no maintenance meds required

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keepinghope
Regular Member


Date Joined Jul 2008
Total Posts : 53
   Posted 5/14/2009 2:28 PM (GMT -7)   
My wife had a resection in February. She claims the GC says she does not require meds for maintenance. Has anyone else been told this. She seems to be going back into a depressed low self esteem state
confused  

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/14/2009 4:29 PM (GMT -7)   
It's hard for me to believe any medical doctor would tell a Crohn's patient NOT to be on a maintenance drug...but I guess there are some doctors (even GI's) who don't see a reason for them.  Maybe there's a reason not to take them after a resecion surgery which I'm not aware of.
 
But Crohn's Disease is not (yet) curable; however it CAN be manageable in many cases and the only way to manage the inflammation of Crohn's Disease is through maintenance drugs and MABYE combined with anti-inflammatory foods.  Then, of course, often times stronger drugs are needed.
 
No matter what people have been through with this disease, there's no DOUBT it affects us mentally and often puts us into a depressive state of mind.  Maintenance drugs won't necessary directly help that but if the maintenance drugs help keep inflammation down and make your wife feel better physically, maybe she'll feel better emotionally, with time.
 
 
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/14/2009 5:39 PM (GMT -7)   
I just had a resection and both my surgeon and GI said that I need to be on meds to help keep Crohns away. I'm going to stick with what the doc says as I don't want have surgery again for a while.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 5/14/2009 6:32 PM (GMT -7)   
After each of my resections my docs have taken me off all or most of my meds.  I was ok for several months each time, but eventually restarted some of the meds as the CD started to come back.  I was never depressed after the surgery.  In fact for me I always felt my best for the first several months after a surgery.  I felt like I had more energy and just felt better overall. My resections are always in the terminal illium.  Where was hers?  Maybe different locations have different affects????

Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.


keepinghope
Regular Member


Date Joined Jul 2008
Total Posts : 53
   Posted 5/15/2009 2:56 AM (GMT -7)   

Her resection was 6in. of small and 6in. large she had severe infection after putting her in the er for 24hours.

She does not believe she needs professional help even though her doctors know she does, but they can not force it on her She was on Pentasa which did nothing for her for 4 years. The GI originally told her he was going to put her on Humira

 


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 5/15/2009 3:21 AM (GMT -7)   
It is very difficult to come to the realization that you are really sick and this disease isn't going to go away even with surgery. I was depressed after surgery, I felt very vulnarable, old and useless. Try to persuade her to go to just one appointment and she will see how much better she feels and hopefully will want to go backt. Wishing you the best of luck.
Dx'd with Crohns 1984 and polycystic kidney diease in 1996
I was in remission for 16 years, Bowel Resection surgery 2006, Now on Asacol, folic acid, and Enalapril, Have been flaring on and off since August.
 
I love my life and everyday I pray that my body cooporates and allows me to do what I have planned.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/15/2009 6:34 AM (GMT -7)   
I am a firm believer in maintainence meds. You need to continue to keep inflammation levels down to avoid further damage and flares. JMHO
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"*

jhicks
Regular Member


Date Joined May 2009
Total Posts : 177
   Posted 5/15/2009 7:35 AM (GMT -7)   
I have been on maintenance meds (Pentasa) for 4 years, which I started immediately after my resection in 2005. I felt so good that I foolishly started weaning myself down to just one dose a day this last year. Many days I was convinced that I didn't have the disease. I am headed into a flare now, and sincerely regret that I started weaning off the meds on my own. I will NOT make that mistake ever again.

Best of luck to you guys!

Joyce

Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/15/2009 9:40 AM (GMT -7)   
I did want jhicks did, too. Started feeling better after being on maintenance meds (Colazal) for a few years so I started to wean myself off the drug. Within the year, I got sick and then sicker and then eventually went into a really bad flare. I can't help but wonder if I'd just stayed on the FULL dosage of meds instead of weaning down to 1/3 of them during that time if I'd have ever gone into that awful flare. Guess I'll never know!
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


spiceman
Regular Member


Date Joined Aug 2008
Total Posts : 51
   Posted 5/15/2009 9:53 AM (GMT -7)   
Both my surgeon and my GI told me to stop all medication after my resection in Feb 2009. He wants to do a colonoscopy 6 months after the operation to see how the disease is progressing if at all. My Gastro team don't believe in taking medication if the inflammation site was removed at the time of surgery. The GI said he will discuss medication again after the check colonoscopy. 

5mg Pred tappering over a 5 week period.
 
Resection 28th Jan 2008


fimk
Regular Member


Date Joined Apr 2009
Total Posts : 51
   Posted 5/15/2009 9:59 AM (GMT -7)   
You say she is depressed. I believe that is normal (for a while). This is a life changing disease. She has probably come to that realization. Before CD we go about our business without too many worries. After CD we worry about can I do this or can I do that. Will I ever see my grandchildren etc. It affects our thought process. Now becomes more important. Things that we would've normally let happen without out a thought suddenly become something that we worry about. After first being diagnosed and my first surgery I had time to go through the phases of acceptance and I was so weak by the time of my first surgery that it was a life saving surgery. Maybe she is just now come to the realization that she is really that sick and that life will never be the same. If that is the case then anyone should/would be depressed. For me it was: why me, poor me, anger, then gradual acceptance. It is like the phases of greiving, she will need to go through it till there is acceptance. Best of luck!
Over 30 years experience! Dx 1976, surgery every seven years, the only effective long term drug has been very low doses of prednisone. Refuse to take anymore immune suppressants.


