Has anyone had ileum removed 30 yrs ago?

[meowta]

I had the ileum section of small intestines removed when I was 12 yrs old due to double loop blockage from scar tissue, My surgery was the 1st of its kind recorded (so we were told) and no one had a clue what the residual effects would be.  I see alot of people who have had sections removed. Is there anyone out there who has lived with this for over 20 years??? I am experiencing symptoms that I believe are from the long term nutritional, malabsorption and bacterial issues associated with this type of surgery. Desparately looking for anyone with any insight and experience with this idea. My health is generally good...your body does adapt over time although it never is "Normal" again in regards to gas, diarrhea, stomach pain and food tolerance,
I was born with duplicate set of small intestines, duplicate duodeum, and extra kidney. Emergency surgery at age 4 to remove duplicates intestines and duedum and about 12 inches of my small intestine.  Scar tissue created the double loop blockage and yet another emergency surgery with removal of approx. 6-7 feet of ileum section with gangrene. The blockage almost killed me, and the after effects from the surgery almost killed me, It took years and lots of expects to keep me healthy. Bad teeth, mild osteoporsis at 38 from lack of calcium absorption...this has taken a toll on my body which otherwise appears to be normal!!  If you have just had surgery and what to know what to expect, I would love to share my experiences to offer help, If you have lived with this for over 20 years - I really want to communicate with you!! I need some help that I am not sure is going to be "medically documented" as I have never known of another case like mine from 30 yrs ago showing how it affects us after that many years.

[CKart]

I just found this post (about 7 years after your post).  When I was 6 weeks old I had a small bowel resection from the distal jejunum to the distal ileum.  That was 48 years ago.  I get monthly B12 shots, have osteoporosis, am anemic, have so many food intolerances and Celiac Disease.  I wish I could find a doctor or nutritionist to help me find what is better for me to eat.  I've been on my own trying to figure out a diet where I feel good.

[justjeff2014]

Hey - just kicking in (5 years after your post).  I had mine done when I was 3 (removed the ileum section).  Got on Questran and have been on it for over 40 years. As everyone said, B12 is normal (injections), learning to watch certain foods and being aware of what is and is not absorbed well (dont let a doc be the only one watching). Other wise pretty normal.

[triciaclaire]

Hi, You all may have moved on but I just found this. I had over 4 ft of my small intestine, including the ileum, in 1999 due scar tissue that wrapped around SI and left it gangrenous. Very similar to most of these stories. My dr told me right away that I would need B injections once a month for the rest of my life. The worst symptoms I have are occasional diarrhea and some hair loss after 5 children. Anyone else experienced the hair loss? I think it is just because my body had been depleted. I had a blood analysis to show where I was deficient and I'd recommend that to you all as well. God Bless.

[north_man]

I had my ileum removed due to chron's. I had to supplement my nutrients due to malabsorption. It's been since 92'. I'm leaning towards bodybuilding. It can be done. But yea I have all the bad things that come with chron's and no ileum. I jus adapted.

[alvin1975]

Hi everyone. I am from Nepal. I am very happy I came across this forum.

I had ileum gangrene in year 2000.My ileum was removed. I don't know what length. It's hard to get medical records here.I was 24 at that time. I hardly survived from surgery- high fever and terrible pain for 8 days at post up ward. Everybody gave up hope I survive. I prayed god to take me with him. I never felt good after it.Now I wonder how I finished my bachelor thesis, worked as an architect for 7 years, finished my graduate school at Hawaii. Whenever I saw doctors , they told me I was fine. I performed all the tests - blood to thyroid, MRI and CT scans- what not. All results were good. However, I felt tired and depressed all the time.My body was burning. I felt premature aging. Only fruits and vegetables helped me.Digestion difficulty with other foods. It was disturbing my sex life too. I don't know why doctors do not counsel cases like this seriously. May be, it's a rare case in Nepal and they don't know about this kind of patients. This week, after 11 years of surgery- I came to know that people like us has high possibility of B12 deficiency. Now it's been 3 days I am taking NEWRON -Methylcobalamin. I have already started feeling good. May be I need some calcium pills too as I feel my bones are weak. I am wondering about the dosage of calcium. Can anyone suggest me please?
Is there any special tests I need to carry out to check status of my health?

