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time for my next surgery...please share your experiences, whose had their whole colon removed?

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Posted 2/28/2008 8:32 PM (GMT 0)
well, i have had my temp. ileostomy for 10 months, things aren't as better with the fistulas as we had hoped, so I will be having a few more setons placed, to help with the inflammation/infection, so that the healing process will be quicker for my next surgery.

The doc is going to take out my whole colon/rectum/anus. I will be left with the ileostomy forever, which is fine with me, as long as my rear can heal for good. I know things could spread to my yet unaffected small bowel, but for now, this looks like it will be the only solution to a long and winding road of dealing with fistulas over the years....

i know of at least 2 ladies on this site who have had the same type thing done, and it seemed to work well for them.

Would anyone else who has also had the same surgery chime in with their experience regarding it all?

i would really appreciate it since I am feeling pretty grim about the whole situation!!!!!

please, the more details, the more helpful you will be. How long did it take to heal up completely on the bottom end, did your doc stitch you up down there or did he let it heal more slowly?

According to my colorectal surgeon, he will need a plastic surgeon to assist since I will need a skin flap/patch from a healthier area to be put in the rear area to give them more skin to work with....

I knew the temp ileostomy was a change, but this is a more serious change and completely permanent....

I hope to hear from you all soon...

Nat aka Gladbag - from California

skull :-) sad eyes redface devil cool nono smurf tongue confused
Posted 2/28/2008 9:25 PM (GMT 0)
bump...

anyone?...wow, I know I am stressed since I am bummed I haven't got a reply on this topic....it's only been a few minutes.

one of those days i guess.
Posted 2/28/2008 11:02 PM (GMT 0)
Glad,

I had everything removed when they did my surgery for my perm. ileo back in '84. I didn't have a lot of colon left at that point, and I had several more feet of small removed as well as the rectum. The surgeon stitch the bottom area closed at the time of the surgery. Yeh, it was pretty dang uncomfortable but I've never had any problems with that area at all since it healed. That is the most important thing. And my CD (and internal fistula) have never raised their head since I had surgery.

I had one drainage tube in my abdomen, also on the right side. I was extremely UNDERweight (82 lbs) and had a lot of difficulty sitting for a long time with no padding on the bottom. Others haven't seemed to have a lot of trouble with that tho. I slept on my left side for a long time for the same reasons too. I think if I would have had more weight on at the time, I would have been more comfortable.

Any other questions for me?
Posted 2/28/2008 11:16 PM (GMT 0)
Peggy,

Thanks so much for getting back to me. I take it you didn't have any fistulas that reached to the exterior skin then? I have many and that is why I am worried about the healing process since they will have to take so much of the tissue out in that area, since it has been ruined by fistulas for so many years....

even though your situation sounds a bit different, it sure sounds hopeful. Thanks again.

:0)

Nat
Posted 2/28/2008 11:29 PM (GMT 0)
Glad,

YW.  I hope flchurchlady posts cuz I think she could share some info with you.

No, I didn't have any that made it to the exterior. 

Did you say when you were going to have your surgery?

 

Posted 2/28/2008 11:35 PM (GMT 0)
well, first (in the next month or so) i have to have some more setons put in a few of the fistulas, to help bring down the infection/inflammation in the area.

after that, I will probably have the operation about three or four months after later.

no vacation to Cancun this summer, boo-hoo!

I would love to hear from flchurchlady too, or anyone else. it never gets old, even if I have heard about this before, I just need a little refresher for my head today....
Posted 3/1/2008 1:04 AM (GMT 0)
Hi Gladbag,

 

Having my colon and rectum removed completely took care of my fistulas, abscesses, and Crohn's related problems. It has been wonderful!

 

My disease was also confined to the colon and rectum. My GI told me that since I never had Crohn's in the small intestine, that there's an excellent chance that it will never show up there. I've been disease-free since surgery and do not have to take any maintenance meds.

 

I also had the temporary ileostomy done first and had it for 8 months before deciding to make it permanent and have the proctocolectomy. The ileo and stoma stayed the same, so that was good.

 

The incision on my stomach is about 8" long, and surprisingly, it was more painful than having the rectum removed. It mainly hurt to use my stomach muscles to get in and out of bed. My surgeon left the rectum wound open, and I packed it with saline-filled gauze twice a day to keep it from getting infected. It was not a big deal.

