How did you decide about surgery?

Hi,

I am new to this forum, although I have been posting on the Crohn's forum (you all seem happier overall, from a quick perusal). I have Crohn's colitis and I've had a very difficult last few years. I've been through most of the drugs, and prednisone is the only thing that seems to work at all for me. I just got out of the hospital after a 9 day stay with a fever that went up as high as 104.6 -- it was terrifying, especially because I was on cimzia and my immune system was suppressed. I've also been having all kinds of extraintestinal complications -- rare case of cutaneous Crohn's, which resulted in painful boils on my butt, EN nodules, a painful eye problem....

My doctor had started mentioning surgery a few months before all this happened. I thought it was premature. Now I feel like I want to be off these drugs forever, no tysabri, no clinical trials, no more immune system tweaks that leave me vulnerable, and no more having to get off the subway to find a bathroom cause I can't make it all the way home.

I am a teacher and my dean decided that I need to take off more time than I was thinking I would, so they could have a reliable sub for the students. I'm going to miss half the semester, and this has never happened to me before, no matter how sick I've been with the Crohn's (never missed more than two weeks).

Now I just feel like I want to have surgery. I care a lot more about keeping my job than my colon.

People in my life are telling me not to make any major decisions now, and they are right -- I am exhausted from being in the hospital, not in a great place mentally, physically, or emotionally. But it also feels so clear to me: I am done. I tried, my doctors tried, I have a severe case, and I want to move on.

I am wondering how the decision to have surgery was for you, if you're willing to share. I'm sure there are a variety of experiences, just interested in hearing some. Also, if anyone could recommend some of the best starting points for learning about surgery, life with an ostomy, etc. I'd appreciate it .... I'm just not in a very good research mode yet; I'm so tired and it's so overwhelming (so I apologize if I'm being redundant and lots of people have posted these questions before). I have a doctor's appt tomorrow, and will get a surgical consult soon ....

thanks

Well Blueglass you just about summed up what precipitated my husband's decision and how he reached the point of "enough is enough" and he wanted to get back in control of his life instead of the UC controlling his.

The final piece was a meeting with his local GI last June after Remicade failed from Jan - May. We had gone on a cruise in May and it was challenging. The drive although only 90 minutes or so to and from the cruise terminal was tough. His Dr's opinion with all that he had been through and tried and since he had basically exhausted everything available medically was to have colonoscopies 2X year. Reason being she felt that it was only a matter of time of not "if" by "when" it might become a cancerous situation. Then not only would he need surgery but add chemo and radiation into the mix. His heavy duty pain meds were not doing the trick any longer either which was only masking things anyway to allow him to function somewhat. He stayed in mostly, rested and slept (napped) a lot and our social life was non existent.

Due to his age and overall good health except for the UC he made up his mind right there and then that it was time. We discussed it and felt anytime you can cheat cancer before the fact and he had a good chance at a good recovery now rather than later it was time to set in motion surgery with the team at Mayo Clinic which we did.

A visit/consultation in Oct at Mayo. A prostate biopsy to get out of the way locally and allow a month of healing which brought the surgery to mid December.

He/we were hoping for the j-pouch and knew going into it that it could possibly not occur. A very complicated 7 1/2 hr surgery with an excellent surgeon that tried his best but with hubby's anatomy it was not meant to be so he has a permanent ileostomy.

With the exception of surgical healing and discomfort it was wonderful for him to be out of that UC pain, frequency and urgency. It was 7 weeks ago Friday and he has convalesced wonderfully and adjusted and adapted to changing the wafer and pouches just fine. He is weaning off all the pain meds very well and should be totally rid of them very soon. Plus all the other meds are now gone...he is like a normal person taking a few pills in the AM and before bed now.

We did a lot of research before the surgery as we didn't even know what was involved with this time of aftercare. Even though we thought it would be a 3-4 month thing. No regrets and I honestly think with all you have described above you will be amazed at how quickly you will indeed bounce back after you master the learning curve.

If hubby was employed he would be able to be back working at this time. So in your profession if you do have surgery and can plan it so that the healing is during summer vacation I would expect you'd be good to go back afterwards.

