Angela was diagnosed with ulcerative colitis17. At 20, she had a colectomy, where they removed her colon.
Can You Cure an Inflammatory Bowel Disease (IBD)?
There are only two types of inflammatory bowel diseases: ulcerative colitis and Crohn's disease. They are both very similar and relatively prevalent, affecting one million people. A half-million of them having Crohn's and a half million who have ulcerative colitis. I had ulcerative colitis. I say had because I had my colon removed. Does that mean an IBD can be cured?
Well, yes and no.
There is essentially a cure for ulcerative colitis since it only affects the colon. Believe it or not, we can live without a colon, so if we have the colon removed, the disease is gone.
Crohn's disease, on the other hand, can never be cured. It affects your entire digestive system from your mouth to your anus. Even if only a portion of your digestive tract infected, if you have that portion removed, another part could easily flare up with the same disease. Therefore, you can never truly be cured of Crohn's.
The Deceptive Truth of Curing Ulcerative Colitis
I am cautious about recommending anyone having their colon removed to cure ulcerative colitis because, in some ways, you are trading one illness for another set of digestive issues. The first couple of years after the colectomy, the removal will impact your everyday life.
1. You may have to eat differently due to scar tissue caused by the surgery. Scar tissue may cause blockages in your intestines. Blockages cause the most horrendous pain you can experience. There is continual vomiting every few seconds that can't be controlled or suppressed, and it's not an intermittent pain that comes and goes. It is a constant stabbing, severe debilitating pain that puts you on your knees with tears in your eyes. As long as you are cautious about adding new foods, you can avoid having this happen to a certain extent. My blockages were caused by pears, popcorn, and one other time that I cannot pinpoint a food.
2. You will go to the bathroom numerous times a day, and your stool will always be somewhat loose. At first, I went around ten times a day, which is a step better than my 20 plus bathroom trips before I was hospitalized and had an emergency colectomy, but it was still not pleasant. As my j-pouch (a created pouch to work as a colon) adjusted, I went to the bathroom less and less. Now, I probably go six times a day or less, and none of them are urgent!
3. Your stool will be loose. Honestly, I rarely ever hear a Kerplunk in the bathroom. I know TMI, but if you suffer from this, you probably won't either, which doesn't bother me most days. Early on, it did because my bottom would sometimes have rashes that I had to put Desitin on (these rashes are often referred to as butt-burn because of your butt burns). Some of the less severe butt-burns made me imagine being one of those dogs that drags their butt on the ground. Don't' worry, I never did, but I always itched.
Butt-burn took about two years before it was not a daily occurrence, and probably three before Desitin stopped being a staple in my house. Now, I only use it when I have the stomach flu, and my normal soft stool becomes water. The worse part about watery stools is that your body cannot detect a watery stool as a stool when you're sleeping. It thinks it's gas, and you can mess the bed. So if I know my stomach is off, I wake myself up periodically and sleep on a towel, usually separate from my husband. It's gross, but it's part of life. Someone seriously considering this choice, needs to know the gross and the uncomfortable.
Becoming Disease Free
The bottom line is, I don't recommend you have the surgery to cure your ulcerative colitis unless you are suffering from a severe case. For me, severe meant 20 plus stools, constant vomiting, and an emergency visit that turned into a month-long hospital stay, and the doctor saying, "If you don't get this surgery now, you could die." Maybe you shouldn't wait that long.
If you do go under the knife, don't expect to wake up and be completely healed. Your body will never be normal, but sometimes slightly abnormal is better than perpetually sick. Also, there are a lot of complications that can be caused by having the surgeries. A small sample of my side-effects of the operation include severe scar tissue, infertility, numerous abscesses that led to three surgeries, blockages, fear of sleeping with the stomach flu, six bowel movements a day, butt-burn, pulmonary embolism).
Do I regret having the surgery, of course not, I wouldn't have survived otherwise? Am I thankful for it? Yes! Do I wish I had gotten it sooner? No, because if I had gotten it before my disease got severe, I might have felt there was no real improvement, and being upset at myself for losing my fertility.
If you have any questions and are considering this procedure, feel free to ask me anything. I'm pretty open about it, and not afraid to answer the TMI questions!
