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26 Colitis Surgery Patients Survey Results

Adam from ihaveucDear Colitis Patients, Friends, and Family Members,

UC can be a brutal disease.  But it’s not the end of the world.  There are options, and the one option that everyone should know about is surgery.  It’s a difficult topic for so many people, and not just for patients living with UC.  It’s often hard for family members of UC patients to talk about surgery as well. These are some of the reasons that I felt it was absolutely necessary to run a survey with some users of the website who have already had their colons removed.

I want to thank all 26 of the people who filled out the survey.   The comments you all included are certainly going to make the decision making process for having colon removal surgery much easier for other UC’ers and their families for years to come.

To me, the survey results seem very clear.  The overwhelming majority of ulcerative colitis patients who have decided to have surgery are very happy with their decisions.  This is very positive news.  I hope this opens up new ideas and options for others who are worried that there is no way out of Ulcerative Colitis, because that is never the case.

Below are the actual survey results from the 2012 UC Surgery Survey.  The % figures are based off 26 total answers.  100% = 26

Question 1:

How long were you diagnosed with UC before having your first UC related surgery?

(26 of 26 people responded)

  • 23%- I had surgery more than 10 years after being diagnosed
  • 23%- between 5-10 years
  • 15%- between 2-3 years
  • 15%- between 6 months to 1 year
  • 8%- between 1- 2 years
  • 8%- between 3-4 years
  • 8%- had my surgery within 6 months of being diagnosed
  • 0%- between 4-5 years

Question 2:

How many total UC related surgeries have you already had?

(26 of 26 people responded)

  • 81%- 2-3 surgeries
  • 8%- 1 surgery and that’s all for me
  • 8%- more than 4 surgeries for me
  • 4%- 3-4 surgerieis

Question 3:

What TYPE of surgery did you decide to have?

(26 of 26 people responded)

  • Ileo-anal Anastomosis 3 part surgery that turned into 8 due to complications!
  • 3 stage J puch surgery
  • Total colectomy
  • I had the J-Pouch surgery because my life depended on it.
  • Early S pouch. Number 155.
  • large bowl removed and J pouch formation
  • I had a resection done of my large and small intestion. My illium was most damaged.
  • I had a colectomy with an ileostomy in May, 2011. On November 28, 2011 I had my rectum removed, so I have a permanent ileostomy. In other words, I made the choice to forego the “pouch” reconstruction surgeries. My rectum continued to bleed and to be in a flare. That persistant colitis would not bode well for reconstruction. My doctor felt I have made the best decision. I am turning 60 this year and I just want to be completely well and the risks of “pouchitis” and other complications did not appeal to me at all. My Doctor said that if I were in my twenties he would encourage me to do the pouch, but he felt I made the “best decision I’ve ever made”.
  • I had my colon removed and I will be having a J Pouch consructed and then have the whole system contected.
  • I have UC since 2002 . I got toxic megacolon on september 2010 . I was urgently taken to the operation for total coloctomy . My surgeon didnt take my rectum out . I lived with iliostmy over a year .
    I didnt have J-pouch . My surgeon prefered to fix it to my rectum . I got my takedown operation at 11.11.2011 . Because my rectum is still remaining I have UC . I use salofalk 500mg pill two of them 3 times a day . And I use lomotil for diarrhea 3 – 4 times a day .My doctor told me that I can use limotil up to 9 times a day .
  • A total collectomy with a j-pouch
  • Emergency colectomy and later removal of rectum
  • I’m having the J Pouch surgery in 3 steps (3 surgeries).
  • Two-stage J-Pouch (but, due to complications, we’re now at stage 3 of (hopefully) 4).
  • J Pouch
  • So far my daughter has had her colon removed, she had surgery on Dec 21, 2011 she has an ileostomy bag, will soon have the Jpouch surgery and then not sure whats next for her! Will see the Surgeon on Monday Jan 9. to see what is next!
  • Subtotal colectomy with a temp ileostomy and j pouch surgery
  • Sub-total colectomy and j-pouch
  • Permanent ileostomy.
  • 3 step j-pouch surgery.
  • Iliostomy reversal with jpouch
  • Total colectomy with j-pouch (ileoanal anastomosis)
  • I had my colon removed. Then I had a pouch for about six months. The last surgery I had a take down and now I have a j-pouch.
  • I had the J-pouch surgery with an interim ileostomy bag.
  • Total colectomy, followed by fistula repair from first surgery, lastly ileostomy takedown.
  • Ileostomy; then a j-pouch creation that failed, result in ileostomy #2

Question 4:

Why Did You Decide to have Surgery?

