# Recovering from removal of ileum, ileocecal valve and cecum



## Chrisrn1

I am new to the site, looking for some info regarding recovery for removal of ileum, ileocecal valve and cecum. Been diagnosed with Crohns for about a year. Was started on Humeria with what I believed were good results until I developed several abscesses and a fistula. Stayed in hospital for a week on antibiotics, went home til a week later started having severe pain and went back in hospital with increased size of fistula. Had surgery on 10/10, discharged on 10/14. Overall feeling better, only having incisional pain (large long incision above belly button to below). However, not much of an apppetite. Still having very loose stools , really thought they would be more normal 2 weeks post op. Am I just expecting too much too soon?????


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## Crohn's 35

Hey Chris :welcome:  I have had two resections and you have to remember healing on the inside takes a while to heal up. It takes about 6weeks.  Walking and drinking smoothies or ensure helps get the bowels moving without too much work. Loose stools can happen months down the road but I used Questran... the doctor can write it for you.  When you start to  eat more solid foods, time will heal and you will have somewhat normal stools but may not be as before because the Ileum is where everything absorbs.  :hang: dont over do!


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## tiloah

I was told by my surgeon before having my surgery (which I believe was very similar to yours) that I would have "loose" bowel movements for the rest of my life after having the terminal ileum removed, "but having Crohn's I probably wouldn't notice anyway." Well, I have noticed. I think my BMs are even looser than they were before surgery. As Pen said, there are things you can try. My GI recommended Benefiber first, which gave me cramping. Then I received an Rx for something similar to Questran, but I haven't used it much yet because the copay is quite steep and it doesn't bother me that much. But there are options out there. I have been recommended psyllium husks as well as tincture of opium. Hopefully one of these will work for you.

Unfortunately the TI is where bile is re-absorbed. It doesn't harm your body to not reabsorb it, but it does act as a powerful laxative when it reaches the colon. Drugs like Questran bind the bile so that it can't do that.

I would bring your concerns up with your GI doctor. I would think two weeks postop your appetite should be improved. I hope the rest of your recovery goes well.


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## archie

I also had that surgery although I was the opposite, I couldn't go to the loo after the surgery and then when I eventually did it ran in a cycle of constipation for 3-4 days then loose BM and I would feel better.  This has since cleared to pretty much normal BM now occasionally loose depending what i've eaten but not enough to cause a problem. Unfortunately once the IC valve is removed loose BM's can be a consequence. 

I'm 11 months post surgery now and feel good, I have the occasional grumble still in the RLQ and occasional strong cramps which can take your breath away but getting less and less.  You are very early days it takes at least 6 weeks (and then some!!) to recover from major surgery.  Although as mentioned above your appetite should have improved a bit.  Get a check up in case you have an infection etc that might be causing a problem otherwise take it easy and let your body heal.


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## noileum

I had my ileum removed 10 years ago and have not done a solid poo since then

sometimes my toilet activity amazes me, even after all these years


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## vilan

*I found a natural remedy=bananas:*

I found a natural remedy=bananas:

Ten years ago I had a major bowel resection from my Crohn's disease, and in the operation, my ileocecal valve was removed. I had every possible symptom mentioned here  and daily blody stools causing enough of a blood loss to knock me out. By accident, 2 years ago, I ended up eating 6 bananas in one sitting (because they were all that was avaialable), and discovered tha the next day was the first one with no symptoms.  In the past 2 years, when I eat at least 6 bananas (or more), I am fine. If i miss a day or two, the symptoms return. WhenI resume eating the bananas, I go back to being symptom free. By the way, after eating the 6+ bananas (at breakfast coated with cashew butter or   cream cheese to make the meal more apetizing), I can eat almost anything at dinner. (I skiop lunchbecause the bananas curb my appetite).

Try it yourself. The first week may create bloating as you adjust, but that will soon go away. I am 6'2" and maybe you can get by with 4 bananas if you are smaller than I. If you try this, perhapos you can report your results.


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## sfmreb2

I have problems eating half a banana. What ever works. Six bananas-Wow. Have you tried dehydrated bananas?


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## archie

I have to say I eat bananas regulary and I'm good with mainly normal BM's so maybe thats the reason.  I only have one a day though with breakfast or lunch


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## vilan

I too had trouble with eating bananas but I also could not much else either. Therefore, I ate what I wanted and expected to pay a price for everything anyway. I found that one or two banans did no good and caused adverse reactions (or I should say, my normal reactions). But eating 6 seemed to change the equation drastically, and my experimentation proved to me that 6 coat the intestinal lining, and also create a probiotic that with the large number of bananas, becomes palative-not just food. In addition, bananas have a natural tranqualizer and of course, are high grade fiber. If you can tough it out, try it for a week. I have been prosletizing this to my friends since it worked for me and for the first few similarly situated folks to whom I told my story.They had a few days of blaoting as I did, and then the remedial powers kicked in. It seems to work for all sorts of bowel disorders too.


