How often do you get bloodwork?

[ccerulean]

How often does your doctor do bloodwork?

Mine took blood at my scope and diagnosis back in February. Since then I've seen him twice, been on and now off Entocort, but he hasn't taken bloodwork.

At my follow-up to diagnosis, I asked if I was at increased risk for vitamin deficiencies, and should I get bloodwork done. He said no, you only have that if you're anemic which I wasn't. I went to my GP and got bloodwork done there which showed severe b12 deficiency. This makes me distrust my GI guy.

At my last appointment he suggested Humira for my symptom of lingering pain. Should there have been some inflammation levels checked, or am I being unrealistic?

 

[Clash]

When my son is on meds, the med dictates when blood work is done. For instance, methotrexate every six weeks. But, regardless of med blood work would be done each visit or at the minimum every three months.

If you feel uncomfortable with the GIs lab schedule I would bring this up. Explain that he denied lab work and the GP went on to find severe vitamin deficiency. If you are uncomfortable altogether with this GIs methods then a change in docs may be in order.

 

[SarahD]

Does the dr think your lingering pain is due to inflammation? Blood tests can be helpful, they can tell you whether you have inflammation in your body among other things. They can also be helpful for monitoring your Crohn's, suggesting whether you're improving or worsening, etc.

You should definitely have some blood tests prior to starting Humira. Usually they like baseline levels of everything, in addition to checking for TB antibodies.

 

[ccerulean]

I have no idea what my doctor thinks. Every time I go there, he talks about Humira and Remicade the whole time. Then I have to ask him a million questions that I have about how I'm feeling. This is all extremely new to me and I get the feeling I'm just being lumped in with all the other Crohn's patients. I don't know if this is typical of GI doctors or just mine.

 

[Clash]

What meds are you on at this time? If you are still experiencing pain he may think that you need to move up to a stronger med but regular blood work is fairly standard with CD when the patient is still experiencing CD symptoms so that needs to be addressed.

You say he may be lumping you in with all other CD patients, it could be that he follows the top down therapy model in treatment. This would be starting the strongest drugs in hopes of staving off or limiting future surgeries. Some GIs follow the bottom up therapy model starting at the bottom of the med pyramid and moving up as needed or as a drug fails or disease progresses. Find out what his strategy is and if you aren't comfortable then find another GI.

Also, communication is key in the relationship between you and your doc so if you feel as if this isn't a good communication fit then I would urge to seek out a GI you feel more comfortable with.

 

[krika]

I am on Imuran, at first I had to go in every 2 weeks for bloodworks, after a while I was told to come in every 4 weeks, which I still do, to get my blood checked. Its to monitor all and everything. I also has to hand in stool samples frequently, they like to keep all under controll, which I like, makes me feel a lot safer.
When it comes to vitamins, I had to ask for it myself. They didnt see it as a necessity. I asked and said I want you to check my vitamins, my GI did full vitamin and kalsium tests. It came back with vitamin D deficiency and I get meds for that aswell.

My GI also had me do osteoperosis tests and scan to be certain he has complete overview. This was not something I asked for, just something he always do with his patients.

If you have asked and dont get heard and taken seriously, or feel like you dont, its serious enough. It is important to feel safe in the hands of your GI, when it is hard enough to relate and deal with this illness as it is.

All the best

 

[ccerulean]

Right now I'm only on Pentasa. I finished tapering off Entocort right before my last dr appt and was actually feeling great. My only symptom is this pain in my lower right side. No D or C. I've had it throughout the whole treatment, it waxes and wanes, but for the month of June it was almost gone all the time. I thought the dr would be pleased to hear this but instead he said, "I'm glad you're feeling better but the pain will come back. I've dealt with other CD patients who have felt better for a while but then got worse." And then offered me Humira/Remicade again. This really burst my bubble and the pain returned shortly after. I don't know how much of this is psychosomatic, I'm seeing a therapist next week for stress issues.

I struggle with wondering if I'm expecting too much of my doctor? People in my city seem to like him, but they're probably just dealing with standard preventative scopes, not CD.

I just wish he would have taken some sort of inflammation marker when I saw him in June and was feeling so well. Then there would be some sort of concrete data instead of him just doing the crystal ball test.

 

[krika]

When it comes to him telling you the pain will return, I wish acctually someone had told me this. I felt better for 1 month. The fatigue and joint pain was going away and I got more energy. I managed to go out for coffee and stuff everyday and for me that is luxury. I was looking forward, taking one step at a time and thinking if this is continuing I can go back to work, but then it came back. I cant explain how dissapointed I was and are.

 

[hawkeye]

Every 2 months when I was on Imuran.

 

[Karen in Phoenix]

My doctor sounds just like yours! He isn't regularly checking vitamin and mineral levels and just wants me to come every three months. I am in the process of finding a new doctor. If you don't trust him or her, it's hard to feel confident about the level of care.

 

[LewisS]

Recently I've been going every 2 weeks. I'm undiagnosed and my GP thinks it would be good to have a set of blood work results, rather than just one before I go see a consultant.

 

[alex_chris]

I am on aza. For many years I was doing the 8 weeks routine, a year ago I started the 4-5 weeks routine. Not sure if that really is important, but I have to get a prescription every month anyway, so I just get a new appointment for bloodwork done each time plus get the prescription for aza.

 

[FrozenGirl]

I'm on Imuran so every month. Plus whenever there is a changes, eg. White blood cell count drops mean blood tests weekly until it improves.

 

[hbrekkaas]

I have no idea what my doctor thinks. Every time I go there, he talks about Humira and Remicade the whole time. Then I have to ask him a million questions that I have about how I'm feeling. This is all extremely new to me and I get the feeling I'm just being lumped in with all the other Crohn's patients. I don't know if this is typical of GI doctors or just mine.

I get bloodwork monthly, but only because I'm on Imuran. Before then it was every 3 months or so to check on everything.

 

[kelly81]

Every 2 weeks at the minute because I'm on Azathioprine. Moving to 3 months in a few weeks.

 

[Orchid]

I'm in remission and I damn well want to stay there, so I do monthly blood work and I'm planning on yearly colonoscopies.