I am almost a year out from my third surgery to complete my total colectomy with IPAA. I had a terrible time after my third surgery--plagued by gas, pain, very frequent stools, and general malaise. I have since discovered that I have a problem with FODMAPS (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols). These are essentially short chain carbohydrates that are poorly absorbed in the small intestine and and can cause irritable bowel like symptoms. My first clue was discovering that I was lactose intolerant and then I realized that fructose was a culprit along with other sugars. I also was having a terrible intolerance to onions and garlic, and those are huge problems in the FODMAP world. I'm sharing this because this has been a break through for me. I now feel SO much better. I'm wondering if anyone else has encountered this. I have even found a pilot study out of Monash University in Australia--The Effect of Reducing Dietary FODMAP Intake on Bowel Function in Patients without a Colon (Croagh, et al).
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Hi there. I've been using the low FODMAP diet from Monash university for the past 6 weeks after struggling along for the past 15 months with constant diarrhoea that I have suffered since the reversal of my ileostomy after surgery for colorectal cancer. I have also been seeing a dietician and keeping a food diary and all this has helped but I still get undpredictable episodes. I've downloaded the Monash app and by following the regime strictly am hoping to completely rid myself of the diarrhoea. That would change my life!
Have you started using the app?
Yes, I do use the app and I love it! I'm like you, though, and still get unpredictable episodes. I never went through the complete elimination phase, as I really thought I had a pretty good handle on what my triggers were. Unfortunately, I'm still plagued by unknown surprises. I find that if I eat at home and am in total control of what goes into my food, I (not surprisingly) do quite well. It's when I try to eat out or at someone else's house that I get into trouble--there always seems to be some hidden FODMAPS.
Did you have any of this trouble before your surgery? I was plagued by UC problems, but not like this. I'm trying to understand how having a colectomy essentially induced this FODMAP intolerance. I guess the entire gastro microbiome was changed? I'm also wondering if I would just be happier going to a permanent ileostomy or if I would still be plagued by problems. I really love to eat and I love good food, so this has been very difficult for me. But at least I'm eating...
hi specks yes I have had great success with fodmap I was guided by a dietician who dealt with the fodmap program which was a great help,I laughed with her when I started saying she would never get me of gastro stop and like products but yes 12 months later I no longer use anything it has been a long battle 9 years to find a fix , I have been following a dietician from America by the name of Kate Scarlata blog and instergram has a lot of new products and recipes just for fodmap people has a lot of interistering information hope this helps.
So sorry it took so long, but so happy you're doing so well! I have read some things from Kate Scarlata. I think I'll start following her regularly. Did you have IBS symptoms before your surgeries or did it all happen after your surgeries?
Hi again specks. I have wondering the same thing: did the operation actually cause the condition requiring following a low FODMAPs diet? I had always had a sentative bowel which reacted to stress but not really to foods. When I told my surgeon about the diarrhoea , he asked if I wanted to go back to having a stoma and bag, but I would rather persevere with the diet route. You never know, maybe one day my bowel may start behaving normally. How great that would be. By the way, as well as Kte Scarlatti, another very good person to follow is Suzanne Perazzini regarding FODMAPs. She's based in NZ. Her Facebook page is under the title IBS & the low FODMAP diet. Worth a look.
Does anybody has suggestions for sites with Gluten free/lactose free FODMAP diet recipes? I just came out of the hospital after my second intestinal blockage in 2 months. I have a total colectomy since 2014, then diagnosed with Crohn’s in 2016. I bounce from diarrhea to constipation in the last 5 years. I know an ileostomy will end my misery, but I’ll die with my JPouch. Suggestions, ideas, advises will be highly appreciated.
It will be 8 years since my CLC and iliostomy. Looking for recipes under the low FODMAPs guidelines is not the answer for me, but using the app for eliminating individual FODMAPS has been invaluable.
I have eliminated gluten, lactose, many different vegetables including pumpkin and lettuce except cos, stone fruits, grapes, legumes, eggs, onions, garlic, seafood, spices, sugar, alcohol and all the generally good things in life. I never mix vegetables. I also rarely eat outside of home.
I take gastrostop, 2 different probiotics and codeine (to slow motility).
