Son going for a colonoscopy

[knitwitty]

Hi there,

Many people have volunteered their advice before and it was a fantastic help so I'm back again to ask again.

My son has a colonoscopy in a couple of weeks time, he has coeliac disease and IBS-D which does not appear to be resolving despite sticking to a gluten free diet, so I am assuming the colonoscopy is to rule out anything more sinister.

On a previous posters suggestion he has tried enterosgel but he tells me that has not helped much either.

He needs to open his bowels almost as soon as he has eaten and he is choosing not to eat if he has to go to lectures, tutorials (he's at uni) which are often in the afternoons so he is effectively eating only in the evenings.

He has been prescribed amtryptiline (10 mg or mcg) but it hasn't stopped the IBS.

He was tested last year for vit D status and advised to take a supplement for 8 weeks but when we asked what his levels were no one was able to locate the results, the Drs will only test vit levels once per year so we do not know if he has improved since supplementation.Heis continuing with vit D and multivitamins.

I am travelling up to the hospital on the day of his colonoscopy to be there when he has had it done, so that I can accompany him home for a few days (we live 200+ miles from the uni) what I wanted to know is what should we be asking the consultant , hopefully I shall be there when he is done in case he is sedated. I feel we have been on this very slow treadmill for ever and we need to know what's going on.

Apologies for the lengthy post.

[rustydog]

Has your son tried the low fodmap diet? Once he has had the colonoscopy results I would ask to be referred to a state registered diet ,to see if they can look into his diet.

I know that he probably knows this already (and I am terrible for doing this too as I have ibs) but going such a long time between eating is not great for his digestive system. Could he try snacking on something easy on the digestion? I purchased a smoothie maker and when my tummy is bad I blend almond milk, a banana and just a small amount of peanut butter, it’s easy on my digestion.

Something I like to ask consultants ( and they probably hate me for it!) is simply - what would you do if this was you? If you were experiencing this what tests etc would you want?

Hope all goes well for you son, tummy troubles suck 😫

[knitwitty in reply to rustydog]

Thank you so much for replying so quickly I have just been out to post his dressing gown up to him as he needs it for his hospital visit!

I will ask the consultant what they would do in his situation, it's a great idea.

He has taken to eating bananas but they seem to go through him like a speeding bullet!

We have a FODMAPS book and we were going to try and follow the diet in it when he comes home and see if that makes any difference.

He saw dietician when he was first diagnosed with coeliac last summer but it was group session and not really tailored to his specific needs. I have suggested he needs to ask for a further referral when he next sees his GP.

Thanks again for your suggestions.

Good health.

[torcol]

Hi knittywitty

I too stray from eating if something is going on and I must be confined for a period. How was your son diagnosed with IBS and Celiac? Was it be process of elimination ( more or less)? Doctors can only go on what you tell them, if he is diagnosed and continues to have symptoms after taking whatever the doctor orders the only other form of action is to do more invasive research. There is no cure (yet) for IBS, medications are a hit and miss and what works for one may not for another. I just live with it and don’t leave until at least a half hour after eating anything to be sure it was tolerated.

There is not a great deal you can ask the doctor since he is doing the test based on the information presented. It’s not like the doctor saw something during a visit and wants to investigate further.

I feel for your sons situation, this ailment is so unpredictable and can ruin quality of life. You have to learn to deal with the episodes, deal with ANY stress, know that anxiety is a big factor. Foremost he has to think positive, he is undoubtedly worrying about going places so that is key to the anxiety in itself. I wish you the best and best of luck with the test.

[knitwitty in reply to torcol]

Hi torcol

My son was diagnosed with coeliac disease via blood tests and a biopsy last year, but he had suffered for 4 years prior to that. We saw his GP numerous times and a consultant who put everything down to exam nerves and general anxiety. He started uni but had to defer during his first year because he was so ill, it was when he returned to start again his GP suspected Coeliac and he was finally diagnosed, I had hoped that his IBS D would abate when he got the gluten free diet under control but despite being completely GF it has not. I do think it has become anxiety related now because he was told for so long that everything was in his head and it became a self fulfilling prophesy so to speak.

He is having a colonoscopy to rule out anything else but he does not appear to have any other symptoms suggesting anything sinister so hopefully that will go ok.

He is due to spend a year abroad in the next academic year which he is really keen to do as he is studying a foreign language, thankfully the country he will be visiting seems to cater very well for coeliacs.

I had hoped he would be much better by now, as his mum I can't help but worry.

Thank you for taking the time to reply.

Good health.

[Lulububs]

Hey

I feel for ur son, i was told last year i was gluten intolerant not coeliac and have been on a constant diet ever since trying to figure out my triggers...

i also have endometriosis so i went on the anti imflatory diet which has helped which could help ur son alot.

I dont eat dairy and i found the worse thing for me was yeast ?

One thing i will say is at first i did what ur son did and i fasted as i just was to scared to eat which actually hurt me even more as my stomach got used to not eating and when i ate i would go to toilet straight away!

So he needs to eat even if it just gluten free biscuits ....

Ginger ones always settle my gut.

I also saw a nutrionalist and i stick to mainly fish or white meats and lotsa spinach and veg.

The main thing she taught me though was i must take probiotics and digestive enzymes it helps digest food . I would not b without mine even take them on holiday with me...

Hope u get some answers in colonoscopy x

[knitwitty in reply to Lulububs]

Hi Lululubs

Thank you for replying, I will ask him to mention probiotics when he visits his GP next week I believe there is a product called VSL which is available on prescription.

I have suggested that not eating might make things worse but I shall pass on your experience to back up this suggestion as he is more likely to listen to someone who is actually suffering in the same way he is.