(26 of 26 people responded)

  • Had no choice. I had been on Prednisone so long, Remicade for a year and all the other stuff and my body was loosing the battle. I became weaker, bleed more and had to quit my job that I loved. One of the surgeons said they were afraid my colon would fall apart inside me during the surgery!
  • I was too ill and my bowels were too unwell to remain in my body
  • My colitis was too severe and couldn’t be controlled with medication, I was sick for 3 months, lost 25 lbs and very anemic
  • I didn’t have a choice!
  • After 10 yrs I was told my colon was pre-cancerous and I could not live tbe way I had been living any more.,
  • never went into remission, on a high dosage of drugs (and lots of them)
  • After six months of intense pain and discomfort, my doctor decided to do exploratory surgery. When he went in, he saw the problem and my 30 minute surgery turned into a 7 hour surgery.
  • I spent two years going thru Hell – sick, weak, scared, frustrated, hospitalized at one point with Colitis Flare,
    C-Diff infection and H1N1. It was not a happy time. I started Remicade which controlled the flares, but that drug, while controlling flares always scared me and I never felt great on it. After 8 months it stopped working, so I decided to have surgery.
    I was also sick of Prednisone and pain pills. And missing out on my life and having fun with people I love.
  • I became so tired of being sick all the time. Plus all of my medications I had tried had failed me. My doctors had declared me a medication failure. Predinsone was no longer working for me.
  • I didn’t decide to have operation . I had to have it because of toxic megacolon .
  • My doctor urged me to because I wasn’t responding to the 16 different perscription meds I was prescribed and I had also gained 75 lbs very rapidly due to Prednisone
  • Surgery or death. Due to UC related intesusseption
  • A combination of my doctor strongly urging me too, all the medicines failing me and the simple fact that I was miserable and was going to shit myself to death.
  • Exhausted all meds (including Remicade), exhausted all diets (SCD, dairy-free, VSL #3, you name it). Only thing that worked was prednisone, which is not a viable long-term solution.
  • I wanted my life back!
  • She was diagnosed in Feb. 2011 and struggled so much for all most a year, all the meds they put her on didn’t help her at all. She just kept getting worse, then around mid Oct. she started with really high fevers that wouldn’t go away. This lated for 2 months they put her in the hospital the week of Thanksgiving and was told she has C-Diff a highly contagious infection, she was quarantined. Then as we thought she was getting better she started up again with the high fevers so back to the doctor we go. The next day she had a colonoscopy and we were told it was so bad that they couldn’t even go all the way through the colon. She was then put into the hospital again but for inflammation and severe weight loss, she was so malnutrisioned. She was given the Picc line for the TPN. She was there for 8 days, then got to go home for a few days. Her GI doctor was so concerned that she suggested my daughter have her colon removed for she was afraid it would rupture. Well of course this scared us, so after much thought and praying. We went ahead and decided to go ahead with the surgery within a few days of going home from the hospital. She is doing pretty good so far, she has been out of surgery going on 13 days. The biopsy of her colon showed that it was UC and not Chrons which they thought she might have also, she was having alot of the signs for that too!! We are looking forward to the road to good health!!! God has truly blessed us!
  • side effects of prednisone/ Remicade treatment where unbearable to me and the treatments were not bringing me into remission.
  • Because the side-effects, and potential side effects, of all the medicines I was taking was about as debilitating as the disease. I didn’t want to be crippled with some kind of arthritis or something later on in life.
  • I put it off as long as I could but I couldn’t get off the prednisone or I went into a flare. My entire colon was involved and I was in a lot of back pain as well as colitis pain.
  • I was steroid dependent and my only remaining treatment option was Remicade. I felt like the risks from Remicade were not worth the short length of time it would probably work and I would end up needing surgery eventually anyway. I decided to do it while it wasn’t an emergency and I had time to pick my hospital, surgeon, etc.
  • No choice it was life or death
  • No other meds worked; became medication refractory
  • I was real weak and was going trought a flare-up that was not responding to medication. The last medication I tried was Remicade wich did not work. The next step was surgery.
  • I didn’t respond to oral medication or steroids, and the double dose of remicade was becoming ineffective. My symptoms would return a month before my next scheduled dose.
  • Exhausted all medication options with minimal to no results.
  • It was either the surgery or live the rest of my life in misery because all medications, including prednisone, stopped working.

