Ileostomy - if surgery was your option, what was the final straw?

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jsein86
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 7/16/2011 6:21 PM (GMT -6)   
Hi everyone,

My question is for those people who have had a permanent ileostomy. What finally made you decide to get the permanent ileostomy if you had other options on the table besides surgery?

I am faced with that decision and I need to decide whether I want to try a drug trial (ustekinumab), Tysabri, or get a proctocolectomy. There are times I feel I just want to get it over with and schedule surgery, but it is tough knowing there are other options out there. I don't feel well, but it seems like so many other people have endured a lot more before considering surgery.

Here is a little bit about me - I've been browsing the forums for awhile, but this is my first post in the Ostomy forum.

I am a 27 year old male. I was diagnosed with Crohn's disease in 1997. I had a few week long hospitalizations before Remicade put me into remission for nearly ten years. I started getting rectal abscesses starting in 2008 and I have had four surgeries to drain those. My GI took me off Remicade and I've been through Humira, Cimzia, and methotrexate. I am on Cipro and Flagyl. My GI said he believes I will develop another abscess if I stop taking those.

No medication since Remicade has worked for me. I continued to get abscesses. I have some painful rectal fistulas with setons. The flare coincided with my last abscess surgery in March. I have had diarrhea with small amounts of blood 4-10 times per day. I frequently get anxiety attacks when there are no bathrooms immediately available.

My quality of life has decreased due to these symptoms. I am able to make it to work and play some volleyball. I have to deal with fatigue, but other than that any type of athletic activity is the only time I don't have a problem. I get so focused on the game that I have no time to think about the bathroom.

For the diarrhea I have tried immodium, the BRAT diet, and adding things like fish oil, probiotic, slippery elm bark and peppermint oil. Nothing has helped. I don't want to have to live like this for the next several months. I am leaning toward surgery. I think I would be OK with this if it restores my quality of life.

I met with my surgeon a few weeks ago and he reviewed the results of an MRI. He believes that I will need the colon removed soon if I don't respond to medication.

Thanks for your help.

Joe

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/16/2011 6:57 PM (GMT -6)   
Hey Joe! Good to see you posting and asking for comments. Here is my 2 cents worth:

I have had my ileo for 26 years now. My final straw was when I could no longer keep even fluids down. I was way too bullheaded and wouldn't give in to surgery and therefore, entered into it totally malnourished. Big mistake. It took a lot out of me and took me a long time to recover from surgery as I dropped to 82 lbs at 5'5". Once I recovered and began to live my life again PAINFREE and able to eat/drink and once I became familiar with taking care of the ileostomy, I looked back and thought what a fool I was not to have surgery earlier. Medications did not work for me, but Remicade wasn't in the picture at the time. Neither were a lot of the other drugs. I was on Flagyl, Prednisone (60 mg a day), and a handful of other stuff plus pain meds.

I hope you get lots of information here to help you make your decision. It is a tough step to take, but quality of life should be looked at closely. IMO.

Have a good weekend,
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/16/2011 7:54 PM (GMT -6)   
Hi Joe and welcome!
I have SUCH a simliar story to you. I was looking at those same drugs after dealing with Crohn's (sometimes flaring, sometimes remission) for 10 years. I was 28. I had tried just about everything else and had been on 60mg of pred for a year before surgery.

My gi said I needed to start thinking about surgery, and I was really surprised. But within hours I was on this site and asking, "what is the biggest thing you gave up when you got your ostomy?" and someone said, "I gave up being sick, and I got my life back." I cried when I read that! I had been in denial about how much of my life I was giving up, stubbornly trying to keep my colon. (For the record, the most anyone gave up in my post was wearing a bikini.) After that I started reading more about ostomies and realized that I could do just about anything with my ostomy...and the most important thing was that I wouldn't have to get up 3 hours before I left my house just to appease the diarrhea anymore.

A week later I had one last colonoscopy (one of the best and worst days I ever had, bad becuase I was SO SICK and seriously having uncontrollable diarrhea and wearing an adult diaper, and good because the day ended with me speaking with my surgeon). At that point I was unable to eat anything, was having diarrhea 25+ times a day, and was rapidly losing weight. I was unable to work (I worked as a dancer at Disney World), and was literally dying.

A few days after the scope I met with the surgeon and scheduled surgery for 3 days later. He gave me the option of a j-pouch, but I had read up on them and knew that having Crohn's meant possiblilty for problems later on. I declined, said I wanted a permenent ileo, and wanted to never have diarrhea again!!