 

It took about 9 months for the rectum wound to completely heal up. My surgeon said that I was a slow healer, so it shouldn't take that long for you. I could sit comfortably and drive a car only two weeks after surgery. My dad went into the hospital after my surgery, so I was motivated to get out of the house and visit him.

 

I know it's a big decision to have the proctocolectomy and make the ileo permanent, but, in my opinion, it's totally worth it and was the best decision I've ever made. I am 100% healthy now and have no Crohn's anywhere. For me, surgery has been the closest thing to a cure, and it's been an absolute miracle to have my health back again.

 

If you have any other questions, please feel free to ask. :-)

 

Cecilia

Posted 3/1/2008 1:47 AM (GMT 0)
glad, i know this is ur post for u to get some answers, but i have a question for u and cecelia.

I had my temp ileostomy done in order to hopefully heal my fistulas as well. It never occured to me that there was a possiblility that this may not happen (i'm not really realistic when it comes to my crohns). So my questions for u and cecelia are how long did u guys have ur fistulas before getting the ileostomy? And how long did you have ur ileostomy b4 it was determined that it didnt work? Was it just b/c they never closed? or because they were still painful?

I'm still experiencing some pain, not nearly as much as i was in b4 obviously. I was just hoping that this was b/c i've only had mine for 1month. Guess that was wishful thinking :o/.
Posted 3/1/2008 3:09 AM (GMT 0)
flchurchlady--how long ago did you have your perm. done? I've been in remission for 2 years so far and I love hearing about other crohnies that have even been in remission longer--it gives me hope!
Posted 3/1/2008 1:42 PM (GMT 0)
Glad,
Can't speak for myself but my girlfriend had anal fistulas that went to the outside and after her permanent ileostomy she has never had a re occurence of Crohn's. Hers disease was also located in her colon and rectum and it's been 10 years and she says she wish she would have had the surgery sooner. She had Crohn's since she was 16 and problems with fistulas since her diagnosis, she was 30 when she had her surgery and at 40 she says that she feels so much better.

Hope that helps.
Posted 3/1/2008 6:53 PM (GMT 0)

Glad,

I have been disease free since my perm ileostomy in 1984!  My CD was in my rectum, colon and small intestine.

Posted 3/2/2008 5:04 PM (GMT 0)

Praying and Jen,

I had a r/v fistula for about 4 years before my temporary ileostomy. The main reason why I got the ileostomy was because the fistula caused an abscess on my right butt cheek. It was the most painful thing I had ever experienced. I had to have it surgically opened and drained. The wound had to be left open to heal and packed with an antibiotic liquid filled gauze several times a day.

Since it was so close to my butt, and I had D about 20 times a day from the Crohn's, the doctors said that I had to bypass my colon with an ileostomy to let the abscess wound heal without getting infected. I had setons and drains placed in the other fistulas, and they hurt all the time, because they were on my butt right where I sit.

After 8 months with the temporary ileo, my colon flared up, even though I wasn't using it, and I started bleeding nonstop from my rectum. It scared me and made me realize that this disease was not going to go away on its own. So, I decided to have my diseased colon and rectum removed and keep the ileo, making it permanent.

That was in October '06, and I have been disease-free and fistula-free ever since. I have no regrets about having the surgery, because life without Crohn's is great. Hope that helps answer your questions.

Cecilia

 

Posted 3/7/2008 12:30 AM (GMT 0)
Thanks guys!
Posted 3/7/2008 12:36 AM (GMT 0)
Nat,
Do you have a date set for the surgery yet?
Posted 3/7/2008 1:11 AM (GMT 0)
nope, first i get some more setons, for a few months, so that the fistulas and inflammation can go down, or else my rear "would never heal" said, the doc. Then I'll probably have the big surgery in about four months or so....who knows, i have to wait and see.
Posted 3/7/2008 5:36 AM (GMT 0)

Hi,

 

