Diet struggles after illeostomy reversal

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Diet struggles after illeostomy reversal

Postby Jancy » Sun Sep 10, 2017 8:37 pm

First post. So grateful for the people and information on the forum. It has been the place I have found everything the surgeons fail to educate you about before and after they operate. I had Stage 1 rectal cancer. LAR in January with a very low tumor. Temporary illeostomy for three moths with a reversal in mid April. I had been following a low residue ( no fiber) diet during the time I had the illeostomy and for a few weeks after my reversal. The oncologists said I should be back to a normal diet by now and can eat whatever. Unfortunately, I have episodes with certain foods, mostly raw vegetables and especially lettuce. I have severe stomach cramping followed by vomiting and then12 hours of miserable stomach pains.

I have had this reaction with lettuce, snap peas and dried apricots so far. I am hesitant to eat any vegetables now. Has anyone had this same experience? I don't know where to find help with this. A gastro doctor, a nutritionist? Not sure why this is happening or why my system is so different now. I did not have chemo or radiation.
Rectal cancer stage 1 1/2017
Temp illeostomy 1/2017
4/2017 illeostomy takedown

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Re: Diet struggles after illeostomy reversal

Postby JJH » Mon Sep 11, 2017 12:27 am

Jancy wrote:... I don't know where to find help with this. A gastro doctor, a nutritionist? Not sure why this is happening or why my system is so different now. I did not have chemo or radiation.

What country are you in? If you are in the US you can search for a nearby Registered Oncology Dietitian Nutritionist on the web page below by clicking on the "Search by expertise" box then entering your zip code, then checking the box for "Cancer/Oncology Nutrition" and finally clicking on the box "Find an RDN"

This might allow you to find an Oncology RDN who knows something about the dietary constraints associated with CRC post-surgery. In my experience, ordinary dieticians are not of much use because they do not understand the effect of various foods on bowel motility.

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Re: Diet struggles after illeostomy reversal

Postby susie0915 » Mon Sep 11, 2017 9:02 am

I had issues with frequent bowel movements for over a year after reversal. I don't know where you live, but I went to the University of Michigan bowel control clinic. (This was not the hospital that treated my cancer). One of the recommendations the doctor had was meeting with the dietician. The dietician had me follow the low fodmap diet. It is gluten free, no high fructose corn syrup, and most dairy. The idea is to follow for awhile then slowly add items back into your diet to see what you need to avoid. If there are certain foods that make you sick, avoid. It was pretty helpful to me as I found some foods did affect me but not many. Dairy was an issue, but not cheese or milk. I avoid ice cream. I don't eat a lot of veggies because it makes me go to the bathroom more, but I will have green beans occasionally. You can get the low fodmap diet online. It used for many with digestive diseases. Good Luck
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoid/scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

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Re: Diet struggles after illeostomy reversal

Postby MissMolly » Mon Sep 11, 2017 9:28 am

It can be a disservice when physicians tell a patient that they should have recovered sufficiently by x or y month post surgery to eat anything and everything. The fact is that the intestines do like to be manhandled during surgery. Surgery with resection is traumatic to the intestines. The months post surgery are not always a smooth transition with regards to food choices and digestion.

The symptoms you describe after eating lettuce and fibrous vegetables sound suggestive of a partial small bowel obstruction - either due to a congestion of partially digested food material (a difficult to pass food boulus) or a stricture/narrowing of a segment of small intestine or a tethering of scar tisssue/adhesion that is restricting the unfettered passing of food. Digestive pain and nausea and vomiting are symptoms of a partial bowel obstruction. You can think of it as a traffic congestion along the state highway at 5 pm . . . Traffic inching along, bumper to bumper, cars (digested food material) backed up . . . Until there is a widening in the roadway that allows the traffic to move along (clearing of the intestinal restriction).

It is not uncommon for some people to have to remain with a soft, low residue diet for several months. Adding in new food choices one at a time in small portions.

Lettuce and vegetables and fruits are often the more difficult foods for a healing intestine to tolerate. Salads can be particularly problematic. Chinese vegetables, fruits with membranes (oranges, grapefruit), fruits with outer skins (apples), fruits with dense fiber (pineapple, celery, coconut) most all be consumed with a degree of caution for those with a temperamental intestinal system.

My suggestions:
1. Start small. Start with a small portion of a desired new food, 1/4 cup to 1/3 cup. You do not want to overwhelm the intestinal system with a large food portion that it is hen unable to process through the digestive tract.
2. Consider grazing as opposed to eating 3 square meals a day. The goal is to keep food intake at any one time to a small portion size that can be easily assimilated.
3. Cut, dice, slice, or pulverize with a food processor the new food item. The goal is to decrease the work of digestion by the stomach in having to break down the food item into smaller and more easiky digested particles. Think of cutting and dicing your food into small pieces as you would for a toddler as "pre-digestion" to reduce the work of your healing digestive tract.
4. Be cautious in introducing foods with insoluble fiber. Introduce these foods in small quantitis, one at a time, so that you can learn to identify which foods are problematic. Ex. Avoid a large Cobb salad at the restaurant when eating out with friends.
5. Chew, chew, chew. Chew food thoroughly before swallowing. Like the advice to cute and dice food into small nano particles, the goal of chewing is to mechanically break down food into smaller particles to lessen the work of the stomach and digestive enzymes.
6. Drink plenty of clear liquids. Water, tea, coffee, electrolyte drinks. Infuse your intestinal tract with adequate clear fluids to keep food material moving along.
7. Exercise and movement. The intestines are composed of smooth muscle and, like any muscle, need exercise and movement to function optimally. Walking and simple yoga postures both aide intestinal motility. Yoga postures that incorporate thoracic and abdominal rotation/twisting are especially helpful for intestinal propulsion. Think of gentle yoga as massage for the intestinal tract.
8. Use of an osmotic laxative. Miralax and milk of magnesia are both osmotic laxatives. They act to draw water into the intestinal tract with a mild kinetic muscle effect. Osmotic laxatives are not habit forming and are not stimulate in effect. Most can be taken safely for long periods of time. The benefit of an osmotic laxative is that you can add or subtract doses to reach the desire bowel consistency - soft bowel movements to watery/loose bowel consistency. Osmotic products can be very helpful when trying to ease a partial obstruction by liquifying fecal material and enabling it to pass. Consult with your doctor to determine if an osmotic laxative is right for you.