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## wolfem

diesanduhr said:


> I was told by my surgeon before having my surgery (which I believe was very similar to yours) that I would have "loose" bowel movements for the rest of my life after having the terminal ileum removed, "but having Crohn's I probably wouldn't notice anyway." Well, I have noticed. I think my BMs are even looser than they were before surgery. As Pen said, there are things you can try. My GI recommended Benefiber first, which gave me cramping. Then I received an Rx for something similar to Questran, but I haven't used it much yet because the copay is quite steep and it doesn't bother me that much. But there are options out there. I have been recommended psyllium husks as well as tincture of opium. Hopefully one of these will work for you.
> 
> Unfortunately the TI is where bile is re-absorbed. It doesn't harm your body to not reabsorb it, but it does act as a powerful laxative when it reaches the colon. Drugs like Questran bind the bile so that it can't do that.
> 
> I would bring your concerns up with your GI doctor. I would think two weeks postop your appetite should be improved. I hope the rest of your recovery goes well.


I've got a question.  I don't mean to take over the thread but its not harmful to not resorb bile salts?  I think I just need some ressurance  Thanks 

As far as bananas--I wish I wasn't allergic to them.  I'm going to try oral immunotherapy to see if I can develop a tolerance because I desperately need a banana for potassium.


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## handle

Hi Wolfem,
              I have also suffered from many years of poor bile salt reabsorption courtesy of a T.I. resection. And yes, the diarrhea is a feature of that. Bile salts are composed of bile pigments, cholesterol, neutral fats, phospholipids and electrolytes.  
              It is the electrolytes that are most important (and getting adequate protein is a must also.) The electrolytes are sodium, potassium, chloride, bicarbonate, and the often forgotten magnesium. I've found it important to drink an electrolyte replacement drink each day, and make sure that it has magnesium. They usually don't include potassium though. Avocados and potatoes are good sources of potassium (even better than bananas.)
             In answer to your question, it isn't harmful in the short term not to reabsorb, however after a while it can deplete you and hence supplementing will improve your health.
all the best.


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## David

handle, what is your electrolyte replacement drink of choice?


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## handle

I use Staminade powder, which is an Australian brand. There aren't many good premixed ones. They are too low in ingredient concentration, and too expensive. If eating, and more importantly absorbing, a wide range of foods is possible, then the electrolyte drinks are far less important. I also need plenty of salt (sodium chloride.)
In the U.S. the 'Clif Shot electrolyte replacement drink' is the one I'd recommend.


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## carlysy

I am 2 months post-op (removal of terminal ileum, ileocecal valve and cecum) and I am experiencing some problems with D. I never experienced this symptom before with my Crohns so it isn't just "Life as usual" for me, its been quite upsetting to hear so many stories of BM never returning to normal.

My specialist told me that it can take monthss and even up to a year but eventually you bowel can heal and relearn/re-adjust to absorb the bile salts and BM will become normal (or at least more normal). Reading above a few people have mentioned they were told that the D is permanent? 

I'm confused, has anyone whose had the surgery recovered and now have normal BM? Does anyone know for sure whether this problem is permanent?? I sure hope not because no one warned me!!


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## housemouse

carlysy said:


> I am 2 months post-op (removal of terminal ileum, ileocecal valve and cecum) and I am experiencing some problems with D. I never experienced this symptom before with my Crohns so it isn't just "Life as usual" for me, its been quite upsetting to hear so many stories of BM never returning to normal.
> 
> My specialist told me that it can take monthss and even up to a year but eventually you bowel can heal and relearn/re-adjust to absorb the bile salts and BM will become normal (or at least more normal). Reading above a few people have mentioned they were told that the D is permanent?
> 
> I'm confused, has anyone whose had the surgery recovered and now have normal BM? Does anyone know for sure whether this problem is permanent?? I sure hope not because no one warned me!!



Hi carlysy,

I'm so sorry that no one warned you. One of the first things my doctor told me when he suggested this kind of operation (I am being advised to have removal of terminal ileum, ileocecal valve and cecum as well) was that permanent D can happen. I've asked around a lot of this forum about dealing with that and what are other people's experiences. Honestly, to me, it seems like it is different with every person. I know that may not be completely comforting, but it gives you hope to know you may come out on the lucky end. 

People above have mentioned ways in which they deal with D. Talk to your doctor and see if you can get a handle on it. Honestly, it seems like everyone just says it depends on their body. 

I hope that gives you some reassurance.


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## If*

Hello, the body really needs time to heal. 2 months is still a short time, just think how far you have come in the 8 weeks. I found what made 'd' worse was sugar in several forms, carbohydrates via breads especially white. They were too just much for me to digest. Over time you will become more familiar with what helps and you are most likely still healing. 
Try not to despair.