[patient915]

You have responded to an old, outdated thread from 2009.  The people who originally posted these comments may very well have moved on.  Rather than reply to an old thread, we recommend that people start a new topic to discuss the subject anew.  To do that, please click on the green "Post a Question" button at the top of the page.  This will get your post the attention it deserves. Thank you.

[nuggy]

I was happy to come across this blog. I had my ileum removed last July after I became suddenly ill at work and later found out I was full of gangrene and would require emergency surgery. I am much older than you, 52, and since my surgery have went from one doctor to another to explain the sudden uncontrollable diarrhea which usually occurs about an hour after eating so I either go all day without eating and wait till I get home or spend hours in the restroom. I developed blurry vision problems about 3 weeks after surgery and found if I take B12 5000sublingual my vision will clear up within 20 min. Have you ever experienced this? What other problems should I be on the lookout for, I already have memory loss and get agitated more these days and I never had these symptoms before the surgery. I wish physicians knew more of the consequences and how to assist vs the I honestly do not know how to assist as not much research has been done. Any suggestions would be more appreciated.

[meowta]

Hi there! Glad you found us to! Hope that somehow we can help...You mentioned you are worried about the next few years - may I ask how old you were at time of surgery?
The doctors really aren't educated in this area as it is not that common. They think they can fix you up and be on their way. Unfortunately, an ileum resection has long lasting effects that need to be addressed.  My suggestion for you first of all is to make sure any suppliments you are taking be liquid! Your body has a better chance to absorb them that way.  Lactobactillus tablets (probiotics) REALLY help in keeping your intestinal flora balanced and helps to prevent some of the intestinal discomfort.  As I know that my body absorbs so little - I typically triple whatever dosage is recommended...

[velbay]

thank you everyone for posting, I am so happy to find this site. I had an ileum resection 6 years ago and the malabsorption & anemia is wearing me out. I take iron and have started adding calc/mag late in the day. The fatigue is hard and bone density is poor, teeth poor, worried about the next few years.  Maintaining weight just barely, gut doesn't cooperate with most foods but trying to keep to a good diet, suddenly lactose intolerant. Protein drinks make me gag and/or vomit; or the diarrhea starts without notice.
doctors not much help, passed from one to another.

[meowta]

Just realized that these messages/posts were here! Thanks for sharing your stories!!  Popcorn will definately leave you with issues...you have nothing to break it down for digestion.  I love it and only eat it when I am willing to pay the consequences.  Herebygrade, I took Questran for about 7 yrs after my surgery 1/2 hour before every meal, along with a few others to aid in digestion and slow down my system to increase absorption. It was a long long process (5-7 yrs) to gain weight and stabilize.  Eventually, I began to just live with the diarrhea and bloating and pain...I all but gave up salads, greens, veggies and fruit and was able to survive mainly on carbs and meat.  This led to blood sugar issues, but upon adding those foods back into my diet, my weight dramatically dropped as a result.  This summer has been a revelation of information for me...As you were older than I at the time of your surgery, your bones had already formed...I was at beginning of puberty which I think has led to the early osteoporsis, tooth loss (dentists say I have teeth like anorexic), etc.  About a month ago, my doctor advised me that due to the lack of antioxidants in my diet, free radicals were causing all sorts of problems - inflammation and premature aging. Told me that I had to do something/anything to get the nutrients! I have been drinking Power4 liquid supplements for about 6 weeks now, and can really tell a difference in my overall health. Don't get me wrong - if you met me walking down the street, you would never know there was anything wrong. I appear to be the picture of health. (looks can be deceiving)  My body ran a constant low grade fever, my sinuses were horrible, constant lower back pain, abdominal bloating, tired, and unknown to me -  suffering from chronic inflammation in my entire body (lungs, sinus, eyes, bladder, joints, hives, etc)  Just didn't feel good  but lived with it.  This inflammation showed on a CT scan and they thought it was cancer...thank God, it wasn't. My body was in a state of malnutrition and began "fighting" itself.  They say that if I can begin to get the antioxidants and greens, that I would feel like 18 again in a few months and that much of the damage could be reversed.  I could never take multivitamins as my body was unable to break down the actual pill...This liquid Power4 has made not only most of my symptoms go away, but the diarrhea is no longer explosive, nor quite so offensive, It seems to have relieved some inflammation in my intestines and aids in breaking down foods.  I have tried to take Powdered Greens mixed with juice and while its about as tasty as drinking grass, the benefits I am told will be awesome.  Unfortunately, even a fine powder of greens severely upsets my system.  I am working on slowly adding it to my diet in hopes that my body can acclimate to digesting it.
Thanks for posting - You two are the first people I have found that live with the same problems and have had this kind of surgery. I will begin to start posting some helpful tips that I have learned over the years. Battleaxe - please feel free to contact me, your situation is more recent and I may be able to help you.  I spent a great deal of time with specialists and doctors and dieticians to learn what I could and could not digest and why it matters.  I have learned more in the last few years as the long term effects have begun to affect my future quality of life.
Keep in touch and lets all learn from each other and maybe help each other!!

