Upset about scope results

Diseases & Conditions Crohn's Disease
1
Just had my yearly colonoscopy yesturday and I am really upset.  I have been on Remicade but after my last infusion I have felt like it wasn't working.  All my symptoms came back.  My GI said after the scope he might up my dosage. 
 
Well...got the results and my GI said that my intestines are looking better than in the past so he doesn't want to change anything right now.  Maybe down the road he will switch me from 8 weeks to 6 weeks on the Remicade.  I am happy that I am healing but upset that I will continue to feel this way.  I have my next infusion next week and hopefully I will feel better but if I don't I don't know what to do.  Should I continue on the drug or switch to something else?  I know I should be happy that I am healing but I would also like to have my energy back and not to go the bathroom as much as I am.  I have had blood test recently and the only thing abnormal was my liver enzymes so I know nothing else is going on.
 
Sorry all...just needed to vent a little.  I am just a little confused and dissappointed.  I was really hoping for a higher dose. 

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

2
You know we tend sometime to blame feeling bad on our Crohns and sometimes its because of something else. For example, I was having more frequent D, starting taking probiotics and that fixed that up. I was having alot of Fibro pain, starting taking additional Vitamin D3 and that has helped immensley to relieve my pain. Could you possibly have something in your diet that is not agreeing with you and causing an increase in symptoms? Or maybe you are on a specific diet, and it is causing problems. Another thing, I suffer with IBS too, and it will give me Crohns like symptoms too. Figured out from posts on this forum about the symptoms of lactose intolerance, and figured out that I needed to avoid it.

Just wanted to give you some things to think about. Maybe there is some change you can make to your program that might help to end some of your symptoms. Just some things to think about.

But....it could also be Crohns in an area that the scope can't see. Just wanted you to think a little outside the box. Good luck and and I hope you do feel better soon.

Hugs
Gail*Nanners*

Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
*~* http://www.healingwell.com/donate *~*

3

Food (weirdly as it sounds) doesn't really affect my Crohn's.  I am lactose intolerant so I stay mindful of that. Otherwise, I have not found anything else that really affects me.  If I do, I stay away from that item.

What leads me to think it is my Crohns is that after my first two infusions, I was feeling great...I was on top of the world.  I went to the bathroom maybe 2-3 times a day and had tons of energy.  Acne cleared up, no nausea or pains...just an overall felling of being well.  A week before my third infusion I started feeling bad again.  This happened the other times also but after the infusion I felt better again.  This was not the case with the last infusion.  I never felt better or got my energy back.  My B12 levels are good.  Potassium levels are fine.  I take multivitamins and all the blood work is good.  The only pain I do get is in my colon.  I am pretty sure that everything is tied together and related to the CD.  I have tried a number of Probiotics and nothing seemed to help.  I honestly don't feel I can do the SCD diet and I will not try liquid suppliments. 

I am just at the point where I don't know what to do anymore and I am starting to feel a little depressed.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

4
Could you describe in more detail what you mean by " never felt better or got my energy back."? Is it pain, fatigue, joint issues, a combination? The reason I ask is your experience is exactly what happened to me at the end of my 2.5 years on Remicade. I however knew it was not my guts because I was having only one BM a day and no abdominal pain.

My rheumatologist ordered some blood tests and it was found I had developed drug induced lupus. My symptoms were fatigue and joint pain. Because those symptoms also can happen in Crohn's, sometimes GIs just pass them off as mormal components of the disease. I'm not suggesting that you have drug induced lupus but that it could be a possibility.

Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 

5

My oveall tiredness is like fatigue.  A lot of the times I just want to lie in bed and do nothing.  When I started Remicade I had soooo much energy.  Now I am back to doing nothing. 

As far as pain, I do get joint pains but I have had them for years.  I get some pain in my stomach area which I know is where my colon is and where the CD is.  I don't get bruises anywhere or muscle pains.

I think Lupus could be a good guess but I have had so many test done that I don't think that is the case here.  Also, if it was Lupus I think I would have more internal problems and nothing is coming up on any test.  My only other problem is a Fatty Liver which I think was caused by one of the drugs I took...and my weight issues.

I might, if I don't get better, look into Lupus but for now I am not leaning towards it.  Thanks for thinking of it though.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

6
The only thing I can add is that I always have some symptoms. Depending on the day, food, stress, whatever that will affect the severity. On tests however I have only minor ulceration at the site of my anastamosis and my blood work is usually pretty good. I also have fatty liver and my liver levels are off on blood work. But my point is that while the doctors don't "see" much disease activity, I "feel" disease activity. Some days I feel pretty good, others I have aches, nausea, pain, what have you. All of these things are a bit subjective. Just because the doctors see something they think shouldn't cause much pain, or many symptoms, doesn't mean that we don't feel pain.