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## carlysy

Thanks Housemate and If* - makes me feel more hopeful


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## Scaryman

I am looking at having a similar surgery in two weeks. I've been warned about loose stools for the rest of my life including Bile. I have also been warned that I'll require a permanent B-12 script at my pharmacy for b-12 shots as there is not other way to get the vitamin through traditional means.


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## Traumanurse

You just learn to handle your own new "normal". I had a daily routine for 10 years after my resection. D every morning till noon, take 3 Lomotil, then mostly fine for the rest of the day. Plan very few meetings in the mornings, and luckily I now do most of my work at home.

You'll figure out you own body and what makes it best for you.

Good Luck, and you'll be just fine....


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## n00b

I had a TI resection around 10 months ago and get D pretty bad some times, although on very rare occasion I do have normal BM’s (whatever that is???).
I sometimes take Questran when I can be bothered/think about it which does help.

Whenever have I spoke with my GI nurse he seems to think (and I agree) that way before I have Crohns I suffered with IBS and probably still do.  Hence the D, crampy and general bad guts on accasions.
My BM’s have never been what you would call predictable for as long as I can remember (I’m 38 yo male now), all I know is that after the resection I feel so much better mentally and physically.  
OK I have some D issues on some days after a few beers, greasy/fast food but hey..who doesn’t?

I hear people in my office all day long trumping, stinking out the loos and loosening their belt buckles and they don’t have Crohns, are they bothered?  No.  Most people have days when their tummies are playing up.

One day my Crohns may be back (so the stats say) and who knows; when it does there may be new drugs to cure it by then.  But for now I am in remission and doing everything I did before and loving it – and that is because of the resection.


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## Scaryman

Those that lost their cecum and TI and ICV and part of ascending colon, just curious how long your surgery lasted laproscopicly? Thanks in advance.


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## carlysy

I'm pretty sure my surgery lasted for about an hour and a half


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## Scaryman

carlysy said:


> I'm pretty sure my surgery lasted for about an hour and a half


Did you notice a quality of life change for the better?


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## Traumanurse

Question on this subject:

How much bowel removed causes short bowel syndrome?

My Doc keeps warning me about too many surgeries because of this condition. I've done a small amount of research, and this too seems subjective, just like most of the Crohns symptoms I hear on this forum.

The post above said 3 surgeries. I imagine it depends on which sections and where, but just wanted to know if anyone has actually been diagnosed with that after surgery?

Thanks for the info. :confused2:


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## jackbeth58

I'm about 6 months down the track from small bowel resection. At the hospital today I just found out the ileocecal valve was removed as well. I have had bad D practically the whole time since the op and nobody ever told me that would be normal. I've tried Questran, Imodium and all the anti-D tabs. Am now taking Metamucil. I just mix up the remedies day by day to see whichever works best. I take Imuran and I've been deficient in B12 for years so I take a tab for that. Also tried probiotics. I also get a lot of wind which I didn't have pre-op and stomach cramps. Hoping things will improve in time so I can plan holidays etc.


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## BayAreaChronie

Have my first surgery of these three Dec 6. Doc and surgeon say you dont get permanent D with this operation. 
Buy EVERYONE says this is the case. Whats the deal? Is it the TI that is the cause, or could it be the amount that is being cut?


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## TMB

Hi I am new to the site I had an illeocecall valve removal after complications during a histerectomy, the operation was done four weeks ago. After sufferring from bilesalt diarrhoea for two weeks a friend gave me advice to eat gratted apple and marshmallows well I have now swung into episodes of constipation, any advice on how to manage the constipation?:confused :confused2:


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## gusgus45

Luckily i do not have Crohn's Disease, but in 2009 i had a bad misdiagnosed appendicitis which was only discovered 5 days later, i was blessed enough to live since my appendix ruptured the day i went in to the hospital the first time, long story short they had to remove a large portion of my small bowl and colon with it the ileocecal valve. There is definitely no treatment or method to make sure you don't have diarrhea on daily basis but I tried doing the whole eat less food but more meals but that only gets you to the bathroom quicker, what i found that helped mostly is High Protein food. I do take Narco (about 7.5-10 mg per day) in the morning and that seems to make it somewhat better with the pain and only about 3-4 times to the bathroom with semi-loose stool. Make sure to avoid oily food (especially fast food joints), try not to use the bathroom because you feel like you have to, train your body to only go 3-4 times max a day and the feeling will go away. I used to go about 10-15 a day on some occasions. Stay away from high dosage of Ibuprofen cause it will irritate you, take multivitamins daily because the missing section of your intestines doesnt absorb major vitamins like A, K and B12s etc...
Hope this helps


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## EKF

jackbeth58 said:


> I'm about 6 months down the track from small bowel resection. At the hospital today I just found out the ileocecal valve was removed as well. I have had bad D practically the whole time since the op and nobody ever told me that would be normal. I've tried Questran, Imodium and all the anti-D tabs. Am now taking Metamucil. I just mix up the remedies day by day to see whichever works best. I take Imuran and I've been deficient in B12 for years so I take a tab for that. Also tried probiotics. I also get a lot of wind which I didn't have pre-op and stomach cramps. Hoping things will improve in time so I can plan holidays etc.


hi Do you mean a tablet for B12? if you have no t ileum you should be having B12 injections as you wont be able to absorb it. Sorry if I misunderstood and you know already!