Read More From Patientslounge
Living With an Ostomy
Living with an ostomy can be embarrassing at times. I had one for only six months of my life, and it was one of the hardest parts of all my surgeries and illnesses. I made it through with the help and advice of others.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
Questions & Answers
Question: My son's been out of work with C. Diff. Colitis. He's on numerous medications and is still contagious. How long can he go on with this?
Answer: Any requests for medical advice need to be directed towards your doctor. C. Diff. Colitis and ulcerative colitis are two different diseases. Ulcerative colitis is not contagious.
Question: What is the cause of Ulcerative Colitis?
Answer: Unfortunately, it is currently unknown as to what the actual cause is. It is known that heredity genes play a part.
© 2010 Angela Michelle Schultz
Angela Michelle Schultz (author) from United States on December 01, 2018:
I had my colon removed, and now eat dairy, gluten,and yeast free. I am doing very well.
Brenda New to this! on November 28, 2018:
Thank you everyone for sharing your stories and the do's and dont's of living with Colitis. I just got the call from my GI doctor on Tuesday Nov 28, 2018. I have identical symptoms as each of you. My case is considered Chronic! Do any of you continue working on a daily with this disease? If so how? What do you guys eat for breakfast, lunch and dinner each day! What RX help you to function and be productive each day.
I appreciate each of you!
. on April 03, 2014:
Colitis cured by eating only fresh vegetables for 3 months
Angela Michelle Schultz (author) from United States on February 25, 2014:
My best advice to you, is eat three marshmallows right before bed, it slows the digestive tract. Also, I still was getting up a year after. I bet you in a year or two you will forget all about these days. Best of luck to you.
Jessi on February 23, 2014:
I had the surgery because the colitis had spread throughout all of my colon. It was 98% effected before I finally was told surgery would be my only option. Going through the initial steps to try to help relieve some of the symptoms resulted in a severe weight loss...150 lbs to be exact. I went through the first surgery and had to wait a year for the second and six months to do the final reversal. It was a long process and my patients were wearing thin with the disease. Now I still have issues (been about a year and a half since the last surgery) and don't know of more than a handful of nights where I have actually slept through the night. Some nights are better than others but for the most part I have a significant inability to sleep without feeling like I am getting up and down a lot of times to go to the bathroom. I wish there was a way to get a good night sleep again. That's the only thing I really feel is my downfall. If anyone has any suggestions I would love to hear them. I can't take Imodium as it makes me sick and binds me up to the point where I can not go to the bathroom. I take probiotics on a daily basis and that helps some but still does not resolve my issues with sleeping.
Angela Michelle Schultz (author) from United States on January 07, 2013:
If I'm completely honest, the total cost of hospitalizations and surgeries throughout my colon removal, it came to 250,000 dollars, but insurance paid for majority of it.
My main concern though is unless your symptoms are severe, you may not benefit from the surgery, especially the first year.
Working out your abdominals is definitely a great choice. the healthier your body is, the better you ulcerative colitis will be. The abs also have nothing to do with the gut. Just because they are located near each other.
Jesse Espinoza on January 03, 2013:
It's a relief to read this and very helpful ,I was doing some research to find out if it's possible to bodybuilding having ulcer colitis,when I came across in the bodybuilding page removing the colon will cure this,so I google how much would it cost and came up across this article,Wondering how much did it cost?also Im taking some pills three times a day before meals but I try to eat four meals.a day that includes chiken breast boiled with broccoli and carrots and potatoes and cilantro and rice with corn and drink mostly apple juice,Is there a limit of food intake or consume is it forcing my stomach too much?I'm 25 notice all this symptoms last December I was so healthy and strong went to the gym four days a week I'm.5'11 and started at 135pounds by December I weighted 160 and focus on my abs that was the main reason I joined when I notice frequent restroom visits ,I lost weight within a month to 130 felt so down and had no idea what to do,it was a struggle in work being under the sun for ten hours five days a week in the ag fields,they finally came my bday September doc tells me There gonna put a camera inside to see what's wrong,when it happened found out I had ulcer colitis,it's frustrating knowing that one of my strongest body part being the abdominal inside is the weakest,I also appreciate you suggesting to seek out a nutritionist,I have a six and now aiming for an eight which brings me to another question working out my abdominals twice a day a healthy choice?
Angela Michelle Schultz (author) from United States on May 22, 2012:
Despite all the bad I've said about having your colon removed, it is one hundred percent better than having severe symptoms. Life is good. There are downsides, but overall I'm happy with having my colon removed.
