Piles and IBD - anyone have any experience?

[PolkSaladLucie]

Saw a consultant last week as I have been having problems for the last 4/5 months.

Either constipated with bright red blood when I wipe or very loose with blood and mucus in stools.

He thinks the bright red blood is from a singular 'pile'!!! but the rest of it is caused by ulcerative colitis. He's referred me to have the pile banded and also to have a colonoscopy.

Just wondered if anyone has any advice/tips?

[castille]

Do you know you have piles? Because the blood can be caused by the UC too.

As for advice, I tried all sorts of different supplements and diets when I was diagnosed but nothing really made much difference. Your consultant will decide on treatment - there are various drugs of differing strengths to try and see how you get on with them.

Good luck

[SofiaAmes]

I have had piles all my adult life. They are the kind that are not operable (ie external). The only thing that works on them (and it works really well) is Protofoam. It's a cortisone foam that shrinks the pile almost on contact.

Regarding the IBD. I found, (after many many years of discomfort and trying to avoid this food and that food) that my problems were related to my monthly cycle. In fact I was getting attacks almost exclusively in the week before my period. So now, I try to avoid alcohol and irritating foods during that week and have pretty much eliminated my attacks. Do make sure that you are not having hydrogenated vegetable oils in your diet (they appear in all sorts of processed foods..particularly baked goods) as research is becoming increasingly clear that they irritate your gut. You should avoid high fructose corn syrup too as it does the same thing.

Good luck. I found the doctors I visited (experts in both the uk and usa) very unhelpful.

[SofiaAmes]

whoops, sorry...that's Proctofoam.

[castille]

Sofia - me too, my UC is very closely linked to my cycle. Was much worse during pregnancy, better during breastfeeding and now comes and goes with my hormones.

Forgot to say that a multivitamin is good as your gut might not be absorbing all the nutrients from your food. I also take fish oils daily as they seem to help with the inflammation.

[SofiaAmes]

I have had all sorts of other problems related to my hormones (severe peri-menopausal symptoms) and after 3 years of visiting doctors on both sides of the atlantic, I finally got a hormone specialist who told me to go on the pill (low dose, monophasic) and that really seemed to sort out most of my problems including the irritable bowel. I highly recommend it!!!!

[castille]

Sofia - do you have IBD or IBS? Or both?

[Plonketyplonk]

I have colitis and had awful piles. It was very unpleasant! I had the piles injected and I don't think they've caused any problems since. It's hard to know what's what when it all hurts.

[alypaly]

Anusol Hc cream or suppositories are really good to shrink the piles

[SofiaAmes]

sorry, didn't quite get the difference...just read up on it. I have ibs, not ibd.

I have had the injections, anusol, suppositories and a dozen doctors inspecting my rear.....the only thing that works is Proctofoam.

[alypaly]

what is IBD as opposed to IBS, never seen IBD in initial form. I know IBS is irritable bowel

[castille]

IBD is Inflammatory Bowel Disease - it covers Ulcerative Colitis and Crohn's Disease.

[plus3]

castille - I've just been diagnosed with UC, are the fish oils good to reduce the inflammation or to booster your nutrients? I can't tolerate mesazine, so am only on colifoam, so would be interested in any nutrional benefit to reducing inflamation.

[AnAuntieNotAMum]

I've had IBD for all of my adult life - what sort of tips advice were you looking for, could write a book on it

My main advice would be sceptical if your consultant tells you that diet has no bearing on your condition. It's true that it's not the obvious perpetrator, such as in coeliac disease but I've never met anyone with IBD who can't alleviate (note alleviate, not cure) things with a diet that suits them.

Constipation is your enemy when you have IBD I would say, try and drink lots of water and have a little more fruit and veg but avoid high fibre at the times when it happens. Papaya and pineapple are apparently good fruits for the gut. Periods affect IBD probably because of the progesterone rising and falling. When progesterone is highest during the cycle constipation often occurs, when progersterone is lowest, the digestive tract is no longer slowed, but when you have IBD, your bowel has been irritated by the constipation so it inflames.

Things I have recently found useful:

Taking a probiotic that only contains only acidophilus and plantarum - (inspired by some research I read by Elaine Gottschall who wrote "breaking the vicious cycle)

Cutting out refined sugar as much as possible (difficult and boring but seems to be truly helpful, bad bacteria loves to thrive on sugar it would seem)

Eating soluble fibre but no insoluble fibre

If your colon is ulcerated, do take the prescription medicines but do watch your diet alongside. Be very very aware of the side effects (physical and mental) of steroids if you go on them.

There is new research that too much Omega 6 can cause inflammation so careful with the vegetable oils - an awful lot of food that is sold as healthy is made with sunflower oil that might not be good for us IBD types

In fact, healthy IBD eating can be quite counter intuitive to what you hear as the usual healthy advice, the only thing that seems to really go with current popular health culture is that omega3 fish oils are good.

New research is also showing vitamin D as important so try and get lots of sun

Don't worry too much about vits but have your B12 levels checked has B12 is often low in IBD people.

My bleeding gets worse with some dairy products but not all. Still trying to work out if it's the lactose, the casein or the whey that's getting to me.