It is daunting, but for me, once I made up my mind to be positive, I was. The whole situation is WHAT YOU MAKE IT. If you think of this as a blessing that allows you to live the rest of your life feeling healthy and not worrying about crazy drugs and remissions and flares, etc, you aren't bothered by the fact that you have a pouch. I'm so used to it after only a year that I sometimes think how weird it is that most people DON'T have one! :P It really is all in how you look at it. If you sit there and feel sorry for yourself, then that sets the tone for everything. If you think about all of the health and happiness you will gain from the surgery, you will be in a better place.

Legitimately, most of the time I do not think about my ostomy. I do not worry if there is not an available bathroom at all times (I used to have that on my mind constantly before surgery). I don't worry about people seeing it, and I don't worry about telling people about it. If it comes up, it never ends up being a big deal, because I don't make it one. I am literally so very thankful every single day for this, and just writing that brings tears to my eyes because of the changes this has brought to my life.

If you're not sold yet (and I'm not trying to sell anything...this needs to be your decision), here are just a FEW things that have happened to me in the last year, and they're all thanks to my ostomy:

-got a new job teaching 5th grade, like I always wanted but was too sick for
-got a job teaching dance classes, which I couldn't do working at Disney
-was able to afford a brand new car and brand new house bc of the job, when previously I was driving a 10 year old car and living in subsidized housing and could barely afford food due to my medical bills
-stopped wearing wigs because my hair started growing back
-stopped all medications
-gained 40 pounds (I was 92 lbs and 5'6 at the time of surgery, so it's good)


And seriously those are only a FEW of the wonderful things that have happened. It's not all roses, but it's a lot more than the absolute dirt that my life was before the surgery.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/16/2011 8:44 PM (GMT -6)   
i have a story like yours too, i had UC though (great sentence btw!) anyway, i was 21 when i got sick, missed all my 20's too sick to do anything, no partying and going out like i should have been.  Then when i got pregnant at 27 i was all better the whole pregnancy it was awesome!  so when i had my son and i got sick again,it was even worse because i had been well for 9 months! 
this is my corny last straw story, i missed a lot of my son's life, one time i couldnt' even go with him to get his shots, my husband had to take him cause i was sick.  i couldnt' take him to the store, i couldn't even put him in the high chair, the poor baby was playing in the bathroom! had a drawer of toys in there. 
Well when he was a little over one, it was july and we were at the beach with my family, and even though we had taken my kid to the beach before (i was sick then too, but not as bad) but this was the first time he had been able to play in the water and stuff, and i had to watch him leave and go to the beach his dad and with my mom and dad and my sis and her husband while i sat in the room too sick to go, waiting until my stomach would calm down enough.
and that was it, i can remember it, i was standing in the kitchen of a rental house, and i said, i'm having surgery (i had never even considered it, noone had sugguested it, hadn't looked into it anything) i'm done, i'm not missing anything else!  well i went to the dr and he said surgery is a good option but why don't you try remicade first, if nothing else to get you healthier and off the steroids, so,against my better judgement, i tried it, it worked great for 5 months, then it went back to awful, so i went to the dr and i said, look either you take this colon out or i will take it out, i think i really would have.  so he said, oh get a jpouch, and i said no i don't want a jpouch, so he sent me to a surgeon who was totally supportive and said, you know if i had UC or i had a family member with it, i would suggest a perm ileo to them too.  he said, you know a jpouch is a great option for some people, but some just don't want that.  I said, no i want this over and done, i want my life.
So april 17, 2007 i had my surgery, i call it my new bday cause that's when i got my life back!
and yeah it was scary, and it HURT, and it was gross at first, getting used to it was not the easiest thing in the world, but when i made my decision i thought, i  KNOWi  HATE my life now, so i can get surgery and i MIGHT hate it, but most likely i will not, reading this board really helped me.  it's a learnign curve and it takes a bit to get used to, but when i stopped on the way home from surgery and got some fries and a milkshake without worrying about the bathroom I knew it was worth it!
And there are times, very rarely, that im like, ugh this thing is annoying!  but i look at the crayon on the shower wall that my son drew while i was sick and he had to play in there, and i remember why i did it.  and there hasn't been a day that went by that something doesn't happen that makes me say, wow im glad i had surgery! 
anyway, there is nothing i can't do, nothing i can't eat!  so it's a total 180 from UC!  that's my long story, lol. 
there can be other options, i had some more, i didn't try them, i didn't want to let UC take over for me anymore, i didnt' want to put all those dangerous drugs in my body and wait on them to work and then wait on them to fail. 
So please don't let anyone make you feel like you are giving up by choosing surgery, you aren't you are winning you are taking your life back!
 

