the times they are a changing!!!

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Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/9/2009 10:56 AM (GMT -7)   
turn turn turn smilewinkgrin smilewinkgrin smilewinkgrin tongue tongue yeah yeah scool scool blush blush cool cool

Hi everyone!

Well, I have had Crohn's disease for about 16 years now. I think I was fifteen when I first went to the doctor and I was scared out of my mind... I had noticed a hemorrhoid type protrusion in my anal area, and had kept it to myself for a few months, reading up on medical encyclopedias in my room at night...trying to self diagnose the problem. I was surrounded by friends and family, but no one had any idea what was going on with me; it was a very lonely period in my life.

Fortunately, I got up the guts to tell my mom about the problem one day. My family was lucky enough to have good health insurance through Kaiser Permanente. The doctor I first saw at Kaiser's urgent care, suspected Crohn's disease right away, and within a short period of time, I was on some meds, and things started to get better quickly.

Well, the next fifteen years were a long winding road of illness, and recovery, illness and recovery, medications, doctors visits, tests of all kinds, falling off the "treatment" wagon, and letting myself get sick again....back to the doctor, more illness, more illness, illness, surgery, illness, surgery....and now......total remission and good health!

I went to see Dr. Targan, my regular GI doctor at Cedars-Sinai in Los Angeles last week. The end of the appt, was surreal. Let me give you some background first before I say why. I have been seeing Dr. Targan for about 8 or 10 years. At age 21 or so, the GI doctor in Valencia, near my house, told me he had exhausted all his options, and he needed me to see the best of the best in the field. With a little bit of arguing with the medical group (no longer Kaiser), he got me a one time out of network referral with Dr. Targan. After my first appointment, I changed medical groups, picking the group that Dr. Targan was a part of. This meant that I now had to drive quite a while to get to the doctor, even just when I had a cold. But, it gave me access to the Inflammatory Bowel Disease center at Cedars. After years of trying different medicinal approaches, including one of the earliest trials for Remicade, and a few other trials (I have tried just about all the standard crohn's medications out there, and a few creative approaches as well), I decided to have surgery, in order to divert the flow of waste into an ileostomy, giving my colon and rectal area time to heal without having food down there...The surgery seemed to work, but the fistulas I had for years did not heal. Eventually, I had more and more complications due to the fistulas. In November of 2008, I had my entire colon, rectum, and anus removed, making my ileostomy permanent. This was a very major operation. Now, four months later, Dr Targan has instructed me to call him if I have any problems or symptoms, however, I did not need to schedule a follow up at this time. We were both happy the day had finally arrived. He confessed to me he had wondered if such a time would ever come. I couldn't thank him enough. All the staff of the clinic were smiling...I walked out of there on a cloud.

Anyway, I just wanted to spread some happy news, since I know a lot of the time that is all we need. I also wanted to thank you all for offering support, and listening to me since I found this site a few years ago. Now that I am better, I do sometimes wish I had the courage to have the surgery sooner. It was a tough choice though, since I was afraid of making such a permanent change that I would never be able to reverse. On the other hand, there was a part of me who knew, deep down inside, surgery would likely be the only solution. All the feedback and sharing I enjoyed on this site, helped making that decision easier, and for that I owe all of you my life.

Thank you!!!!!


Nat aka gladbag cool cool turn turn tongue tongue
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/9/2009 12:11 PM (GMT -7)   
Nat! how wonderful that you are so positive about everything...my issues were very similar to you and I FINALLY feel like I don't have anything nasty living in my body (proctocolectomy on 2/8/08) and I LOVE IT!!!

Keep in touch, your knowledge is invaluable:)

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/9/2009 5:42 PM (GMT -7)   

Nat, I'm so happy that you're happy! smilewinkgrin It really is the best feeling to be disease free and to not have to see doctors on a regular basis anymore. Thanks for sharing your journey with us!


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.


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/9/2009 8:10 PM (GMT -7)   
Nat,

I am so happy that you truly are "gladbag"! Finally, you are disease and pain free, med free too? What a positive turn in your life! Do keep us up to date on how you are doing and what you are up to now that you are out and about in your "new" world!!!
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 3/9/2009 8:42 PM (GMT -7)   
Just had to chip in and say thanks for sharing your story!

And, Dr. Targan is my hero too!! I switched my treatment to him a little over a year ago, and just felt understood finally. It's nice to be seen somewhere where you are not the worst case they have ever seen, which is how I always felt at my original GI.

Who did your surgery? I had my surgery with Dr. Fleshner, who works closely with Dr. Targan. So far, no complaints, but I am still a couple of surgeries away from completion, fingers crossed.
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 '09 to form j-pouch


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/9/2009 8:50 PM (GMT -7)   
Yea for you!!!
 
