Just need to vent :(

Soooo. . . . my new doctor has requested another colonoscopy and upper endoscopy :( next Friday the 29th. I just had one done in October and it didnt go so well. I ended up in the hospital for 3 days with a perferated bowel from the air they push up there. I just recently started seeing him. He started me on Humira on April 3 and I havent done well on it. We are proceeding with Humira for the next month and will wait for the bone density scan, hip xray, and the colonscopy and then I will have an appointment with him to see the results. He wanted to do these procedures again for himself to make sure that nothing has been missed since the passed 8 yrs none of the chrons drugs have worked for me. He wants to test me for celiac disease. After all of these yrs and asking them to test me for it they still havent. :(. So after all of this my doc wants me to try Remicade. If it doesnt work then he suggested surgery. Im so scared of surgery.

What really bothers me about this disease and everything that has happened is that I want to have another baby and they are telling me no. They want me to be in remission when I get pregnant. To me that means I will never ever be able to have another baby. In the past 8 yrs I havent even been close to remission. I have been sick since I was 4 and wasnt diagnosed until I was 15.  I'm ready to give up on all doctors again. I went through a 4 yr stint where I didnt go see a single doctor. I did better then than I am doing at the moment.

If I decide surgery he gave me the option for a colectomy which my regular doctor says its possible to get pregnant with the bag. She said she just delivered for a lady who had a bag while she was pregnant and that it went well.

I almost want the colonoscopy to come back with celiac because I can go drug free and put more effort into my diet knowing thats all it is. well anyways my brain is so foggy that this post took me over a half hour to right. Lol.

Thanks for listening :)

Hi Chronicallyill,

Just a few thought/questions.  If I understand you correctly, you've only been on Humira for about 1 1/2 months.  From my resources, giving Humira 6 months is a reasonable timeframe to determine whether or not it's working.  If there's no improvement at 6 months, then it's probably not going to help.  Seems like only giving it a couple months is rushing it.

I don't understand why your GI wants to do another colonoscopy so soon since you just had one in October!?  Also, celiac disease can be tested with a blood draw.  If the blood test comes out negative, it is pretty certain that you  do NOT have celiac disease.  However, if the blood test comes out POSITIVE, then the "gold standard" to confirm it is to do a biopsy via an endoscopy.

Good luck!!

It took a couple of months for Humira to work for me. In fact, I was even hospitalized for a few days about one month into it. So Humira could still come through for you.

I just had a colonoscopy a couple weeks ago, and the only problem found was a strictured ileocal valve (I imagine I'll probably have to get it cut out eventually). I'm also eating SCD, so either the Humira, SCD, or the combination are making my colon much happier than it used to be.

Hope things look up for you soon!

Chronicallyill,

It's not that I'm against surgery (or colonoscopies), it's just that I hope you get as much information as you can first, so that you are able to make informed decisions.  One doctor's opinion is not necessarily another's.  Maybe get a second and third opinion to help you make the "best" choice for yourself.  Also, the members on this board have EXCELLENT input when it comes to their personal experiences regarding medications, surgery, etc. 

I commented to you about the Humira and giving it 6 months, because I did some research and also made some phone calls---not only to the manufacturer of Humira, but also to the pharmacy that mails my prescription to me.  I have heard many times that giving it 6 months was reasonable.  My personal experience was that Humira did not seem to be helping me either (I ended up in the ER with a partial bowel obstruction 2 months after starting the Humira).  My GI indicated that I hadn't been on Humira long enough to see whether or not it would help me.  Fast forward 3 more months, and I seemed to be getting worse.  Recent colonoscopy shows FURTHER narrowing of my IC valve.  I'm still staying on the Humira for now until I get biopsy results.  This is the LAST medication that I know of that I can try.  Looks like surgery will be next step.

I'm telling you all this because it also sounds like Humira is your "last hope" for meds, as it sounds like the others didn't work for you.  I would just give it more time (unless you're in a full blown bowel obstruction, of course) so that you'll know in your own mind that you've tried everything first.

Of course, this is only my opinion.  You are your own person and have to decided for yourself what's best for you.  You reached out to us, so we're just giving you our experiences and opinions.

Again, GOOD LUCK, and I wish you the best!! :)

Thanks for all of your knowledge. Oh and Nanners I meant to type 10 yrs lol not 10 months. Thats the estimated time that my doctor gave me. The experience that he has had with his patients. Hopefully my upper endoscopy and colonscopy go well and they figure something out and can telling me something finally.

Blossom I have been to so many doctors so far because I have been unsastisfied with their conclusions. At 18 they wanted to do surgery and I flat out said no. i figured I didnt need it. i had alot more options left in view for me to try. Actually this is doctor number 6 because I refused to go see the other ones i left in the dust. Lol.