Surgery/Maintenance Medications?

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sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/20/2009 6:12 PM (GMT -7)   
 
 

Just your thoughts on my situation.
 
I've had Crohns Disease for almost 15 years.  It was diagnosed in my terminal ileum affecting about 20cm worth.
 
Since then I have been on all the treatment plans, became steroid dependent and then offered Remicade when in came out in 1999.  I've only been on Remicade and Methotrexate since then with occasions of Entocort to treat minor flare ups here and there.
 
I've done really well on it only suffering a few flares. Later I found out I had some strictures but that was all confined to the same area that was already affected.
 
My flares became increased and then we also found out that I may be facing a diagnosis of MS.
 
It was decided for me to have surgery and remove the diseased part out and have a resection since the small bowel follow through test showed that it was getting more diseased in that same confined area.  There are no other areas affected.  Everything looks clean!  My surgeon was very surprised that I had gotten this far with only one surgery and look really good inside.
 
I will continue to get follow up MRI's for the MS every 3 months.  If it gets aggressive the treatment options are limited due to whatever helps MS aggravates Crohns.  Tysabri right now is the only drug available.
 
My question now is since the diseased part of my small bowel has been removed and everything else is clear, should I be put on any maintenance medications or should I wait until the Crohns starts to flare up first which I know eventually it will?
 
That is the question that my GI has been researching and I will meet with him in 2 weeks to discuss this.
 
Any thoughts?  Your input would be greatly appreciated. blush

~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/20/2009 6:44 PM (GMT -7)   
I am really sorry. You're taking this disease thing way too far.

Did they say if the Crohn's meds would adversely effect the MS?
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/20/2009 8:27 PM (GMT -7)   

Az Johnny,

I don't understand what you mean when you say that I am taking this "disease thing" too far?

Tysabri is the only med that would treat both Crohns & MS.


dms40
Regular Member


Date Joined Oct 2009
Total Posts : 37
   Posted 11/20/2009 8:42 PM (GMT -7)   
What about LDN as a maintenance medication, it also treats both MS and Crohn's.
 

sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/20/2009 9:16 PM (GMT -7)   

 

I had mentioned LDN to my GI.  He said he just got back from a conference in Chicago and he said no one was talking about that there and he had never heard of it.

Anyways besides the MS fact, which I haven't been diagnosed with yet, (my MRI came back with lesions very consistent with MS) so lets forget about that for second.

If all the diseased part of my intestine has been removed and I am clear (for now), should I be on any maintenance therapy or wait until crohns shows up somewhere else in the future?  That was  my original question.

Thanks much.



~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia

Post Edited (sukay) : 11/23/2009 9:01:36 AM (GMT-7)


spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 11/20/2009 9:31 PM (GMT -7)   
That's funny, my GI doc said she just got back from a conference and nobody would admit to prescribing LDN. Same conference I wonder?

I think you should do some form of maintenance, whether it's through drugs, diets, supplements, whatever. I just had surgery in September to take out a small area of scarring at the ileocecal valve. I'm taking Pentasa as a maintenance drug, eating SCD, and take some anti-inflammatory supplements like fish oil. I want to do everything I can to keep this disease at bay!
34 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: Pentasa, Effexor XR, Zyrtec
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


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/20/2009 9:49 PM (GMT -7)   
Sukay:

Sorry about the possible MS. Is it possible that remicade is causing it, and that once you get off the remicade, the MS is go away?

I do know that if you do have MS, you should not take anti-TNF agents like Remicade, Humira and Cimzia, because they can aggravate MS. I think the other meds are fine - MTX, Imuran, and 6-mp - In fact, I read that these drugs could possibly help MS as well. Also, 5-ASA medications are fine as well - like Asacol, Lialda, Pentasa

And steroids help both MS and crohn's. So, really from my understanding the only meds you cannot take are the anti-TNF biologics. Also, Tysabri treats both Crohn's and MS as you mentioned.

I hope your MS is remicade associated and will go away with discontinuation of remicade. ((((Hugs))))

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/20/2009 10:47 PM (GMT -7)   

Yes PV,

In fact that started everything.  Once they were suspicious about the MS they immediately pulled me off the Remicade which immediately through me in a Crohns flare and eventually led to my surgery.

So now I am off all medications.  I had surgery last Monday. I am following up with my GI on the Monday after Thanksgiving to find out if he will be putting any restrictions on my diet since the rest of my intestines are clear. Prior to surgery  he felt that there would be no restrictions for now until something shows  up in the future.  But now he researching the maintenance medication issue. 

I just wanted to be prepared too with some questions and ideas.  I kind of feel that if there is nothing there to treat, what is the point with maintenance meds until something shows up. 

Thanks so much for the responses. blush


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 11/20/2009 10:57 PM (GMT -7)   
Sukay:

Do you have other relatives with MS? Do you have other risk factors for MS other than gender (twice as many women as men get MS), and having IBD? Are you below age 40?

I know you can get MS when you don't have any of the listed risk factors, and if you have it you have it, and no lack of risk factors of low odds is going to make a difference. I'm sorry you're going through this.

