Crohn's Disease: Surgery or Continued Medical Therapy?

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Spindy
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Date Joined Dec 2008
Total Posts : 18
   Posted 12/4/2008 5:17 AM (GMT -7)   
I am a 46 year old male and have been reviewing this forum.  Lots of good information here.  I would like to take the opportunity to tell my situation in the hopes that someone has experienced something similar and may be able to share with me.  I welcome any and all input.  My current GI doctor says I'm the most difficult patient he has ever had and I'm now seeing multiple specialists at Mayo in AZ.  My case is so unusual that Mayo is even doing a journal write-up on it.  Ultimately I know the decision is mine, but I'm looking for input from friends, family, doctors (or course) and other patients.
 
I have had Crohns for 17 years now.  Since 2001, I have had three resection surgerys.  Early on, I was on prednisone for more than 6 years before they could ween me off it.  Was on Azulfidine as the maintenance drug, but have been on Asacol now for several years (with a short run on Pentasa over the summer).  I tried Remicade, but developed serum sickness.  In 2007, I tried Humira when the Remicade did not work.  After four injections, I developed a colon abcess.  After three weeks in the hospital, I had my third resection.  While there, they determined the removed section of colon had active cocci (Valley Fever for those of you familiar with Arizona).  Not unheard of, but very unusual to see cocci in the colon.  Turns out that a risk of Humira is cocci.  Although not proven, some of my doctors suspect that the Humira triggered the colon abcess. 
 
All that said, I've not been doing too good and have lost some weight.  After more tests in the past two months (MRI, CT, & two scopes), the lower part of my colon is in very bad shape.  The sigmoid, rectum and anus are all badly diseased.  My primary GI doctor says the colon needs to come out and sent me to Mayo.  He is also concerned about even trying another TNF blocker.  I've seen the Mayo GI doctor and had a surgical consult.  The surgeon is of the opinion that I need to be very careful in my thinking.  While I am still fairly healthy, surgery may be the best option.  He said that if not careful, the cocci could end up killing a person and better to do the surgery while still relatively healthy.  He said he has a patient now with Crohns and cocci who exhausted all Crohn's medications available before having the surgery.  He had the surgery and now remains in intensive care because of the cocci and the fact that he waited so long.  In my case, an Ileostomy is the only surgical option.
 
The GI doctor did present several options:
  1) Surgery is of course an option
  2) Increase my current dosage 6MP
  3) Try Humira again
  4) Try Cimzia
  5) Tysabri
  6) Participate in a trial starting in a few weeks for Ustekinumab (IL12)
 
So now I'm researching the options presented by the GI doctor above.  Also trying to get information on the surgical option for the Ileostomy.  Obviously reluctant on the surgery given the change, but the feedback I've received to date is that it really improves the quality of life.  I would love to hear from anyone that has had the surgery and their experience.  Would also love to hear feedback from anyone that has used the medications above, especially 4-6.  Not likely I'll find anyone out there that has had experience with Crohn's and cocci, but it would be great to hear about your experience if you have.
 
Given the GI options above, I'm reluctant to start another TNF blocker since the Remicade and Humira did not work in the past.  I've pretty much ruled out Tysabri given the controversial side effects, but welcome feedback on this based on others experience (good or bad).  IL12 is still in trials, but maybe someone out there has participated in some trials and has something to offer.
 