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/16/2011 9:15 PM (GMT -6)   
Hi Joe
 
First and foremost "you have to be totally personally ready" to make this decision.
 
Hubby had a permanent ileostomy - had hoped for a possible 2 step      j-pouch process - but for many good reasons a permanent ileostomy was the end result.
 
My husband had severe UC that would not go into a remission.  You name it he tried it.  Over the years a few times he got some relief here and there but nothing really made a tremendous difference.  His suffering became his "normal" and he just found a way to accept it and live with it as surgery was just not an option as far as he was concerned.  He tried Remicade which did nothing and the pain management meds he was on that kind of let him get through the day stopped working and he needed stronger meds.
 
His GI Dr at Mayo Clinic had broached the topic of surgery several times but he was not ready.  His local GI Dr mentioned that she felt my husband was now at the point he needed to have colonoscopies twice a year instead of annually as she felt in her opinion it wasn't a question of "IF" but "WHEN" he would probably get cancer.  So if he had colonoscopies twice a year they could have a better chance monitoring him as cancer in addition to colon surgery would give him more to deal with.
 
For whatever reason that conversation totally resonated with him that day and he said...OK I'll have the surgery.  I am sick and tired of being sick and tired.  I was so happy when he made that decision.
 
That was June of last year...after several other personal situations (a planned vacation, prostate biopsy procedure which needed a full month to heal) he had his surgery mid Dec.
 
Fortunately there was NO cancer - his surgery was a success - he healed well - and he and I have adjusted well to the new routine.  There is a definite learning curve but he has his life back and quality of life too.  Plus he has 23 pills a day and pain patch he no longer needs to take.
 
It is 7 months tomorrow and we are both grateful to have this 2nd chance at being able to enjoy life once again.  No more constant urgency and uncontrolled frequency and needing to know where the men's rooms are.  Many times it was easier to just stay home and not go out unless it was necessary (we are retired) and that became depressing.
 
As I said my husband was not ready for surgery sooner but knowing what he knows now he definitely would have done it 2-3 years earlier.  He made that comment 3-4 days after his surgery in the hospital when his GI Dr paid him a visit...but his Dr. reminded him "You were not ready 2-3 years ago...you had to do this when you were ready."
 
I truly wish you well and peace with your decision.
 
 

Post Edited (Another UC wife) : 7/16/2011 9:22:48 PM (GMT-6)


villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 7/17/2011 6:08 AM (GMT -6)   
hi Joe, when you are given choices of different surgery options it is not easy to decide because we have no experience of the possible outcomes & we are not medically trained, it simply is a question which we are not equipped to answer but its a question we have to answer

my story briefly, UC since 1991-ish, pentasa / asacol & plenty of pred, life was v hard, surgery was suggested many times but i avoided it like the plague, major health deterioration early 2009, had to give up work, practically housebound, life was not good at all, meds thru 2009 until Jan'10 when the focus turned bo colon cancer, by mar '10 drs decided that cancer was a definite in the next few months & advised dreaded surgery before end may '10, this was exactly what i did not want. but it had to be done - i was offered j-pouch or end ileo - ??? what did i know - you might ask well as me a question about the engines of the space shuttle !!! i'm a practical bloke so i did a little reading about the end-ileo & found out that there indeed is life after surgery, 2 reasons swung me to the end-ileo a) i couldnt face possibly 3 ops over 12/ 18 months for a jpouch, i no longer had the energy/ability to continue as i was, & b) the surgeon (a great guy) said that if it was his brother in my position he would recommend the end -ileo

anyway it was all done & dusted on May 13, 2010 & i havnt looked back since - it takes a bit of getting used to initially & fortunately i have not had problems so far - it was the right decision for me

the is a real 'danger' now that i will live a lot longer than i thought before the op & unfortunately there is no pension in place - the upside is that it is alot easier fo do job interviews without UC causing its grief

i wish you the best of luck & hope you have a great outcome

cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/17/2011 7:03 AM (GMT -6)   
A point that villager made.......my husband's surgeon fully explained the different operations ie: end ileo and j-pouch. In my husband's case since he was off prednisone for so long if the j-pouch was possible it would be a 2 operation process and not 3 for him.

My husband had things working against him and it appeared the j-pouch might not be possible. The surgeon knew that was his ultimate desire to give it a go and try it, unfortunately he could not comply. A very tough, rough 7 1/2 hr surgery ensued for him just to be able to successfully do the ileo and create his stoma.