I worry about my husband being on remicade, because his aunt (mother's sister) died from MS - I know they say it you have a parent or sibling, your chance for MS is 1-3%, I wonder how having an aunt who died from MS, and being on remicade translates for him. It's something I constantly worry about . . . I keep wondering if he should be on anti-tnf agents at all, but his GI doesn't think it is too risky . . . I wonder what another GI would say about that . . .

What symptoms did you start exhibiting? And how many lesions showed up in your MRI? I sure hope they go away ((Hugs))

I would stay on crohn's medications - just to keep things at bay. Better safe than sorry I guess . . . it looks like a lot of crohn's medications (just not the anti-tnf agents) should hopefully do the trick.

I hope you get good news after being off the remicade for a while. I can only imagine how agonizing going through a possible diagnosis like this can be. You are being such a brave sport . . . I admire your spirit. Take good care of yourself, and keep us posted.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/20/2009 11:51 PM (GMT -7)   
Sorry Sukay, it was a feeble attempt at humor. I should learn I'm not good at that.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 11/21/2009 5:00 AM (GMT -7)   
Hi Sukay, after my resection of small bowel in jan along with other things i had to demand to go on a maintanance drug. the doc who saw me said basically wait for a flare up and we will zap it with steriods i have never been on steroids and don't really want to start if it can be maintained with meds i take pentasa now. Bev x smilewinkgrin
Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal 1st week of Jan. Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid,  citalopram 60mg (for Anxiety.)


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/21/2009 6:38 AM (GMT -7)   
 
Hi Bev, - I hear ya!  Who doesn't hate steroids? skull   Were you clear everywhere else?
 
Hello AzJohnny, - See I didn't even know it was humor.  I'm really s..l..o..w some times!  wink
 
PV, - Yes, my brother died from complications due to MS in his late 40's and I also have a niece who has MS.  Three lesions showed on my MRI.  I started to notice numbness/tingling in different parts of my body along with stiffness/weakness in my arms & legs and some days these limbs were very heavy to lift.  Once I passed out and hit my head really hard and landed in ER.  My neurologist said he sees lots of cases of MS from Remicade.  My GI said he has never heard of anyone getting MS from Remicade but has heard that if you have MS in your family it can excellerate MS coming to the surface, but this is rare.  I have always been one of those "1 in a million cases".
Your husband is very lucky to have you.  You are learning and always keeping an eye out on things for him so that you can help him make very well informed decisions. I wish you both wellness.  Thank you for taking the time to share your thoughts with me.
 
dms40 & Spookyhurst, - Isn't that something about LDN?



~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia

Post Edited (sukay) : 11/21/2009 1:28:30 PM (GMT-7)


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 11/21/2009 8:03 AM (GMT -7)   
Sukay,
 
It sounds like your Crohn's disease is localized quite neatly to the ileum and that your main issue is a tendency to stricture there. Do you get warning (for instance, discomfort after eating) when you're starting to build up a new stricture? If so, I think I would wait to treat until that occurs, but start immediately on noticing the most minor symptoms so that you knock out the inflammation before it can progress to causing fixed, fibrous strictures. What I would use to treat that incipient flare would either be a course of steroids, or, and this would be my top suggestion, a few weeks of total enteral nutrition (special liquid formula diet, also referred to as elemental, semi-elemental, or polymeric diets). The advantages of enteral nutrition are a strong anti-inflammatory effect, proven in randomized, controlled clinical studies (as effective as steroids in many people); avoiding steroid side effects; and, in your case, avoiding the dangers of immunosuppression. This is a particularly effective treatment when Crohn's is limited to the small intestine. Unlike LDN, which couple of people have mentioned, enteral nutrition is an established treatment for Crohn's, even if not common these days in the US, and your doctor will probably have heard of it. It can also be used as a maintenance treatment (around 750 calories per day of the formula as a supplement to your regular diet), but given that you are currently without symptoms, I would be inclined to wait for their appearance to give enteral nutrition a try. Then if it reverses an incipient flare, you could think then if you wanted to continue it as a supplement for maintenance. I hope this is helpful.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/21/2009 8:19 AM (GMT -7)   
I disagree with Writer. I am a firm believer in maintainence meds especially AFTER a resection. I didn't go on maintainence meds after my first remission, and ended up with another only 3 years later. I only take Asacol and I am in remission now. My stubborness with not wanting to take meds caused me alot of hell and I will never be without them again. Better safe than sorry in my book. Everytime you flare it is going to create more scar tissue, even when you are not aware you are flaring. (Microscopic damage). JMHO
 
By the way my Crohns has been limited to the same area you have it, thats why I disagree with Writer. 

Good luck,
Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*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 *~*

Post Edited (Nanners) : 11/21/2009 8:23:51 AM (GMT-7)


sukay
Veteran Member


Date Joined Feb 2003
Total Posts : 1432
   Posted 11/21/2009 1:36 PM (GMT -7)   

Nanners,

So after your 1st resection you were free and clear of all crohns signs in your entire system too?

How soon after your 1st resection did you start to flare? Is that when you immediately started your maintenance plan, once you knew something was brewing?

How soon after beginning your maintenance therapy did you have to have your 2nd operation?


~sukay~
 Bipolar - 2004
     Crohns disease - 1995 
Arthritis & Fibromyalgia 
 
Leo Buscaglia

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