How did you decide about surgery?

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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 2/7/2011 8:06 AM (GMT -6)   
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

worried mom 1
Regular Member


Date Joined Mar 2010
Total Posts : 172
   Posted 2/7/2011 8:29 AM (GMT -6)   
blueglass

I don't know if I am the right person to help you, but my daughter is 15 years old. The remicade isn't working and her doctor would not put her on tysabri cause of the side effects. My daughter usually gets all the side effects from her medicine. Her last stay in the hospital just over a week ago she come to the point where she told me she is done. She is tired of being sick all the time, not being able to go anywhere. She said I think I want to have the surgery. This is a good place to ask questions. Everyone has been so helpful to me. She is also tired of all the medicines. So today we are on our way to the hospital for her first of two sugeries. Thank you everyone

Another UC wife
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Date Joined Jun 2007
Total Posts : 2111
   Posted 2/7/2011 9:19 AM (GMT -6)   
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.
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 in 6/10 to have surgery which was on 12/17/10 (permanent ileostomy - unable to have the j-pouch) and no longer in pain.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 2/7/2011 9:41 AM (GMT -6)   
Making the decision to have surgery is very difficult. One always wants to have hope that they can achieve a long remission. I had UC in remission for 10 years. Then I was hit out of no where with a severe flare. I took up to 22 pills per day to try and swing remission but it didn't work and only left me marginally participating in life. I worked but outside of work and all weekends were devoted to rest. I lost my social life, I had to give up hiking (my passion). Like you I spent 9 days hospitalized for UC and I never wanted to repeat that experience. I made the decision if the hospital stay failed, I would have surgery. I had met a nurse while languishing who had jpouch surgery for UC and she was amazing! She had a very full life, 10 hour work days, ran marathons, had a baby, etc... She encouraged me to think about surgery as an option.

The hospital stay kept me in remission for about 2 months, when I started failing I asked for a surgical consultation. My surgeon told me that the #1 reason for having surgery is to improve quality of life. That hit home for me as I had no life. He also said I would be just fine with a jpouch, something my GI questioned.

Like you, I had no support from family or friends. They thought this was a radical solution to what they saw as a small problem. Hah!! They didn't live in my shoes, they didn't make the sacrifices I made, and they were idiots! Yes, I was scared. Was I making the right decision? However, I knew that I looked good on the outside and I think that's why people just naturally thought surgery was unnecessary. All that changed when my family came to visit me in the hospital after surgery. They noticed how healthy I looked and finally relented. I think that UC slowly robs us of our health and life and because it's so gradual people adjust to how we look.

Anyway, all of that was 10 years ago. I have been blessed with excellent health post surgery and was able to return to hiking and have been chipping away at completing long distance (100-200 mile) international hikes. Life is very very good. It's not the same as having a healthy colon but I knew that I was never going to have a healthy colon again so this life sure beats life in a cycle of flares.

Sue

Luvfraz
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 2/7/2011 10:36 AM (GMT -6)   
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.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 2/7/2011 10:43 AM (GMT -6)   
Thanks, it's really helpful to read your experiences (happy to read more if others want to post). I just suspected that there might be a breaking point for a lot of people. This doesn't feel exactly like a process, although it has been .... just feels like I'm done. I had an 18 day hospitalization 3.5 years ago and a 5 day hospitalization last year, and now this one..... just been a lot. I relate to a lot of you in that I've gradually lost so much of my life -- now I just work, and recover from work, and try to be a good partner, but now I'm losing work too, and it's too much. I adapt pretty well, and that might sometimes be a negative .... a few months ago my doctor was pointing out how limited my life was now, and I was arguing about how many good things were still in it (both true).

Sue, I am sorry you had no support. I actually have a lot of support (not a huge social life, but people rising to the occasion now). They just see how tired I am and want me to get a bit of rest before making permanent decisions. It's great to hear that you're doing so well, and that UC wife's husband is too. I am not sure yet whether I'm a candidate for a J Pouch or not, or if I want it (I'm 48, and it is crohn's not UC).

Worried mom, I feel for you and for your daughter. One of my college students was diagnosed a few years ago -- I was able to be helpful to her, and I know her parents were grateful she had me to talk to. But I felt so bad for her being an adolescent having to deal with this, and so bad for her parents watching their previously healthy 19 year old get so sick. I wasn't diagnosed til I was over 40, and that part is a blessing. I hope things go as well as they can.

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 2/7/2011 10:48 AM (GMT -6)   
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!

