Just need to vent :(

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Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/22/2009 10:11 PM (GMT -7)   
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 :)
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/23/2009 8:23 AM (GMT -7)   
I see that you have never had surgery. While they say to wait as long as possible for surgery, my question to you is, how is your quality of life? If no meds or diets are working, wouldn't it be better to have surgery and start feeling better and be able to enjoy your life some?

If they do surgery, is the only surgical option a colostomy for you? No chances of them doing a resection?

For your sake, I truly hope and pray that it is Celiac's! But if its not, I am wondering if surgery might be the best option for you.

Big Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 5/23/2009 7:05 PM (GMT -7)   
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!!
54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/23/2009 9:52 PM (GMT -7)   

Blossom .1st thing, my doctor said that it was 3 months to see if it would work. I still have 2 shots left so a months worth. Since being on humira I have been feeling worse and gaining weight none the less. I have had a lot of side effects from it and I dont like how I feel on it. Fatigue mainly. My doctor wants to do another colonoscopy and an upper endoscopy himself to see if my previous doctors have missed anything. I requested the celiac test to be sure. I have also been told by my doc that the blood test isnt always right. I can be celiac and still have the blood test come back negative. Which in my case the blood draw came back negative. There have been many people on this site as well that have said this.

Nanners . I would love to wait as long as possible without having surgery, but I am on one of the last meds for crohns and seem to have no other choice. So If I choose surgery I have the options for a colectomy, ileostomy or colostomy. I would rather start out with the colostomy bag because then they can put me back together rather than loosing part of myself and diarhea for life :(. Surgery also depends on what the results are from my colonscopy. And just thinking about this now I am kind of scared to get the colonscopy and upper endoscopy because they are putting me under and I would hate to wake up with something that wasnt my choice. If you know what I mean. I dont particularly trust doctors in any degree. One reason I hesitate on surgery is that in reality it only last about 10 months before crohns start appearing again. Which in turns means more surgeries. Its a never ending vicious cycle. And yes I would like a better quality of life, but Im not sure that surgery is that right path for me yet.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)


spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 5/23/2009 10:09 PM (GMT -7)   
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!
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/24/2009 7:13 AM (GMT -7)   
Chronicallyill the disease does not come back in 10 mos after surgery. I have had 2 resections myself the first in 2002 and the second in 2005. I have been in remission since 2005 and expect to stay that way for a long time. I am careful with my diet and also faithfully taken maintainence medication. You may have one surgery and never have to have another.
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Blossom
Regular Member


Date Joined Mar 2008
Total Posts : 176
   Posted 5/24/2009 10:51 AM (GMT -7)   

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!! :)

 

 

 


54 year old female;
 
Have had Crohn's of terminal ileum for over 9 yrs, but finally accepted diagnosis when it was confirmed Feb. 2008.
 
Allergic/hypersensitivity to Pentasa, Entocort, and 6-MP.  Recently started Humira in December.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/24/2009 11:35 AM (GMT -7)   
I know the doctor says 3 months, but it really did take about 6 to see if it was helping me.
Just something to think about...I wouldn't give up on it just yet.
And I also know there are plenty of women that have had healthy babies on humira.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Chronicallyill
Regular Member


Date Joined Apr 2008
Total Posts : 195
   Posted 5/26/2009 12:19 PM (GMT -7)   
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.
Age:22/6"1'/146lb - Diagnosed: 2001 @ age 15 now 22
First time mom as of March 8th 2008
Past drugs: Pentasa, Flagyl, Budesonide, Prednisone, tons of Antibiotics, Didrocal, 6mp
Past herbal remedies and vitamins:Probiotics, Omega 3&6, Prenatal vitamins, B12, Calcium, iron, vit C, vit D, vit E, Selenium, mineral drops
Current drugs: Valtrex, Methotrexate as of October 2008
Problems:Fissure and Tags on rectum, blood clots, Chronic UTI's, Osteopenia, Ulcers in my decending Colon
No surgeries....yet. Gone through 5 G.I.'s found a 6th G.I. crossing my fingers
Procedures: 4 colonoscopies, 1 upper endoscopy, 2 barium swallows, 1 biopsy of the fissure and tag (chron's affected)

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