Need some comfort/help - not a candidate for J-pouch? Can only have Colostomy bag?

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UC Wife in MD
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Date Joined Aug 2007
Total Posts : 63
   Posted 2/12/2008 2:32 PM (GMT -6)   
So my husband has been struggling for a year now with 3 hospitalizations because he's become so anemic, weak and prednisone dependant.  Tried everything, remicade etc. and nothing with send it into remission.
 
We are seeing a new GI dr. and he just told my husband that he's not a candidate for the j-pouch surgery because the colitis is in his rectum?  If he got any surgery then he would have to have a colostomy bag.
 
I thought I saw that you can have the surgery and just have mild enemas if you have irritation.
 
I was not expecting that news...obviously I read his colonoscopy report wrong...I thought "normal Mucosa in rectum" mean't everything was fine there.  So I am completely devastated (scared).  How will this effect his life?
 
I'm sorry if this seems a strange and personal question....how does sex work with the bag?
 
I'm just really upset because I finally had convinced him to consider surgery and he's totally on board with it now, but now this news.
 
 
 
 

Post Edited (UC Wife in MD) : 2/12/2008 1:43:08 PM (GMT-7)


ks1905
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Date Joined Sep 2005
Total Posts : 5162
   Posted 2/12/2008 3:09 PM (GMT -6)   
There are many GIs that know very little about J-pouches..... I would suggest a consultation with a well-respected surgeon.

I wouldn't be surprised if the GI was incorrect.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 2/12/2008 3:22 PM (GMT -6)   
From what I know of the j-pouch surgery, the rectum is removed along with the rest of the colon. So what your GI said doesn't make sense to me. I'm scheduled for surgery in a about a week or so, and I'm having my entire colon/rectum removed and set up for the j-pouch. ks is right, schedule a consult with a good surgeon and see what he/she has to say. As for sex with a bag...I'm still trying to figure that one out myself...guess I'll know a few weeks after the surgery when I heal up a bit. Good luck to you and your husband!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February)

Meds:
Remicade 7 infusions (no more!)
(Per Day):
Prednisone (30mg taper)
Asacol 8 (Ran out and waiting for refill...actually improving off of it...hmmm)


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 2/12/2008 3:55 PM (GMT -6)   
Your husband's GI is so WRONG it's embarrassing!

First, the GI NEVER determines the type of surgery. It's only his job to recommend surgery when all medical treatment fails. The standard surgery for UC is jpouch surgery. It involves removing the entire colon and rectum. A pouch is created with about 6-9" of small intestine which then, for all things considered, acts as a new rectum. If your husband is contemplating surgery I recommend you consult with a top CR surgeon in your area (and probably not one recommended by your GI!!). A surgeon will discuss the options for your husband and only then can you make a qualified decision.

You can visit www.j-pouch.org to inquire about surgeons in your area.

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


dakotagirl
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Date Joined Apr 2006
Total Posts : 3402
   Posted 2/12/2008 4:12 PM (GMT -6)   
Along with all said above, I would search for soccermandy's posts. She is young, so nothing about sex, but she went waterskiing etc, with her bag - so I'm sure your hubby could do anything he wanted :)

Check with the ostomies forum for more info as well.

Best of luck!
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Aciphex, Effexor XR, Forvia and a Probiotic
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/12/2008 5:02 PM (GMT -6)   
From one UC wife to another UC wife I am so happy you came here to ask some questions. Please be sure to get in touch with an excellent colo rectal surgeon. I don't like to criticize other people's doctor but something sounds wrong just from the few posts above. This is his life (and yours) no room for mistakes here for sure!

61 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 (now UC) & hospitalized 5/07-currently heading towards a remission. Osteopena of spine from prednisone DX 8/07  Oct 07 feeling quite normal most days.  150mg Imuran  Zero mg prednisone   12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 1X day, DanActive, chewable calcium, fiber capsule 1x day, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 40 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Cortifoam enema PM, Canasa suppositiry AM, folic acid 1mg, Fosamax 1x month


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/12/2008 8:57 PM (GMT -6)   
Wow...so we just keep getting winners as GIs... (his previous GI, I strongly think is the reason he is this bad at all)

I was pretty sure he could do the J-Pouch, had done all the research and spent the last 6 months trying to get my husband to even entertain the thought of surgery. Now he's gotten so bad that he was telling everyone in the emergency room he wanted his colon out. I had printed out one of the threads I posted here about surgery and read it to him. Things seemed to be looking up and in order.