This is my first post but I have been a member/lurker for quite a while.  I had a proctocolectomy w/permanent ileostomy done in Sept. 2005.  I also had a sub-total colectomy w/anastomosis in 1997 (was done as emergency as my bowel perforated due to obstruction - also had gall bladder removed as I knew I had gall stones).  I was diagnosed at age 19 w/Crohn's in 1980 (I am now 47).  In 1981 I had my first fistula followed by many more over the ensuing years...some of the smaller ones did heal...I had to have incision and drainages done on nine big fistulas over time - most of them anal/rectal and some recto/vaginal.  None of them healed shut...my bottom was like a piece of mesh.  I opted for the proctocolectomy (also had total abdominal hysterectomy at the same time due to the "mess" from scarring over the years).  I do NOT regret having the surgery...as flchurchlady stated, I also had to pack the rectum with gauze...mine took about 7 months to completely heal but was really only uncomfortable for a couple weeks.  I am still having problems due to adrenal gland function, or lack thereof due to the long term pred. use.  BUT...all my fistulas healed up within a few months...what a relief!!!  I am still thankful every day that I no longer have to deal with the pain and mess they caused!!  Glad Bag, I have followed some of your posts here and on the Crohn's forum...I appreciate your sense of humor and can relate about the fistulas.  I hope for the best outcome for you!!         

Posted 3/7/2008 7:00 PM (GMT 0)
Thanks Nenagirl!
Posted 3/8/2008 2:42 AM (GMT 0)

Nenagirl,

If you don't mind my asking, you mentioned adrenal issues due to long term pred. use.  Will you please explain a bit.... symptoms, treatment, etc.  

Thanks in advance.

Posted 3/9/2008 1:18 AM (GMT 0)

Hi Peggy - I had been on prednisone since 1980 - usually 5-10 mg. per day to maintain remission from Crohn's and at times more during a flare but I was always able to come back down to a maintenance dose until 2001...from then until my surgery in 2005 I was taking 20 mg./day just to maintain but by that time more of my day to day problems were from the fistulas and constant draining.  When I did have the 2005 surgery, I was taken off all meds.  It was a "wait and see" case.  I had problems feeling greatly fatigued and dizzy to the point of fainting..generally feeling crappy, weak and shaky.  Gastro sent me to endocrinologist who dx me w/adrenal fatigue.  They said my adrenal gland was not "waking up".  During this time I also had a very hard time maintaining hydration even though I was drinking gatorade by the gallon.  My surgeon was concerned it was because he had to remove more of the ileum that originally thought..to preserve as much as he could he positioned my stoma on my left side.  He told me after surgery I may need to "hook up" at night if I couldnt stay hydrated on my own.  So some of my symptoms pointed to not being hydrated AND some indicated the adrenal problem.  Endo dr. put me on 15 mg. pred./day and very slowly brought me down.  I still have to take 5 mg./day but that only brings me to a "normal" level....a cortisone test shows my adrenal is able to produce about 2-3 mg./day so supplemented w/the oral 5mg. puts me in a normal range of about 8mg./day.  I also resumed taking Imuran a few months after surgery - per my gastro dr.  So I take 100 mg. of that daily (down from 150 mg./day pre-surgery).  I am still dealing with fatigue and shakiness at times...I think my level of hydration fluctuates greatly.  On the other hand, I have never had a problem w/my stoma or my appliance (I use a 2-piece from hollister), also I can eat most anything, I just make sure not alot of fiber at one time. I am glad I had the surgery and I'm sure the drs. will get me back in alignment - like fine tuning a motor, lol!!  Thanks for the interest,

NG             

  

Posted 3/9/2008 2:29 AM (GMT 0)
Ahh Been there, done that. Oh wait, still doing that. I had the fistulas actually before i lost my colon. But the doc said the same thing when putting in the setons, that my butt would take forever to heal if the fistulas were still there. Well they removed the rectom and my butt still isn't healed. The surgery for that was back in Novemeber, but the wound did get infected and was opened again. Basically the wound needs to be packed twice a day. I can't remember exactly but i think i remember my sugeon giving it around 6 months to heal. Kills me that they had to make another hole to close the original hole. What the?!? My fistulas never really made the outer skin, just the anus. Yeah, just the anus. haha Ugh. No, seriously folks. Anyway, the setons bothered me more than the open would on my butt. In a way i was glad to get it over with. Just one more thing i didn't have to worry about later. Now if the wound ever heals that would be great.
My colon was gone in August 2006. The rectum was taken last November. They went through the same incision they made when taking out my colon, and also made the new one in my rear. It still drains, but seems to be getting lighter. At least thats what i keep telling myself. I can't imagine have both those surgeries at the same time, since they both hurt in their own ways.
More power to ya Glad. Keep your head up. It may take a while but it DOES get better.

I think i'm actually more upset about the Patriots losing the Super Bowl than i am losing my rectum.

But thats just me. I had no use for my rectum anymore.
Posted 3/9/2008 2:31 AM (GMT 0)
Nice to see you back, Slice!
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