His surgeon DID recommend the ileo (one surgery versus two and possibly needing to reverse the reversal should things not work out) over the j-pouch in his case in the consultation due to my husband's situation. He was very disappointed that he could not honor my husband's desire after the surgery was over. But given the circumstances and the very detailed play-by-play operative report we got after the surgery we understood even better that he was lucky overall. There is a 90% or so success rate with the j-pouch and we don't hear from as many of them on the forums as they are out enjoying and getting on with life.

My husband was in the 10% that had he had the surgery there was a good chance it might not work out so he is where he needs to be and we are both fine and accepting of it.

You are a lot younger and probably have more in your favor. The one thing you want to do is fully research this. You really do not want woulda, coulda, shoulda moments or feelings after your surgery if you decide on a permanent ileo and have second thoughts.

With a 2nd and 3rd surgery there is a greater time committment for your recovery but if it goes like most of them do as people attest to, it is worth it. Again, good luck with your decision.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 7/17/2011 7:07 AM (GMT -6)   
Hi. I was dx with CD at 18 yo after having a year of gradually worsening D and having to run to bathroom up to 20 times a day. At that time, which was 22 years ago the only medical options were steroids, asacol and that was about it. If I started to reduce the steroids then symptoms would coem flooding back. I was working full time and had to get up for work 3 hours before I wanted to leave as would spend up to 2 hours in that bathroom and on really bad days, which there were many, I couldn't even walk 5 metres from front door to the car without having to dash to toilet.

It all came to a head in April 1992. I was admitted for the umpteenth time and stayed in for a month. They had offered me all the drugs they had available at that time and nothing was working. Barium colonscopy had showed by colon was badly damaged and so my GI said we can send you home on steroids and see if they eventually work or you can have an ileo. Being only 20 yo and having been in hospitak for a month and the thought of major surgery and having a bag like an old lady scared hell out of me, so I bolted from hospital and said I wanted to keep on the steroids. Even though I was in agony, couldn't eat, couldn't leave the house and was having life pass me by I went home.

It took 3 days of being at home and in a terrible state from pain, not being able to eat, constantly running to bathroom for me to realise this was no life. Having an ileo had to be better than this so I phoned my GI and asked for earliest appt for the operation. As soon as I made that call, it was like a sense of calm surrounded me. I had the op a week later and it was originally hoped that the loop ileo would be there for 6 months to allow colon to heal.

I woke up after the op and for the first time in 4 years didn't have the urge to run to the bathroom and had no pain except for the incision (they didn't do lap surgery then so had a midline incision). It was total bliss. When my surgeon came round the next day, before he could speak I said I never wanted it reversed as I didn't want to go back to how I was. Luckily it was good job I felt like that as when he went in, he found my colon was beyond repair and if they did reverse it I would have huge problems but he had done the ileo as it had to be my decision.

Even though I have hd flares since and am on immunosuppresants for life because the CD is so aggressive I have never regretted having the ileo. Even during my bad flare last winter, which is worst I have ever had even before all the surgery, I never had to spend hours at a time in the bathroom. I never have the CD pain anymore even though there is disease in the small bowel. Life is so much better now I can actually live it and enjoy it.

Deciding to go ahead is a personal decision and only you will know when you have had enough. For me, it was watching all my friends going out and enjoying themselves. All I did was go to work and then come home, my evenings would be spent in the bathroom and would go to bed at 8pm as would be up 5 times a night and then have alarm clock go off at 5.30pm so I could get to work on time. It changed my life so much for the better and I have done so much and been to so many places that I would never been able to do before.

Good luck in whatever you decide. The thought of it can be scary but then if you put it into context. If you had broken leg - you would get it plastered, same applies for the ileo - your bowels aren't working properly so they need help.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/17/2011 8:09 AM (GMT -6)   
Welcome, Joe,

My story is a lot like yours. I had Crohn's, fistulas, and seton drains and went to the bathroom more times a day than I care to remember. The final straw for me was having a rectal abscess after Remicade stopped working. It was the most pain I've EVER experienced, and I don't know how you've dealt with FOUR! sad After having surgery to drain the abscess, I agreed to a temporary ileostomy to keep the open wound on my butt from getting infected.

After 6 months with the temporary ileo, I started bleeding from the rectum and wasn't even using my colon. I started doing research and found out that the longer I kept my diseased colon and rectum, I was at an increased risk for getting colon or rectal cancer. That was a HUGE factor in my decision to have them removed.

Since I got to try out the ileo, I loved the freedom it gave me from having to always be near a bathroom. I could finally work full time, exercise, go shopping, sleep through the night, etc., and I loved being able to eat whatever I wanted without being in pain. Nobody could tell that I had one, and I felt better than I had in years.

