I try to forget :( but was reminded today!

[Mary:)]

So I was diagnosed with Crohn's almost 3 years ago. I have always had terrible health anxiety and receiving this diagnosis just threw me over. The first year was so crazy for me trying to find out everything about the disease that I could. Then in 2010 (1 year after dx) I had to have a hysterectomy because of endometriosis. OMG after that surgery I had the worst flare and also had a fistula. My dr put me on Humira and I have been on just Humira ever since with no symptoms . So I have gone on with life trying to forget but have had several life changing events happen since then and am very depressed. I switched Drs recently and my current Dr wanted to review my records. He said its rare that patients are JUST on Humira and doing well...thinking I should be on Imuran too!!! Im pretty sure he was doubting I had Crohns. Well he called tonight and reviewed all my previous records and said I had severe Crohns and I need a colonoscopy in January. UGH I just wanted to forget about this disease and deal with other things in my life ...but now I have to remember I have a DISEASE!! Sorry just wanted vent...sometimes its so hard to deal with so much...OH and 1 more thing he did mention just because Im feeling well doesnt mean there is no disease activity..Sorry I probably sound like Im feeling sorry for myself...I know there are so many of you that are worse than me...Its just easier to talk here than in my real life because you all understand

 

[Higbonzo]

Mary,

Vent away!

Hopefully these issues will pass quickly and you can get back to forgetting about your.. what was it??? shit I forget.

Peace and love....

 

[Jennifer]

Good luck with the scope! Yeah we all have to get them done even if we're feeling great. Just gotta make sure things are actually going great on the inside, not to mention we're at a greater risk of colon cancer so gotta stay on top of that too.

Its very possible to be on just one medication at a time like Humira so if you are in fact doing well on it then that's great but if your tests show otherwise then you may want to consider adding another med in hopes to get the disease under control as quickly as possible so you can avoid surgery etc. Keep us posted!

 

[Ihurt]

I am confused about all the testing. I mean if you are feeling well, isn't that a sign that things are under control? I mean people sometimes are put into nasty flares just from having these invasive tests done and wouldn't that cause more damage anyhow??

I am still new to learning about this disease. I have not even had a diagnosis. I just had a couple tests, and still need to have more but cannot at this point. I do know that due to my other health issues my GI doc is reluctant to do the colonoscopy on me now. I told him my concerns, I mean I am still having gut issues that are awful, but he told me that a colonoscopy likely would make things way worse for me. He said it is a very invasive test to say the least. I myself believe I need to have this test in order to see what is going on, but I am stuck between a rock and hard place due to my other health issues.

Anyhow, it is hard to say. I totally feel your frustration. I mean it is like, if you feel fine then why wake up a sleeping beast. But then again, if crohns can be causing massive damage and you not feel it at all, then there is that concern too. But dont people usually feel when they are in a flare with this disease????

 

[muppet]

Regular checks even when you're feeling well, especially after many years with the disease, are a really good idea to make sure that there's not inflammation without pain or much bleeding going on, which can still be damaging. Even asymptomatic you can be having problems that will lead to bigger issues if left undiscovered.

Colonoscopies are very safe with a pretty low risk of complication.

 

[Ihurt]

I was told by my gastro that there are risks involved with having colonoscopies, he said they just do not talk about it. He said they do preforate colons at times, it happens more that one would think( they just do not talk about it). He even said you can have the best most experienced doctor doing it and it still can happen. He said it all depends on the condition of the intestines. I do know this to be true because my prior gynecologist( she retired a few years ago), well when I was still seeing her she told me that her partner had his colon preforated durning a colonoscopy. She said this test should only be done if one is having problems or after age 50 IF there is a history of colon cancer in the family. Of course I totally get why people with crohns have to have it done, I mean it is the best way to see inside. But it is scary. I had one done back 9 years ago( this was before I was having any real gut issues. At the time I was just having some constipation issues and my at that time primary care doc said I should have it done. The gastro doc who did it said it was over-kill and that I did not need to have it done. I remember her telling me that it also was a very invasive test with risks and such. There are more risks than preforation from what I was told. There is a risk of infection( c-diff), as well as other infections that could really mess one up.

I guess it all depends. I mean I think I need to have one due to all my symptoms and will likely end up having one done in the future. My gastro wont do it now due to the complications with the UTI I got just from doing an MRE of my small bowel. It has been 2 months since I had the MRE done and I am still with the UTI. Very frustrating.

Regular checks even when you're feeling well, especially after many years with the disease, are a really good idea to make sure that there's not inflammation without pain or much bleeding going on, which can still be damaging. Even asymptomatic you can be having problems that will lead to bigger issues if left undiscovered.

Colonoscopies are very safe with a pretty low risk of complication.