I had UC and still the feeling is amazing once the disease is gone!!!  I've heard many comments similar to yours regarding wishing you had the surgery a little sooner.  Due to these feelings and thoughts it helped me to make the decision to have my surgery right away.  I didn't want to ever say that I shouldn't have waited.  : )
 
It really is pretty amazing isn't it?!  I sometimes can't believe that it's gone.  My UC that is.  I could care less about the colon, rectum and anus...they weren't my favorite organs anyway.  : )  All they did was cause me pain anyway.  Good riddens!!!
 
I love that you have such a positive outlook!  I'm just as excited and only had a brief moment of regret when my accessory (pouch) leaked the other night on my sheets.  *sigh*  I had a my moment of weakness and wished I were normal, but that didn't last long and I'm all good now.  : )
 
Again, YEA!!!!  You're getting BETTER!!!!
 
smurf  
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 3/9/2009 9:03 PM (GMT -7)   
Thanks for sharing your story. It is important to share positive stories with anyone needing encouraging words because surgery is such a scary step.
My story is similar, but I waited and waited much longer than you did. Now I am wondering why did I fight against surgery for so long? The ileostomy has helped me to live my life without misery, pain and bottles of medicines that really didn't do any good.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/10/2009 11:32 AM (GMT -7)   
Pibbin....

Yes, Dr. Targan is great. I am not sure if he accepts many new patients, but he sure does know his stuff. And his staff are all so nice and professional. My surgeon was Dr. Eiman Firoozmand, since Dr. Fleshner was part of a different medical group/plan. I was so happy with Dr. Firoozmand, as well as the resident/attending/interns doctors that came early in the morning and during rounds in the hospital, and followed my care while I recovered. One of the rotating doctors was gorgeous, and really charming and friendly....I wish I had the courage to ask her out...oh well. Maybe I did when I was looped out on all the pain meds...hehe..

RobinByrd....well, we all have moments when the appliance just doesn't work out...but I am sure you would agree that a leak from an ostomy is always better than a traditional kind of accident, Of course, I too forget that sometimes and wish I was "normal". For me it is not too hard though...i was fairly bizarre before I got an ostomy...now I am just that much more interesting.

Talk to you all later!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 3/11/2009 3:42 PM (GMT -7)   
i am so glad to read your post. My ileostomy and proctocolectomy were on 2/24/09. I'm doing well but having a bit of a hard time "gripping"/"dealing." It's good to read these success stories. I hope my doubt begins to fade soon. In some moments, I am just so scared.

I, like you,was diagnosed at 13 and then dealt with the disease for 24 years with meds. But I was out of options this winter and faced a surgery I never thought I would need--"oh, that's a surgery for really sick Crohn's folks." Well, I was that sick crohnie. I am so fortunate and thankful that my surgery went so well. I was home on the 28th. I too had a great team of residents, nurses, docs. Felt so blessed.

My protein is very low and I'm quite malnourished. My appetite began to come back on Monday this week but with my eating came this awful, incessant gas. I'm so worried that this huge cavity in my back side won't heal. I have a visiting nurse everyday to pack it--she and the doc are stressing my eating. i'm so thankful that the r-v fistula is gone, that I can sit through a whole movie (wow!), and that I can eat pizza with a dairy pill. I feel better today than I have in over 6 months-I never realized how sick I was. Denial.

But I'm so uncertain as to what to eat--so scared I'm going to hurt my small intestine or kick up the crohn's. My GI says I'm not going to need him. My surgeon is very pleased with my progress. But I feel like I'm on a tightrope.

Thanks again for all advice and help!
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; propranolol and xanax; been on a ton of crohn's meds; praying to get through each day.


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 3/11/2009 4:47 PM (GMT -7)   
sammies...

I was fortunate in that I haven't had much of any disease activity in my small bowel. I did have to go back to the hospital about a week after being discharged. I had developed a lot of abdominal pain, and there was a small blockage forming. I had to have a "NG" tube (the tube that goes down your nose into your stomach) in for about 5 days, and i felt like i was having the life sucked out of me. That part was harder than the initial recovery period. The blockage resolved in about 6 days, and they sent me home the next day. The docs think that the problem was due to adhesions from where the small intestine settled, and that it jsut worked itself out since I was put on liquid diet and had the tube in my top end to remove any pressue on my small intestine.

In addition, I had a lot of skin/tissue removed in the anal area, due to all the damage from fistulas. In order to help the wound heal faster, my plastic surgeon ordered a "wound Vac". It helped the skin heal much faster than traditional "packing" would have. Maybe you can ask your doctor if that is feasible for you. The Vac was just a little device smaller than a shoebox (about three inches thick, and 5 x 8 in.).

Good Luck. I hope you find that it was the best possible solution, and that you now have many happy, healthy years ahead.
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/11/2009 6:33 PM (GMT -7)   

sammies,

I understand what you're going through and am here to tell you that your wound WILL heal and the gas pain WILL go away. You're only 2 weeks post-op, so try to be patient (I know it's hard) and have faith that everything will get better.

As with any surgery, it takes about 6 weeks to start feeling somewhat normal again, so keep reminding yourself that this is temporary, and you'll be feeling really great soon! :-)


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.

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