When to get the "surgery"?

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Regular Member

Date Joined Jul 2009
Total Posts : 83
   Posted 1/28/2010 3:16 PM (GMT -6)   
Hi all -
I'm cross posting from the Crohn's board; someone there mentioned I may also find help here.
My doctors have discovered that I have at least three active fistulas (cutaneous, rectal, and RV); they are partially draining, but clearly not enough as they have formed an anal abscess. I was all set to begin my Humira last week, but had to put that on hold due to high WBC indicating an infection (thus how the abscess was discovered).
For background, I have a lot of peri-anal issues (anal fissure last year, multiple skin tags, lots of rectal inflammation, and now the fissures). Now, as a next step, my GI, in conjunction with a colo-rectal surgeon I saw for a consult, are recommending a temporary ileostomy to allow the rectal region to completely heal.
I have been very lucky in not needing any surgeries related to CD during this time, so the thought of having this major surgery is freaking me out. Has anyone else experienced this and taken it as a next step?
I am even more upset because I am getting married in September and I don't know how this will affect that. But at the same time I don't want to continue to be on prednisone and be sick all the time. I have been on prednisone since Feb. 2009 and am still on a dose of 30 mg a day, and I've gained 25 pounds since starting on it too. I hate that drug!
Here are some of my recent blood stats - all indicators of an infection (the abscess):
WBC - 14.2 (high)
Neotruphils - 12794 /90% (high)
Lymphocytes - 824 (low)
Any similar experiences that can be shared would be much appreciated.

**32 year old female; Diagnosed with ulcerative colitis in 2001; diagnosis changed to Crohn's disease in 2009
**Asacol (4000 mg daily), 6-MP (100 mg daily), Prednisone (30mg daily...for now), Nexium (40 mg daily), Flagyl (500 mg daily), Sulfasalazine (1000 mg daily), and getting ready to start Humira
**Thankfully only two major flare-ups...2001 and 2009. Hoping to have another 8 years in between the next one (sadly, I do know there will be a next one).

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 1/28/2010 8:07 PM (GMT -6)   
I didnt have Crohns, I HAD uc (i love to say that!) and i had it for 8 years, 8 wasted years, before i had surgery.
And i know its scary, i had even gotten to where i wished i woudl get toxic megacolon so i wouldnt have to make the decision myself!
But that didnt happen, and i decided to go ahead and have surgery and get my life back. I just wish i had done it 8 years earlier. Its been almost 3 years since surgery and i am of course, med free (no more pred!) and healthy and happy. I do whatever, whenever eat whatever wear whatever.
I dont see how if you have surgery now that it would affect your wedding, unless your gown is just skin tight, or has a see through stomach panel, lol.
Anyway, like i said, i know its scary,but its sooo worth it!
Why are they just sugggesting temporary, instead of just going ahead and doing a permanent one?
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-

Regular Member

Date Joined Jul 2009
Total Posts : 149
   Posted 1/28/2010 11:02 PM (GMT -6)   
Hi Bookgal!

I also had (it does sound nice to say that summerstorm!) UC since 1999 and now have a temporary ileostomy. I have had it since October and am awaiting my reversal next week. I can't tell you how thrilled I am that I had the surgery. That colon of mine gave me issues for years! You have been on Prednisone for nearly a year so I can only imagine what it is doing to your bones:( I also took it for long periods of time (I think 6 months was the longest and I am still suffering from the side effects). I was also taking 6MP as you are along with Lialda for maintenance but wanted to be done with all of that...I am happy to say that I am med free, except for an iron pill that I take cause I run on the low side. Having had this surgery was the best decision I ever made. I am so thankful that I haven't had any major complications. A lot of people are typically happy with the outcome of this surgery. The only thing is that the recovery period is tough. I felt okay after 4 weeks and better after 6. I think it's a good idea to have surgery before you get married so that you can enjoy your wedding and not have to worry if you will be sick or not! Best of luck!
Darlene "Nutz"
Diagnosed with Ulcerative Proctitis 1999, changed to Ulcerative Colitis 2002.  J pouch surgery Oct 5, 2009

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 1/29/2010 7:20 AM (GMT -6)   
Welcome Bookgal,

I can completely relate to your situation, because I went through the exact same thing. I had Crohn's in the colon and rectum and had a RV fistula that turned into an abscess. My GI referred me to a colorectal surgeon, who said, upon looking at my rectum, "We need to take your colon out." I was mortified.