Good luck - this is not an easy decision. But if you have basically exhausted all your options and don't want to try anything else it might be time to line up those ducks and be sure you get an excellent surgeon.

Worried mom- I too am the mom of a (former) U/C sufferer. My 21 year old son was diagnosed in 2008 with a mild to moderate case, and in two years it got so bad that he too felt like your daughter. Enough is enough. He was having two major flares a year. Horrible, debilitating, painful flares. Weight loss, no appetite, etc. I am sure you know the drill here. Anyway, buy summer of 2010 when he flared again,  he decided he'd had enough, and informed us he was having the surgery. So on July 22, 2010 he had the first portion of the surgery while in a horrible flare, which included the need to wear an ostomy bag. Not the best most pleasant experience, but it gave him his LIFE BACK!! After a few weeks, he was feeling healthy again. Eating, working, just being him. He gained all of the 50 pounds he had lost, and other than being 20 and having to deal with the bag and stoma, etc., he did fantastic. Long story short, he just had the pull-down j-pouch surgery on January 6 of this year, and he is so glad that he did. The recovery road is not an easy one. I won't lie. He still is pretty tired, not much of an appetite yet, ( I make him eat some days), but from everything we have read, that is pretty normal, and the recuperation time is measured in weeks and not days. He didn't lose as much weight this time, but seems to be having a little harder time putting it back on, but I think the more active he gets, the hungrier he will be, and the more he will eat. There is no doubt that having this surgery was the right thing for him and and our family, but it will take patience and love to get  your daughter through this.  Many, many nights as I would lay awake listening to Adam running to the bathroom during his flares, I would feel so helpless and so angry as I knew how much pain he was in, and there was nothing I could do to help him. I questioned why young people get this and other horrible diseases. there just is no answer.  Now that the surgery is over, I am so proud of how he handled everything,  more maturely and rationally than many folks that I know that are much older than he is. He's been through a lot, but we are finally seeing the light and we know it was all worth it, becuase he is no longer in pain, and the disease is gone! Good luck, and I hope this helps you a little with the decisions you need to make for your daughter. Take care.

The decision was hard for me because I was still able to achieve remission and stay in it for some pretty long stretches of time. However, my disease has always been VERY reactive to my stress levels, which didn't jive with the fact that I was trying to start college.

I'd been on Remicade for almost a year and a half and it wasn't working nearly as well anymore as it had at the beginning. I started having to get it every six weeks instead of every eight, and even then I would sometimes start to show symptoms of beginning a flare in between infusions. This was towards the end of my senior year of high school. I was in a tentative remission when I left for college.

College wrecked my health. I was very homesick and my classes were pretty intense, and between the dorm food and the stress levels my colon went nuts. I had to drop a class and take a reduced courseload in an attempt to manage my stress. Not to mention the fact that Remicade had me immunosuppressed, and every illness that swept through the dorms seemed to hit me twice as hard as anyone else. I had a Remicade infusion halfway through the term and had a glimmer of hope - I started feeling better the very next day. But three days later its effects had already worn off. I became anemic, lost a lot of weight, and felt too tired to do anything except study, eat, and sleep. That's not what college should be like - I wanted so badly to be heavily involved in the college community and to do all sorts of extracurriculars, but I wasn't going to be able to do that with this disease. I was hospitalized twice during my short little two month stint in college.

My college operates on a quarter system, so I stuck it out until the term ended in the middle of October and then went home on a medical leave. I felt awful about having to do that. At the rate I was going, I would graduate college in 12 years. That was not going to work for me. Something major had to change because Remicade wasn't enough to keep me healthy when I was in the college environment. I was already thinking surgery, but it made the decision so much easier when I had a colonoscopy a few days later and my doctor said I had pancolitis, everything looked terrible, he thought I had suffered long enough and it was time to get the colon out of there.

Over the next few months, I lived at home, ate my mom's home cooking, lived a virtually stress-free life, and started a double dose of Remicade. This lifestyle got me into a really solid remission and I gained the weight back, got my CBC up, even started going to the gym. I felt SO HEALTHY and fabulous. Unfortunately, feeling so good almost made me chicken out on the surgery. I wanted to fool myself into thinking that maybe I would just stay this healthy forever. I had to remind myself that I was living at home, not working, not pursuing my education, doing absolutely nothing with my life, and that I couldn't do that forever. And I knew that if I were to try to go back to college, history would just repeat itself. I knew it would be good to go into my surgery in a healthy state, too. Luckily I didn't chicken out and got my first of a three-step j-pouch procedure on January 19. When all of this is said and done, I hope I'll be able to return to college and go about it the way I always dreamed I would.

