schedule a colonoscopy so will see my GI twice. Last year we were still trying to fix me so I saw him a couple of times.

 

[xmdmom]

I would be shocked if a doctor didn't see a person on Remicade at least every 6 months. If a person with Crohn's is in remission apts might be once a year; with some symptoms every 3 to 6 months would be my guess. I wonder if the secretary just didn't know. Tess, I'd call to clarify and perhaps speak to a nurse rather than the secretary.

 

[Tesscorm]

I will call his GI's office later this fall - regular assistant will be back from maternity, the one I spoke with is just the temp secretary.

xmdmom - why should a doctor see a patient on remicade every six months? Am I totally missing something here? S has bloodwork at every other infusion (every three months), but is there any 'extra' labwork that should be done periodically? His usual bloodwork includes hematology, CRP, chemistry (creatinine, eGFR, sodium potassium, chloride, albumin, bilirubin, alk phos, ast, alt, GGT, amylase, B12) - is there anything else that should be looked at related specifically to remicade?

We discussed testing vitamin levels and GI didn't feel that regular testing was necessary as S drinks 1-2 Boost shakes daily plus 2000 IUs of vit D.

Certainly not trying to avoid an apptmt (I would be more than happy with regular follow-ups once or twice a year!), just trying to figure out how things should go when there are 'no issues' and no changes??

theOcean - how long have you been in remission?

 

[Clash]

I think I may be missing something as well, if all the blood work is being done regularly and the patient is in solid deep stable remission then I'm not sure why more than once a year would be an issue. Of course, the remi lab is in our Ped GI office so if I had questions or the remi nurse felt something needed to be addressed then access would be easy. When we were on remi we would schedule the GI appt on the same day as remi to cut down on travel but also because when C was doing well the GI appts didn't tend to last that long.

Is there other testing that needs to be done in that situation? I guess it doesn't matter now since it never applied to us but I am curious.

 

[xmdmom]

I think when you are on a heavy hitter like remicade that does have risks of serious infection and malignancy, I think it would be appropriate for a doctor to examine someone every 6 months and do a thorough review of systems (history). Yes it does depend on what happens during the infusions -- does the same nurse see the person each time and ask more than how are you doing?

While lots of people here on the forum bring up new symptoms to their doctors, you might be surprised at how many do not unless they are asked specifically about them. I never prescribed remicade so I have no idea what the usual monitoring period is.

 

[Tesscorm]

Yes, that makes sense. It probably wouldn't be a far stretch to imagine, if I'm not at the apptmt, S would need some prompting to remember (or take note of) certain symptoms - otherwise, if he's feeling well at that moment, when asked 'how's everything?', his answer could simply be 'fine'.

I'll make a point to speak to his GP as well. His annual GP check-up is in the Fall so, between the GI and GP, that will put S on close to a six month schedule. His GP has told me that he has a number of patients on remicade so I feel better that he does have some experience with it.

Thanks

 

[SupportiveMom]

Just want to say how happy I am S is in remission! Woo Hoo! May it be a long remission!!!

 

[Daisy123]

I am six monthly usually but three monthly at the moment. I have bloods at my Drs every three months because of the Aziathropine.

 

[theOcean]

theOcean - how long have you been in remission?

I've been in remission since about last October/November, but I'm treated with Humira so I get blood tests every two months and still see my GI every three or four.

 

[Tesscorm]

Thanks. S has probably been in real remission for about as long as you???

Just out of curiosity, is your GI part of an IBD clinic in a large hospital or works from his/her own 'independent' office? When S was transferred from Sick Kids hospital care to an adult GI, it was one of the factors I considered when choosing an adult GI - both had pros/cons, so ended up going with Sick Kids' recommendation... so, just curious how the care differs??

 

[theOcean]

Thanks. S has probably been in real remission for about as long as you???

Just out of curiosity, is your GI part of an IBD clinic in a large hospital or works from his/her own 'independent' office? When S was transferred from Sick Kids hospital care to an adult GI, it was one of the factors I considered when choosing an adult GI - both had pros/cons, so ended up going with Sick Kids' recommendation... so, just curious how the care differs??

My GI is from Mount Sinai hospital (in Toronto, not the famous one, sadly) so it actually specializes in gastroenterology! He has his own office within the hospital where I go for appointments, and all other procedures are done within the hospital, too. I was also there when I was sick and hospitalized. I've had really great care and it really has knowledgeable doctors there.

