Made the surgery decision - goodbye colon

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Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 9/30/2008 7:44 PM (GMT -7)   
I had been becoming a more regular poster and Humira fan, and then fell apart mid-summer and have been offline until recently, so a quick update:

Was feeling great and close to remission on weekly Humira and tapering Prednisone to 7.5/5mg. Got down to 5 mg, and went back into full flare mode, right in the middle of a family trip to Hawaii. Back home, spent the month of Aug basically bedridden, trying to avoid the hospital. Saw my GI and also my IBD specialist/consultant, and my options were Tsabri or surgery. Had a colonoscopy which showed that my rectum and other areas of my colon had healed (during my Humira treatment), but that the ulcerated areas on the left side had actually deepened and worsened dramatically. Go figure. I have been having extreme pain, which is not a regular symptom for me, and my GI said it is due to the severity of the ulcerations and inflammation.

When I was too weak to walk or get up from the toilet unassisted, was hospitalized for 2 weeks and stabilized on high dose solumedrol/prednisone and cyclosporine, along with lots of pain meds. The cyclosporine reportedly made me ineligible for Tsabri, according to my specialist. So the decision for surgery was made, and I am actually relieved. I was scared about the Tsabri, and was leaning towards surgery, b/c I am tired of being so miserably sick, but was having a hard time pulling the trigger. The time in the hospital allowed me to realize that I want the surgery and am at peace with it. Aside from my occasional freak-outs about it, which I think is normal.

I have been sick for 2 and a half years, with no real remission, have failed every med I've tried, and have been prednisone dependent for over a year. The prednisone is killing my body as much as my crohnsy colon is. I'm ready for a change, as drastic as it is, and my medical team has all agreed that a surgical solution is my best and most realistic one.

So got out of the hospital, have been getting stronger at home, fingers crossed am still stable on pred and cyclosporine, as well as percocet, and interviewed surgeons. Picked my surgeon, had all kinds of tests (Upper endoscopy, small bowel series, pillcam) which confirmed my Crohns is limited to my colon at present, and surgery is scheduled for 10/10. The surgeons all agreed my colon continues to be very inflamed and needs to come out NOW. It will be a 2 part surgery, laproscopic if all goes well.

Sorry for the novel! It's good to be back.
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, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
4/9/08 Humira dose increased to 40mg/weekly
Now alternating 7.5 mg/5 mg pred


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 9/30/2008 9:00 PM (GMT -7)   
Wow.  Your story could be mine. 
Affected colon.  Severe left side pain for past 1-2yrs.  Unresponsive to all meds (mesalamines, 6MP, Remicade) except high doses of prednisone.  I had surgery in early May of this year, expecting to lose my colon and have a colostomy bag and then eventual J-pouch connection.  When the surgeon went in ( 8" opening along my belly midline) he found everything looked pretty good except for about 6" of my left side colon, so he removed only that and re-attached the ends for a resection instead of taking the entire colon.
I drug my feet about having surgery.
The final straw was driving to my remicade appt and being stuck in traffic in the parking garage when "the urge" hit me.  There was nowhere for me to go.  Luckily, I had a garbage bag and towels.  I was able to get both under me, pull my clothing down, place a towel over my lap and 'go'...while driving and looking for a parking space.  No one but me knew what was going on, but it was embarassing enough to make me want to do something about not being in control of my life.  I made my surgery appointment that day (I'd already had the consultation and only needed to pick a date) for 4 weeks later.
I am glad I had the surgery and sorry I waited so long.  However, I think I really needed to reach the point where the fear of surgery was finally over-ridden by my disgust at the lack of control over my life.  After the surgery, the pain was immediately gone.  Symptoms have been decreasing and things have overall been improving nicely.
Best of luck to you,
Heidi
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 9/30/2008 9:25 PM (GMT -7)   
Thank you for responding -- your post made me cry with relief, it is so validating to hear that you had a similar experience, and you do not regret your surgery. This is such a wicked lonely disease. I too have had accidents in the car.

So glad to hear that you are improving, and that your pain is gone.

Interestingly, while my treating GI and IBD specialist both think I have Crohns-colitis, my surgeon disagrees. He just submitted a journal article which proposes a new category of diagnosis, which is for patients who present like me, with disease restricted to the colon that has a crohn's-like presentation in terms of deep ulcerations. He feels that my crohns will not recur in other organs, and feels that I may be a candidate for the pouch, if my small intestine cooperates.

Either way, it is a 2 part surgery for me. I'm not getting my hopes up about the pouch, as to me the idea of even a temporary bag is hard enough to get used to. I'm just going to try and be strong and adjust to whatever I must adjust to, and pray that it is better than how I am suffering now.