I remember asking myself, "What am I holding onto? A diseased organ that isn't doing me any favors?" That's when I decided to take charge and have my colon and rectum removed. It was the best decision I've ever made and have no regrets.

Since surgery 5 years ago, I've been disease-free and don't have to see doctors or take medicine anymore. Life without Crohn's is awesome, and I'm so thankful to have my health back! :-) I wish you all the best in your decision, and please ask us any questions you may have.

Take care,
Cecilia
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.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 7/17/2011 9:51 AM (GMT -6)   
Welcome Joe! This forum is amazing in both support and information...I wish I had found it BEFORE my surgery cool

I am another Crohn's patient who experienced most of the same issues as the other posters. I was 'lucky' to have experienced a temporary loop ileo many years ago from surgery complications. During those 3 months I was able to LIVE and enjoy my family and life in general. At the time I was not interested in keeping it and had a reversal after 3 months. about 6 months later I called my GI and CR surgeon asking if I could have another one...needless to say they both chuckled because they knew I'd eventually call them. The best part was it was MY decision. They knew I'd get to that but never pushed me into it.

At that time I had had small bowel involvement so the decision was a conservative one and only do a loop ileo. I lived with that ileo for about 8 years and continued my medication (Imuran and Cipro) which sometimes worked well/not so well during that time. I still had 3 setons (was able to remove 2 of my 5 after a few Remicade infusions but unfortunately that ultimately failed) and all the joys that go along with them mad

After a colonoscopy, that my GI had to use a peds scope, and couldn't get passed my rectum, I made the final decision to have a proctocolectomy. My chances of having any more small bowel will go down every year after the 10 year mark (knock on wood) so I was really comfortable with the decision.

Like it was mentioned, the surgery is a big one, and doesn't come without some sort of complication BUT it is SO worth it. I didn't realize how horrible I felt during those years with my temp ileo...that diseased colon was still bringing me down but I wasn't chained to the bathroom so it wasn't the same effect as it had been before... I knew things were going well when I woke up one morning and felt AMAZING...it was that feeling that I always hear UC patients say when they wake up from surgery and know that the disease is gone. For me it took about 4 months but I still remember that day like it was yesterday.

Good luck with your decision...It's a very personal one.
formally known as OHIO76 ~ honoring my daughter's passion!
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!

jsein86
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 7/17/2011 4:25 PM (GMT -6)   
I can't thank you enough for all of your responses. I am trying to gather as much information as I can before I make a decision and your stories have been very helpful.

In regard to the type of surgery - My surgeon said he wouldn't consider a JPouch because I have Crohn's. He recommends a permanent ileo (only half of my colon is inflamed) because any piece of the colon that is left has a minimum 60% chance of recurrence. Probably higher. It only makes sense to remove the rectum and anus then since there is no chance they would ever be used again and that will fix my fistula problem. That would be so nice. I could live with the pain, but I have to use some padding to collect the blood and drainage from the setons. I can't wear light colored pants anymore for that reason.

I guess what I am having trouble with is that I don't feel sick ENOUGH to have a major procedure like this. When I had my abcesses I knew I needed surgery because it was so painful I could barely walk. But with my condition right now I am still able to make it to work and I can usually make it to volleyball once a week. Work is always a struggle. I feel like at any moment I could get the urge to go. I've made several stops in the woods on the way and once I had to turn around and go home to clean up when I didn't make it to the woods in time. My quality of life is far below what I would like, but I just can't believe I have so few options left.

I have to admit I have lost some faith in drug therapy since the last four drugs I have gone through had no positive effect. Tomorrow I am going to call my GI nurse (she has been on vacation) because my GI had suggested getting second opinions from another GI and surgeon. She has to create some notes for them and explain why I am coming to see them. I hope I can get into see them within two weeks.

All of the posts above sound like you were all worse off than I am right now. I have lost about 20 pounds since late March so my weight loss hasn't been too drastic. I get abdominal pain, but it is sporadic and it is not severe (I had to be hospitalized for a week once with abdominal pain). My fatigue is also sporadic and I do have nausea from time to time. Although I suppose I will only get worse if left untreated.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/17/2011 4:57 PM (GMT -6)   
My husband lost about 50 pounds while sick. He is gaining back weight now but needs to stop....lol. I hate to nag as he can enjoy eating once again but he admits he has to watch it and doesn't want to be overweight again too.

His colon had probably 30% that had healed but like yourself both his GI and Colorectal surgeon agreed with the severity of what he had if they only took out the bad there was a very good chance it would only be a matter of time there would be another surgery to remove the remainder.

