Digestive Disorders Community

Have you been checked for celiac? You sound like myself! PLEASE get to a Dr that is knowledgeable in celiac sprue!
Where so you live?
cmm

Hi, I know you must be scared, anyone would be. I belong to another WebMD community called Crohn's and Colitis....we have several girls who have had their colons and rectums removed. They might be able to help you with what it is like to live without one. Their problems were severe Crohn's and Ulcerative Colitis and have been very, very sick. This is not something you enter into lightly. You end up having constant diarrhea (up to 15times a day). That is extremely debilitating and limiting when it comes to social activity. Having to take laxatives, to me, is much easier than going thru life with an ostomy or a J pouch for the rest of your life. Please get a second if not a third opinion with this problem.
I hope you can find the answers that you are seeking.
Take good care,
Jeaneau

Hi, My son is 8 yrs old. He was diagnosed with UC at 4 yrs old. It is unusual for a child that young to have it. We have tried all possible medications, including Remicade which worked for awhile. Everytime we tried weaning him off Prednisone, he would go into a flare up. At about 6 mg per day, this is when the flare would start. During a flare, he was throwing up every day & it would happen when he was sitting down having a bowel movement. He lost 10 lbs in 2 months. He was recently hospitalized for 12 days because the flare was so bad. He is on 60 mg per day right now & he is doing well, but we know we have to get him off it. We have met with several surgeons in different locations & all agree it is time to remove his colon as soon as possible. The whole large intestine & rectum is affected. He will have the 2 step surgery. We are waiting for a surgery date. We had wanted to wait till he was an adult to make this decision on his own, but we don't have that choice anymore. He has been through hell with this disease & I don't wish anyone to go through that pain. I pray there is a cure someday.

Hi, Kenztin.
Sorry you're having these problems, especially at your age. I've had Crohn's Disease for 35 years & because of an emergency situation, had an ileostomy 2 years ago, which may or may not be reversible.
There are some online communities of people with various diseases, who have had, or are thinking about, getting an ostomy. Don't know if I can name them here, but 2 excellent sites are C3life.com & Meetanostomate.org. The folks on these sites go out of their way to help others facing situations like yours. You can post your situation and hopefully find people who have been there. You will definitely run across quite a few people without their colons. I've found way more help & expertise among people who have been there, than from medical personnel, although both groups together will be able to help more than either alone.
Best of luck.

I'm sorry you have been dealing with digestive problems. I have a 17 year old who has been dealing with intestinal problems most of his life. In the last 5 years he has been hospitalized about 10 times and had surgery 5 times. He gradually lost his colon. His symptoms have been constipation, bloating, vomiting. He was on mineral oil and them miralax since he was 4. After his 4th surgery in which they gave him an ostomy he was still having the same symptoms. After an upper GI small bowel follow thru they figured out he had a motility problem. He was put on Reglan every day which has helped him. He had some special motility testing done in Milwaukee and was diagnosed with a rare intestinal condition called chronic intestinal pseudo-obstruction. His intestines only work 50% of what they should. We were told that he would always have to have an ostomy. We were able to see a colon and rectal doctor who after more special testing determined that my son could get reconnected. June 2010 he had surgery again and as long as he is on Reglan does very well. His life isn't like most teenagers and there are issues that aren't always pleasant to deal with. He plays soccer and basketball. His quality of life has improved a lot. He is a happy person. He doesn't have to be on a special diet, but I think most people without a colon need to make sure they are getting fiber. My son has very tight sphincter muscles so he has to be careful to not get too much fiber. I would recommend seeing a colon and rectal surgeon if you haven't. If you live near a BIG city check and see if they have a special motility testing center. Pseudo-obstruction can affect all of the digestive tract or only parts of it. You may want to check in to that. Unfortunately there isn't a lot of info out there. What you are going thru is scary and I hope you are able to find the help you need.

So sorry to hear what is happening for you. I have a close family member with Crohn's disease who could also be facing something like this. I want to repeat what others have said and urge you to get a second opinion from an experienced medical gastroenterologist specialist before deciding on having your colon removed. It would be a wise move to ask about any other treatment options at the same time. Unless it is a very urgent situation, do take your time. And as a last resort it might even be worth visiting a registered naturopath or similar therapist before making the big decision. All the best.

Kenztin637, I'm sorry you've had to be so sick and face these big decisions during this time in your life. I'm a 30y/o with Crohn's Disease and had a colostomy 6 months ago. As far as appearance, no one would know that I have a colostomy. I wear mostly the same clothes I did before, including tight fitting clothes. The only clothes I've had to be carful of choosing the right thing are dresses and swimsuit. Stools are typically watery with an ileostomy. What that means for you would be that usually watery stools make noise--like very loud stomach rumbles, or like passing gas. That part is embarrassing. You can cover your ostomy with your had to make it quieter, but you have no real control over it except if you know that you'll be in a situation where you don't want to risk having a loud bowel movement, don't eat until after the event. I also try not to have to empty in a public place due to the strong odor. And try to always have air freshener with you. In my experience, vomitting is not likely post surgery unless you react to the anesthetic. Do you get to live normally? I think that it is unrealistic to expect to live like someone w/o an ostomy. And if you have an illness serious enough to consider this option, it may be unrealistic to expect to live life normally period. It helps me to think about my quality of life before and now after. When I get down about certain aspects of it, I remember how sick I was; how much pain I had. And I realize I'm happy I made the decision. There are limitations. Having the surgery did not mean I would be cured and I do still get very sick sometimes. You may want to ask exactly what you can expect as far as health after surgery. Even though you may not have a "normal" life of an 18y/o, you can still have things that matter: family, friends, school/work, and boy/girlfriend. Everyone has something they struggle with and must overcome. In the end, only you can know when you're ready to make that decision. I wish you all the best.

