No One Tells You What to Expect Post Colectomy.

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suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/18/2010 2:13 AM (GMT -6)   
No one tells you before you have a total removal of your colon and a J Pouch what to really expect down the road post surgery. I am 13 and 11 years post op after two major surgeries since the first surgery was botched. I am finding the more time passes since then, the more complications seem to crop up in my life as a result. Here is something of what I have experienced as a result. I am not saying it's all post colectomy. Could be my history of Crohns also plays a role, but the colectomy, I am sure has played a major role. Your experience may be entirely different and positive. Maybe it's a crap shoot, I think. (Pun intended--ha ha!)

Briefly, I developed dysplasia in colon along with family hx of colon cancer. Had total colectomy in 97 with many complications (sepsis, near death, JPouch malformation, bowel & JPouch reconstruction, etc.). Many IBD meds later, still ended up on Remicade for four years at the highest recommended dose and frequency. Developed a horrible Psoriasis looking rash over half my body about three years into it. After I got off Remicade, two months later, the rash went away. (I sometimes wonder if all the meds don't cause a few long term effects, as well.)

It's been 13 years now without a colon. In my case, a lot of watery diarrhea still...no less than 10 trips a day to the restroom and up to 15 or more on other days. I never know what sets it off. They say the JPouch is supposed to act like a colon eventually. Not mine! Magnesium to counter the chronic dehydration only gives me more diarrhea. I still have to be aware where all the restrooms are and I get up at night between two and six times to go with numerous accidents while I sleep. I am constantly plagued by severe leg and foot cramps which also awaken me at night.

Now I have chronic kidney stones: 3 kidney stone removal surgeries for up to 6 or 7 stones at a time in just this last year! More forming. My urologist throws his hands up in the air and is sending me to a nephrologist for more tests and consultation. Also it appears like I have some kidney disease also coming into view as a result. I still have problems with absorption and the food I eat exits within a couple of hours like it went in. I ask doctors and dietitians what I can eat to maintain good function and health. I get the one size fits all answers and then they scratch their heads or look at me like I'm from Pluto when I say how those things affect me.

I work like heck to live like a normal person and maintain an upbeat positive attitude of gratitude. Exercise, vegetarian, dating as a single, social life, family, lots and lots of laughter with friends, etc... But there are complications and I have to make trips to the ER more than I would like. They always admit me due to my history and complications.

Now I am told there are multiple enlarged lymph nodes in my sacral and spine region where all the surgeries went on. Could be anything from viral to cancer. Infection has already been ruled out. It's a waiting game with more tests.

I am pretty accepting and mellow about everything...have to be or I would be a basket case by now, but I just like to see a little more research into nutritional needs, complications, side effects of being a post colectomy patient. It's a big question mark, and I have turned up every rock I can looking for more information to help myself. I have learned that just because they take your colon out doesn't mean that you get to skip away or receive a get out of jail free ticket. It's a trade-off; and it requires the utmost dedication and commitment on your part to take the very best care of yourself you possibly can with stress levels, sleep, nutrition, a balance between play and work and asking lots of questions until you find the right answers that work for you. And not letting the medical establishment intimidate you. Be kind and forgiving of yourself and your body first and foremost.

No one ever said life was fair though. Maybe we just always get what we really need in order to learn, grow, and find our way back to the Light and be of service to one another. I have learned there is still lots of joy filled life left after a total colectomy and illness; in fact, maybe because of it, I am often surprised by the joy and appreciation of the life I have.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3069
   Posted 10/18/2010 5:50 AM (GMT -6)   
suzi322~welcome to the forum. I am sorry to hear you have been dealing with all of that for so long! I am also surprised that your doc's recommended a j-pouch for you...it is usually not recommended for Crohn's patients. Have you considered a ileo instead?

Have you tried Metamucil WAFERS...they tend to work better (from what I understand) for j-pouchers than the other forms. Imodium can help slow things down, too. My understanding is that chronic dehydration with cause kidney problems. There are other stronger med that can help with dumping...has your doc suggested any of them? Have you considered a second opinion?

You should post your story on the Ostomies forum here...there are many living with j-pouches and have great knowledge of them. You could also check out www.j-pouch.net for help.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/18/2010 11:11 AM (GMT -6)   
Hi, thank you for your advice! I have had two ostomies (temporary). I have to say that it was difficult for me, especially as a single person wanting to be in a relationship. I prefer to have the J Pouch over the ostomy, if that makes sense. They did not discover I had Crohns until after the J-Pouch. I was diagnosed with UC until that point.

I have also taken Metamucil before...it only increases the gas factor which is a significant problem when you are within earshot of others. I do use Imodium a lot and have for years, but it does not solve the problem and creates some others. And until you mentioned it here, I did not realize the term for what I do is called "dumping". ha ha! So I am surprised my doctors never alluded to that.

I have been seeing one of the top doctors in the IBD field at Cedars-Sinai in LA for years. Now that I live in the Pacific Northwest, I was referred by Cedars doc to someone tops in the field here at Oregon Health Sciences University Med Ctr. No one is really recommending much of anything, and I suppose I have just learned to consider it as part of my daily life. But sometimes I have to admit that I get a little tired of dealing with it all the time, especially when answers aren't forthcoming for the long haul.

suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/18/2010 11:13 AM (GMT -6)   
By the way, yes, I will check out the ostomies forum!! Thank you!