Thanks for your time and I appreciate you reading through my long-winded story.  Trust me when I say that you have received the very short version.
Look forward to hearing from anyone concerning their experiences that may aidme in my decision.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/4/2008 6:17 AM (GMT -7)   
Hi Spindy Welcome to Healing Well and I did do a read up on the cocci.You have a hard decision to make here and was wandering if you have the operation if it would be a permanent ostomy or something that could be reversed at a later date the cocci probably makes a huge impact on how you are going to treat this I would persume. I don't have much knowledge on this but I did read about steriod problem. I am hoping you can come to a decision before too much longer and if you do have the operation does that get rid of the cocci. I didn't read up on the treatment for it and will go back and read some more. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/4/2008 6:46 AM (GMT -7)   
Thanks for your response.  Good questions.  The surgery would be permanent (non-reversible).  For the cocci, I was on a home IV for three months following the resection in 2007.  Now on Diflucan which I take once daily (orally).  The Infectious Disease doc said I could possibly be on Diflucan for life.  Does removing the colon remove the cocci?  That's the same question we were discussing last night.  I suspect it does not - at least not 100%, but probably reduces it significantly, especially where active in the colon (probably dormant in other areas which is the case for most Arizonans).  It is certainly the top question on our list for the surgeon when we have a follow-up with him next Weds. 

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 12/4/2008 7:52 AM (GMT -7)   
I have heard that folks who have the permanent ostomy feel so much better and always wonder why they didn't do it sooner. I would get clarification though on whether or not the cocci is removed or not. I wish you good luck with your decision and look forward to hearing more on how you are doing.
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.  Resections in 2002 and 2005.  Also diagnosed with Fibromyalgia and Osteoarthritis. Currently my Crohns is in remission.


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 12/4/2008 2:27 PM (GMT -7)   
Before commenting on you in particular I'd just like to say I have an illiostomy, and have for about 4 years now, and my health although not complete remission for 4 years, has been significantly better, so much to the point that I opted to just removed my rectal stump back last November, because of the pain it was causing and I dont see myself opting for it back and risking the disease re-appearing. But that doesnt mean jump to that conclusion for yourself. Thats a very serious surgery, a little more in depth then a re-section and if you get your rectum removed without the chance of re-connecting later, then there are other possible side effects from this.

Every single patient is different, and I know I'd listen to the surgeon on surgery before listening to the GI, trust me, the surgeon knows all of your case like the GI or you wouldnt have been sent there, especially without records, the surgeon most likely specializes in this or atleast has considerable experience since your at one of the mayo's.

Remicade and Humiria are sort of the same 'class' of biologics so you can always go to something completely different, just like 6mp is.

As for a clinic trial, if your flaring I dont know why you would want to try a trial, when they dont know if it will work, nor the side effects or complications, they can guess yes, but thats why there are trials so that we can get relief without killing ourselves first.

Also about J-pouches, I'm sure the surgeon has introduced the idea of a J-pouch as an option too, which is a ostomy of sorts, but it is made from a loop of bowel as your rectum, you still use the bathroom normally, you'll just have to go a few more times a day, now I understand if you think you go a lot, but this is thought of a lot for pain wise.

You need to make your own decision, obviously no matter how many people here tell you their experience, we're not you, our drs arent yours.

Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 228
   Posted 12/4/2008 2:54 PM (GMT -7)   
Spindy - I would recommend that you check the "Ostomies" section of this site.  You'll find countless people with ostomies who probably have similar
stories to your own.  I suffered with crohns for a couple of decades until I finally couldn't fight the fight any longer. I asked the surgeons to do whatever it took to make the pain go away and I ended up with a permanent ileostomy.  The recovery period was long for me but worth it.
 
I wish I had done it twenty-five years ago.
 
Where's the darn spell check?
 
Good luck.
 
TomH 

Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/4/2008 3:03 PM (GMT -7)   
Thanks for your comments. Yes, I learned that everyone is unique where this disease is concerned and what's right for one person is not necessarily the right course of action for the next person. In my case they are talking about a permanent Ileostomy with a stoma. No j-pouch options for me.