Luvfraz
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 2/7/2011 10:59 AM (GMT -6)   
Wow elddi....your story mirrors my 21 year old son's actually. He tried twice  to start college as well, and made it two weeks before finals, and had to drop out of the semester because of a horrible flare.. The second time he started, he only made it two weeks into the semester. confused
Adam just had the j-pouch surgery on January 6th, and he is doing really great. It's a long road to full recovery, as he is still pretty tired most days, but he is starting to eat a little better now, and will be starting back to work here in a couple of weeks hopefully. It is good that you are healthy going into this first stage of surgery, as Adam went in in the middle of a horrible flare, but when the surgeon saw his colonoscopy, he said "this has to happen now." It was just a mess. But after the surgery and once he was home, in a couple of weeks he was feeling fantastic and i know you will too. Once that horrible disease is out of you, your body will thank you!! Take care, and let us know how you are doing.

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 2/7/2011 12:39 PM (GMT -6)   
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.
-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 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

Post Edited (Blueheron) : 2/7/2011 10:46:36 AM (GMT-7)


Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/7/2011 1:11 PM (GMT -6)   
The 5-ASAs stopped working, I was on prednisone which made me crazy and caused me to gain 25 pounds, I ended up in the hospital after starting Imuran, then tried 6mp and it affected my liver. I was done! I was so happy when my pathology resport came back after surgery. It said that I still had inflammation, so even though I felt like I was in remission from the 6mp, I really wasn't so I felt like I made the right decision.

If you told me a year ago that I would have this surgery, I would have said you were crazy. I think you just get to a point where you just can't take it anymore and you want your life back. I knew that eventually I wouldn't have a choice about having surgery, so I opted to have it while I was somewhat healthy. I think it made the surgery so much easier.

Good luck in your decision!
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/7/2011 1:15 PM (GMT -6)   
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!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/7/2011 1:27 PM (GMT -6)   
These posts are so helpful, thanks so much. I relate to so many things that you are saying. I became steroid resistant when I was in the hospital 3 plus years ago, just stayed on the IV steroids for a few weeks, and they didn't help. I also got to a "remicade or surgery" moment, and I couldn't believe I was in that situation, just felt like the twilight zone. I hadn't even tried 6 MP at that point. I decided to trust the doctors, and try the remicade, and I got very lucky, it worked quickly and well. Then the idea was that remicade would tide me over til 6MP kicked in, but I was never able to get up to a high enough dose of 6MP because it affected my liver functions. So, I stayed on remicade, but I had to up the dose and the frequency, and it just didn't work for very long, maybe a year, more or less (still with blood most every day etc.). Then I ended up in the hospital with another flare, and go figure, the IV steroids worked that time, and I got out in a few days. Switched to humira, but it never really worked, and then recently I switched to cimzia, which also never really worked.

When I write it all out, it makes me see how much I've been through, but mostly I have just been trying to get through the day. I am much more of an indoor person than you, Blueheron, so probably the limitations have been less onerous for me. For the last few years I have understood, however, that if I didn't have a flexible job that I'd been at for years, where people cut me some slack because they know what I did for the school when I was healthy, well, I would have been on disability for sure. And it's just been upped to another level, and I want off this drug treadmill and a chance at something better.

gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 2/7/2011 2:47 PM (GMT -6)   
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 .

Luvfraz
Regular Member


Date Joined Apr 2009
Total Posts : 26
   Posted 2/7/2011 4:18 PM (GMT -6)   
gmark - just curious how getting the j-pouch gave you your U/C back? That surgery rids the body of the disease, unless one has Crohn's, then yes, it does remain in your body. Just curious..

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 2/7/2011 6:46 PM (GMT -6)   
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!!
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!! :)

CrohnieCJ
Regular Member


Date Joined Jan 2011
Total Posts : 423
   Posted 2/7/2011 9:34 PM (GMT -6)   
 
Hi blueglass:
 
I posted much the same thing a week ago.  I also have Crohn's Colitis, and have chosen not to do Remicade or Humira.   I was 95% sure when I posted that I was opting for surgery and I am now 99.99% sure I will elect to have surgery.   I don't see anything changing my mind at this point.   I am done.
 
I have spent hours here using the search feature and this site has helped me so much with all kinds of concerns.
 
Here is link to my story and the kind and supportive replies that I received.   
 
 
Good luck with your decision and keep on posting.   There is nobody in my circle of family or friends who can truly know what I go through daily.  This group is wonderful.
 
CrohnieCJ
 
 
 
 
 
 

Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 2/7/2011 10:39 PM (GMT -6)   
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
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 2/8/2011 11:56 AM (GMT -6)   
Brannah
Remove your rectum after the ileostomy? Why? I have never heard of that recommendation. I had my ileostomy almost 4 years ago and have my rectum. It's no problem. Have you read Brian84's (?) posts?