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 10/18/2010 2:53 PM (GMT -6)   
I have been seeing the docs at OHSU for 10 years.  Then this summer they referred me to the GI motility clinic at Cedars Sinai in LA.  I hope the docs in Portland have been able to help a little.  I was pleased with the people I saw in LA, they were able to diagnose, just not treat, I have to do that here in my hometown and up @ OHSU.
I do hope things will get better for you and I hope the docs in Portland will have some answers for you!!!
Anne

krw135
Regular Member


Date Joined Mar 2010
Total Posts : 183
   Posted 10/18/2010 3:38 PM (GMT -6)   
Hi Suzi...Are you my long lost twin?!? Your story sounds too familiar! Ever since my total colectomy (for UC- now its Crohns) my health has gone DOWN hill! THe first few years were pretty good, but after about the 2 year mark things got bad. I have not had kidney stones or urinary issues but I have had some majot female issues. From my ovaries, tubes and cervix. not fun stuff. As far as the diarrhea goes...10 times a day is average for me too. and it is never solid. I do take Lomotil which seems to help some, but still at 10 times a day its obviously not helping much. THe nights are awful, the gas pains get so bad it wakes me up and I have to go sit on the toilet, it sucks:( I hate it. I am so sorry you are going thru all this too, but selfishly I am glad I am not alone:(
I am a 29 yo female, Dx with UC in 97, hospital stays monthly, tons of blood transfusion, bowel rest on TPN, prednisone, asacol, sulfa, imuran, VSP
99- multiple failed remicade treatments, more hospital stays
finally in 2001 had enough and had total colectomy (j-pouch) surgery, 1st step was good, then the reversal was not such a breeze, got peritinitis which was awful!!
the rest of 2001-2006 were amazing!
now having problems again- they are thinking Crohns.- have been on Humira with no luck

suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/18/2010 4:06 PM (GMT -6)   
Anne: Just curious, did you see Dr. Pimental in the motility clinic at Cedars? I have been there a number of times. He is very nice, but I dealt with him when he was a resident at the VA Hosp in Wadsworth LA, and he was a bit of an upstart then and gave me a little grief. He has mellowed out considerably. Anyway, I think it is most uncanny that we have exchanged hospitals. They are very good down there, actually, and I am happy you had good results!

krw135: Wow! We do have amazingly similar stories! Comforting to know we are not alone! And I know exactly what you are going through! I also female issues prior to and during the the surgeries, which has all been surgically removed. I think that after I die, they are going to open me up and say, "There's nothing left in here!" LOL

Suzi

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 10/18/2010 8:31 PM (GMT -6)   
suzi322: No, my Dr. @ OHSU wanted me to see Dr. Pimental but he is no longer taking new patients so I saw several of his colleagues whom he has trained, Dr. Chang, Dr. Soffer, and radiologist Dr. Bray. They were all good and definitely knew what they were talking about! It was a good experience, since there really are no GI motility docs in Oregon!! Or at least no clinics that specialize in motility issues.
Who do you see @ OHSU?

Anne

suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/18/2010 10:05 PM (GMT -6)   
Hi, Anne: Dr. Bray is one of the top radiologists around. He has done my scans many times. He knows his stuff! I did not realize that there were no motility specialists in Oregon! By the way, Dr. Eric Vasilauskas in the IBD Center was my doctor for years. He is the associate clinical director and researcher of IBD. He referred me to Dr. Judith Collins up here at OHSU in the digestive disease center. He also said I could fly down there to see him whenever I wanted. Don't know if you are familiar with him, but he is also pretty well known around the country. You can't hardly get into see him as a new patient though.

Suzi

AKTeach
Regular Member


Date Joined Sep 2005
Total Posts : 83
   Posted 10/19/2010 10:16 AM (GMT -6)   
I don't know Dr. Vasilauskas, but Judith Collins is my doc at OHSU and she referred me to Cedars!! What a small world!! I really like Dr. Collins, but she only does office visits on Mondays and she sometimes takes forever to get an appt. with.
Hope you enjoy her as much as I have. I go to Dr. Kim Lu @ OHSU also, he is a colo-rectal surgeon. He has worked on a stuborn fistula ( we can not find )for years!!
And yes, Dr. Bray is a wealth of information, I could not believe his knowledge of Crohn's and all that goes with it!!!
Anne

suzi322
New Member


Date Joined Oct 2010
Total Posts : 7
   Posted 10/20/2010 1:33 AM (GMT -6)   
I have been seeing Dr. Collins for several years now. Apart from the usual stuff due to the J Pouch surgery, the Crohns has been quiet, so that has been the least of my problems. And Dr. V at Cedars said that I have an atypical kind of Crohns. They had a conference where my case came up and it was determined that it starts from outside the bowel and moves in. I thought this was really weird and questioned him a couple of times on it. He confirmed it. Problem has always been that other doctors would do a scope and not see anything and send me to a psychiatrist who would send me right back to them. Cedars Sinai got to the heart of the matter! I thought I was going crazy, too!

Don't know if anyone has ever heard of this sort of thing.
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