Even though I had been sick and taken meds (like Prednisone, Asacol, 6-MP, and Remicade) for 7 years, I was scared to have surgery and a permanent ileostomy (mainly for vanity reasons). She compromised with me and said that she could do a temporary ileostomy and reverse it after 6 months, if my colon and rectum healed. I was not excited about the idea, but agreed to it.

For me, the surgery was not that bad. The worst part was not being able to eat until my small intestine woke up, which took 10 days (much longer than normal). They kept me on IV fluids and nutrition during that time, so it was okay. I didn't know to walk a lot after surgery to wake the bowels up, so had I done that, the ostomy probably would have started working much sooner.

Once it started working, I was able to eat and was released from the hospital. The first thing I noticed was being able to sleep through the night for the first time in years. I used to have 20+ trips to the bathroom a day, and after having an ostomy, I only went to the bathroom to pee. I loved the freedom that it gave me to shop for groceries or clothes and not have to beeline it to the bathroom several times. I found that I could eat pretty much whatever I wanted without being in pain or "paying the price" for eating something spicy. It was great!

I went back to work full time and exercised several times a week. Even went to a waterpark with my nephews! I felt healthy again, like I did before I ever got sick, and honestly, it didn't take me that long to forget that I even had an ostomy! It was so hidden under my clothes that nobody else noticed that I had one either.

It didn't bother my husband in the least. He was so happy that I was healthy again. I remember him saying, "I don't care if your whole body is in a bag, as long as you're healthy!" You gotta love that! :-) Our intimacy has improved dramatically, too, because I did not feel like being intimate when I was sick. I've always liked nice lingerie, which is good, because it covers my stomach area, and I wear it for me, not him.

So after 6 months with the temporary ileostomy, I started bleeding from the rectum. My GI did a colonoscopy, and the disease was active and worse than ever, even though I wasn't using my colon or rectum. That was when I made a list of pro's and con's to making the ileo permanent and having a proctocolectomy (colon and rectum removal). When I put down that I was at an increased risk for colon and rectal cancer if I did not have the surgery, I started crying, because I knew that I had to do this to save my life. I called the surgeon the next day and told her that I was ready to have the surgery. It was the best decision I've ever made and have not regretted it for one second.

Once I got the disease out of me, I felt fantastic! I have not taken any medication in 4 years, and the disease has never returned. My GI said that it probably never will, since it was never in my small intestine in the first place.

As with any surgery, you will need 6 weeks or more to recover and get back to your normal activities. If you have the temporary ileostomy surgery fairly soon, you will feel great for your wedding in September. The proctocolectomy surgery was much more involved that the temporary ileo surgery, but even with that big surgery, I was out of the hospital in 4 days and out driving and shopping after 2 weeks.

Sorry this was so long... but I wanted to try to cover some of the things that you might be questioning. I did not know about this site when I had my surgeries, so I had nobody to talk to, except my doctors, and none of them ever had Crohn's or an ostomy, so they didn't know what it was like to go through this.

I'm wishing you all the best with your decision and please feel free to ask us any other questions you may have.

Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.

Scott Crohnie
New Member

Date Joined Jan 2010
Total Posts : 16
   Posted 1/29/2010 10:13 AM (GMT -6)   
Hi, I am in a similar situation to you in that my rectum and colon are badly affected by my Crohn's and I also have active fistulas. I will be going into hospital on Monday to have proctocolectomy. I believe the surgery will be worth it to finally get rid of the pain and problems of my Crohn's especially the fistulas which are horrible things. I have had surgery before for my Crohn's a resection op in 2000 and then I had temp colostomy in 2001 which I still have at present so have an idea what to expect from this op. It took me a good 6 weeks or more to recover from the resection operation and it was pretty sore but you will probably be like me and be used to a fair bit of pain due to the Crohn's. For the temp colostomy the surgery was not as bad and I was back on my feet pretty quick. It does take a good while to adjust to having the stoma but not having to worry about where the nearest toliet is etc. was such a relief.

Veteran Member

Date Joined Jan 2006
Total Posts : 768
   Posted 1/29/2010 11:47 PM (GMT -6)   
Welcome bookgal77,

I am looking back over 7 years of pain and torture from fissures, skin tags, and rectal inflammation. I took every med. and hated life. Finally they found cancer cells in the rectum and their were no choices. Colon gone, bum shut, pouch attached.

If I'd just had surgery and let everything heal things might be different. You never know but why not give it a shot? You'll feel great by Sept. back to working out and eating healthy. And then they'll reverse it and you are far better off than suffering for so long

Good luck with it all. Lots to think about. I know it took me years to make the decision, but everyone here helped.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009

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