Question 5:

Were you scared about anything regarding your surgery? If so, what types of things were on your mind?

(26 of 26 people responded)

  • Everything…the stoma being perminent on the outside of my body scared me most. Boy, how stupid I feel now because now I know even with the bag inside you, it’s bad. I mean, I still suffer pain but I’m not bleeding now. I have been infected, well, my pouch has for almost 1 year now! And I know what they are going to want to do,,,another surgery at some point. I’m 48 now, I’m not 20 when recovery from surgery was not too bad, now recovery takes longer and I get adhesions which doe’s not help. My joints hurt all the time now and I tire easily. Also, I don’t get nutrition properly so I suffer from side effects of that too like bone loss, tooth decay, gum disease ect. Sorry if I sound negative but it’s no picnic now I’m on all kinds of meds too just different ones then from before the surgery. Lots of antibiotics.
  • I was worried about the possibility of not being able to have children. Other than that I was not scared at all.
  • None
  • I was nervous at first about having the bag and the pain and recovery but when I realized that I didn’t really have a choice then I just figured there’s no sense being scared or nervous because it’s the only choice I had!
  • Having to keep the ostomy, being what seemed to be as sick after surgery as I was befote.
  • Didn’t know much information of the surgery/not alot of info around at the time (about 10yrs ago). Not many people had had it and as everyone seems to have different results wasn’t to sure how well it would work.
  • No because I wasn’t aware I was going to have to such major surgery.
  • I was afraid of dying, I was traumatized by the idea of wearing a colostomy bag. But I was more scared of being chronically ill. Turns out the ostomy bag is a piece of cake. I barely think about it any more.
  • The only item that really scarred me was the surgery not working. There were other items that scarred me too, but they were just little things. For example to shock of having a bag collecting my waste attached to me when I first woke up, the fear of the dr not being able to do the surgery laproscopically, what I would feel like after having surgery, how would I pay for all the medical bills, etc… but I just have to trust that everything will work out.
  • I was scared of having iliostomy for all my life .
  • I was and I wasn’t because I thought this was “the cure” I was actually quite ready to have the surgery ASAP but my moms apprehension about it drug me down. I was 16 at the time I made the decision to go through the surgery. Looking back now as a 32 year old adult I can’t even comprehend someone allowing me as a child to make that decision!
  • Yes. Risks of surgery related complications and finding normalcy with an ileostomy
  • Sure. The number one scary thing about J Pouch surgery is that you don’t know what the end result will be. You read a lot about people coming out after all their surgeries to get their J Pouch and they feel like they still have UC because you use the bathroom. Almost as much. But you can’t let that scare you because most surgeries are successful.
  • Everything about it. Dying during surgery. Life with an ileostomy (even if temporary). Would my J-Pouch work?
  • Being worse and or also having chrohns disease in the future.
  • We were scared of lots of things, alot of the unkown!!!!
  • Yes. I was completely scared of the ostomy and what my life was going to be like with one. Was worried about having my bag leak and if I was going to be able to find nice clothes that would accomodate the bag. Worried if other people around me would be able to tell that I had the bag. Wondered if my nutrition was always going to be compromised because I struggled with diet and staying hydrated. I basically worried about everything and anything under the sun.
  • I was worried that it would go badly and that they wouldn’t be able to go on with the j-pouch surgery later on and I would for sure be stuck with an ostomy forever.
  • I had my surgery in 1990, before the Internet. I had no idea what was going to happen. I mostly wanted to know what the pouch looked like and would it show under my clothes. I was lucky enough to have an ileostomate visit me in the hospital the evening before surgery. We talked and she answered all my questions and put my fears to rest.
  • I was afraid the recovery would be really painful. I was also afraid that living with the ileostomy would be really difficult.
  • The ostomy bag scared me
  • Pain; ileostomy bag
  • I was scare at first thinking about the cut and living with an ileostomy. But after so much pain I was ready to get rid of my colon.
  • I was terrified before surgery. The idea of having an ileostomy bag-even for just a few months-was so scary to me. It is not easy to deal with and I just got a bowel obstruction from an adhesion caused by surgery. It is strange to get used to, and emptying/changing it can be a hassle. However,, I know that my next surgery is not too far off, and that keeps me going. The surgery itself is incredibly painful, but they did everything they could to control it in the hospital.
  • I was scared of getting a fistula (lol specifically the exact kind I ended up getting) and of pouch failure.
  • Yes, was worried what my life would be with a bag attached to my stomach. What could I eat with only one intestine?

