Finally had reversal of ileostomy but have a few concerns

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Stacey4127
New Member


Date Joined Nov 2009
Total Posts : 16
   Posted 5/26/2010 6:57 PM (GMT -6)   
I have been a member of this forum for a while now and the information that I have gotten has helped me greatly. Thank you all for sharing your stories and helping so many people with so much information. I don't post much, but I wanted to share my experience with everyone and I also had a few questions. I had a subtotal colectomy in December for Colonic Inertia.

My surgeon is wonderful, but I ended up having a few complications from the surgery. I had the surgery, my small intestine was re-attached to the very small portion of the colon that was left. A few days after the surgery my fever went up to 104 and I began to hallucinate. My intestine perforated (sp) and I had to have ER surgery to clean the infection out of my abdomen as well as place a temp ileostomy. I was in the hospital for a month.

2 months later I was scheduled for the reversal, went into surgery and when I woke up the ileostomy was still there. My small intestines had a stricture and the reversal was unable to be done. The surgeon had to dilate my small intestines. Needless to say I was very upset about this, but I knew that the surgeon was doing what was best for me.

I just got out of the hospital 2 weeks ago, my surgeon performed the reversal of the ileostomy, but he also had to go in and clean adhesions off of my intestines and abdomen, so he could not do it by scope, he had to cut me open.

I feel this recovery seems to be the hardest. The pain has been the worst and my platelets and reticulocyts are high and won't level out. I am scheduled to see a hemotologist and I am wondering if anyone else has ever had this problem after reversal? As for going to the bathroom, I guess I got lucky in that area because I only go between 5-7 times a day. I know that some go 20+ a day. I still find it painful to go to the bathroom though even to push in the slightest way. I have extreme gas pains, is this normal? No matter what I eat the gas pain is horrible? I walk 2-3 times a day around my neighborhood and walking does seem to help some. I just wish I could get to some kind of normalcy. I know it is not going to happen overnight, but I am just feeling a little depressed, but I am happy I can go to the bathroom now.

I guess I just want a normal life and I am getting impatient......thanks for listening.

Stacey
1994 - exploratory laparoscopy
1998 - emergency laparotomy ovarian cyst
1999 - emergency laparotomy removal of left ovary and endometriosis
2000 - total hysterectomy - laparotomy
2001 - laparotomy removal of mass which was adhesions
2001 - laparotomy due to complications of previous surgery
2003 - laparoscopy removal of adhesions
2006 - laparoscopy removal of adhesions
2009 - 12/17/09  laparospic subtotal colectomy with anastamosis and removal of adhesions
2009 - 12/26/09 - open laparotomy due to leak from subtotal colectomy - ileostomy placed
2009 - 3/2009 [ REVERSAL SCHEDULED] - Reversal cancelled due to stricture of intestine. Reversal date has now been pushed to June.


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/27/2010 7:09 AM (GMT -6)   
It sounds like you've been through a lot recently...glad you had your reversal!

Have you mentioned the pains to your doctor?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/27/2010 7:18 AM (GMT -6)   
You have had your fair share or complications but are not alone, many have complications following this complex surgery. Oh, and some people's physiology makes them more prone to adhesions than others.

The gas pain is normal but you might try looking at your diet for relief. I kept a food log and found that anything with wheat in it caused my severe gas. I eliminated all wheat products for about 6 weeks and slowly added them back. Other foods to look at are complex carbs, dairy, etc., all gas producing foods. Keep walking!!! It will get better but be patient.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 5/27/2010 3:04 PM (GMT -6)   
Hi Stacey, My story was similar to yours but the other way round.Had surgery in jan 09 for 4 small sticture in the small bowel I had my ileo reversed along with having scar tissue removed, then had complications got peritonitis a week later and had to go back down to surgery ended up in hospital for 3 weeks finally got home then had an infection and ended back in on antibiotics I too felt like it was never ending the gas pains were painful but 6 weeks later I haven't felt better hang in there it will get better and you will have a normal life. Bev x wink
Diagnosed with crohns at 13 now 43
Meds: Iron syrup,Loperimide,Folic acid & Citalopram 30mg (for Anxiety.)

" I may not be there yet, but I'm closer than I was yesterday."


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 5/27/2010 3:42 PM (GMT -6)   
Stacy,   Yup, I have  a lot of problems with gas too, dont strain to poo just let it come naturally.  I still get cramping in my sm intestine after I eat, don't know if it will always be this way or maybe it just takes time to  work things out. I have had a total colectomy in Feb of this year so only 3 months post op so,  its to early to tell.
 
But life is a lot better now than before, so I hope that you do well and we are all praying for you...
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


Stacey4127
New Member


Date Joined Nov 2009
Total Posts : 16
   Posted 5/27/2010 9:58 PM (GMT -6)   
Thank you all for your kind words of encouragement, I really appreciate it. It makes me feel better to know that I am not going crazy. Thanks so much for being here to listen, it means a lot.

Stacey
1994 - exploratory laparoscopy
1998 - emergency laparotomy ovarian cyst
1999 - emergency laparotomy removal of left ovary and endometriosis
2000 - total hysterectomy - laparotomy
2001 - laparotomy removal of mass which was adhesions
2001 - laparotomy due to complications of previous surgery
2003 - laparoscopy removal of adhesions
2006 - laparoscopy removal of adhesions
2009 - 12/17/09  laparospic subtotal colectomy with anastamosis and removal of adhesions
2009 - 12/26/09 - open laparotomy due to leak from subtotal colectomy - ileostomy placed
2009 - 3/2009 [ REVERSAL SCHEDULED] - Reversal cancelled due to stricture of intestine. Reversal date has now been pushed to June.


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/30/2010 5:32 PM (GMT -6)   
go easy on food. you may have a bit of post-op ileus left. good luck. rosemary
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