But then we hear from this GI dr. that you can't do the j-pouch if the colitis is in your rectum. We were a little surprised to say the least.

ks1905
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Date Joined Sep 2005
Total Posts : 5162
   Posted 2/12/2008 9:12 PM (GMT -6)   
This was on PBS tonight.... the topic was on a book called "How Doctors Think"
http://www.pbs.org/newshour/bb/health/jan-june07/groopman_05-15.html

I found this fascinating.... you can view the video with above link.

--------------------------------------------------------------------------------------------------------
SUSAN DENTZER: So here you are, you're one of the leading blood and cancer specialists in the country. You're at one of the leading academic medical institutions in the country, and even you have been the victim of medical misdiagnoses. What happened?

DR. JEROME GROOPMAN: Several years ago, I had trauma to my right hand. I saw six hand surgeons and got four different opinions.

The first one I saw, after doing x-rays and an MRI scan, he said, "You know, you have a hyper reactive synovium." The synovium is the lining of the wrist. I'd never heard of such a thing. I asked other colleagues, and I actually went on the Internet, and I couldn't find it. He invented a diagnosis.

So I left and went to another surgeon. This surgeon looked at every small abnormality on my MRI scan. I'm a 55-year-old man who's a tired athlete with plenty of trauma, and he said, "I'm going to fix every little thing I see with three sequential operations."

The third surgeon came zipping into the room, looked at my wrist, and said, "Maybe you have gout." And I thought, "Gout?" You know, gout on my wrist and it didn't show up on the x-ray? I said, "Well, wouldn't you have seen it, and couldn't you just put a little needle in?" And he said, "I don't know, I'll figure it out when I get in the O.R."

The fourth surgeon examined my left hand, as well as my right hand, and got x-rays of each. And he also had me clench my fist when he got the x-ray, so there was a dynamic movement in my hand. And, sure enough, one of the ligaments between two small bones had been torn. And then he did something even more remarkable. He said, "You know, I've only done a repair like this once."

And so I found a surgeon who had more experience, and repaired it, and had a reasonably good result.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Flaring since May
 
Current Meds:  50 mgs 6-mp, Colocort, Oral Cyclosporine (500 mgs)
Supplements:  None 
 


Old Mike
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Date Joined Jan 2007
Total Posts : 3886
   Posted 2/12/2008 9:54 PM (GMT -6)   
Does not make any sense to me. Are you sure the GI did not say he has Crohns in the rectum.
Or that your husband is so weak and that he has been on steroids for so long that
pouch connection is not advised at this time, but he would have a temp stoma for say
a year or so. This is often done due to the long term steroids. My son had a bag for about 3 months,
until his pouch was connected. Go to www.j-pouch.org for more a lot more info. Old Mike

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 2/13/2008 8:57 AM (GMT -6)   
Well if it's any comfort, my UC was pretty much limited to my rectum! Surgery was a success with me. I had a GI who told me I would be miserable with a jpouch and tried to encourage me to get an ostomy. Fortunately I did not take his advice.

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


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/13/2008 9:21 AM (GMT -6)   

No, my husband has just (and only) Ulcerative colitis.  I have a copy of the Colonoscopy report and it says normal mucosa in the rectum.  Last time I checked normal meant nothing wrong...as opposed to abnormal which is what most of his colon says.

Suebear, why did your GI say you would be miserable? 


MitzMN
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Date Joined Feb 2007
Total Posts : 648
   Posted 2/13/2008 9:54 AM (GMT -6)   
This misinformation just makes me want to scream!

Any more, I worry greatly for folks who don't have the wherewithal (or an advocate who does) to ferret out the truth coming from your own doctor's mouth -- who you are paying for his advice!!!!

It's just incredible to me.

I'm glad you have a place to get good information for you and your husband, UC Wife. Hang in there.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 2/13/2008 10:13 AM (GMT -6)   
Because my GIs knowlegde and understanding of the jpouch was mired in rumor and innuendo. He had never met a j-pouch patient nor ever lost a UC patient to surgery. I don't believe he was intentionally disparaging the jpouch but he certainly didn't have any information to back up his claims. Since my surgery 7 years ago I have made sure to stay in touch with him via postcards and letters touting my success and happiness with the jpouch. I believe that if he ever has to encourage a UC patient to surgery again, his opinion would be different. I have not been his patient since surgery, isn't that a successful outcome?