My bowel loves white toast, white rice, quinoa, oats but not Bircher muesli, green tea, potatoes, gf pasta and bananas.
If I follow this strictly to the letter, I can live a normal life, if you can call the above normal. The 2 worst triggers I find apart from onions and garlic, are lactose and eggs. If I slip up, I pay a high price.
The worst thing that ever happened to me, was a couple of years ago, having a coffee and eating a piece of carrot cake at a cafe and having an uncontrollable bowel within minutes. I’ll never do that again.
Hey Barbara! Sounds like you’ve eliminated quite a lot and are restricting to home. I have also eliminated a lot, but have found a lot of substitutes and have actually eaten out at a myriad of restaurants by just calling /emailing ahead and working out a plan ahead of time. I do love food!! Happy to discuss further if you want to!
Hi there. Thank you for your reply. Where do you live? It’s not so much restaurants, as going to people’s homes…family etc. they find it’s too hard for them . An example…. I’m asked last weekend…”Can you eat chilli mussels?” I have one relative who sneaks things into the food just to see if I’m just putting it on. 😳😳😳
having said all that.., I am very happy that I have this thing under control. It was so bad that not going to restaurants is a small price to pay 😄
Wow! Sneaking things in! Crazy! My family friends try really hard to accommodate me, but the repeated questions crack me up. Some continuously ask about silly things-can you eat rosemary? Cilantro? Others have “my card” And know what works. I’ll send you a copy of it. My husband and I love to cook and have adapted most recipes to work. Do you know about Asoefetida? Green onions! All of the stocks and spices from Fody and Rachel’s Foods?
I live in Bethesda , Maryland-near DC. How about you?
I live in Perth, Western Australia.
i looked on Google Earth to find Bethesda. There are no cities of any size near Perth, unlike where you live! I find it fascinating seeing where people live all over the world. I’m originally from Scotland.
Thanks for your tips…I use spring onions instead of onions and don’t tend to buy any ready made sauces etc. I’ve found making things from scratch works better for me. I did try getting Hello Fresh delivery and didn’t have any problems with it, but enjoyed it so much I found myself eating 2 portions of the minimum 4 instead of 1, and put on 3 kgs! I cook an evening meal every day, but don’t each much the rest of the day.
We are definitely geographically very far apart! You have the distinction of being closer to Monash University-where I get so much of my information! I'm glad that you've figured out what works for you. I agree that making things from scratch is pretty much the only way to go. Packaged goods like sauces and soups almost always have onion/garlic in them. There is a brand of spaghetti sauce that is sold in the store that is labeled "sensitive" and doesn't have any onion/garlic. It is made by Rao. I have definitely seen an increase in store items that are labelled low FODMAP. Are you familiar with https://www.fodyfoods.com/ and https://www.rachelpaulsfood.com/?
I can't seem to paste my "going out card" here. Oh well.
Yes Monash uni is the place for all we need to know. I was part of a world wide research project into LARS run by Dr Celia Keane who wants to change the questionnaire that gives a score on LARS severity and also making the medical profession aware of this syndrome post iliostomy. She is in NZ. If you google her you’ll see the work she is doing.
I am aware of these 2 websites. During the nearly 8 years I have spent many long hours looking for help. I agree there is much more low FIDMAP stuff around. I make my own lactose free yoghurt and ricotta cheese. They are staples in my diet.
I looked back on this thread at what I was saying 15 months after my iliostomy. It brings back to me how hard it was in the beginning and how far I’ve come. You’ve worked hard at it too I think Speck. By the way is this your real name?
Wow-that was more than 5 years ago. It looks like we've both come a long way! Thank goodness for that!
I will definitely look up Dr. Keane.
And no, Specks is not my real name. I'm not usually a poster in forums like this and when I joined this group I was really desperate and felt very alone. I figured it was appropriate to use a pseudonym, so picked the name of a stuffed animal my kids gave me:-)
My real name is Rebecca, but I kind of like going by Specks:-)
Specks you are then! When I read back, I see I also felt very lost and alone. My ex husband (married 25 yrs, divorced 34 yrs) was a great help when I got home from hospital. He saw everything that I went through and was so kind. I couldn’t have done it without him. He also looked after my precious doggie, Rupert. Picture attached…of Rupert not my ex husband,