Truth is there is only one way to be cured of ulcerative colitis and that is to have your colon removed.
Vitaly on May 22, 2012:
I've been suffering from ulcerative colitis for over two years and i'm still far from being completely cured. The best remedies i've found over this time are porrige with olive oil, mashed potatoes with raw herring, vitamin D3. Avoiding all dairy also helps. But bleeding is a far worse problem than frequent stools
Angela Michelle Schultz (author) from United States on April 13, 2012:
I'm glad I could shed light on the disease for you!
Lynn on April 11, 2012:
I would like to say thank you for telling your story about having ulcerative colitis. My brother also has ulcerative colitis and I never really understood all of the things he has had to go through. In my health class we are supposed to be researching a disease so I chose ulcerative colitis so I could understand more.I am really happy I did because I do understand a little more. I would like to thank you for posting this it help me a lot.
Angela Michelle Schultz (author) from United States on February 19, 2012:
It's nice to hear that others have gone through the same thing.
Angela Michelle Schultz (author) from United States on February 19, 2012:
I had my surgery ten years ago, I'm sure a lot has happened to advance the surgery. And I would not say that my surgery was at all unsuccessful, it was successful, but there are limitations I do have on occasions, 95 percent of the time, I forget about the difference, then I'll have a problem, like emergency room visit due to the flu, etc. Each year things do get better, but also, I have found things where my body does not hold up as well as a typical thirty year old. :)
awordlover on February 09, 2012:
Hi Angela, I have Crohn's Disease and have written hubs about it. I was diagnosed with Celiac's Disease at age 11 and Crohn's by age 12, colostomy and reversal, and have been medicated with prednisone ever since. I also have Multiple Sclerosis and Rheumatoid Arthritis - all of which is treated with prednisone, by choice, along with other meds. I can still remember the pain and going through a year with a temporary colostomy and never want to go through that again. While the colostomy helped relieve stress on my colon and rectum, it was awful for such a young girl, who had no diet instruction or alterations. Too much to go into detail here, but I wanted to tell you that Your story was similar to mine and this hub is remarkable. Very well written and packed full of good info to informed the uninformed.
Adam on December 19, 2011:
I was diagnosed with UC in 2006 at 22 years old.
I had a total colectomy, then an ileostomy bag for 13 months, then jpouch surgery (and removed the bag). It's been about 1 year and I feel totally cured. I don't take any medications anymore, either. I take only VSL3 DS (a probiotic), metamucil wafers (they changed my life immediately), gas-x, and sometimes immodium. I only use the bathroom about 3 times a day, which the doctors told me would never happen. They told me the best I could hope for would be about 6 times a day.
This surgery changed my life. My stomach is nearly back to what it was before I got horribly sick. Even though the surgery wasn't successful for the author, for many it is. Mine was more successful than I or my doctors imagined, b"h.
I've never had the problem of "leakage" at night. My body can tell the difference between gas and liquid. Also, after eating the wafers daily (I started a couple months ago), my movements are no longer just liquid. They are somewhat formed.
I do stay away from particular foods: orange juice (although I don't know if it's the jpouch it bothers), fresh celery, onions, carrots, and other stringy, tough vegetables.
The doctors usually say that people with UC and Crohns wait too long to have surgery. I strongly recommend talking to your doctor if your quality of life is really suffering because of UC.
Angela Michelle Schultz (author) from United States on April 24, 2010:
Honestly I think mine is average. I used to hold a website where hundreds of people contacted me, and you would be surprised how other people have healed. My beginning (or ending dependent on how you look at it) was bad, so it only makes sense I would have had a harder time.
I had my surgery in September, the reversal the following April due to constant complications. You are very lucky to have it done so quickly. They wanted me to heal at least three months before the second step, and because of how sick I was prior, they wanted to do it in three steps rather than more quickly.
Ed on April 24, 2010:
I had a colectomy in late January, and the ileostomy reversal 1 month later. So far things have been varying a lot. There was a few days stretch during which I only went to the bathroom twice a day. The main trick right now is to NOT drink anything with my food, wait at least an hour after eating to start drinking.
I jut started constantly suffering from the "Butt Burn" it sucks!!! It's also the reason why I ended up here on your blog. Thanks a lot for the Desitin tip, I will try it out as soon as possible.