Thanks again, Heidi! Wishing you continued better health...
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, Entocort, and Remicade
On Humira since 1/08 with promising results, but can't get below 5mg Prednisone
4/9/08 Humira dose increased to 40mg/weekly
Now alternating 7.5 mg/5 mg pred


Julie1014
Veteran Member


Date Joined Oct 2005
Total Posts : 1245
   Posted 10/1/2008 2:29 AM (GMT -7)   
Pibbin, I've never had surgery for Crohn's, but I just wanted to wish you the best of luck. Please keep us updated. Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 10mg/day, (tapering Pred 1mg/month,) Miralax daily, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)
 
 
 
 
 


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/1/2008 3:30 AM (GMT -7)   
Hi Hope your surgery brings you the relief that will bring you to better health . I know after resection it was wanderful not to have the pain and now I'am eating better. Sounds like 78SilAnniv had good results .We are here to help you threw this and to support you. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 10/1/2008 5:03 AM (GMT -7)   
Pibbin--sorry to hear you've had such a hard time of it...and the vacation thing, I can relate!!! This year I went on a trip out west with my family and LUCKILY had issues the week after...other trips weren't so lucky though!!

I'd like to suggest you visit the ostomy board...there is a running thread (I think it is up to #19) on Total Colectomies (colon removal). You could get a lot of info on what to expect and how wonderful it has been for others!

Good luck with your surgery...the most important thing to remember is to get up and WALK as soon as they let you:) That will get you home on the fast track! And I'll keep my fingers crossed for the lapro surgery...mine have all been open, but I have seen first hand how wonderful lapro is:)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 10/1/2008 6:25 AM (GMT -7)   
Hopefully this surgery brings you to a long long remission. Good luck and keep us posted.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 10/1/2008 6:57 AM (GMT -7)   
I have had an ileostomy for ten months now and I must say that after the first few months of getting used to the bag, and how to manage it well, it is really OK!! No one can even tell that I have an ostomy, and there is total control (compared to crohns episodes). I have to make the decision whether to get the ostomy reversed and be "hooked up" again, and I am having a very hard time deciding. Here is my story . . .

I went in for a "routine" bowel resection (my first) that fell apart after four days. I was rushed to emergency surgery with peritonitis and I almost died. I recovered, but with "open wound" healing that has left me with a huge abdominal hernia (and a temporary ileostomy). I know that I have to have surgery to repair the hernia and my surgeon wants to reverse the ileostomy at the same time. The problem is that since I have had the ostomy, I have no symptoms at all from Crohns and I have not been taking any medications at all! If I get hooked up again, I will have to resume Humira and asacol, and perhaps endure Crohns flares again. It seems that my colon is the only place that I have Crohns. . .

Does anyone out there have experience with having a temporary ostomy and then getting hooked back up?

Thanks!!!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 7:23 AM (GMT -7)   
Hi Pibbon . . . just wanted to wish you well on your upcoming surgery!


Blossom . . . welcome to the forum!! I hope you'll start a new topic and include your question in the topic title. That way, folks who can answer your question will see your post.


Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 10/1/2008 7:51 AM (GMT -7)   
Thanks Rosie! I am a totally new member and am just learning the protocols . . . Pibbin, wishing you all the best and a full recovery!!

Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/1/2008 8:01 AM (GMT -7)   
Thanks everyone for your support and well-wishes, it means a lot.

Thanks, OHIO76 for the advice about getting up and moving -- now that you mention it, I remember that from my c-sections, my only other surgical experience.

I have *just* started looking at the ostomy board recently, but am trying hard to only open the positive or informational threads, lol. I don't need to hear any nightmare stories at the moment, LOL.
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, Entocort, and Remicade, weekly Humira
Late 7/08, down to 5 mg pred, and big flare, Humira failed
2 week hospitalization in 8/08
Now on Pred 25 mg, cyclosporine, percocet, xanax
Surgery scheduled 10/10/08 to get rid of this colon


eyesoffire30
Regular Member


Date Joined Aug 2005
Total Posts : 296
   Posted 10/1/2008 9:42 AM (GMT -7)   
I also had surgery to remove 18 inches in Aug of 07 and it was the best thing next to not having this problem. I will also mention in addition to moving, my surgeon recommended chewing gum spearmint, it gets the gastro tract working a bit better and I am not sure how many people this happened to after surgery.......BUT........when they tell you that you can start having liquids and they bring in that first tray of stuff that to you seems like a meal fit for a king LOL, make sure you have a commode next to your bed because I did not and right after I drank some soup and had some jello and italian ice I got company and 5 minutes into the visit I had to go!!!!!!!!! I made it out of bed and that was it!! I was so embarrassed but made it through and then they put one next to my bed. Good luck!!

