Meds?

[Echium]

As a follow up to my last post, I was wondering if treatments used for Chrons/IBD can help people with PRD - anti- inflammatory drugs for example?

Who can I ask?

Thanks,

Kathy

[Lyubov]

I'm also interested in the answer to your question. My husband has bladder/uro radiation damage from pelvic RT for a prostate cancer recurrence after radical prostatectomy. He now has terrible bowel issues that sound like your IBD & hasn't been able to get an urgent appointment with gastro (not til March). He is miserable & I don't know how to help him.!

[Echium in reply to Lyubov]

So sorry your husband has to wait so long. Do you have a late effects clinic near you? Might not be quicker though. I have been digging a lot online and can find info on the symptoms of PRD and patient stories and tests for BAM and SIBL etc but can’t find much on available treatments if nothing is identified and advice for coping. I have been thinking I will just stop eating!

Can PRDA reply with any medical advice please? Or have any members been through all this? Some hope would be appreciated!

Kathy

[Lyubov in reply to Echium]

Thank you for replying. We're in the U.S. & don't have the kind of facilities you mention. Our family doctor (GP, general physician) sent "Urgent" referral to gastroentorologist group in our area. They claim to be completely booked up until March; but maybe will have a cancellation sooner & take him in. I believe he needs tests, not only colonoscopy but probably MRI, endoscopy, etc., to determine where & how much damage the radiation did. The treatments were in 2016 but these horrible side effects developed over time as the damage obviously did not heal.

[Vailgirl in reply to Lyubov]

I also live in the US and went thru treatment for anal cancer in 2006. My problems started 3 years later. I have not been able to get any answers anywhere. What I do know is that I cannot eat fiber which will cause extreme gas, bloating, blockages. I can only eat 2.5 grams at a time. And still I have fecal incontinence and often poop in my pants due to the now slippery slope of my lower bowels. I think we are all a little different but you might try limiting fiber, no coffee, chocolate, avoid hot drinks with meals, do not go for walks after eating. I also can't do gluten, dairy (most cheese is ok). Keep track of symptoms and a food log so you can discover what works for you.

Namaste,

Nova

[Lyubov in reply to Vailgirl]

So sorry for all you're dealing with. It's my husband who has radiation damage from IMRT treatments to pelvic area for a recurrence of prostate cancer (after radical prostatectomy). He's has hemorrhagic radiation cystitis & I think the lower bowel likely also was damaged. But he did cut out dairy products & reduced high fiber intake, which has helped. He's supposed to get hyperbaric oxygen therapy for the radiation cystitis, so maybe it'll help the bowel as well. As you know, it's quite a challenge to deal with these delayed "side-effects." Take care & Happy New Year.

[Ohthistoo in reply to Vailgirl]

I'm the same. A no fibre diet has helped me immensely.

[Romian]

Hi, I had radiation 3 years ago in the USA for anal cancer. That caused severe burns, bleeding and proctitis. I had 60 oxygen treatments in a hyperbaric chamber. It helped a lot for the bleeding, not the diarhea. After a lot of research I found on my own that what you eat is the most important for stopping the diarhea. Fiber: nothing with more than 1 gr for a 100 gr of food, no raw veggies, Also very little fat, no frying, no grains and dry fruit. No coffee or tea, no hot drinks. I eat a lot of cheese and yogurt without a problem. Following this I have no diarhea and I am almost normal. Acidic foods burn my anus like hell. Hope this helps.

[Cervicalsurvivor]

Hi Kathy I am also a liver specialist, I asked this of the lead gastroenterologist I work with as we don't have late effects clinic in the North east. He said no as it is not auto immune related and this must be shown from the colonoscopy however my biopsies did have chronic active inflammation throughout the whole pf my large bowel which responds to Octasa so I have managed to be put onto this it has reduced the swelling of my stomach and a some of the pain.

If you have had this done request your gastro consultant to try this if your biopsy confirm chronic active inflammation.

There are no trials or studies to prove or disprove this helps as PRD is not a money maker 😉 therefore no drug companies will help as such.

Let me know how you get on

Sharon

[Vailgirl in reply to Cervicalsurvivor]

Id rather control this by food. Herecareca list of side effects of Octasa

Diarrhoea.

Nausea and vomiting.

Abdominal pain or bloating.

Excess gas in the stomach and intestines (flatulence).

Headache.

Dizziness.

Inflammation around the heart. Tell your doctor if you experience chest pains or palpitations.

Decrease in the normal numbers of blood cells in the blood - see the warning section above for symptoms to look out for.

Allergic skin rashes.

Worsening of colitis symptoms.

Pain in the muscles or joints.

Hair loss.

Inflammation of the pancreas (pancreatitis).

Inflammation of the liver (hepatitis).

Kidney problems, such as inflammation of the kidneys or kidney failure.

Lung problems, such as shortness of breath, cough or breathing difficulties.

The side effects listed above may not include all of the side effects reported by the medicine's manufacturer.

And if you have decreased kidney function which many of us do after radiation and chemo isnis cintraindicated

[Cervicalsurvivor in reply to Vailgirl]

I'm 18 years post treatment. When you get to the point where you can't eat any food at all and have tried all the elimination of foods using fodmap and beige foods, and every other idea I have blitzed my food to make it more alkaline and ate organic etc

If there was a way around the pain and shitting myself I would have taken it.

I'm at the end of my tether trying all other routes. Nothing works,

but if the drugs make things more bearable or give me time to carry on rather than being in bed and sick from work! I will take them.

I'm not saying it's the best option I am loosing hair but hair loss from B12 deficiency also as I am now on shots for that.

I really hope and pray others do not get the side effects I suffer but I know there are people like me on this page. Who like me have tried all sorts.

I am well aware of the side effects working as a specialist in gastroenterology my patients with ulcerative colitis and crohns take these medications and would be a hypocrite if I said this isn't good enough for me.

I wish you health above all and I was inly offering ideas of support this is what I do it isn't for everyone but it's all about sharing experience.

Please let me know how you get on

Sharon

[Vailgirl]

Yes, of course. thank you. I'm also 17 years out and still poop in my pants at times, still get blockages and then have four days in bed. I'm fortunate that I work for myself but I understand that others don't have that luxury. Like you, I was just sharing information about the side effects so people can make their own and informed decisions on what is best for them. I'm sorry if I offended you. No intention there - just to pass along info. The food choices work most of the time for me but if I make a boo boo or sometimes just because, I have issues. I wish you good health and healing, Vail Girl