Question 6:

How many days were you in the hospital after your FIRST surgery?

(26 of 26 people responded)

  • 5-7 days —46%
  • More than 10 days —27%
  • 7-10 days— 15%
  • 4 days— 8%
  • 3 days— 4%
  • 2 days— 0%
  • 1 day—   0%

Question 7:

Are you HAPPY with your decision to have UC surgery?

(26 of 26 people responded)

  • 85% — YES
  • 15% — Undecided
  • 0% —   NO

Question 8:

WHAT ADVICE would you offer to another UC’er who is considering having colon surgery?

(23 of 26 people responded)

  • I can’t advise any one on this one. It’s been so hard for me, so many complications I think my perspective is going to be skewed a bit. Plus, I had no choice, it was surgery or death, they did not even think I would pull through…but I did. If you have a choice, I would never, never take out my colon voluntary because you need it for so much. You don’t realize till you loose it, you will never, never have a good poop. It is always diarrhea only it’s thick or thin…neither is good for reasons different reasons. I would ask for them to leave the sphincter and that would make it a bit easier. But for me, I was also diseased in the rectum, I guess that’s why they took it too. I can’t advise anyone but I can say, I’m happy I’m alive but my life is very difficult! That’s it. (: I know, I babble on a bit…sorry, just thinking out loud. (:
  • Do it sooner rather than later. There isn’t a decisive cure for the illness except for surgery. Therefore, there’s a strong likelihood that if you require surgery later in life there is an increase in the possibility of complications and pouch failure. Additionally, if you opt to have surgery at the last moment when you’re really unwell you place yourself at risk of complications.
  • A lot of people seem to be nervous about having surgery because of the pain and recovery time, but in all honesty, I’ve been living more of a normal life pain free, symptom free, UC free and it feels great. It was well worth having to deal with surgery and recovery to get that infected colon out of me. I can eat WHATEVER I want and don’t have to worry about where the bathroom is.
  • For myself it’s been great, no more drugs. Manage when I want to go to the toilet, have more control over things. Have better quality of life.
  • I feel that it depends on how the UC is effecting your life. For me, I was miserable 24 hours a day, 7 days a week with periods of being ok but those were far and few between. Since my surgery, I am very happy and went almost 12 years before I had my next major flare up. I am SO VERY HAPPY!!!
  • Find a good surgeon, read all of the material he gives you. Limit your inquiries on the Internet, they can be inaccurate. I also tried everything: SCD diet, lactose free, gluten-free, meditation, many anti-inflammatory supplements. Search your heart, follow this marvelous gift of a website that Adam has created. Insist on Coloplast products – the bags they gave me in the hospital had this lame plastic barette closure which poked me and I worried it would break. I use bags with Velcro closure. Really a very thoughtful design.It’s been almost 5 weeks since my final surgery. I’m able to do things, but I still hurt a bit, I can’t sit on hard surfaces. I can see the light at the end of the tunnel, but 8 weeks will probably be turning point.
  • Try to stay postivie. Don’t be afraid to take your pain medication, it will make your life easier! Listen to your drs. Eat small meals, especially at first with your colostomy bag. When you test out foods eat small amounts at first and see how your stoma reacts to it, the last thing you want is a blockage. If you eat something spicy it will burn coming out, it doesn’t do any damage to you it just burns. Protect your skin around your stoma, use the powder that protects it even at the slightest bit of irritation. My biggest gripe was the bag hanging, it drove me nuts to have it pull on my skin. I bought myself a pregnancy belt to hold my bag in place. You can find something similar online but they were more expensive.
  • To get lots of information from the people who had operation before reaching any decision .
  • Though its been 15 years since my last surgery to reconnect my j-pouch I’m still very much so unsure it was the right decision. I grew up in a household of Mc Donalds, potato chips & junk food. I didn’t have a proper example of what healthy food was and even now when my mom
    sees me eat fat free milk and whole grain bread she turns her head in disgust. I try to convince her if she just tried healthy foods she might actually enjoy them. I wish I had understood food can be medecine if you eat the proper things.
    I wish I had known going into it I’d still have to poop several times a day. That would never change for me. The urgency isn’t there like when I had UC but my poop is the exact same concistancy and I go at least 10x a day if not more