Obviously I will follow the guidance of the docs and ultimately decide what is best for me. Unfortunately I don't have anyone that has been through many of the experiences I have been or that I am facing, and the docs providing guidance certainly haven't (although they do see it daily, they haven't lived it). That's why I thought it best to seek out the experience of those that have and are now living with a Ileostomy/stoma and how that has worked for them as well as any of the meds.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/4/2008 3:23 PM (GMT -7)   
Hi Go to the top of the page and you will see Forum Quick Jump on the right hand side, click on the check mark and you will see Ostomies. They should have lots of info hope this helps and stay in touch with us. I would like to know how things go for you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 12/4/2008 3:34 PM (GMT -7)   
I would assume their asking on here because we specifically deal with Crohns disease and ostomies, just like UC and ostomies are different I assume they want o know specifically about Crohns related ostomies.

If you want to specifically talk to someone with both email me at Skinsfan1229@aim.com

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 12/4/2008 3:45 PM (GMT -7)   
If the surgeon thinks there's a good chance that the surgery might get rid of the fungal stuff, I might be inclined to go that route. Fungal infections are frustratingly persistent things, and I would be worried that yours might be inclined to blossom if you went on another strong immunosuppressive medication. One thing you might consider as a treatment is total enteral nutrition (all-liquid diet used to induce remission) or supplemental enteral nutrition (using a liquid formula to supply part of your calories as a way of helping maintaining remission). Enteral nutrition is an old but clinically proven treatment for Crohn's, not much used in the United States these days, but well accepted in much of the world (UK, Canada, Japan, etc.). Dr. Fred Saibil's book for patients (second edition) about Crohn's disease and ulcerative colitis has some info about it, and you can also find medical studies on Medline. Not as effective for Crohn's colitis as for small intestinal disease only or mixed small and large intestinal disease, but still could be worth trying.

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 12/4/2008 4:57 PM (GMT -7)   
The reason why TPN isnt used as widely anymore because in some cases its hard to be able to come OFF of this. Where as your body re-adjusts itself to deal, and gets used to getting its vitamins and minerals and nutrients without so much as 'working' for it. Just like when you have you colon removed, your small bowel starts to take up for it but absorbing the liquid in your stool, which is normally the job of your colon.

Do think of this, remember this isnt something replaceable, once its gone its gone, and this is organs in your body, not teeth or something that you can atleast get 'prostetics' for.(meaning densures)

Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/4/2008 5:42 PM (GMT -7)   
Thanks to everyone. Obviously this is a difficult and very life changing decision. A lot of what has been mentioned I have considered and continue to do so. Others have raised some great comments that gave me more to think about and research. I welcome anything else anyone can offer and I will definitely check out the "Ostomy" site and may post there as well. I appreciate it.

chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted 12/4/2008 7:57 PM (GMT -7)   
Also, you could try:

-Anti-MAP
-Trichuris suis or other helminths
-Low-dose Naltrexone

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 12/4/2008 8:32 PM (GMT -7)   
Crohn'sPatient,

Just to clarify, I was talking about total enteral nutrition (TEN) not total parental nutrition (TPN); they are very easy to confuse. TPN (nutrition delivered directly to the bloodstream rather than the intestinal tract) can be a problem because of the risk of liver problems with long-term use, as well as the possibility of blood clots and infections, so shouldn't be used unless absolutely necessary. With total enteral nutrition, there is no problem with returning to regular food as the intestinal system remains in use and in good condition. The tendency not to use it in the United States is because GIs here tend to think it is too difficult to ask patients to give up regular food for several weeks or to ask them to take a supplement on a regular basis.

chocolate_stains
Regular Member


Date Joined Dec 2008
Total Posts : 61
   Posted 12/4/2008 8:42 PM (GMT -7)   
This guy is really inspirational http://www.youtube.com/user/UCVlog

Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/5/2008 4:55 AM (GMT -7)   
Thanks chocolate_stains. I've been viewing some of his videos and yes, extremely helpful and very inspiring. I really have to give him credit for the information sharing and educating folks on the disease and living with it in a video format. I don't know why I didn't think of checking You Tube to begin with - seems so obvious now. Thanks for pointing me here.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 12/5/2008 5:22 AM (GMT -7)   
Hi Have you done any research on the meds you were interested in looking up? I only was on Remicade, prednisone, and Imuran but there are other post about here about meds. How long before you go to the Dr. to decide on what to do .I was reading a post here yesterday where someone had mentioned some fever not sure but it might have been Valley fever if I come across it again and it is I will let you know.lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail


Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/5/2008 5:29 AM (GMT -7)   
Hi Gail. Yes, I have done all the research on the medications they suggested as current options for me. I'm an IT Project Manager by profession, so I have a well planned out spreadsheet showing all the options along with the pros and cons of each based on my research. Of course it is just research, so now looking for actual experiences. I go back to the surgeon next Weds, 12/10, the Infectious Disease doc on 12/18, and the GI doc on 1/2. So by the first week of January we will make the decision - although I already have an idea of which direction I'm heading.

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 12/5/2008 9:18 AM (GMT -7)   
I had my colon removed in October, and it was a very hard decision to make. I think that in order to make the right decision, you have to just let yourself experience all the fear and anxiety that goes along with the process, so while you are gathering your research, make sure to tune in to that little voice inside. I kind of knew I was going to go the surgery route, but it took a while for me to get there. I felt like surgery was a cop-out (not rational, I know), but I just was terrified to try the Tsabri, the only other medication option for me at the time. I actually took Xanax nightly for the few weeks prior to surgery, because it was such an emotional time.

That said, I had a very smooth surgery and recovery as well. It takes about 6 weeks to get comfortable with the ileostomy and get a handle on your new routines, but it is worth it -- no more pain, and for me -- no more meds, I was finally able to wean off of prednisone successfully.

My surgeon thinks the j-pouch is an option for me, but due to the brittleness of my small intestine from the years of pred, it will be a 3 surgery process for me. Based on how good I feel now, though, I would not be crushed if it turned out that the ileostomy had to become permanent.

Best of luck to you in your decision. Be patient with yourself... you'll make the right decision for you, even though it is not an easy decision to make.
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for Jan '09 to form j-pouch


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 12/5/2008 11:17 AM (GMT -7)   

Spindy--as a Crohn's sufferer for more than 20 years, I know the difficult decision ahead of you!  I chose to have a proctocolectomy this past February and although the decision was right for me, it's not for everyone.  I would just suggest (as it has already been done) to visit the "ostomies" forum...there are many helpful posters who might have some answers.

I wish you the best with your health!


catpower
Regular Member


Date Joined Nov 2008
Total Posts : 192
   Posted 12/5/2008 3:13 PM (GMT -7)   
I am sorry you have such a difficult decision to make. I just wanted to say that my brother tried Remicade while it was still in the trial stages of Crohn's, and his case was also in a medical journal! He did not need his colon removed, and although all the other medicines failed for him, Remicade was his life saver. I just wanted to mention that it might be worth it to consider the trial. Of course, it always helps to find out the possible side effects and if others have tried it too (we had the benefit of those comparisons when my brother tried Remicade). Good luck!
Diagnosed with Crohn's Disease; Meds: Entocort & Asacol; female in late 20s.


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted Today 6:01 PM (GMT -7)   

Spindy,

Thanks for posting on the Ostomies section. I wrote you a reply.

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Spindy
New Member


Date Joined Dec 2008
Total Posts : 18
   Posted 12/14/2008 2:20 PM (GMT -7)   
A quick follow-up response to the question Nanners asked back on December 4th. Met with the surgeon this past Weds and he said the if the colon were removed, it does not remove the cocci. Obviously there would be no more active cocci in the colon because there would be no more colon. The bright side is that the cocci would most likely go back into it's dormancy phase because there is no active disease for it to attach to if there is no colon. I had the doctors reconfirm the crohns was never in my small bowel (it never was). So a few more doctor visits and we'll decide, but a good chance our course of action will be the permanent ileostomy (the only surgical option available for my situation). I'll keep you all posted after the first of the year.
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