If you are feeling that your disease is not under control, perhaps it isn't. Minor ulceration might cause one person no symptoms and no pain, while it might cause another person lots of pain and vomiting all day.

Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

7
My scopes didn't look that bad, but then when they did a CT enterography, they found a perforation, abscesses and a fistula. You might want to consider having other tests done if you think something is off, because a scope doesn't always paint the full picture. If you feel like you're getting worse, you probably are.
8
A little off topic...but it seems like a lot of us have fatty livers....do you think this has some corrolation with CD? I am supposed to have a liver biopsy when I'm off blood thinners to rule out anything else, but that's what my GI is attributing my high liver enzymes to. No one else in my family has a fatty liver, even though we're all about the same size (all of us could lose a little weight). Also, I started having increased nausea and diarrhea when my liver enzymes went really high....makes me wonder???

JJ - The only other thing you might talk to your dr about is depression. Though you might not have sadness, crying, etc, having CD can depress you, and some GI's find it helpful to have their patients on antidepressants because it makes dealing with this disease a bit easier. Also, some of the antidepressants can give you more energy than you would have without them. My GI put me on Effexor (it's actually an anxiety med) and it just calms me a bit so I don't stress over symptoms as much. I don't know how much it actually lessens my stress induced symptoms, but I was willing to try it. I find that being on it I tend to not over react to things like I did before.

Becky

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D, Coumadin

9
Bar77..I am not against antidepressants but I don't think I am at that point yet. Yes this is depressing me but I still feel like I am in good spirits. I have been worse before and maybe back then I should have been on some. I will always keep that option there. Also, because I have such bad reactions to many drugs, the less I have to take...the better.

Valerie3..thanks for that info...but I am having more secondary symptoms than actual symptoms. I don't feel like there is any actual damage going on within the diseased intestines. I also feel that my doctor is really good and if he felt there was something else, he would check....and I don't usually think highly of doctors. Definitely though if I get worse, I will ask for more tests.

I do thank everyone for responding. I think I just have to take a wait and see approach. I will go for my next infusion and see what happens from there.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

10
JavaJay,
Do you want me to wack your GI with my big wooden hairbrush? I am serious considering doing it to mine so he might have some inkling about the PAIN!
I wonder if you could just take an ANA test just to see if it is contributing to your problem?
Take it easy,
Navy

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

11

MMMNAVY,

On my last bloodwork, it did show there was inflammation going on...both the doc and I thought is was a sign that the CD was active.  Now I am thinking it could be something else..but how am I to know?

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

12
I was reading over this post. You are upset that the scope result is not coinciding with the way you feel, and you feel that the Remicade is not really working for you. You feel that you might have some disease activity going on, but aren't sure? Then in your last post, you say that your blood work shows there is some inflammation. I think you have hit on all of your answers.

Scopes can not look at the entire digestive track. CD affects the entire digestive track and will progress to attack whatever part it wants to, no matter where it has been in the past. So even if your disease has always been in your colon, it could be anywhere now. You have symptoms, you have inflammation markers, your medication is no longer working according to the way you feel, yet you are letting your doctor tell you that "its all in your head" basically. So if you are still not getting results after your next infusion, you might need to add another medication into your regimen, ask for more testing, or switch medication altogether. Sorry, getting off my soap box now.

Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

13

Zanne...you can stay on your soapbox.  It is ok :)  Actualy, he says the meds are working and that I am healing.  That is why I am upset.  I am getting results but still don't feel better.  The other problem is that there is no other meds for me to go on except Humira and Cimzia.  I have been on just about every type of med out there with bad results on all of them.  Also, overall, I have a mild case of CD.  I am only on Remicade because nothing else works.  My doc was hesitant on putting me on it..I had to push for it.

Overall..and I saw the pics from my scope..I know my Crohn's is active.  It does look better than a year ago and I am happy for that.  I am really happy that I have never had any major complications or needed surgery.  I just hate that I keep getting the real annoying symptoms with no way to get rid of them.  I hate having joint pains, oily skin on my face, etc etc.  I know it comes with the territory but I just am tired of it. 

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily

14
JavaJay,
Have you had a recent pill cam? My disease is actually the worst in my small intestine and that was not found until they did a pill cam and then did a Long (18 foot) EGD.
Navy

Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

15
I have never had one. Might have to ask for one now.

36 yr old Male with Crohn's Disease since '88 - No Surgery yet
 
Been on almost every type of drug with bad results
Remicade since Nov 2009
Prilosec 20.6mg - 2x a day
Multivitamin daily