Before the reversal I had blockages often, so that's why I had the reversal done so quickly. Other than the butt burn I have NO other problems now. I wake up at night to go to the bathroom, but it's been getting better and better. I think it's important to mention that you probably are had a rougher time than most people who have this surgery. If I had read your blog before my surgery I would have been very scared, but at the same time you are doing a great thing by telling people exactly what happened and not sugar coating anything!!
Thanks again for the blog post.
Angela Michelle Schultz (author) from United States on April 10, 2010:
Diet definitely plays a huge roll in taking care of the disease. I strongly recommend to see a nutritionist, because they will know tips doctors don't. My last few months before I had to be hospitalized (and eventual total colectomy)I was seeing a nutritionist. She gave me lots of really great tips. But honestly, I was too far sick. I honestly believe, because I was doing everything I could, that diet was not going to help in my case. But I know diet helps with my asthma and arthritis, so I imagine since this is your digestive system, it would be even more beneficial. Even after you have a colectomy, diet is a very important part of your healing process.
And yes, you are right about doctors not knowing benefits of a good diet and nutritional supplements.
Tricia Mason from The English Midlands on April 10, 2010:
I was very ill, with this, after my second child was born ~ and it was misdiagnosed as post natal depression, etc, which didn't help. One doctor said that I could have died from the resulting anaemia.
Once I knew what was wrong, I helped myself considerably, with diet, and have had very long stretches where I have been free of medication and with only very minor symptoms. However, it returns from time to time ~ as you know, stress can cause a flare up.
Many doctors do not know about the benefits of diet ~ vitamins, etc.
Angela Michelle Schultz (author) from United States on April 09, 2010:
Comfy Tummy, actually I had taken that route the year before I got sick. I had done everything, but by then I really focused on a very similar diet with nutritional supplements as you are talking about (for several months), but what works for many, is not going to work for all. I do think if you are suffering from UC or Crohn's, you should definitely pursue that particular diet- or similar ones, because they can really help many! But it won't heal. Once you have the disease you will always have the disease. Many people can keep it under control.
Honestly, I tried many things, and was even on intravenous food for an entire month to give my bowel complete rest. But some people no matter what is done to their bodies can get it under control. My colon shut down. Even if it had been Crohn's, the amount of my colon that was affected, they would have had to remove it all. My doctor actually said it was the sickest colon he had ever seen. He even asked permission to show his dad (who he shared a practice with). They ended up sending it to U of M for med students to look at. I had to sign release papers of my colon. I kind of imagine my colon sitting in formaldehyde on some science professor's desk! LOL
Angela Michelle Schultz (author) from United States on April 09, 2010:
Thank you very much Pamela, I hope it does help people, even if it helps one person it's worth it!
Angela Michelle Schultz (author) from United States on April 09, 2010:
betherann, thank you! I used to run a website, and I would get so many people who would ask me, should I do this. I would always say, I can't tell you what to do, but this is what it was like for me afterwards, if you feel better than that now, then you should seriously reconsider your decision. I had some people who would have mild cases wanting the surgery. I prayed they wouldn't, but I couldn't tell them. I also had some people with moderate cases who had the procedure, and told me they hated it, and wished they had never had the surgery. So I feel people need to know what the truth is like.
Comfy Tummy on April 09, 2010:
Wow. Very sad article. I'm so sorry to hear about your story. It's great that you're letting people know about it. I was diagnosed with severe Ulcerative Colitis back in 2004 and my doctor told me it was an auto-immune disease, a life-time sentence of meds, etc. Thankfully, I found out about the Specific Carbohydrate Diet and nutritional supplements and was able to heal myself with a combination of both as most colitis is actually caused by an imbalance of micro-organisms within the intestines. Unfortunately, conventional doctors are not taught this in med school nor are they taught much if anything about nutritional therapy. Once the proper healthy balance is restored, healing results. Been symptom free and med free since. I just want to let people know that there are options out there that will heal colitis and digestive issues other than meds and surgery which really should only be a last resort if nothing else works. All the best!
Pamela Oglesby from Sunny Florida on April 09, 2010:
Thank you for telling it like it is as I know this will help some people dealing with this disease. Good hub
Beth Morey from Montana on April 09, 2010:
Thank you for being so honest and open with your story! Voted up!