I have mixed feelings about NACC (national association for colitis and crohns) but they have useful stuff, do join them.

Sorry, am rambling. Good luck. It's a bloody (literally) horrible disease . Although I've said a lot about diet, do try to not stress about diet as the worrying can also make you feel worse.

[AnAuntieNotAMum]

Hi Plus3 - sorry to hear you can't tolerate mesalazine, that's a pain.

There certainly seems to be a big pro fish oil lobby.

I'm not taking it but I eat a lot tinned sardines (tinned in olive oil, not sunflower oil) with bones hence trying to get the omega 3 and the calcium that the steroids have robbed me of.

Bromelain (found in pineapple)is said to be anti-inflammatory, I haven't taken a supplement but am eating a lot pineapple.

There's a website called www.nutritiondata.com that assigns an inflammatory factor to foods. Quite interesting, not sure what science it is based on.

[castille]

I started taking fish oils because I'd heard they were good for reducing inflammation. I get mine here

I have been taking them daily for nearly 10 years and don't dare stop because my case is a relatively mild one thus far - at least it has become so since the original, horrific flare-up was brought under control with steroids - and I don't want to tempt fate.

Lots of useful info there for all of us AnAuntie

[AnAuntieNotAMum]

Castille - that's interesting. What type do you take?

Oh, just remembered the other natural ingredient that is currently being said to be anti-inflammatory is Turmeric. I've taken to sprinkling it on most cooking. Will turn yellow soon...

[plus3]

AnAuntie..thanks for all that. I've been told that diet is not a factor, but prior to my diagnosis I had cut out gluten with good effect. During the next flare up (which I was unaware of) I started eating some gluten which seemed to make the colitis symtoms worse.

Castille have you had any more flare ups since your diagnosis? It's taking 3 months to get mine under control, and still not there yet although feeling better than I did.

[castille]

I usually take the standard fish oil capsules from Nature's Best, but have just bought their new ones with added plant something or other to try - will report back!

I tried Turmeric (in supplement form, I think you need vast quantities for a significant effect) but it didn't seem to make much difference to me. I was later told that it has little effect on the large bowel, it tends to work better further up the digestive system and for other inflammatory conditions. Not sure how true that is, worth exploring perhaps.

[castille]

plus 3 - no, nothing comparable, thankfully. I have had periods of complete respite (over 2 years after DS was born 3 years ago, which was lovely) and periods of more active symptoms (pregnancy, and times of severe stress) but I just take my meds and it calms down again.

After trying every other possible treatment, it took quite a high dose of steroids for a couple of months to sort it out the first time - and I was pregnant, it was horrid.

I hope you feel properly better soon.

[AnAuntieNotAMum]

plus3 - more sympathy from here for a flare that's not coming under control. I am pretty sure I'm not gluten intolerant but I did meet one women in her fifties who had been diagnosed as having UC for years and she had even had a negative blood test for coeliac. However, it turned out she was coeliac in the end and made a great recovery. It seems so individual. I'm certainly high/insoluble fibre intolerant though.

Have you looked at the specific carbohydrate diet/breaking the vicious cycle stuff?

Castille - interesting about turmeric. I do get the aching joints too which is often linked with colitis so guess I'll stick with ingesting it with my food...

[SofiaAmes]

Make sure that you religiously keep hydrogenated vegetable oils and high fructose corn syrup out of your diet. Guy in my dad's lab is doing research on both of those and has found them both to be majorly irritating to the gut.

[thirtypence]

Getting the pile banded made a huge difference to me - especially the whole mucus thing. I still have to watch what I eat but I no longer have some of the painful symptoms I had before.

[AttilaTheMeerkat]

SofiaAmes

Reading your particular comments I am actually wondering if you've had endometriosis all along. Some women with IBS actually have endometriosis instead. What you wrote with regards to your periods made me think of that. And yes it is very much underdiagnosed.

[AnAuntieNotAMum]

Attila - I often wonder if I have something going on gynae wise too but after all the invasive bowel investigations, can't face more invasive investigations!

Discussion of UC and periods here if anyone wants to join in:
www.ulcerativecolitis.org.uk/colitisforum/viewtopic.php?f=26&t=741

Sofia - interesting about the research. High fructose corn syrup is definitely a no no if you follow the scd diet. Just the sort of thing bad bacteria love to feed on.

I stopped with hydrogenated veg oils quite some years ago when I read about what they do to your arteries, lived off cuppa soup at uni and used to eat lots of dairy free baked goods cos of milk intolerance then realised they were indeed full off hyd veg oil. However, I have had bad IBD while off it altogether so it's not a major trigger in my case at least.

[SofiaAmes]

Thanks, attila, definitely not endometriosis....There are actually a variety of symptoms that are related to the level of estrogen in our bodies. And it's amazing how few doctors know or understand this. I spent years visiting doctors both in the usa and uk for a variety of issues including leaky bladder and ibs (plus tons of minor things). I finally saw a hormone specialist (actually funnily enough ended up seeing one in the usa right about the time my appointment in the uk came through after a year of waiting). They both agreed that the solution was going on the pill (to even out my production of estrogen) and it really did solve pretty much all my problems.