Wild_Swan
Regular Member


Date Joined Apr 2007
Total Posts : 89
   Posted 5/15/2009 2:39 PM (GMT -7)   
i was told the same - i didn't need maintenance meds - i get where your wife may be coming from - from my own perspective - i can look back now i say this! It was freaking me out - i didn't realise how much it was - i think psychologically crohn's patients need a maintenance med - even if its just for a placebo effect. my own family doctor on the other hand also has crohn's and is on no maintenance med - but as he says hes an exception rather than a general rule. its only natural for your wife to be affected by this - she may not even know it - however i really think that she should be on a maintenance medication - if only to prevent inflammation which can cause scarring and have its own problems - i would be sceptical of a doctor saying that - if i was your wife & i was i'd get a second opinion if - IF she feels crohn's wise that her gut wont be able to handle having a maintenance medication. I got a second opinion who - said straight she didn't understand why i wasn't on a maintenance medication & she spent like a half hour shaking her head in dismay:) now it may be your wife's crohns is on the mild side in terms of what the dr sees on a scope (not to say your wifes symptoms are mild they may not be) - and he/she is thinking oh that womans crohns isnt too bad so it may do ok without maintentance - however you said you wife had a resection - pentasa is proven to reduce the likelyhoood of recurrance after resections - she may not feel it but it may help - its highly recommended to take it in fact after surgery!! How are her b12 levels - they can leave you feeling not yourself? look into her nutrition state - maybe theres something lacking - a blood test can be done to check b12 & iron - common culprits in the drag down your mood area. Are you & they sure she's depressed? B/C my doctors tried to convince me I was - its a really long story but the gist of it is I wasn't standing up to them & insisting I wasn't well enough - i put up with a lot of personal comments which were well quite personal and not nice - this did eat into my confidence - but something hit me that i had to learn how to shout - is your wife on the quiet side when dealing with the drs? B/C it does and will not get you anywhere - i've only recently realised this - and reclaimed confidence in the fact if i don't feel well i dont feel well & the source of it is in my abdomen & not my head - it can be quite damaging psychologically for patients to be forced into a psychological route when there may be a physical cause as there was in my case. I know i'm not the same as your wife but if there is the possbility that there is you should have a chat with her - tip if someone feels cornered they will clam up - so approach tactfully - and see how the dr/patient relationship is going in terms of teamwork and whether she feels listened to & if not why not. Gosh i went on for quite a bit here - you struck a nerve :) Hopefully something is of use to you and your wife. It must be hard for you too - she's very lucky to have you to support her - so give yourself a pat on the back as well!!
 
 


keepinghope
Regular Member


Date Joined Jul 2008
Total Posts : 53
   Posted 5/18/2009 1:59 PM (GMT -7)   

I have supported her from day one but she has admitted emotional problems but she has blamed me for they since she was diagnosed to the point now she has filed for a divorce saying Im causing her to be sick. I took vacation to mind for her after resection, I get told I did'nt have to she can look after herself.

 


nawlinscate
Veteran Member


Date Joined Jan 2007
Total Posts : 656
   Posted 5/18/2009 4:30 PM (GMT -7)   
After my ileal resection in 1999, my gastrointestinal doctor (whom I'd only acquired from the yellow pages after being diagnosed, on an emergency basis) told me I didn't have to take any meds whatsoever--and I could eat a regular diet. I faxed him and asked him to please put me on Pentasa. He basically told me that if I wanted to try it, there wasn't any harm in it. I was in bad shape after 4 years on Pentasa--and didn't improve until a new doctor put me on 6MP.

I'm stunned when doctors tell you that you don't need meds and you can go ahead and eat whatever you want to. Idiotic!

keepinghope
Regular Member


Date Joined Jul 2008
Total Posts : 53
   Posted 5/18/2009 5:11 PM (GMT -7)   

She was on Pentasa for 4 years with no response, but being honest I do not believe she is truly telling her gi how she feels

The surgeon told her she could have a regular diet as well

 



LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/18/2009 11:33 PM (GMT -7)   
I'd be staying on maintenance medication even if the doctor says otherwise. I think that in this case they're horribly wrong.
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."


eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 5/19/2009 6:48 AM (GMT -7)   
y do doctors sem confused about meds for crohns? i was under the impression it was a genetic disorder where something was wrong with u immune system? y wld it suddenly be fixed? i was quite upset when i was dx i didnt want to be sick forever its quite alot to take in,i felt that no one would understand adn no one really did ,other than ppl with crohns,had to get use to my scars aswel after my surgery im okish now
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa

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