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whatsnext??
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/1/2010 11:37 AM (GMT -7)   
Hi all,

Looking for some help/advice.

My wife (35) was diagnosed with Crohn's (due to the location, the docs could go either way with Crohns or Colitis) in 1997 and has been through all of the drugs. Asacol along with an occasional stay on Prednisone and antibiotics worked well for the first several years. Since then it has been a steady run through the remaining list of drugs with the last few years trying the heavy hitters of remicade and methotrexate. Unfortunately nothing is working and the options are drying up.

Her doc at the Crohn's and Colitis Center at MGH is offering up the options of Tysabri, an Ileostomy (starting as temp), or going in a phase III trial of vedolizumab. Due to her current level of inflammation, the thought is the trail is not a wise option because of the chance of placebo in the trail. She is also thinking about just stopping it all and heading down the holistic approach to see if that is any help.

So we are left with Tysabri and the scare of PML vs an Ileostomy vs holistic. We are looking to hear people's experiences with both such as success/failure with Tysabri, living with an Ileostomy when you're 35, and any luck with holistic docs in Mass.

Thanks so much.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 4/1/2010 2:41 PM (GMT -7)   
Some docs will do a j-pouch for patients with Crohn's that is only in the colon...not a guaranteed cure unless it is UC, but some are getting 5+ years success. Personally, I have now had a permanent ileo for the last 2 years (it was temporary for 8 years before), I am 42 now and have no issues with it. For me, it was the only thing that gave me my life back...I had a lot of rectum involvement w/fistulas but have also had small bowel involvement in the past (which is why I waited).

I did try Remicade, but it was still in trial stage, and after three infusions developed antibodies. Trying the 'big gun' drugs comes with risks and is a very personal decision...just as an ostomy is, too. Holistic options can be dangerous with high levels of inflammation since that can cause strictures/scar tissue while off drugs:( and then the decision becomes simple...surgery...been there:(

Welcome to the forum. You will find a lot of knowledge from people who have walked in your shoes either as the patient, spouse or parent!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Djin
Regular Member


Date Joined Jan 2010
Total Posts : 265
   Posted 4/1/2010 3:48 PM (GMT -7)   
I don't know about tisabri. But I would be very cautious about going holistic.

I've read Jini's book, and learned something. But it is hugely empiric. Maybe you can try going holistic WHILE ON MEDS, and, if you do see real improvement, advance slowly.
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/1/2010 5:20 PM (GMT -7)   
Welcome to the Forum Whatsnext!

I suggest you check out the ostomy board too for their advice and experience. I hope you find a clear path forward soon and she gets some relief!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/1/2010 7:09 PM (GMT -7)   
I've used Tysabri - and have also rejected all other meds. I'm currently on Cimzia and don't think it's doing anything. My doc thinks it's *maybe* (he doesn't seem to think it's really doing much either) keeping me from hospitalization again. I take steroid suppositories nightly and that is what keeps me half way sane. I started methotrexate a couple months ago and have yet to see a change (though keeping positive).

I periodically keep journals of symptoms - not every day, it would drive me nuts. But, I was reading through my journal from when I was on Tysabri and I was actually better off then than now with all three (steroid supp., Cimzia and mtx). Unfortunately, even though I may have been better, I was not in remission and could not justify the risk. I am a single mom to an almost teen daughter and cannot stand the risk of PML.

The reality of PML with Tysabri isn't very high, but it's very scary when it's you that is taking the risk. (Or in your case, your wife) The way I figured it was, the risk is very, very low for the first few months. It takes a few months to even know if it will help. So, to me it was worth finding out if it even helped to then determine if it was worth the risk. When I realized it was not going to put me in remission, I quit after 6 months. It's a very personal decision and I wish you the best of luck with it - whichever way you two decide!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


FunGuy
Veteran Member


Date Joined Oct 2009
Total Posts : 1070
   Posted 4/1/2010 7:39 PM (GMT -7)   
What about the stem cell research? http://www.cellmedicine.com/crohnsdisease.asp
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/1/2010 8:02 PM (GMT -7)   
My hubby is the one with crohn's, and I too am a caregiver like you. I think my answer would depend on how badly your wife is doing. If she is managing to get through each day, and is not in a great deal of pain, ie. crohn's is a simmering ongoing problem, but manageable, I'd give the vedolizumab trial a shot. If she is suffering, in pain, losing her health because she is malnourished, unable to cope with each day, I'd opt for the surgery (with a bag, because j-pouch can be problematic in people with crohn's).

I know surgery is no guarantee in crohn's, but it could lead to a long remission sometimes. I really dislike the possibility of PML, and I would not recommend my husband get Tysabri. I prefer the possibility of remission, however short lived to the possibility of PML.

I'm so sorry you two are going through such a rough time. I hope things will return to normal soon, and that whichever course of action you take will lead to an improvement in your lives.

(((Hugs)))
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 4/1/2010 8:14 PM (GMT -7)   
You know, FunGuy has a really good point. There are some great trials going on at Northwest University involving stem cells. If you go to clinicaltrial.org you can search on Crohn's. I considered this after Tysabri, but couldn't stand to leave my girl home long enough to do the trial. But, for the few people who have done it, it's been a very long standing remission. As in, no disease activity.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 5/18/2010 12:23 PM (GMT -7)   
Hi WhatsNext:
I was reading your post and it sounds very familar to me. I actually used to go to the Crohn's and Colitis center at MGH and recently switched to Beth Israel in Boston.