It sounds to me like you've physically and emotionally reached the point where surgery is going to do wonders for you. My only concern, and I'm not too familiar with Crohn's-colitis, but might you continue to have symptoms even after surgery? Are parts of your bowel outside of your colon symptomatic?
And this might be silly, but I found the best research for me was perusing this forum! Reading all the "official" information on the surgery doesn't give you any idea what day-to-day life is like - reading other people's accounts does!

I can relate to your post in many ways. I too was faced with the surgery decision last September. I also came to this site with questions and for support.

I am 38 years old. I had UC for about 10 years, and though every colonoscopy showed that it was progressing, it was still moderate. My main symptoms were pain and lots of bleeding. Even while in my "remission" I always bled and often became anemic, but because I only had diarrhea occasionally, I was able to limp along and still do most of the things I enjoyed. I don't feel like it negatively impacted my life as badly as some people on this forum. I had to take rounds of Prednisone a couple of times a year when I would have more major flares, but that, Asacol and Rowasa usually did the trick. That all ended in September when I experienced a severe flare. I ended up in the hospital for two weeks and no amount of Prednisone did anything. I was losing over a pound a day which terrified me. My once strong body (that had been climbing peaks and on an off-trail backpacking trip just three weeks prior) now looked like a skeleton. I remember one night collapsing in my hospital room because I was too weak to stand. I could not believe how fast this severe flare had come on and how quickly it seemed to be destroying me.

Once I stopped responding to Prednisone, the GI docs at the hospital gave me two choices: try Remicade or have surgery. I was in a bit of shock as my UC had never been this bad. I felt I was being thrown into a major decision pretty quickly. I hated the idea of taking that drug (because I didn't like the risks) every 8 weeks for the rest of my life, and was actually leaning toward surgery. Still, I was so weak that I didn't think the surgery would go well, so I tried the Remicade to buy me some time to gain health and make sure I was making a good decision. If I showed no improvement in the week after the Remicade infusion, the doctors informed me that I would be scheduled for emergency surgery. In fact, things were looking so tenuous that the general surgeon at the hospital started visiting me every day and explaining the procedure just in case. Fortunately, Remicade did begin to end my flare, and I was eventually released from the hospital. However, the day I got home I developed horrible joint pain from it. I couldn't walk and it felt like someone was stabbing all my joints with ice picks... it was the most excruciating thing I have ever gone through and no pain meds relieved it. I said enough is enough, and cancelled my future infusions. Fortunately, the joint pain slowly dissipated in about 6 weeks once the medicine left my system. In the meantime, I was very afraid that I was going to be left with this permanent side effect of the Remicade.

That left surgery as my only option. The one infusion of Remicade did buy me some time and allowed me to meet with one of the best colorectal surgeons in our area. It also healed my colon enough to put me in a fairly strong and healthy state for surgery. Of course, I started to have tiny second thoughts thinking if I was feeling so much better, why was I getting surgery? Still... I knew since Remicade was out of the picture, my chances of staying in remission were pretty slim, and that I would be in the hospital again in no time. Better to just get rid of my sick colon and move on with my life.

I decided on a permanent ileostomy even though I would have been a candidate for a j-pouch. I am an interpretive park ranger and lead 2-hour hikes and nature programs, and I didn't want to have to worry about using the restroom frequently... which I was told by my surgeon sometimes happens with a j-pouch. Rock climbing is also one of my huge passions and, after talking to a few climbers who have ileostomies, felt that this option would be easier to manage up on a rock face on a long climbing route. I could swap out a ostomy pouch at a ledge if needed and pack it out. One thing I loved about my surgeon was that, though he was skilled in both types of surgeries, he never tried to persuade me to try one over the other. He gave me the pros and cons of each and was supportive of whatever I wanted to do. He did say that he thought the permanent ileostomy was a fine choice though, and very conducive to my lifestyle. He said I would be able to do all the outdoor activities I loved with it.