[herebygrade]

Forgot to say that the purpose of the Questran is to bind up the bile and the excess fat and carry it out.  And has the added benefit of lowering cholesterol!

[herebygrade]

Yes, I had the same surgery you did. 1983.  I had scar tissue, a loop of intestines cut off from blood supply, and 6 feet of necrotic tissue removed from lower ileum.  I was 22 at the time, now 50 (next month).  I have yearly B12 checks, and have never needed injections, but take a daily multi vitamin just in case.  I had my first  bone density scan this year, and as far as I know don't have particular problems with calcium.  My only problems - and this has been for the last almost-30 years - has been frequest diarrhea and terrible (embarrassing!) gas.  

I have taken the drug Questran ever since my surgery.  It is a cholestyramine drug, but it is NON-systemic; it goes in your mouth and out the other end and does not end up in the bloodstream.  As I understand it, your lower small intestine is responsible for fat absorption and therefore fat-soluble vitamins (like the B's), and for absorption of liver bile.  Too much liver bile in the large intestine leads to explosive diarrhea.  I take this powder in a glass of juice once a day, and mostly I have normal bowel activity, but if I eat overly-fatty foods I can be sure of diarrhea later.  Or popcorn, for some reason.  And salads - though I still enjoy them all them time - go right through me and I will be in the bathroom within the hour.  I have lived a really normal life with this medication, and it has no side effects, and without it I would have debilitating diarrhea.

[Battleaxe]

I don't have several years of history, but I did have major surgery for a volvulus back in August and am now concerned about nutrition and overall health.  1 1/2 feet of lower small intestine, the ileum, cecum & about a foot of colon were removed. I have chronic diarrhea, I feel the need to eat about every 3 hours, and my fingernails are becoming paper thin and dented. I have lost over 20 pounds but seem to have stabilized.  I take B12 injections and an iron supplement as well as a multivitamin & calcium chews. There is very little literature out there that I can find which addresses the long-term effects of this surgery on overall health, and I welcome any advice that would help me achieve optimal health and live a normal life.

[meowta]

Thank you for your response! While his surgery was as scarry as mine, he still has his small intestines. The small intestines break down the fats do most of the absorption of vitamins and nutrients much more so than the colon. He is lucky to still have the small intestines!! His ability to do mountain biking and hiking would be seriously diminshed if he lived with the long term issues of the surgery I had. I am happy that he is doing so well and thrilled to have found a place to connect with others who have had similar problems.  Sounds like your family and mine have the common factor of being guinea pigs in the medical world!! :) Guess it took us to help all the other people who came after...Best of luck to both of you!!

[mammo]

I'm not sure if this will help, but my son had his entire colon removed at 12.  Today he is 38, a marathoner, untrathoner, speed hiker, mountain biker.  He is very pro-active with his health.  He sometimes goes on hikes that last for months, but knows what his needs will be while in the middle of nowhere. I worry tremendously when he goes out on one of these, but he has reassured me that he would not put his health at risk, and to trust that he knows what he is doing out there.  He has never had a problem while on one of his long hikes. He's learned what foods to eat, and which ones to stay away from.  He is a health nut.  He was the first person at our local hospital to have the surgery where they remove the colon and the small intestine is used in place of it.  So, everyone was new to this, which was scary for us. But if he gets a stomach virus, which he usually does once a year, if he can't keep himself hydrated, he goes to the ER and gets IV fluids for a few hours and then he is fine.  He doesn't have the bone problems, strong as an ox, and he has beautiful teeth, but I do think it has a lot to do with his nutrition.  I hope this helps you.