My husband also had a couple of very near accidents but somehow managed to escape them. But he definitely had to have me pull over to the side of the road several times or it would have been a problem otherwise. So many times I could see the pain in his face hoping he would make it to the bathroom in time with the uncontrolled urgency when we were out and even at home. A rotten way to live day in and day out for sure.

Definitely get all your questions and concerns answered by the pros and you will also get a lot of help and support here as well.

We just went out to visit a friend in a rehab center for a few hours. We had a great visit....that is something he could not easily do before without needing the bathroom multiple times while visiting and then hope we made it to and from the house without distress.

As distressful as it is for the person afflicted...it does a number on the spouses, family and anyone who loves you and worries about you. Sometimes it may not be well understood by those close and sometimes a person has to suffer alone which is too bad. I hope more and more these IBD illnesses start to get better understood by the public. I am seeing more and more commercials lately so maybe there's hope it will be better understood.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/17/2011 7:37 PM (GMT -6)   
Joe,

I needed my ileo due to irreparable colon and rectal injuries, ileo was my only way to survive. AND I have done just that. Have been constantly on the go with many cruises and traveled to places I never would have thought to go other wise. As others have said, it's no bed of roses, but beats the alternatives. My choice was a no-brainer and I realize yours is a different situation where you need to decide. But, know that there is life with an ileostomy however you come to it.

Best wishes in making your decision.

Rosemary

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/17/2011 9:16 PM (GMT -6)   
you may not feel sick enough, but if you have to stop in the woods to go to the bathroom and work is a struggle, is that really a good quality life?  if you have to give up wearing the kind of pants you like, which may seem like a small thing, but you posted it so it must bother you, that was something i was happy with too, i was always worried about having an accident so i wouldnt wear light colored pants either.  your physical symptoms might not be as bad as others, and it might be worse than others who have had surgery, but your quality of life is suffering, and that's really important!
It's also better to go into surgery as healthy as possible.  if you go in on steroids or in a bad flare, it's gonna take longer to heal.  and your colon seems to know, and starts behaving when surgery is coming up!  darn sneaky things!
 
i think its great that you are doing all your research, that will help you be happy and secure with your decision whatever it may be!

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/19/2011 9:10 PM (GMT -6)   
I was faced with the surgery choice in a matter of a couple of months. I had UC for ten years. Most of those years it was pretty moderate, and other than a few times, I didn’t have the urgency issues many people with IBD face. My main problems were constant pain and a lot of blood loss. Last year, these things got worse and I was having a lot of issues maintaining my iron levels. I was very fatigued most of the time. My GI suggested Remicade in the spring of 2010, but I didn’t think my UC was bad enough. Soon after that discussion, I went into a perfect 4-month remission in the summer. The only change I had made was introducing VSL #3 to my normal maintenance drugs of Asacol and Rowasa. I thought I had beat the disease with a natural remedy. Wow, was I wrong...

In September of 2010, I came down with the worst flare of my life. I was going to the bathroom 28 times a day and had to be admitted to the hospital. Prednisone stopped working, and I was faced with the Remicade or surgery choice. At this point, I was so weak I could barely walk. I went from 130 pounds to 105 pounds in two weeks. After researching both surgery and Remicade, I actually wanted surgery. I did not like the listed risks of Remicade, especially the one involving potential joint pain. I am an education park ranger (I lead 2+ hour hikes and nature programs) and love everything outdoors such as running, hiking, rock climbing and snowboarding and joint pain would have ended so many things I loved doing. However, I was in horrible shape for surgery, so I decided to see if Remicade would work to at least buy me some time to get surgery later when I was less ill. One infusion of Remicade ended my flare and I was released from the hospital. However, a week later, I developed such debilitating joint pain from it that I could barely function. This was ironic, as it was the risk I had feared the most! I canceled all future infusions and scheduled a consult with a top CR surgeon. Fortunately, the joint pain from Remicade slowly resolved as it left my system. I chose to get a permanent ileostomy, even over a j-pouch which I was also a candidate for. I felt it was a good match for my career and the outdoor pursuits I loved, as there were fewer frequency-related risks with a permanent ileostomy than with a j-pouch.

I suppose once I got out of the hospital when that severe flare ended, I could have gone against my doctor’s recommendations and tried a bunch of last ditch things, such as diet or supplements, to avoid surgery, but I had absolutely no interest in going that route. I had become acutely aware through the whole experience in the hospital that UC could very well kill me if I messed with it. I always thought I only had moderate UC and would never have to deal with such a crisis. I was shocked at how fast I had gone from a perfect remission to being extremely ill from this disease. What about the next potential flare-up? What if I had to get surgery for that one in an emergency situation like I almost had to with the severe flare I had just survived? Emergency surgery is much more risky than surgery when you are not in a flare. Because of the joint pain, I also realized that the risks with the drugs were real. I was done with the UC roller coaster ride. I was actually excited about my choice to have a permanent ileostomy. I didn’t feel an aversion to having a “bag” that some people seem to. I saw it as the best way to get my health and life back.