It did take some of my family and friends a little while to come on board with my decision, but once I explained my reasoning, they were completely supportive. Part of this was probably because most of them didn't even know I had UC before that point, and I am sure it seemed sudden and drastic decision. I was pretty secretive about my disease... even my brothers didn't know. My mom, who is a nurse, actually did not want me to take the Remicade because of the risks and wanted me to get the surgery. I do think that when some people hear that I chose the permanent ileostomy over the j-pouch right away, they seem disappointed... as if this type of surgery and having a "bag" is the ultimate failure. I don't feel that way at all... I am so happy with it and have no regrets! Everyone's needs and situations are different, but I think it was the perfect choice for me.

Like you... I would have rather had my job than my colon. Interpretive Park Ranger jobs are not easy to get. It was a career I had wanted to pursue since I was a young girl. I had worked years juggling seasonal employment to finally get the good position I have. I did not want to lose my job because of sickness. I was able to return to work eight weeks after my surgery. My incision did open up again a few weeks ago and I had to go back to surgery and miss some more work (long story, but basically I discovered I had an extremely rare reaction to the PDS sutures used in the muscles of my abdominal wall). I am now back at work again, and though I am mainly doing desk work for now, I did lead a fun nature program for preschoolers a few days ago. It felt so good to be back to a state of normalcy and doing what I love.

Hope it helps and best of luck with your decision.

i was at the beach, with my mom, dad, husband, sister, her fiancee and my son, he had just turned one.  It was the first time he had been able to walk on the beach and play in the ocean, and i was stuck in the house because i kept having to go to the bathroom.  I was in the kitchen of the house, and i realized all i was missing out on, and i said, that's it im having surgery.  When my mom came back in i asked her if she thought it would be gross if i did and she said no, and my husband was all gungho for it!  so i went to the dr and said, i want surgery, but he wanted me to try remi, so i did, shouldn't have, and it failed, then i said, you take it out or i will, and they did and now life is great!

You made your decision already, you stated it several times, now comes the hard part where you come to terms with it.  make a list of all the things you can't do right now, all the things that chrons is keeping you from doing.  THen make a list of all the bad things about surgery.  My UC list was pages and pages and pages long, my surgery list had 3 things on it.  And i kept my list until the time of surgery.  I also kept in mind that i was doing it for my son so he wouldnt have to play in the bathroom for hours on end, so i could sit in car line and go to tball games and take him to the store, and be normal again!

good luck!

I remember seeing my G.I. the last time, and he basically told me that the danger to your health from taking all those drugs was greater than the surgery risk.  That did it for me.  My only mistake was going for the j-pouch which basically gave me back ulcerative colitis, except worse. (and now I am back on all those drugs again) Go for the ileostomy and get your life back .

Wow, Blueglass, I feel really similar to you.

My story is this: when I was 18 I was diagnosed with Crohn's Colitis. For 10 years, I had diarrhea just about every single day, sometimes with blood, sometimes with pain. Towards the end it was both, and a lot of it. I went in and out of remission, tried every single drug imaginable, had to give up my teaching job, and became almost broke because my meds were so expensive. I was mentally and emotionally messed up, not to mention the physical. FOR TEN YEARS, I had to get up 3 hours before I left my house so I could have diarrhea. Finally, for the last year of my disease I was on 60 mg of pred, was eating only Ensure, and was losing weight and couldn't help it. The diarrhea was awful--25 times a day at the end. I was wearing adult diapers the last 2 weeks.

Finally my dr suggested surgery. I said no way at first. And then just two days later I changed my mind. I was unable to work at that point. I live alone, and had no way to pay my bills. Like so many others have said, I was just DONE.

Disneynut put it well: a year ago I would NEVER have thought I'd be here, but I'm so glad I made this choice. And yes, I think everyone just gets to the point where they have just had enough. It sounds like that is where you are, and while we can't tell you what choice to make, I think all of us would tell you that we have a MUCH better quality of life now.

March 2010: nearly bald, 92 lbs, unable to work, diarrhea daily, unable to eat, in constant pain, side effects from so many drugs....etc.

