How can you manage IBD before proper diagnosis?

[joetaylor]

I won't bore everyone with all the details, but to cut a long story short, I've been suffering with diarrhea and occasional stomach twinges for the past couple of months. Having seen my doctor and had a couple of tests, I've been referred to a bowel specialist at the NHS at the end of July, with a colonoscopy not liked to happen before September.

I'm more inclined to believe it's not IBS since my cousin was diagnosed with Crohn's at the start of the year. The only things I've found that help are avoiding spicy foods, not consuming dairy, not drinking beer and taking Buscopan on alternative weeks (I know it's technically for IBS, but it definitely helps).

Is there anything more I can do to help manage the condition before diagnosis? I can't take prescription medication all the while it's an unofficial, so I'm limited to over the counter things. Does exercise help?

I'm heading off to Glastonbury next Wednesday and I'm petrified that I'm going to spend the whole time worrying about what might happen.

Thanks for any help.

 

[nitty]

I would suggest keeping an input/output/symptom diary. Try to keep a record of things that you eat and drink, along with bowel habits and other symptoms such as when pain occurs in relation to eating and where it is located. You might be able to identify any foods that cause problems as well those that are OK for you.

It may mean writing down things that we consider too much information for normal conversation (e.g. stool consistency, frequency, any signs of blood or mucous) but these are all things that we freely discuss on this forum because they can be very helpful pointers in establishing what the problem may be.
If you are worried about anyone else seeing this sort of info you could make a code that only you know about. I have a diary with a whole list of symbols that only I understand.

A diary is helpful in chronic conditions because, over the longer time periods, it is very easy to forget when things change or to notice changes which happen gradually.

You then also have a very useful source of information to take with you when you see any health professionals.

Enjoy Glastonbury. Make sure you take some anti-bacterial hand gel (those toilets could be 'interesting'!) and some wetwipes. If you are worried about having a runny gut then you could always take some imodium tablets with you, but use them very sparingly - you don't want to bung yourself up either!

When you do get an appointment for the colonoscopy take a look round this forum for tips on taking the prep - it is notorious, but there are ways to cope with it. If you like to deal with things with a sense of humour check out Billy Connolly's take on colonoscopy prep on vimeo - hilarious!!

This is a great forum. There will always be someone here who has some idea what you're going through, and you can discuss ANY gut symptoms, no matter how gross you may think they are, because we've all been there!

 

[ronroush7]

I agree.

 

[Tuff]

Welcome to the forum, sorry you had to find us. For Glastonbury, you could wear adult diapers. They aren't noticeable through clothing. Bring a kit with you, with garbage bags, diapers, wet wipes, then you don't have to worry. You could try a low fiber diet, which will reduce your output, and your intestines won't have to work as hard. Hopefully you will get on some medication soon. And yes, the colonoscopy prep is awful. I had an endoscopy without sedation, and I'm going to ask if I can have my next colonoscopy without sedation.

 

[Lizzie]

Yes, the advice about wearing pads is excellent if you're going to Glastonbury, they give you time to get cleaned up without worrying about anything showing through your clothes straight away if you have an accident. I buy Attends F6 faecal pads online and they're really good. When I first started using such products I tried standard pads and pants for urinary incontinence in the supermarket and they were absolutely hopeless, you have to get the faecal pads. I don't know if you can buy them in the shops, I wouldn't like to ask an assistant and I've never seen them on display, but the firms that sell online are very good and get them to you really quickly. Prices vary massively depending on who you buy from.

 

[Cali01]

I would look into the medical marijuana forum. I was diagnosed then given no medicine for 4 weeks (I've since changed Drs) & mm really helped.

 

[nitty]

The OP is in the UK and, sadly, marijuana is illegal here. There is a spray version of cannabis but I believe this is generally only prescribable for MS or similar nerve related pain.

 

[Cali01]

Darn, I didn't know that. I feel like mm has given me a higher quality of life in regards to my Crohn's symptoms (I take very little, I don't get high or anything)

 

[wild_one353]

eliminate refined sugar completely, limit natural sugar like from fruits. eliminate lactose sugar from milk only eat low lactose cheese for calcium and protein.
eat high fiber foods, whole grains especially oatmeal, beans only well cooked, nuts pistachios walnuts peanut butter, cooked veggies brocc cauli cabbge spinach like make soups, eliminate raw veggies with bacteria on them.
Eliminate all meat.
exercise regularly walking running weight training. 30-60 min per day just do what you can.
take vitamin supplements vit c 500mg, vit d 1-2000iu per day, vit e tocopherol 400iu per week, tocotrienol 1 pill per week. b vitamins niacin as nicotinic acid, a general b multi, folate as methyl folate, vit b12 adenosylcobalamin for sublingual 1x every 2 weeks. carotenoid supplements carotenall and lycomato. lithium 1 pill per week to stimulate autophagy and eliminate intracelluler bacteria pathogens from SWANSON vitamins.
Make a tea with herbs in it green tea, fresh ginger, basil, black pepper,italian herbs, turmeric.
try melatonin 1mg. try resveratrol around 12.5 mg per day.
consider taking a fiber supplement psyllium or inulin 10-20 gms per day start slow then build it up. All these recommendations either kill bad bacteria, boost your natural immune system, reduce inflammation or feed good bacteria or starve bad bacteria and backed my science and also, its what i have done more or less to control my disease for 7 years. I also take lialda.

 

[joetaylor]

Thank you all for the replies and suggestions. It's incredibly heartening and encouraging to find that after being affected by a life-changing condition, there's a community with such positivity and togetherness.

I know it won't be fun when the colonoscopy comes, but with the advice and information available on here, I'm sure I'll cope.

Thank you everyone.

 

[Grumbletum]

Yes, I'm with nitty. I'd been ill for about 6 months when I first found this forum. I had a fistula from my bowel to my bladder and constant UTIs, so Crohn's didn't figure in the equation for quite a while. When it was first mentioned as a possibillity I Googled and this was the first site that popped up. I also wasn't prescribed any meds until I had a confirmed diagnosis and was getting pretty desperate by then.
A low residue diet was suggested at first but it didn't do me any good, but then some folks suggested an elimination diet and that seemed to make sense. Doing that I quickly found out that caffeine, refined sugars, yeast and processed foods were aggravating my symptoms. Cutting them out didn't cure me, but it did give me significant relief from symptoms, and equally importantly, made me feel I was doing something proactive about what was happening to me.
Re: exercise, the whole diagnosis process can be really time consuming and stressful. What helped me most was yoga and meditation - gentle and good for anxiety and stress.
Hope you have a good time at Glastonbury.