Has anyone had their terminal ileum removed?

[wolfem]

I was recently diagnosed with crohn's disease in December-- a little too late. The doctor wasn't listening to what I was telling him and by the time they finally diagnosed me (colonoscopy), I had developed an abcess and had to be sent to the ER. Since the abcess was multiloculated, part of my large intestine and terminal ileum had to be removed:frown: . I was put on heavy antibiotics and rapidly lost weight. I had developed a secondary infection after the surgery. I'm finally recovering from this ordeal but I'm having a hard time gaining weight. Does anyone know what I should eat that would help me gain weight?

 

[tamesis]

I have not had any surgeries, but many people on here have, so they may be able to be more helpful.
How about a meal replacement type drink, but to supplement, not replace? Maybe ensure, boost, etc., have one with each meal?

 

[GoJohnnyGo]

Hey wolfem, sorry to hear about your troubles. Sounds eerily similar to what I went through years ago. The ER was where I was diagnosed and had emergency surgery.

Took me a while to gain weight (I had lost 60 lbs. being sick). I did a lot of dietary supplements like Ensure and Carnation Instant Breakfast. Dry skim milk powder and shredded cheese in mashed potatoes was another trick.

Hopefully, you'll soon feel a lot better. Took me about three months to recover.

 

[Nytefyre]

I had an ileocolectomy (I think that is the right terminology) in Feb 2007. I then had a second surgery two days later for massive internal bleeding. I was back in the hospital in Sept 2007 due to blood loss. I had some transfusions and was laid up for three days. Then I started putting on some weight because I had many months without major symptoms. Here's to hoping that the healing time after your surgery will help you feel better.

 

[Nyx]

I just had surgery in December (a colostomy) and I had lost about 40lbs. I'm still trying to gain the weight back; so far I've managed to gain back 7lbs (in 2 months!). I just eat constantly....lol...sad but true! I'm always hungry and never seem to feel full. I don't know what to do either! I think we just have to be patient and let our bodies heal and things will eventually level out.

Sorry I wasn't more helpful!

 

[Jennjenn]

When I lost weight from my surgeries I mixed in extra boosts along with what I was eating. I know they are expensive to drink 3 a day but if you go to a whole sales club (dont know where you are! BJS, Costco, Sams CLub) you can buy them at a great deal. I just bought them the other day and for 24 of them they were $24.95. In regular stores its like $8-10 for 6 or 8 of them. The weight will come back just keep eating right and add in some extra nutrition that your body is probably asking for!

 

[Crohn's 35]

I have had two resections and my second one was like yours. You have been givin some great advice from here. The weight will come back, just heal yourself first, Ensure, boost , what ever you fancy, will bring it back slowly. Takes a long time to heal on the insides. Take care and relax, it will come.

Welcome to the forum!!!

 

[wolfem]

If it isn't one thing its always something else

Thank you all for the advice

I am a female currently weighing 95lbs. I have gained 5 lbs. since my surgery so that is a plus! It has been a little over a month since my surgery and the doctor told me that I might have to get my B12 levels checked. I've been on pentasa for awhile and I think it is working.

While in the hospital I also had superventricular tachycardia every couple hours due to the weight loss. That went away as soon as I got home and started eating every hour. I never got full. I would eat a whole roast in one day. Now, I think everything is starting to slow down. I can't eat ensure or any of those drinks because it upsets my stomach. I have duodenal and stomach ulcers and have to take aciphex.

Other medical issues I'm dealing with are hair loss (already had thyroid checked), painful urinating (might have bladder infection), and severe TMJD ( I have been battling the disorder now for 14 years). In fact, the pain from TMJD is so bad I would rather endure the pain from gastro surgery (without any pain meds.). Speaking of pain meds I absolutely refused to take hydromorphone while in the hospital because it made me delusional.

-Mary

 

[wolfem]

Tmjd

TMJD is temporal mandibular joint disorder. The jaw joint pops out of place. A lot of people have it but I was blessed with a more serious condition. They say that I have no more cartilage in between the joints and part of the bone is worn down causing nerve pain. Actually, the pain radiates all across my face down my shoulder, down my spine into my hip, and then straight down into my foot (all on the right side). Nothing short of trigeminal neuralgia.

Pulsating, searing, burning, makes you want to jump off a cliff pain.