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## dccdeuce

EKF said:


> hi Do you mean a tablet for B12? if you have no t ileum you should be having B12 injections as you wont be able to absorb it. Sorry if I misunderstood and you know already!


Sublingual B12 tablets are available. I got mine at Costco. Works great, no shots and cheap!


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## moose185

it's been about 9 weeks after my resection, they took out my ileocecal valve as well. I've never had any diarreha since, maybe i'm the exception. Just about all my bowel movements have been normal. I only go 2 to 3 times a day now as opposed to 6 to 8 before. 

Maybe your eating too much fibre in your diet causing the diarreha just a suggestion. Even normal people without cronhns can get loose stools from eating too much fibre.


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## David

dccdeuce said:


> Sublingual B12 tablets are available. I got mine at Costco. Works great, no shots and cheap!


For the vast majority of people with Crohn's disease who are deficient in B12, especially those with resection, sublingual B12 is nowhere near enough.


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## Clash

My son has had an ileocecectomy. It was last August and we were also warned that he may experience looser stools or D. Although it may have occurred for the first few weeks after surgery it really hadn't been an issue since, luckily.

Also he has his b12 monitored but so far her has stayed in the mid normal range. In an effort at one time to up that number I asked his GI for a nasal spray form of b12(taken once a week) px. It did increase his b12 effectively but he eventually stopped using it. His b12 went back to the normal dead in the middle range.

I got the idea for that form of b12 from my daughter's GI. She was scoped for CD due to her B12 being extremely low. No CD but her GI wanted her to b12 shots. She did not want these so he offered the nasal spray px. It worked really well for her.


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## dccdeuce

David said:


> For the vast majority of people with Crohn's disease who are deficient in B12, especially those with resection, sublingual B12 is nowhere near enough.


I don't know if David has a basis for that opinion but sublingual B12 is worth a try and better than injections from a convenience and cost point of view and nasal B12 can be extremely expensive. Surprisingly, some doctors don't know about these alternatives.


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## Clash

Sorry I wasnt aware of the high cost as we have a px plan. So I only notice if it is more than we generally pay for pxes.


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## erikaann

Hi.  I'm 6 days post ileosecal resection, removal of TI and C.   Wondering what you folks ate following the surgery?  I was in the hospital 4 days, and didn't eat anything.  Just some liquids.  Came home and had pureed soups for the last 2 days, but I am beyond starving.... I just don't want to over do!?!?  Didn't get a good eating outline from hospital.  Thanks


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## dccdeuce

It takes a while after this surgery to get back to a satisfying diet. Search the internet for suggestions about diet after iliocecal resection. I found one at Livestrong.com.

You should read about bile acid diarrhea. Fat is a big problem, so low fat foods should be your first choice. For example, for me, ice cream is a big problem, but frozen yogurt doesn't cause trouble. Ask your doctor about Cholestid pills, or similar meds, to take with meals to control the bile acid diarrhea. Hope you recover fast.


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## DEmberton

I ate lots of baked potatoes, salad, meat, chicken, bread, anything I could think of to gain weight. It was fun. My surgeon just said to avoid too much fibre and not to have any really big meals for the first 2 weeks.

They didn't tell me about BAM until my 3 month follow up. I don't know if the relatively mild symptoms I've had have been due to the disease coming back (which the 1 year colonoscopy confirmed) or whether it's BAM as a result of the surgery.


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## matt82

moose185 said:


> it's been about 9 weeks after my resection, they took out my ileocecal valve as well. I've never had any diarreha since, maybe i'm the exception. Just about all my bowel movements have been normal. I only go 2 to 3 times a day now as opposed to 6 to 8 before.
> 
> Maybe your eating too much fibre in your diet causing the diarreha just a suggestion. Even normal people without cronhns can get loose stools from eating too much fibre.


I'm having surgery on my right colon for a fistula that won't heal. I'm a little worried now reading that so many people have had problems with bowl movements. My surgeon hasn't said anything about any of this. Just that I'll feel a lot better then I do now.   I hope I'm the exception too where I don't have to go to the bathroom 10 times a day. Since rate now it's about 2 to 3 times a day


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