  • Humans can adapt to almost any type of situation, life with an ostomy is one million times more enjoyable then life with severe UC.
  • Look at the big picture. Ask yourself if you want to live like this the rest of your life (meaning with UC). If your UCis bad enough and it’s not getting better after months and all the medicine in the world isn’t helping, it’s probably time. Get a good surgeon, one that does this type of surgery all the time, you may have to travel, but it would be worth it because it’s a big deal. It’s in your favor to do the surgery when you’re still relatively healthy, because the chances are if you’re really sick and not getting better, you’ll end up in the ER and your colon will be removed without you knowing it because they need to save your life.
  • Talk to people. Ask to speak with other patients. Find blogs about it (shameless plug: Email those people. Talk to them. Make sure you have a good support system in place. You will need help. And the adjustment to ileostomy can be very emotional. It’s important to have people you can talk to. Don’t be ashamed of the surgery or having UC. Throw yourself a “No Colon” party when you feel well enough. Be patient — it’s a long, difficult process.
  • I would do as much research as possible and talk to other people who have had the surgery. I’m learning some things that I did not know before the surgery now. Also reach out to others I didn’t do that for years and it would’ve helped me out alot. I felt alone in my fight with UC. I no longer feel that way because I started communicating with others with the same issues.
  • I would tell them, yes it is very scary surgery. But well worth it in the end!!! I see a much happier daughter and is wanting to get to normal every day life! She has had to miss alot of life due to this as alot of you know. Just remember there is light at the end of the tunnel and its ok to be scared!
  • Do your research. Reach out to other people in the uc/ostomy community or whatever. They are a very friendly helpful bunch of people who have lots of great insight that doctors and nurses just can’t offer if they haven’t personally had experiences with uc. Also it’s normal to be afraid. You’ll probably hear lots of horror stories that will terrify you but it shouldn’t deter you. Everyone is different and just because one person has a bad experience does not gurantee you will. I let all the bad things I heard really pysch me out and in the end it has actually been the best decision I’ve ever made.
  • Try everything you’re comfortable with trying before having surgery, because it’s a big commitment (obviously). If you do decide to have surgery, try to get as healthy as possible (exercising if you can, eating as well as possible, lots of water) before surgery, because it’ll cut your recovery time down a lot. When you’re in the hospital recovering, walk as much as you possibly can (it’ll ease the gas pain). And Sleep. A LOT. Also, talk to your doctor and research, find the best surgeon and hospital you can.
  • If you are at the stage where surgery is being considered, have it done. Have surgery sooner rather than later. There is no cure for UC. My ileostomy let’s me lead a much more normal life than what I was leading before ileostomy surgery.
  • If you are even thinking about surgery, figure out where you would like to have it done and get a consultation with a surgeon. You will learn all of your options, what you are a good candidate for, etc. Most importantly, you will have established a relationship with the doctor and have a plan in place rather than trying to sort those things out in the emergency of a really bad flare.
  • It actually is a blessing in disguise!
  • Be prepared for a long, tough first few weeks after first surgery – it will suck and you wil hurt. Remember that it will get better. Listen to your body and go at your own pace, even tho they might be pushing you to try certain things.
  • If you have tried medication and its not working, you may also want to try alternative med. but if you are real weak feeling that you just cant take it anymore and having more bad days than good ones. I woud recomend getting the surgery, its a way of getting back your life. I was scare at first but I’m glad I did it. The process will feel long but its worth it. Wish you the best.
  • Stock up on butt burn ointment prior to having your ostomy removal(or before surgery if having the one step) and put it on BEFORE your first bowel movement. I love ILEX (online purchase only I think). Also don’t leave the hospital if you have an ostomy before you speak with an ostomy nurse and get good instructions on getting your ostomy bags to stick.
  • It’s not the end of the world and you can live a normal life.

Question 9:

Please add ANYTHING ELSE you would like to add about your UC Surgery experience?