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


princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 2/13/2008 10:20 AM (GMT -6)   
I have been told that a jpouch would not be an option for me by my GI. He said that with my history that I would risk having more problems such as perianal abcesses or pouchitis. I figure if it comes down to surgery, then I will start with the ostomy, which you have to anyways, and see how it is. Some people get used to it, some people hate it... if I end up hating it, then I could give the jpouch a try. I don't think an ostomy sounds bad anymore. To be med free and not ever sick again, wow. Also never having to sit on the tiolet! With the jpouch you go to the bathroom like 6 times a day and risk pouchitis and more surgeries. The best thing is to meet with a surgeon and discuss everything. The GI could be wrong. I would try not to think of the osotomy as such a horrible thing, though. At least he wouldn't be sick anymore. Has he only had UC for a year? That seems so quick to have surgery. Maybe he could try Humira or Prograf? I am exhausting every option before getting surgery, but I am not as ill as your husband. He really needs to speak with a surgeon.
Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


princesscolon
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Date Joined Apr 2006
Total Posts : 733
   Posted 2/13/2008 10:24 AM (GMT -6)   

This is very interesting and inspirational.

http://blog.healthtalk.com/life-with-colitis/life-after-surgery-with-a-j-pouch-or-ileostomy-bag/


Diagnosed with Left-sided Ulcerative Colitis 1995 at 15, Tried: Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Canasa, Enotcort, Colazol, Anamantle, etc... had almost recto-vaginal fistula in 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Remicade 700mgs every 6 wks (had reaction, will start Humira Feb 11) Clorazepate, Proctofoam HC, Glucosamine 500, Vitamin B, Lomotil,  Tylenol pm, Lyrica for Fibromyalgia started 1/17/08


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/13/2008 12:15 PM (GMT -6)   
My husband has had UC for 7 years now with the last year being a hell of a flare.  He's lost 60 lbs, bled alot, broke his upper arm because of the water retention in his legs and high dose of prednisone that he's now dependant on.  His body is shutting down and we're at the end of the medications to try.
 
I was just a little panicked at first when I heard the news and it was really scary.  That blog is a really great read.
 
 

EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 2/13/2008 11:35 PM (GMT -6)   
I had a total colectomy when I was 32...I had undertermined colitis. All tests looked clear and I went in for the creation of my j-pouch. Before they opened me up they discover a vaginal ulcer and it was determined I had Crohn's. They wheeled me out of the OR, woke me up, and sent me home. 3 years later I finally had my rectum removed and my ostomy is permanent. Now no one know I have an ostomy and it doesn't slow me down. I have since moved, changed careers, and last year I was rookie of the year in my office. UC and Crohn's are just tricky diseases it confused my doctors and they are top rated in the country. My advice, get a 2nd opinion with both another GI and surgeon.

Erica
Erica
Crohn's and Ostomy in 2004


Old Hat
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Date Joined Feb 2007
Total Posts : 5191
   Posted 2/13/2008 11:51 PM (GMT -6)   
Also read Westcoast Joe's recent post where he writes that his insurer refused to pay any longer for his ostomy bags. Unbelievable what IBD patients have to contend with at times! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/14/2008 7:25 PM (GMT -6)   
I had the "pleasure" of speaking face to face with this new GI today. Sorry...I'm going to rant a bit.

This is how the conversation went (Abbreviated):

Me: So you mentioned in the ER that an ileostomy was the only surgery available to my husband. Can you explain why you say that?

GI: Well the his rectum is compromised with colitis and he would not be able to have a j-pouch because of it.

Me: I spoke to a woman who only had colitis in her rectum and she had the J-pouch surgery.

GI: I'm sure it was not successful. (He goes on to say that the whole pouch would get colitis and there would be all these problems. Then he tries to put some big words in like ileoanal anastomosis thinking I don't know what it means...wth)

Me: She hasn't seen her GI dr. in 7 years and is doing fine.

GI: Well the colonscopy report did say it was in the recto-sigmoid. When the time comes we could get a (fancy word for the partial scope of the anal opening...I don't remember it right now) and see if the colitis is in the rectum...maybe it is just in the top portion and not in the bottom 10cm.

Me: Yeah because all you need is 1 cm to connect the small intestine

GI: Yes....that's true

Me: How many of your patients have had any type of surgery for colitis or crohns?

GI: Well people don't do the surgery anymore. All my patients had the surgery before, years ago and people don't do it anymore because it's just not very successful. Remicade and Imuran have come out and that takes care of it. (He then tried to convince me that it was be hard to find a surgeon to do the J-pouch surgery and there's maybe 1 at the mayo clinic who will do the surgery eyes )

I started ignoring the guy from then on. I was polite about it and all my questions were as polite as I could be. I know I didn't go to medical school but he was so misinformed... As soon as my husband is out of the hospital we will not be going to that guy.