I am in the same situation as your wife. I am 40 years old and have tried most of the meds out there. My options right now are Tysabri (which my doc is pushing), Methotrexate, or a Cipro/Flagl combo --- or clinical trial meds or perm ileostomy.

I did try the SCD diet last year and don't really know if it helped or not b/c I was on pred the whole time. I'm not sure I gave it a fair chance because it was hard. I'm currently on Cipro and it is helping a bit but my recent colonoscopy was bad bad so I need something else.

Just curious to know what you/she decides. My husband is trying to help me decide too what to do - I am not hopeful that any of these drugs will work and will certainly consider the ileostomy if necessary. I have a doctor's appt on Thursday so trying to get prepared for it...

Keep me posted if you can.
Good luck.
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 5/18/2010 7:32 PM (GMT -7)   
I am not sure my post will help anyway, for me remicade only works for two weeks. Besides that I am on prednisone, and simply cannot function without it. I manage to taper down then flare badly. So, I might switch to humira or cimzia. I guess besides these three, rest are crap shoot. I am glad that MGH is offering options, I would take the Phase III trial or Tsybari and put off the surgery as much as possible, have you tried MTX and/or 6mp? I am sure they must have looked at it.

sno92c
Regular Member


Date Joined Sep 2009
Total Posts : 78
   Posted 5/18/2010 8:13 PM (GMT -7)   
I am on a new study drug at this time that is not working but my other option was Tysabri but my doc refuses to let me try it. He doesn't like the side effects or the drug.
Diagnosed in 2004 with Crohn's disease. Resection in 2009. Have tried almost every medication and nothing has worked. Next step permanent ostomie.


whatsnext??
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 5/19/2010 4:51 AM (GMT -7)   
My wife chose Tysabri and so far has had 2 treatments.  The docs will not judge the effects until 3 mths (3 treatments in) but so far so good.  There has been a notable difference since she has been on the Tysabri.  Still keeping the figures crossed.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/19/2010 6:08 AM (GMT -7)   
Glad to hear that the Tysabri is helping some. Do continue to keep us posted on how she is doing. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease 
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"*

Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 5/19/2010 7:26 AM (GMT -7)   
The challenge with Tysabri as I understand is that it works by blocking the white blood cells from entering the gut (which is the source of inflammation), GI doctors are not sure if that is the right way to control CD inflammation. So that is why it has not caught on amongst GI practitioners.

dietcoke
Regular Member


Date Joined Jul 2008
Total Posts : 186
   Posted 5/19/2010 9:19 AM (GMT -7)   
WhatsNext??: My doctor wants me to go on Tysabri for 3 months then switch to Immuran (even though I was allergic to 6MP). Not sure why he only wants me to go on Tysabri for 3 months. Maybe it's because of the increased risk for PML after that time, although the PML risk seems pretty small.

Is there a plan for your wife to switch meds or does he want her to stay on Tysabri indefinitely if it works?

Glad it seems to be working.
40 years old female
Salmonella - 1996
Crohn's Colitis in entire colon - Diagnosed in 2000
Hypersensitive/Allergic to Asacol/Pentasa/Budonside/6MP/Immuran/Humira/Remicade, and more
Past meds that worked: Cipro, Prednisone

Daily: Folic Acid, Omega 3, Multi-Vitamin, Cipro 1000mg, yummy homemade yogurt


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/19/2010 2:38 PM (GMT -7)   
dietcoke - from my understanding, Tysabri could take a couple months to kick in. That 3 month plan sounds odd... But, I'm no expert. What I have been told is absolutely not to mix Tysabri with any other immune suppressing med. The Pharmaceutical company will only allow steroids, but the patient must be able to get off the steroids by 6 months into the Tysabri, or they will not allow the patient to continue Tysabri treatments.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 5/19/2010 3:35 PM (GMT -7)   
Hi,
I just wanted to say that I was in the same position as your wife 2 months ago, and I opted for a permanent ileo. I am only 28 and couldn't stand the idea of living the rest of my life with diarrhea ALL THE TIME. I don't always feel the best, but at least I can LIVE. I haven't regretted the surgery once since I had it.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


whatsnext??
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 5/20/2010 8:23 AM (GMT -7)   
dietcoke, as sr5599 said, I also am no expert but the 3 mth thing does seem very odd as they do not tend to judge the effectiveness of the treatment until around 3 mths. Some folks it starts working very quickly. For other it takes time.

Also the general feeling on the PML risk seems to be that it increases with time but much longer term than 3 mths.

For my wife, Tysabri was the last option before surgery. She has been on pretty much all the drugs you can think of for Crohns.

whatsnext??
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 5/20/2010 8:26 AM (GMT -7)   
Also, hopefully vedolizumab will prove to be promising as it works in a similiar fashion to Tysabri but from what I understand focuses on the GI area specifically unlike Tysabri.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/20/2010 10:29 AM (GMT -7)   
I am so looking forward to vedolizumab being approved. I know it's still a couple years out, but that doesn't mean I can't look forward to it! I was afraid on Tysabri, being a single mom... I was sad to learn I'm not eligible for the clinical trial due to latent TB (treated for a year with INH) way back in 1990. Anyway, good luck to your wife! It's great that she's feeling better on it! And, really, the risk is low... And all of our "big" meds carry risks.
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09

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