February 2011: hair growing back, 125 lbs, working at my DREAM JOB teaching at a wonderful school, NO MORE DIARRHEA!!, eating things I haven't eaten in years, not much pain, and on NO DRUGS. It's amazing.

Let me know if you have specific questions; I'd love to answer them. In the meantime, just reading the posts on this board usually helps a lot. I hope you can feel better soon, one way or the other!!

My symptoms started in 1993 with bleeding, cramps and abdominal pain. I didn't know what it was and I just ignored it in hopes that it would just go away. It did go away in about 3 months. I just suffered through it.  The symptoms came and went between then and 2002. I was scheduled for a scope at one point during that time. I wasn't able to get the scope done for 3 months and by that time the symptoms were gone again so I cancelled the scope.  In the fall of 2002 I flew back home for Thanksgiving with family and friends. I was in a full blown huge flare. It was awful not being able to do thing when I was there visiting. I never told anyone, again I just suffered through it. When I got home I went to see my family Dr.  and he had me scheduled for a scope within 3 days. I had the scope done and was to see the specialist in 2 weeks for the results. I felt even more crappy after the scope. I think it was 3 or 4 days after the scope that I was out doing the morning chores feeding the horses that I just could no longer function. I had to sit down for awhile before I attempted to get back to the house. It must have taken me 10 to 15 minutes to get back to the house about 20 feet away. My husband reluctantly finished doing the chores as I could no longer do it. I spent the rest of the morning in the bathroom. Once out I had him take me to the hospital. They didn't do much and sent me home.  I got so sick and just layed on the couch only getting up to use the bathroom. I was getting weaker and weaker all the time. Then I had a hard time breathing and the pain in my back was horrible one evening. I told my husband that I needed to get to the hospital in the morning if it wasn't better by then. Of course, he being a logging mechanic had had service call to the bush first thing in the morning. It would take him about 4 hours for him to do what he need to do and I could wait till he got home. Things didn't get better overnight, it got worse. I had to wait for him to get home before I could get to the hospital. Finally got to the hospital and the Dr. diagnosed me with Pericarditis. She told my husband that I had only about 4 hours left before I would have died. Spent a week in the hospital and they put on prednisone. It helped the Pericarditis but not the bleeding and the cramping pain. I was in and out of the hospital for close to a month with the bleeding cramping and pain. Then it got really bad and ended up losing too much blood. Finally they shipped me to Calgary where they did  emergency surgery after a week of trying different drugs to get the bleeding to stop. I was diagnosed with Crohns Colitis and had surgery to remove my large intestine all at once, and ended up with an ileostomy Dec 24th 2002. I guess I can say that I'm lucky that I didn't have to go through all the different drug treatments. I'm not sure I would have liked to have done that. I felt much better immediately after surgery. It took about 6 weeks to get back feeling real good and back to work.

I don't regret the surgery at all. I didn't have a choice.. it was either do or die. I get along great with my ileo. I've not had any problems. Had the odd leak now and again, but thats pilot error. I like to push it to the limit before changing the wafer. My ileostomy gave me my life back. I still need to go back for rectum removal. They usually suggest having that done within 7 years of the ileostomy surgery. I'm going into my 9th year now. I need to get it done, but losing my husband to cancer this past summer... its hard to find someone (or someone that I can trust) that can look after the ranch while I get the down time to get it done. I wish they would have done it all when they did the ileostomy.

Good luck to you which ever way you decide. I don't regret having  it one bit.

Polishdan, Cancer in the rectum becomes a risk with time because its no longer in use. I also have trouble with Crohn's flares still happing there once in awhile and I also have a lot of mucus discharge that I'd rather not have.

most of the time the rectum is removed because there can be leakage and other problems if it isnt

I have not posed my story but here it is short and sweet First colon cancer..Then colitis..then illeostomy..I pushed hard on my dr to do the surgery because I HATED the meds! As for  my marking the milestone......I threw out all the mags I was reading in the jon when I spent so much time in there! Now I spend my time in the woods or my kayak!........Now I am not perfect ...but niether are you!   I had my share of complications but I would do it all again if I had to!

Hate to sound like a broken record, but research and find a great surgeon. There can be so many complications...don't add to them by choosing a surgeon without a lit of great experience.