I just couldn't get over how high and mighty he tried to be. He was talking to me like I was this idiot that barely knew what Colitis was...and when I caught him in a mistruth (you can't have a J-Pouch PERIOD) suddenly the story changes..and there's a possibility, according to him, that the J-pouch surgery *might* work.

This guy is also against blood transfusions and won't give my husband a transfusion. He's had 2 and they both helped immensely.

Arrgh...

Fairbr
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 2/14/2008 7:49 PM (GMT -6)   
I was so happy to read your letter because I too am having a hard time with my GI.I have ulcerative colitus now for over 16 years and it has always been controlled by medicine.Asacol worked for many years but now Ive been sick for 6 months in and out of hospital with flare ups and they keep pushing steroids remicade and 6mp.That is very scary thinking what are the effects of these drugs longterm.Do they even Know?It seems like the surgery as scary as it sounds would be an answer.It would be so nice to be normal again and actually be able to go out to eat without worrying if what you eat might set you up for a flare up.I have an appointment tomorrow with my Gi and am going to tell him Im not doing that 6mp anymore.After taking it now for 5 days my vision is blurred for a good couple hours after taking it.Kind of scary.Thanks for listening.Id love to hear from someone who had the surgery with some feedback.Fairbr

Rhubarb
Regular Member


Date Joined Jul 2007
Total Posts : 21
   Posted 2/14/2008 7:52 PM (GMT -6)   
Yikes - I'm so sorry you've had to deal with his guy and his misinformation! But hats off to you for being so well informed and finding that your hubby DOES have options, contrary to what this GI doc believes. I don't know how he can look you in the face and say that no one does surgery because we have remicade and that takes care of it - didn't you say your hubby already tried that and it didn't work for him?

I really hope you can find a good GI for second opinion. I don't know where you're located, but like I said in my other thread, the GI doctor here at UCSF, Uma Mahadevan, is supposed to be one of the best, Assistant Professor of Medicine, Associate Director of Clinical Research, UCSF Center for Colitis and Crohn's Disease; our surgeon is Dr. Julio Garcia-Aguilar, also one of the best. Google search either of them to get more info.

I wish you all the best - I know how must feel as I was pretty much in the same place until this past Monday! We still have a ways to go with healing and future surgeries, but at least now we are headed towards healing and getting our lives back!
Husband diagnosed with ulcerative colitis in 2003(?)
Hospitalized 4 times
Asacol, Imuran, probiotics, fish oil, Vit D, Librax, Zoloft, Metamucil
Started Digestive Advantage Colitis formula 7/16 - hoping for some relief!
1/11 - some of the meds are hit and miss at this point. Back on Prednisone for the 4th time - can't stay in remission without it now. Think he has stopped the fish oil, Digestive Advantage (although he said he thought it helped)
Consult with a surgeon this week, surgery recommended
Surgery scheduled for Feb. 11
Colon removed! Jpouch surgery will come later - tapering off pred, healing from surgery, and shedding those pounds gained during all the pred induced snacking!


UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/14/2008 8:44 PM (GMT -6)   
My husband had said that he had tried Remicade and the GI did admit in the ER that Remicade wasn't working. He will most likely try to push Imuran on him instead of surgery.

Unfortunately I'm located in Maryland right by DC. You would think I would have an easy time finding a surgeon at John's Hopkins but I haven't heard anything from people on here. Granted I haven't searched very hard yet.

Finding a new GI would be getting a THIRD Opinion....

EricaM
Regular Member


Date Joined Jan 2007
Total Posts : 184
   Posted 2/14/2008 10:04 PM (GMT -6)   
Have you gone to the Crohn's and Colits Foundation's webpage? www.ccfa.org

You can click on find a physician to find a doctor who deals with CD and UC who lives near you.

Erica
Erica
Crohn's and Ostomy in 2004


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/14/2008 11:41 PM (GMT -6)   
wow that is crazy, almost all surgeons do jpouchs, not it's hard to find one who will do a k-pouch, and those are really tricky. But i chose to just get a perm ileo, and forgo the option of a jpouch, i didnt' want the risk of failure and all that. And life is just fine, it takes a little adjusting too, but it's really not bad at all, i don't even think of it most of the time.
As for sex, i'm a girl so i don't know what it would be like to have a man with one, but it doesn't get in the way for us. I tape it up on itself, and then it's fine. Sometimes i wrap my shirt around it, just cause i think that's nicer, DH doesn't care though.

UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 2/15/2008 8:03 AM (GMT -6)   
Thanks EricaM, I didn't think to look there.  I will definitely be contacting one of them.
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