I know Women's College has it more as part of a "team", and if my own doctors weren't so scattered that might be ideal for me, but unfortunately that's not the case. In the meantime I really like my GI at Mount Sinai, though, and I really feel like he's trying to do what's best for me and has great bedside manner, and I really feel like I can have good discussions with him and weigh options with him. He really made me feel confident that I could get into remission, and I have.

 

[hawkeye]

Typically every 6 months, years ago when I was in remission for a while I had a GI actually stop scheduling visits - I'd never do that again.

 

[DustyKat]

Sarah, in remission for 8 years, sees the GI annually.

Matt…ummm…didn’t see the GI for two years post op, in remission 3 years now. The GP and I were monitoring things and he was on a 2 monthly blood schedule plus when needed in between times. When the new GP set up a chronic health care plan he referred to back to the GI. It was a time when the old GI left the practice for politics so it was also a new GI. The new GI was less than impressed that Matt hadn’t been reviewed by a GI for 2 years. :eek2: He likes to see his IBD patients every 3 months, even when in remission apparently, but due to the tyranny of distance and university that is not possible so he was willing to compromise at 6 monthly visits but no more time between visits than that.

Dusty. xxx

 

[blackli]

I would definitely go annually. Years back,when I was I remission once for over a year, then got very sick, the gi's nurse would allow me to make an appt without a new referral from my GP! It's not like this disease goes away! I didn't go,back to him, got a referral to another GI. In Ontario, we need a GP to refer to a specialist and it cam take many months to get in for a new appt.

 

[Tesscorm]

Blackli, that thought had also crossed my mind. I believe if you haven't seen the specialist in 12 months, you must get a new referral! However, I don't think this would an issue because, even if 12 months passed, there is the ongoing remicade prescription and bloodwork done/reviewed by his GI every three months, so I'm thinking he would still be considered an active patient of the GI (but don't know this for certain).

Thanks everyone for your comments. For all the reasons above, I do agree that, at least, annual visits are warranted. There's no rush as we've just had our apptmt but I will follow up when the GI's regular assistant returns in the Fall.

 

[DustyKat]

We have the same referral system here and it can be bypassed by asking the GP to do an ongoing referral. That said, once you see a specialist it shouldn’t be an issue for your GP just to do another referral to the same guy no matter how much time has lapsed between visits.

Dusty.

 

[my little penguin]

I think it varies DS has a lot of different docs and each has their version of X months to check in for routine stuff.
Asthma doc - 3 months if there is trouble but out to 6 months if stable.
Gi - does 6 week or sooner if things are rough - 3-4 months if stable.
IT makes things easier so you can actually cover what is needed during the appt other wise 12 months would take forever to cover.

good luck.

 

[warn81]

right now every month. had a colonoscopy and given just align....probiotics, metamucil and carafate.

 

[lisadc1]

I am once a month, most up to six weeks. The longest I waited was three months and the bm were full of blood and I was a horrible mess that has led me to the Remicade. Getting insurance to approve Remicade...so I guess I still have a way to go. Those of you who go only once every six months or a year, how long did it take you to get to that point?

 

[LodgeLady]

If I continue to see my new IBD specialist ( first appt in 4 weeks) their practice requires routine office visits every 4-6 months mandatory. I think it depends on the practice. My regular GI sees me once every 3-4 months.

 

[LodgeLady]

I am once a month, most up to six weeks. The longest I waited was three months and the bm were full of blood and I was a horrible mess that has led me to the Remicade. Getting insurance to approve Remicade...so I guess I still have a way to go. Those of you who go only once every six months or a year, how long did it take you to get to that point?

I'm not in a remission yet, so my visits are scheduled as follow ups to the treatments I start or continue. Even in total remission I think the timeframe will be every 6 months.

 

[LodgeLady]

I think it varies DS has a lot of different docs and each has their version of X months to check in for routine stuff.

Asthma doc - 3 months if there is trouble but out to 6 months if stable.

Gi - does 6 week or sooner if things are rough - 3-4 months if stable.

IT makes things easier so you can actually cover what is needed during the appt other wise 12 months would take forever to cover.



good luck.

Totally understand! I get allergy shots ( bees and pollens), pulmonary doc for asthma, GI doc, OBGYN, then the dentist every 6 months. I'm always seeing some type of doctor! now going to a specialist. All these appts make it very hard to work.