He is quite good at cooking and he makes things in his slow cooker to avoid any risk of cross contamination with the other students in his flat.

He is thinking of giving the Low FODMAPS diet a go to see if we can identify any trigger foods, he seems to think that onions are particularly problematic.

I hope you continue to feel well and thanks again.

[Lulububs in reply to knitwitty]

Yes onions, garlic, anything acidy( ie lemons limes orange juice) spices, i always keep things plain and simple.

Anything that will inflame the gut, it common sense really.

Dairy is just really bad for most people with ibs i use soya.

I stay away from bread it bloats and makes me feel really sick( especially the gluten free ones).

It is very hard especially for a young man at uni. I am a 40 year old woman and i find it hard.

The probiotics and digestive enzymes for ibs is a must it will keep the gut calm and the peppermint oil capsule as that settles.

You got about as much chance as getting that probiotic on nhs as i have dating johnny depp( sorry it only way i can tell u how bad they are lol) it EXPENSIVE!! They will not give it. I have just gone to holland and barratt got meself bioglan gut flora( it for ibs) , digestive enzymes ( which will stop him goin to toilet straight after he eat it absorbs fat from food which ur body wont tolerate as a ibs sufferer) and peppermint oil capsules!

With that he should b alot better!

Thats what my gastro and nutrionalist told me to so and the anti inflame or fodmap diet.

By the way i had to pay private to see them

As i was told it was a 6-9 month waiting list to see one.... by which time i was already down to 7st ( im 5ft 9) so i needed help...

[knitwitty in reply to Lulububs]

Thanks again for replying, I know what the NHS is like but he is in Scotland so at least his prescriptions are free and he is able to get some GF food on prescription for the time being.

I will pass on your suggestions regarding the stuff from Holland and Barratt.

Many thanks, I don't know what I'd do without this community's support.

[Lulububs in reply to knitwitty]

There is alot online to help aswell. I wouldnt know what to do without it as my gluten yeast intolerance is really bad noone can believe my ceoliac test came back clear but i think it coz i had already figured it out and stopped eating it about 4 months before test and apparently my dr said i should have splurged on it all before test which there was no way i was goin to do that as ur son will tell u being gluted is awful!!!

It really is all about diet, keeping it clean and healthy and ur colon clean and healthy , i go between c and d so it a nightmare knowing what im gona have that week.

Most is just general common sense , i only eat out if i check they have a gf menu, nandos is good they are fantastic there it nearly all gf.

All the supermarkets do free from ranges and there getting cheaper.

Dont eat anything that u know would even upset a normal person stomach ie currys and spicey food and fizzy drinks....

keep the gut healthy.

My friend a ceoliac and she says the probiotic and dig enz help her b not so sensitive as in when she is gluted it dont last her so long to get over it...

so there some advice to get him goin but he sounds like he got his head in right place... it a bonus in some ways as it totally changed my way of living for the best... i loved my junk food now i cant even stand smell...

[Bev40]

Hi, I hope your son feels better soon, and gets answers and help so that he can enjoy his time at university.

With regards the colonoscopy, my teenage son had to go for two as the first time they did not sedate him and as you can imagine he just could not relax, so could not be done correctly. I was not there and his Dad is not as good as me as insisting things get done a particular way!! It was very annoying having to bring him back (and we did not have to travel far!), not to mention stressful for him. Make sure your son gets sedated if he wants it.

All the best x

[knitwitty in reply to Bev40]

Thanks Bev40,

I am travelling up to meet him at the hospital so that he can get the sedation if he wants it, I also think it might be a good idea to be there if they tell him anything as he is like to forget if he has had sedation.

To be frank I have had enough of being fobbed off and will ask some pertinent questions if I have the chance.

It has taken us years to get his coeliac diagnosis and that was a struggle with lost tests, double sets of hospital numbers and registrars not being prepared to acknowledge that particular results pointed to a positive diagnosis, I have no problem with people admitting they do not know something but they should at least have an open mind if someone is presenting them with evidence from the BMJ.

I just hope Virgin trains do not let me down now as I have a 200 mile journey on the day of his colonoscopy.

Thank you again fo taking the time to reply with your suggestions, sorry about the rant!

[Bev40 in reply to knitwitty]

Hi, can totally appreciate your frustration. My son has IBS and we are treating it through accupuncture, and he is also attending a chiropractor. GP not really taking issues seriously. Thankfully he 'only' has IBS and nothing more serious. Sorry not downplaying IBS, but hopefully you know what I mean!

Make sure you do ask questions. That is terrible that they lost results. Vitamin D is a good supplement anyway. I take it as I have MS - oh and live in Scotland where the sun is a distant dream most of time! I think most people are advised to take such a supplement as we all lack vit D. If you go to Holland and Barrett you can get a spray so at least not another tablet to take

All the best x

[knitwitty in reply to Bev40]

Sorry I meant to say I hope your son is feeling better now.

[VA80]

Hi there,

I wrote an article a while ago which may be of interest to you:

healthunlocked.com/theibsne...

I hope your son finds a solution,

Kind regards

Vikki

[knitwitty in reply to VA80]

Hi Vikki

Many thanks for replying, I have read your article and it is very illuminating. I shall pass it on immediately, it never occurred to me that imodium might contain something that could exacerbate the problem rather than cure it. He has been trying to cut down on sugar since being ill and he is careful to buy only GF products if he gets cakes / biscuits I'll bet they contain artificial sweeteners too.

I'm so glad you pointed us in a slightly different direction, anything is worth try when you are desperate.

I hope you stay well.