(14 of 26 people responded)

  • The first part of the surgery, when they pull your small intestine through the abdominal wall and give you the stoma is the easisest surgery of them all. You have a sense of…oh, this is not too bad, because you can eat for the first time in many years ect. This is the time you adjust to that stoma looking up at you, it’s creepy! But it’s a part of you and it’s pink and healthy! The surgery that is hard is the one where they connect everything back up to eachother and put your pouch inside you. That surgery, I stayed in the hospital 2 weeks! You can’t move like the first one, and your tired, tired and tired. Now your dealing with diareha and you have to learn to adjust to your electrolytes constantly leaving your body! That’s why your so tired I guess. I went to the ER a few times with no electrolytes your heart rate goes wacky and your lightheaded, I almost died that way! I learned not to drink even water, I can’t, I can only drink Gatorade or something with electrolytes plus I take electrolyte pills and powders…this is forever! Sometimes it really messes with my head. It helps a lot to have support! Adam, what you do with this web site is HUGE to people like me, us because we need to have others around us that understand this stuff. So that helps. I will have another surgery at some point to replace the bag inside me…I don’t know how that works but I’m not looking foward to it, I’m just trying to get the bag I have to keep un-infected! It’s been a year infected now! Yuk. I don’t think you should tell this stuff to other uc’ers, they go through enough. I don’t think they should know every awful thing that can go wrong. Just because it’s happened to me, I don’t know that’s it happens with others. I hope not! I hope others are ok. (:
  • I had complications in my surgery. But overall it’s been alright. It’s all in the mind how you deal with the changes. Speaking as a UC’er I see no big deal in the illness, there are illnesses that are far worse and carve out deeper inroads into your quality of life. So it’s a matter of looking at the bigger picture and not becoming self absorped as one is prone to become when they’re feeling unwell. Importantly, you need a sense of humour. And you can still have sex :) which is really important.
  • My surgery experience was tough because I was SO SO SO weak going into the first one, that recovery took a good month or 2 until I felt comfortable to walk on my own. I got used to having my temporary colostomy bag within a week and after that, you just need to OWN it. If you feel shy or nervous or self conscious about having it then others might look at you the same way, but if you OWN your bag, people will have no choice but to like it too! Show it to people, ask people if they want to see it, let people ask you questions about it, OWN it.
  • Took a good year from first surgery to feel better and build some of the muscles up to have better control over J pouch.
  • I can eat anything I want now, but while I’m recovering I’m too tired to cook sometimes, so friends and family bringing food has been a real blessing. After a little walk I always feel better. Helps with mood, too. At one point I bought a plastic sitz bath ($20.00) that fits perfectly in the toilet when the lid is up. Once in a while, soaking in warm water with Epsom Salts is wonderful.
    Also, I found a website/business called “Ostomy Secrets” They sell underwear, swim wraps, etc, for ostomy people. The owner is an “Ostomate” as are all of her employees. For some reason, seeing these healthy, attractive, highly functioning people and reading their stories was a huge comfort for m
    Beware of lifting after surgery and try to stay positive, It’s a choice.
    I have a lot of empathy for others on this site. This site really has meant a lot to me.
    Good luck to All and Best of Luck and Health in 2012.
  • Be patient with yourself, try and stay positive, eat healthy, after your surgery go for walks even if you don’t want to, it will make you feel better and it will only help your recovery go faster. Once I got home from the hospital I wasn’t left alone for a week, that really made the time go by faster. Its not that someone always had to be talking to me or doing something for me, it was just a comfort to have someone there in case something went wrong.
  • The operation is a very difficult . Give lots of pain and hard days .Its to early stage for me to say If I am content about my new life . But I am wondering If me and my surgeon choosed the right way keeping rectum instead J-Pouch .
  • Good luck if you decide to have the surgery.
    Just a heads up the flare ups of pouchitis are almost just as bad as having UC and I have a flare up at least twice a year and it lasts for often months at a time.
  • Living with a bag is pretty weird at first and yes, pretty disgusting, but it far outweighs taking a million bloody shits every day. You get used to the bag and there are many different types to choose from. Most people are lucky and the bag is only temporary like my case, but I would easily pick a bag over my rotten colon anyday. Funsurvey Adam!
  • Be supporting, understanding, and just share feelings. Let people know the truth about this disease and what you go through. At first I had a hard time explaining it but after I did I felt better about it all. Plus I had more support from family and friends. Stay strong and keep fighting. Its all worth it! Also make sure your comfortable with your doctors and if your not find a new one if possible. Also ER visits, well not all doctors seem to understand UC. That seems to be the norm from what I’ve experienced. With the surgery ask alot of questions and even ask other people who have actually gone through it.
  • It’s important to know that surgery can go worse than expected, but it’s also important to consider that it can go very well. Mine did, but I used to be extremely healthy, I eat fairly well, and I drink lots of water. Don’t get discouraged too easily. It’s not going to be easy, but I bet it’ll be worth it.
  • Gaining weight actually helps you get through the surgery better
  • Despite the unexpected third surgery and some difficulty getting used to the ostomy, it was the best decision I have ever made in my life and it turns out it was saving my life (my colon was significantly worse than the scans showed)
  • Don’t be afraid to ask for help after you’ve had surgery, learning how to do everything with your bag (if you have one)