Problematic foods include:
A. Mushrooms (Whole and even half mushrooms can absorb water in the digestive tract and swell, causing pain).
B. Pineapple, celery, asparagus, artichokes, Chinese vegetables, brocolli spears - vegetables with stringy fibers.
C. Coconut flakes - can cause problems by coagulating in the digestive tract, forming a ball of coconut. Eat one macaroon cookie. Avoid eating two macaroon cookies.
D. Fruits with membranes: Oranges, grapefruit. Section fruits to remove the membrane covering.
E. Fruits with tough outer skins: Apples, potatoes. Peel the outer skin.
F. Seeds and nuts: Chop or grind nuts and seeds to avoid painful passing.
G. Dense oatmeal, granola, flax seed, legumes: These foods can be too harsh and rough when passing through an inflamed or healing intestinal tract. Proceed with caution.

I think you are likely dealing with an area of intestine that remains irritated and inflamed post surgery with the possibility of an offending area of structure or scar tissue that may be narrowing a segment of intestine. I would scale back in the foods that are know to give you digestive distress and reintroduce Foods one at a time using the guidelines above (small portion size of 1/4 cup to 1/3 cup; dice and slice food into small pieces; consume plenty of fluids to flush the digestive tract; chew and chew and chew some more; add in a small dose of Miralax in consultation with your MD.

Time and patience will be your best friend. I have a permanent ileostomy and still have to be cautious of my food choices.

Best wishes,
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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Re: Diet struggles after illeostomy reversal

Postby ozziej » Tue Sep 12, 2017 4:57 am

Hi Jancy,
Karen has given you excellent advice. Life after low rectal resection is often challenging. As you can see from my signature, I am about 28 months post reversal after a ULAR for stage 1 low rectal cancer. I didn't have chemo or radio either. It is certainly still early days for you so please try to remain hopeful that things can improve. It certainly does sound like you have had a partial obstruction. I had my first partial obstruction in May of this year. I have made several changes to try to prevent it happening again. I started taking lactulose (an osmotic laxative) to clear the blockage, and now take a daily maintenance dose. I followed a strict soft low residue diet for about six weeks then gradually introduced a little soluble fibre. For example i gradually added more and more toasted rolled oats to my corn flakes and then gradually reduced the corn flakes. I no longer eat dried fruit, I have substituted tinned fruit. I don't eat raw or cooked vegetables. Instead, I make my own blitzed vegetable soup. I started with 'safe' vegetables like potato, sweet potato and pumpkin, and then tried adding a little of a new vegetable when I made a new batch. I can now tolerate a small salad consisting of finely chopped butter lettuce and baby spinach leaves (the only types i can safely digest), a few finely sliced baby tomatoes, avocado, and a little feta cheese. When I first introduced these salad ingredients i did so one at a time in a white bread sandwich with some tuna until I could be sure they wouldn't cause me problems. I have almost eliminated lactose from my diet as I found it was problematic. I have a lactose free probiotic yoghurt each day for lunch. Following this regimen has definitely improved my bowel function. I have gone from unpredictable multiple BMs that were often clustered and difficult to pass, to one or two normal BMs per day with no straining. I walk twice a day, with a longer walk after my evening meal. The improvement i have seen supports Karen's advice. If you find that your problems persist and you are looking for further support there is now a Facebook group 'Living with low anterior resection syndrome' where people with LARS share experiences and advice. You will be made most welcome. Best wishes.
F 56 dx 11/14 Stage 1 RC (post EMR)
No neo-adjuvant or adjuvant chemo/RD
3/15 ULAR (open) temp loop ileo
5/15 ileo reversal
NED and hoping to stay that way!! : )

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Re: Diet struggles after illeostomy reversal

Postby tarheelmom » Tue Sep 12, 2017 10:25 am

I had a similar diagnosis and treatment. I'm about 15 months out from reversal. I stuck to a low fiber, bland diet for a few weeks; and then started to gradually add in foods. My doctor said that it would be mostly a trial and error process. I have found that raw vegetables, fruit with skin, and salad bother me the most. I can eat most cooked veggies (except for green beans and brussel sprouts) as well as spicy food (Thai and Indian are fine). Dairy seems ok. Good luck.
52 y at dx, mom to 4
DX: RC on 2/22/2016
Stage I, T2N0M0, 0/32 LN
23 mm x 7 mm moderately differentiated invasive adenocarcinoma
3 cm from anal verge
4/12/16: ULAR, TME, & temp ileostomy
6/14/16: ileo reversal

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Joined: Sat Jan 07, 2017 8:09 am

Re: Diet struggles after illeostomy reversal

Postby Jancy » Tue Sep 12, 2017 6:00 pm

Thank you for the thoughtful and detailed replies. I am glad to know I am not alone in this struggle. I am going to give everyone's suggestions a go and check out the two websites suggested for the dietician and people with LARS.
Rectal cancer stage 1 1/2017
Temp illeostomy 1/2017
4/2017 illeostomy takedown

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