I see a specialist, wear two night guards, have had injections, been put on neurontin (which works sometimes), and have gone to physical therapy. The physical therapist told me that I was the worst case she has ever seen in terms of hypermobility; my spine becomes misaligned very easily and so does everything else for that matter. Well, the only treatment for that problem would be strength training...but not when I'm trying to gain weight! I suppose muscle weighs more than fat. However, I have no fat and I'm currently in a catabolic state.

I believe that these arthritic manifestations have been largely due to crohn's disease and I didn't even know it .

Ahhhh! Just have to vent.

-Mary

 

[wolfem]

Oh, by the way, I'm 26 years old. Currently in college well, I was until I had to take the semester off.

-Mary

 

[imisspopcorn]

I had my ileum removed in 8/2008. I was on Prednisone for a few months post-op....I had no problem gaining the weight back and then some! Just give it time Mary. Try to eat nutritious stuff so you get the best bang for your buck.....I can't drink the boost/ ensure shakes....Make sure you are getting plenty of protien, it is essential for healing.....Good luck.

 

[wolfem]

You get TMJ flares as you do with crohn's. I had a TMJ flare 6 months before the crohn's disaster happened and I was gradually getting my pain under control through strength training. That was the longest TMJ flare I had ever had-- not sure what is happening.

Anyhow, just as I was struggling with the pain along with trying to keep up my grades, I had bouts of vomiting, stomach cramps, weight loss, and fevers. All of the crohn's symptoms occurred in 3 weeks. Everything happened so fast. I told my doctor about all of my symptoms, he shrugged it off and told me I had a URI. What??? I told him I had to go to the ER the previous week because I couldn't get in soon enough to see him and they thought I might have crohn's disease based on the CT scan results. Essentially, they were the ones to diagnose me. Anyhow, the fevers were getting worse and I kept calling my doctor frantically, trying to get in to see him again... I ended up in the ER a second time. After the second ER visit I was finally able to see my doctor again and told him that this time, not only did they think I have crohn's disease but they also think I have an abcess. So he finally does something about it... he orders a colonoscopy. He hadn't even looked at the CT scan! I didn't get zapped for nothing! Anyhow, the colonoscopy results were positive and my doctor orders another CT scan. Still quite sure that I don't have an abcess, he casually tells me they will get the results right away and that if anything serious shows up on the CT scan, he will notify me immediately. Four days later he calls me and tells me that there is nothing on the CT scan. An hour later he calls me back and apologetically says that the second image shows an abcess!

I have a different doctor now.

Just as I'm getting better from the surgery my TMJ flares up again.

Thanks for listening

-Mary

 

[Jennifer]

Wow Mary. I can't stand doctors like that. I drop them like a bad habit. Glad you did too.

Your story sounds similar to mine minus the TMJD. Don't got that. I'm 27 and don't have my ileum either. As for gaining weight, it does take some time. With your jaw, do you normally try for soft foods so you don't have as much pain? Or does that even help? You could try cottage cheese or yogurt. Maybe you could try doing what people say not to do when you're trying to lose weight such as eating late like after 8pm.

I'll just tell you what I do since I weigh more than I'd like to and only seem to be gaining.
- I don't exercise.
- I eat late at night, even right before bed.
- I don't eat healthy (frozen foods like burritos and pizza, chips, candy, cookies, ice cream, fried food, fast food etc). Keep in mind I had my surgery in 1999 and I often decide that I'd rather eat tasty food and feel like crap rather than eat bland food and feel ok.
- I eat whatever I want when I want basically.

I'll be making changes with that soon.

 

[wolfem]

LOL. I would like to eat fatty foods unfortunately I think that is what got me in trouble in the first place. I was diagnosed in September of last year with gastritis so I stopped eating fast food. I had also lost 7lbs. The doctor was a little puzzled by that. I stopped eating fast food so it wouldn't irritate my stomach. In December I was doing better but still not gaining weight and by that time I weighed 105lbs. I was frustrated so I began eating lots of fast food. Then the intestinal pain began and the vomiting. Yikes!

So, a couple of days ago I was thinking that maybe it is o.k. for me to eat bad food now that my ileum is out. Well, I had some really greasy chicken and I started feeling nauseated. So I quickly took promethazine. The vomiting only occurs if I eat greasy foods.

Gosh, one greasy taco caused a vomiting episode one time.

Thanks!

 

[wolfem]

Oh, I eat late at night too but because I'm sooo hungry.

-Mary

 

[Sue-2009]

OH Mary.....Sue

 

[kenny]

I had the terminal section of Ileum removed in early Oct. It was explained to me at the time and a bit fuller afterward that when they are forced to remove a certain part of the Ceacum(junction of Ileum, appendix, ascending colon) that there is a common artery that must be closed off and that dictates some of what has to be removed. Just a FYI as to why so many of us will have had the exact same resection.