Thank you all for your support and advice, I really appreciate it. I'm sorry for those of you who have loved ones dealing with those problems or you yourself. I'm sure I've been tested for Celiac, I've been to two different GI doctors, one of which told me he will never be able to fix me completely, then contradicted himself by saying it's all in my head. The second one who I have to drive 6 hours to see or do testing is the one who suggested the surgery. She did an upper GI series which resulted in a partial blockage, an analmammometry to test the muscles and a test where they actually watched me have a bowel movement. Very embarrassing. It all resulted in slow motility. That's it apparently, no rhyme or reason, just because. I told her I'd like a second opinion before deciding on the surgery and she is now referring me to the top expert on motility problems in Seattle. I have an appointment with him in a couple weeks so I'm anxious to see how that goes. Something I'm curious about, however, and I'm not sure if this is the place to voice it, but during the month of July I experienced a brief reprieve from most of my symptoms. My bowel movements were more regular than ever, i stopped taking the domperidone I had been put on for my stomach (Reglan made it worse) and I was actually going out with friends, my anxiety disappeared. Then August hit and a week into it my symptoms resurfaced. Is this something that can happen with illnesses like this? Ups and downs? Or is it unheard of?

Thank you. I am working on getting a second opinion right now, though sadly my GI doctor I have now is not straying away from her regimen of miralax and colyte, now looking into it further. I've taken it upon myself to research things that make sense and present my findings to her but she usually just passes them off and says why instead i have this specific problem that can only be helped by laxatives or surgery. Im beginning to wonder if she just doesn't want to put the effort into trying harder. My aunt is actually an osteo/naturopath and i see her weekly. She thinks the surgery is a very bad idea. I'm just kind of at a stand still right now.

I'm so terribly sorry to hear about your son. That is awful, but I'm glad he's able to make the most of it and find happiness. It's great they actually found out what was wrong. Though the answer isn't always much of a relief it's an answer none the less and only then can you work on getting better. I've had quite a few motility tests done, I'm not sure if there is more, but they didn't result in anything specific which just boggles me. I'll have to mention Pseudo-obstruction to the guy I said I was going to see in my other main post. Thank you so much for sharing and I hope your son continues feeling better. We can always pray for a miracle.

My mom had colon cancer and had a colostomy. It is not fun, but she made the best of it by flushing her intestines each morning and her life was fairly normal beyond that. Other than the cancer, she wasn't sick like you are, so it may not be the same. I have had spastic colon syndrome and diverticulosis my whole adult life. It runs in the family. Still not as bad as what you have but a few months ago, I got so tired of being sick that I was looking for a diet that could help. I had heard of the raw food diet that was helping a lot of people. I just googled Raw Food and searched some of the sights. I learned that the Standard American Diet is making a lot of people sick. I make a big green drink in the morning in the blender and eat only raw, organic, vegan...Mostly smoothies. I get the fiber needed for digestion, but put it in a blender to break it down and that way I get a high degree of nutrients. There are hundreds of people on You Tube that are sharing their raw secrets to wellness. I am 72 and believe I will never have to suffer like I have my whole life. Come on over to You Tube and check it out. Nothing to lose. Lovingly, Lynn

I do pray for a miracle. I am very thankful that he isn't worse. There are some with his condition that are in very bad shape. Write down any questions you can think of for the doctor. No question is stupid. If you have someone you can take with you it is always better to have someone else listening to what the doctor says. I hope this new doctor can figure out exactly what is wrong and help you. You may want to check out the following web sites. agmd-gimotility.org and iffgd.org I have spent a lot of hours on the computer in the last 5 years to try to find any info I could. I actually found the psuedo-obstruction on line and told the doctor it sounded like what my son was going through. Unfortunately it took a couple more hospital stays before they got moving on the motility issue. If you have the time I recommend that you research as much as you can before you see the next specialist. Since we have been through so much of this I sure would be interested in finding out what this specialist tells you. I wish you well in Seattle.
God bless you!

I will definitely check that site out, thank you. I'm grateful for any opportunity to gather more information. The first GI doctor I went to actually got really annoyed that I was looking up things online and suggesting them to him, said I was using thousands of dollars on tests and refused to do more. That hasn't stopped me though, I find it too hard to believe that 2 years ago I was doing well and all of a sudden I have this motility issue for no reason whatsoever, just showed up out of nowhere and there's nothing causing it. I'm glad they finally looked further into it, it can get so frustrating and seem like they just won't listen to you. My mom always comes with me to these appointments, even though that same first doctor also got threatened when both of my parents there, I don't know, he shouldn't be in that field in my opinion. I will be sure to let you know what I find out, Thank you so much for your help. I know it isn't exactly my place to say but on behalf of your son and fellow sufferers like myself I'd just like to tell you how greatly you are appreciated. I can't even describe how grateful I am that my mom has been by my side and helps me through this, I don't know where I'd be without her and to see another parent so concerned and helpful to their child is very touching to me. God bless you and your family.