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

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

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.

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)

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.

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! 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

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.

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

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!

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!!

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

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.

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.

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.