****Thanks Again to everyone who has participated in the survey! -Adam)

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11 thoughts on “26 Colitis Surgery Patients Survey Results”

  1. Hi Guys.

    I would like to know if anyone out here has had elective surgery for mild UC? I do not want to take
    ANY medication as I don’t see the point in ruining my other healthy organs to then one day have to
    remove my colon anyway.

    Can we opt at anytime to get our colon removed?

    The constant worry of what this disease could do to me is terrible.

    Sorry if this is upsetting to the ones who have had their colons removed it’s just I’m trying to be
    proactive and get rid of the disease before I actually get worse.

    Does this seem crazy to you all or is it a good approach to take?

    Thanks :)

  2. Dear Friends,

    The doctor for our daughter in 1995 tried his best to save her colon with what he had been trained to do. It did not work. From diagnosis to surgery was only two and 1/2 months. The surgery basically saved her life. The doctor at the time even allowed us to work with a pediatric homeopath in the hospital and with her diet as best as we could at the time.

    She is now 28, a college grad, a horse lover and children’s riding teacher. She is having a major flair up. Very upsetting. I am going to try SCD with her for moral support. Her diet is already pretty clean but we are going to try this. She had to part with her lesson pony as she could not keep things up for the last 7 months.

    She has always had to be careful. Gosh darn it, is she tired of it. But she is on the planet and has hope to recover. Since 1995, we had to sort of pave a way that was unique to her. We listened and followed and have learned that UC does not have to control your life even though it sometimes wants to. Like now. If I had known about the diet in 1995, I would have tried it for her.

    1. it’s not out quite yet, but there is a liquid diet called soylent that is coming out soon that has every known thing that the body needs in chemical form. if she has a hard time eating or she handles some food better than others, she would handle this like her best food.

  3. Thanks for all the valuable insight. I’m at the point of considering surgery. 6 months diagnosed with UC, Remicade, L-Guta, VSL#3 (1 week so far after switching from Ultimate Flora Critical Care), Prednisone (can’t get below 10mg without blood returning), fish oil. Weak, tired, 6-8 bms a day with mucos.
    My questions for anyone who’s had surgery (J pouch)…1)How often do you go to the bathroom now? 2) What steps / supplements etc do you need to take to stay properly nurished / hydrated?

  4. I think we need to be very careful about touting surgery as a cure and final step with this complex condition. Surgery may be necessary for some individuals. Surgery is perminant. It also comes with major risks and side effects as with any surgery. Some individuals continue to have gastro and flareup issues not to mention infection, so understand this is not a cure for UC. The choice should should be very personal, well researched and thought through, depend entirely on your unique situation, and remain a last option.

    I respect and appreciate sharing experiences but want to underscore that surgery is no guarantee cure. One size does not fit all. It may help me many just not an cure. If surgery was a cure then then medicine and science would understand and be united in the cause(s) and complexities of UC.

    Peace and be well.

  5. After being real sick for more than 4 years, I have been in a good place for over two years using Remicade, Imuran and Lialda; and I always wonder how long it will last. This is a ton of great information from people who have been there. Thanks for that.

  6. HI I am Juju,
    i have UC, i got Surgery to remove my entire colon, i decided to take a permeant ostomy, my doctor said there is no cure for UC. so i remove my entire rectom and anal. after that i have no more UC , no more med.

  7. I’m about to be reconnected in one week. Wanted to see what foods I need to be eating after the surgery and for the rest of my life to be healthy.

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