Now that I am 8 months post-surgery, I am incredibly happy with my choice. Things have ended up exactly as I had hoped. My ostomy is allowing my to continue in my dream job and is allowing me to pursue all the things I love doing again. Though there were some hard times healing up and getting used to everything in the first several months, things are great now. I have no regrets at all! Not sure if you have come across my blog, but it shows some of the things I am up to post-surgery. The link is listed in my profile.

Which treatment plan to pursue for UC is a tough choice and one that is deeply personal and based on one’s goals and values in life. Best wishes with your decision!
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 7/20/2011 5:13 AM (GMT -6)   
Blue Heron -- wonderful post. So much of what you detailed also happened with my husband during his 6 really bad years. It got to the point he accepted what had become his new normal which was so not good and quality of life was horrible. However, it was his decision and he had to make it when he was ready which is what he did. I was so grateful it was before it became a severe emergency, cancer etc.

All in all except for finding the perfect appliance that his skin likes (thought we found one this 2nd go around) life is good.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 7/20/2011 5:50 AM (GMT -6)   
Hi Joe,
i agree with summerstorm...you may not think you're sick enough, but stopping in the woods regularly shouldn't be part of anyone's repertoire. Plus, like I said in my post, I think there is some sort of way that we get used to how sick we are and don't realize how ridiculous it was until we start feeling better.

But, as UC wife said, it has to be your choice!!
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 7/20/2011 6:41 AM (GMT -6)   
Stephanie is so right about what you start to consider "normal" with UC. Even though I always thought I had mild to moderate UC before the big flare that led to surgery, I realize now how terrible I really felt all the time. Now that I am healed up from surgery, I am in awe everyday at how good I feel. No more pain and fatigue. I had forgotten what it had been like to feel so good.
-39 years old
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 dose of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Ironmum
Veteran Member


Date Joined Oct 2010
Total Posts : 776
   Posted 7/20/2011 2:22 PM (GMT -6)   
I was exactly the same (although I didn't have UC or crohns) - but in terms of not sure if I was sick enough to warrant the surgery.. (check out some of my previous posts!) but all I can say is that now I'm 9 days out of surgery with my new stoma and feeling SO much better already. I know it's early days but already I feel like the fog has lifted, I feel brighter, am sleeping better and am eating way more normally than I was before. Am also planning a family holiday and a weekend away - things I couldn't even contemplate before. I had to virtually beg my surgeon for this surgery - all the while thinking 'WHAT am I doing?!?!'... but so far I'm really glad I've done it.

You lose sight of what 'feeling well and healthy' is like - but it's only when you can look back with hindsight you realise how rubbish your quality of life was and how awful you felt. Don't struggle on thinking you're 'fine' the fact you're on this forum is enough proof that you're not. Like you, I used to read everyone's posts thinking I wasn't sick like them.. but now I can look back I realise I was.. when we're deep 'in it' it's hard to have perspective.

Blueherons blog was a source of inspiration for me - and I can only hope in a few months time I can do the same and report about my running, triathlon and sports and be super grateful for my wonderful stoma.

Good luck with it and with making your decision. Sarah
Sarah - 39 year old mum of 2 boys, runner/triathlete, health and fitness writer from UK
June 2010 - Peritonitis caused by perforated diverticulitis. Emergency surgery.
August 2010 - Sigmoid colectomy and temp loop ileostomy
October 2010 - Ileostomy reversal - but didn't go well and after 10 months diagnosed colonic dysmotility due to surgery/nerve damage
July 2011 - Permanent end Ileostomy

jsein86
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 7/20/2011 7:09 PM (GMT -6)   
Well I don't know why, but for some reason I have been feeling better the past few days. My bowel movements are down to 2 or 3 per day, but I still have the urgency. The anxiety attacks are down a little bit and the blood in the stool and from the fistulas has decreased.

I think now I am going to try to see if I can get on the Tysabri or the ustekinumab to see if one of them can bring me over the hump. I feel if I can get back to having solid bowel movements I will be okay.

Still, it is only a few days of feeling a little bit better and I am still being careful about how often I leave the house.

I wasn't even going to get the second opinions from the surgeon or the GI until I read Blueheron's story. I think now I will go and see these guys anyway. It can't hurt especially if my flare picks back up.