Surgery Aug 3,2007...15 inches small and 3 inches of large intestine removed. On no meds and in my first flare since.
 
"Part of the secret of success in life is to eat what you like and let the food fight it out inside." Mark Twain. I love that one!!!!


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/1/2008 10:24 AM (GMT -7)   
Thanks for the advice, keep it coming!

Just to clarify, (sorry, my percocet-addled brain, I think I wasn't specific in my original post), I am NOT having a resection, I am having a total colectomy. Colon out. Temporary or permanent ileostomy, not yet clear, depends on the condition of my rectum. It will be a 2 part surgery, and after part 1, in 10 days, I will wake up from surgery with a stoma and bag.
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, Entocort, and Remicade, weekly Humira
Late 7/08, down to 5 mg pred, and big flare, Humira failed
2 week hospitalization in 8/08
Now on Pred 25 mg, cyclosporine, percocet, xanax
Surgery scheduled 10/10/08 to get rid of this colon


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 10/1/2008 11:50 AM (GMT -7)   
Hi Hope that it will be a temp. one and that your rectum is in good shape.I haven't had that surgery but it must be frightening for you as when they go in for resection sometimes they don't know till they get there. Hope you have some family that will be there for you as it is a good comfort to have someone . lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still alive.lol gail


Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 10/1/2008 12:10 PM (GMT -7)   
I also have an ileostomy due to crohn colitis. I was so sick and near death when they did the surgery. They kept trying different meds and none worked. I ended up in emergency surgery to have my colon removed.
That was in 2002 and I haven't looked back. I felt better instantly. I haven't had any flares since and feel great (except for now, I have 2 broken anlkes at the moment... due to the prednisone I was on during my flare). I haven't been on any meds since surgery. I won't be going back to original plumbing, I will be having my rectum removed later this fall or winter. I've seen too many times crohns patients get reversed and they're just about instantly back into a flare and in the end, end back up with an ileo again.
I'm much happier and healthier with the ileostomy. It will take a little time to get used to it and its habits, but all in time.
Make sure you tell your surgeon that you want at least an 1" spout. Too many times surgeons leave the stoma flush which will leak constantly and leave life miserable.
Good luck with your surgery and make sure you come back and let us know how it went.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 10/1/2008 2:04 PM (GMT -7)   
I just want to send my wishes to you for strength and happiness.  It's such a hard decision to make, but everything I hear is that it's so much better than all the suffering.  I am a similar story also with regard to rejecting or not responding to meds...  I am on Tysabri, but stopping due to risk.  I am hoping I can survive for a while on the rectal meds, but who knows.  I had an appointment in May, 2 months into Tysabri, to plan a summer ileostomy.  I didn't do it yet, because the rectal meds helped enough for me to deal, but I remember how I felt making that appointment and moving forward with surgery plans.  And, I do keep trash bags in the car at all times.  It's not a fun way to live!
 
If you check on the ostomy forum here (you might already have done that) there are so very many encouraging stories.  I'll be sending good thoughts your way and it would be great to hear how much better you feel!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 10/1/2008 2:37 PM (GMT -7)   
I will definitely report back after surgery. This board is such a gift of information and support, hope I can contribute.

Thanks, brannah for the tip about the stoma spout -- that was not even in my vocabulary or a thought in my head. I will ask the stoma RN about it when I meet with her for marking, and will also discuss with the surgeon. I am relieved that the surgery is happening quickly, but I have a lot to get educated about. But I'm glad not too much time to worry -- I'm on xanax for the first time ever as it is!

And thanks sr5599 for sharing. I hope all goes well for you. Was the Tysabri helpful at all? I was going to go for it, but just didn't think I could stay stable enough to get the Humira out of my system first, and frankly, the risks scared me. I will definitely be going back to the ostomy forum.
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, Entocort, and Remicade, weekly Humira
Late 7/08, down to 5 mg pred, and big flare, Humira failed
2 week hospitalization in 8/08
Now on Pred 25 mg, cyclosporine, percocet, xanax
Surgery scheduled 10/10/08 to get rid of this colon


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 10/2/2008 9:42 AM (GMT -7)   
Hi Pibbin. I have had 2 resections and have another coming up anytime now. It is scary. No matter how many times you do it. I wish you all the best and hope that you will get a nice long remission.
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


GlutenFreeGirl
New Member


Date Joined Oct 2008
Total Posts : 16
   Posted 10/2/2008 1:58 PM (GMT -7)   
Consider first please whether you might have a wheat allergy/intolerance. I have Crohn's and am cured from Diarrhea now for 3 weeks after getting off the wheat. I also have asthma and it's from the wheat. If you haven't tried it or considered a food allergy as the root cause please give yourself this one chance to avoid the knife.
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