I was told to work my way back from a low fiber diet to what ever I wanted to eat. But I also got advice from a government supplied Nutritionist who came to check on me 3x during my ordeal that I should really watch the Omega6 vs Omega3 thing. I needed to regain a lot of muscle having dropped to 130 lbs from a pretty fit and lean 165. So that meant lots of protein from sources low in Omega6 and nothing fatty or oily as the I just lost the main part of my intestines that deal with fat. (funny how that is the part most of us get the affliction isn't it)

I eat a good deal of Fish, chicken and peanut butter. Red meat is still important but in very moderate amounts as per the whole omega thing. I have regained all the lost weight and then some. I am a solid 170 now. The highest weight I have ever been at 43 years old. For the first time in my life I am worried about getting flabby!

Eat often if you can and avoid eating too much at once. And drink water like a fish.

 

[wolfem]

Thanks for the advice.

So, you won't be able to absorb any omega-3 fatty acids?

 

[orchard archer]

Mary, The GNC Store Sells a Product Called,, Weight Gain!
It was a Few Years Back I used it for awhile.
Sometimes it seems like my body only gains weight when it wants to.
Look up GNC (Weight Gain) on Google.
There are different types and flavors.
Hope this is of use to you?
I sure wish you Well.....

 

[kenny]

Thanks for the advice.

So, you won't be able to absorb any omega-3 fatty acids?

no you might not absorb all the B12 that goes through.

The Omega3 vs Omega6 is linked to Prostiglandins production in your gut. Prostiglandins are what trigger inflammation as part of the immune system. Meat is a major source of protein but it is also a major source of Omega6 which causes inflammation through Prostiglandin production cycle. I was trying to suggest eating as much protein as you can but try to keep the Omega6 intake as low as possible.

 

[wolfem]

Omega-3 reduces inflammation while omega-6 increases inflammation therefore, you want to reduce your intake of red meat (omega-6).

So, wouldn't it be beneficial to consume more omega-3?

 

[wolfem]

I was kind of getting off topic but I understand that eating lots of protein should help me gain weight.

Thanks

 

[kenny]

I was kind of getting off topic but I understand that eating lots of protein should help me gain weight.

Thanks

A high protein diet helped me rebuild lost muscle. I really atrophied over a few months and looked like a . . . . . . well it made my mom burst into tears when she came to visit me in the hospital. Smooth Peanut butter, tuna, salmon, and refried beans plus supplements is what I concentrated on. And I picked up a used home gym on Kijiji to build up stamina and make sure the weight went back on where it should.

 

[wolfem]

A high protein diet helped me rebuild lost muscle. I really atrophied over a few months and looked like a . . . . . . well it made my mom burst into tears when she came to visit me in the hospital. Smooth Peanut butter, tuna, salmon, and refried beans plus supplements is what I concentrated on. And I picked up a used home gym on Kijiji to build up stamina and make sure the weight went back on where it should.

Thanks for the advice.

 

[Van]

Hi. I have had extensive small and large bowel removed due to 3 resections and was loosing weight at an alarming rate. I was in the hospital because of malnutrition and weight loss yearly, sometimes month`s at a time. I also was not able to absorb enough b12 from the food and vitamins / ensure . I would have your b12 levels checked as this helped me greatly by having an injection every month. While this might not help you as everyone is different, I hope you can find a solution that works best for you.

 

[wolfem]

Hi. I have had extensive small and large bowel removed due to 3 resections and was loosing weight at an alarming rate. I was in the hospital because of malnutrition and weight loss yearly, sometimes month`s at a time. I also was not able to absorb enough b12 from the food and vitamins / ensure . I would have your b12 levels checked as this helped me greatly by having an injection every month. While this might not help you as everyone is different, I hope you can find a solution that works best for you.

Yes, I'm definitely going to get my B12 levels checked.

If you are low on B12 does your hair fall out a lot?:eek2:

Mary

 

[imisspopcorn]

Even if your B12 levels come back in the normal range you should still supplement...Although it does not give me a surge of energy by any means, I do feel more fatigued when I get off schedule for my injections....I had a ton of hair loss post-operatively...Make sure you tell your doc. They will check your thyroid etc. to make sure there is not some underlying reason for the loss. I think mine was from being malnourished. It may be the cause of your's as well! Good luck Mary...