I feel like I'm being jerked around by this disease.

I saw my psychologist yesterday (GI recommended this) and she recommended acupuncture. I have no previous experience with this, but for $70 it can't hurt. I think I will give that a try too.

Thanks again for everyone's replies. I feel like I'm not so alone dealing with this.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/20/2011 8:04 PM (GMT -6)   
I can understand trying everything first. I did that as well, and after 7 years, when all of the meds, restrictive diets, and homeopathic routes stopped working, I felt like I had tried everything and was ready for surgery. Hopefully, something will work for you, but if not, now you know that surgery is an excellent option that can give you your health and quality of life back and also where you can find an excellent support group. :-)
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.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 7/22/2011 10:42 PM (GMT -6)   
I know you have stated you want to go the new drug route, but I thought I'd put in my two cents :)

I don't have a perm ileo, but should something go wrong with my J-pouch I wouldn't hesitate to go back to an ileo. In my opinion, when you start to consider surgery, it means that you need it. You wouldn't be thinking about it if you didn't somewhere in your mind know that it would give you your life back. My surgery wasn't a choice, my colon perforated and i had to have it removed or I would have died. But it was the best thing to happen to me since i was diagnosed with UC.
I stray from the drug route because I truly believe I have UC because of taking Accutane. No one in my family has any, and i mean any, bowel problems at all and I first started showing signs of UC 3 months into taking Accutane, was diagnosed and continued to take it and it got worse very fast, sending me to the hospital 2 months after my first bloody bowel. so you can see why I would hesitate with new and potentially risky drugs. But someone's got to try new things to see if maybe they will be the cure-all so it's not a bad thing to go the drug route either. I wish you the best of luck with the trial drug and hopefully you won't need to see us here :) But if it doesn't pan out, we'll be here for you!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11
I <3 my J-pouch!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/26/2011 4:16 PM (GMT -6)   
Joe,

I'm glad you're feeling less alone -- it's a hard decision. You read my story on the Crohn's list, so I won't repeat it here. I do want to second what others said about not realizing how poor your quality of life is .... happens gradually, and we adapt. I remember arguing w/my gi doc when he first suggested surgery: I was excited that day because I only had 13 bathroom trips, and he was saying that was a lot, and I was saying it was fine. I kept saying all the things I liked to do that I could still do, and that was all true, but really, I had forgotten what it was like to feel healthy. I had some crises, which made the decision easier for me.... but my quality of life was lousy before the crises too.

However, I was the one who had to decide that I'd tried enough things -- enough drugs, supplements, alternative treatments etc. I did a lot of acupuncture -- helped with back pain, menstrual cramps, and not at all with gi symptoms....but that's me, and the disease is different in different people. I am fine with what i tried.... maybe I missed the one thing that would have done it for me, but I was just done trying things. Before that, I wasn't. So, if you're not ready, try some more things, I hope you find something that works. But know that if you decide you're done, surgery can be a great option.

The one treatment I'd really wanted to try was the fecal transplant. My doctor was in favor of it and was going to help as he could, but then I got so sick that he said it was too risky. There are a lot of posts on that on the UC list, you might want to look into it. It has a very high yuck factor, but if you get past that, it seems very promising. There are the helminths too (worms), but they are very expensive.

Good luck.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

jsein86
Regular Member


Date Joined Jul 2010
Total Posts : 20
   Posted 7/28/2011 5:20 PM (GMT -6)   
I've read about the fecal transplant, but I don't know if I could go through with that. That is a big mental barrier. When I was a little kid I remember being grossed out whenever I got a little bit of poo on my hands. Now it is everywhere and that barrier is long gone.

I've looked into the worms too, but I believe they are illegal in the US so I gave up on that. I would be willing to try that if it would ever get approved. That is doubtful though since no pharmaceutical companies will be able to make money from it.

Next week I have appointments with another GI and surgeon for second opinions. From there I decide on Tysabri or surgery. Right now I'm feeling well enough I want to give the Tysabri a chance before I elect surgery.

I'm not feeling any worse, but is it possible my condition is still deteriorating? Inflammation spreading etc... I'll have to ask the new docs what they think.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 7/28/2011 7:04 PM (GMT -6)   
It's a crazy disease -- so hard to tell. Some people go into remission for a decade, others seem fine and then things explode, others get gradually better or worse.... glad you're not feeling any worse, hope you start feeling better.

Do be sure to ask a lot of questions and get all the facts for tysabri. I did fill out the paperwork for it, although I never took it. I find that scarier than the fecal transplant..... but I hear that when it works, it can really help people a lot.

Good luck.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery
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