As for my decision to have surgery....One day I had had enough of being sick and scared to leave home, and sometimes sorry when I did. Drove the 170 miles to my GI (which is scary) and said it's time. He talked about Remicaid. I said no. He recommended against j-pouch, which I had never heard of. Went to the surgeon he recommended. He started to discuss the surgery like he was helping to make the decision. I said I wanted it out. I did no research. I was so sick I could not think clearly. My wife was supportive of my decision. This surgery was the first time in my life that I was in a hospital. Had problems after the surgery, but never sorry I had it done. It cut a day off the driving time to Florida (we are there now) because I don't have to stop at every rest stop.

Dan

Brannah
Regular Member


Date Joined Oct 2006
Total Posts : 109
   Posted 2/8/2011 2:58 PM (GMT -6)   
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.

gmark
Regular Member


Date Joined Jan 2011
Total Posts : 55
   Posted 2/8/2011 4:09 PM (GMT -6)   
To Luvfraz who asked me a question earlier in this thread, I should have been more clear. I was speaking figuratively. My U.C. is gone, but my pouch problems mimic U.C. perfectly, sometimes even worse than the colitis I had. I have ulcerated pouchitis again, and now on cipro, and taking rowasa enemas trying to get things under control so I can undergo pouch removal this summer.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 2/8/2011 4:45 PM (GMT -6)   
most of the time the rectum is removed because there can be leakage and other problems if it isnt
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 2/8/2011 5:38 PM (GMT -6)   
I saw my gi doctor today,and asked if he thought surgery was a good decision -- he said it was a good decision two years ago. He is recommending proctocolectomy with ileostomy. He said since I have a lot of rectum involvement, I'll do better if they take that out too.

I am calling tomorrow to get an appointment with a surgeon, then I think it'll mostly be a matter of scheduling. I need to get down on prednisone before the surgery.

I still feel very clear. Very sad, but also very clear. I think decision is coming from a very rational place. Surgery is just so obviously my best option at this point.


Did anyone do any kind of ritual to mark the procedure? It just seems like such a big life change. I sort of wish they could give me the colon so I could bury it or something (not expecting that to be possible).

I really appreciate the conversation on this thread. It's been very comforting. This is one of the absolute plusses of the internet -- would not have been easy to connect with so many different people facing these issues in the past. Thanks.

fish1
Regular Member


Date Joined Jan 2010
Total Posts : 106
   Posted 2/8/2011 6:05 PM (GMT -6)   

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! tongue   I had my share of complications but I would do it all again if I had to!


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 2/8/2011 6:25 PM (GMT -6)   
     I was diagnosed with ulcerative proctitis at age 52 in 1998.  I was on Colazal for ten years and if nothing else, I do believe it did keep my ulcerations confined to the rectum.  At every colonoscopy the only diseased area was the rectum.  My colon only had minor diverticulosis.  However, the rectum is most stubborn to treat.  After running the gamut of meds...6MP, rectal meds, Remicade, Humira, and becoming prednisone dependent, I took the bull by the horns and decided ...ON MY OWN with support from my husband and daughter, to have the surgery.  My GI, although a very good doctor, has feelings of grandeur and did not want me to have surgery.
     From 2008 until I had my total colectomy with permanent ileostomy on June 28th of 2010,  I could count the number of "good" days I had on one hand.  Since my GI doctor refused to refer me to a colorectal surgeon, I looked on the net for a reputable colorectal surgeon in the Philadelphia area.  I live in south Jersey and refuse to have major surgery in these local hospitals.  I made an appointment with Dr. Robert Fry, head of colorectal surgery at the University of Pa. Hospital.  He refused to do a j-pouch on me because he said it was much too risky.  Apparently, my age and extensive use of prednisone was his basis for that decision.  I told him I had no problem wearing a bag, I just wanted to get well.  He wanted me off the Humira for at least six weeks before surgery.  I was still on prednisone at the time of my operation, 20 mgm, but was able to ween off it by the end of July.
       I had a few minor blips but OMG....I am soooooo happy I had the surgery.  My rectum and colon were removed but he left my anus intact.  I questioned that because I did have a few "issues" after surgery, such as a hematoma which had to be drained shocked , not pleasant..lol.  Dr. Fry explained that, in his opinion, there are more complications when the anus is sewn closed.  I have had some mucus seepage, but better out than in.  I find that is lessening quite a bit now.  I feel terrific!!!
     Good luck and God bless.

Disneynut66
Veteran Member


Date Joined Apr 2009
Total Posts : 587
   Posted 2/8/2011 7:43 PM (GMT -6)   
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.
Diagnosed 2006. 1st step of 2 step j-pouch 1/3/11. 2nd step will be in April! So done with this disease.
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