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Crohn's Disease Forum » General IBD Discussion » Crohn's, infliximab and cpps/interstitial cystitis/prostatitis


03-02-2017, 05:52 AM   #1
ga643
 
Join Date: Mar 2017
Crohn's, infliximab and cpps/interstitial cystitis/prostatitis

Hi,

Apologies for the intimate nature of my post but after having been practically abandoned by Drs I feel that the internet is my last resort (if this is too intimate i will edit/delete). Females may not wish to read on as it perhaps doesn't really apply and it might disgust you a bit! Also apologies for the explanation of medications that im sure many of you are aware of, I have posted this on other sites that need background information on the medication I was given. Im 31 and have been suffering from IBD for the last 10 years (chron, colitis and illietus) and this prostatitis/chronic pelvic pain syndrome/interstitial cystitis for the last year.

Im looking for some advice from sufferers of this condition. Unfortunately for the last year i have been suffering from a lot of testicle pain (a feeling just like being kicked in the balls) as well as pain around the waistband/bladder (a winding sort of feeling) and occasionally a sort of sore/stinging feeling in the creases where my legs join the pelvis.
This has been an extremely difficult time and have struggled to walk for the first 4-5 months, it is extremely distressing. Sometimes I feel a bit better but standing for around 10-15minutes or longer will bring on the winding pain. A brief background on myself, I have suffered from Crohn's and ulctrative colitis for the last 10 years which are diseases that effect that bowel and illieum, symptoms of this are frequent bowel movements and ulceration of the intestinal lining (much like a mouth ulcer but along the intestinal tract is how it was explained to me) Unfortunately I did not respond to the lesser treatment as my condition was deemed mild to severe and after the usual immunosuppressive and steroid treatment I was put on a drug called infliximab (or remicade which was the brand I was given) This is when my problems with cpps/prostatitis/epididymitis/interstitial cystitis started.

Infliximab is quite a powerful drug (industrial I believe is the word they use in my referral letters!) and its aim is to lower the immune response in the body as Crohn's/colitis is thought to be an autoimmune disease where the body attacks itself. While it worked extremely well for me unfortunately it would appear that it came at a cost and I have now developed this condition possibly as a result of this (but equally it could be coincidental) The drug is administered as an IV every 8 weeks and shortly after my first infusion I started to have minor problems like tonsillitis and athletes foot and other minor virus’ and infections which I had never experienced before.

My episode with cpps/epidiymitis/prostatitis/interstitial cystitis started with a mild pain in my testicle (right side) and developed into a much stronger pain. I visited my gp and was given a two week course of ciprofloxacin and an ultrasound a few weeks later, by this time my pain had almost gone and I felt back to normal. I have had epidiymitis previously and it went away after a few weeks. The ultrasound confirmed I was recovering from this and she said it was almost back to normal. I had about a week of feeling fine and went to have my 8 weekly infusion at the hospital of infliximab, that evening the pain returned in the same place and I have been struggling ever since. I was given a prescription for ofloxacin and completed 3 weeks of that but the pain remained. I was referred to a urologist who I have drastically lost faith in, initially I felt he was competent and he explained my problem to me in a way that i could understand but was surprised that when i returned in 4 weeks that i was still in a lot of pain and having problems walking. He ordered a cystoscopy and hydrodistention in addition to an mri and diagnosed interstitial cystitis as he said my bladder at first appeared normal but was inflamed when stretched. I have had no problems with urinary frequency or urgency. This was the route he decided to take and advised me to have bladder instillations, how this will help the pain in my testicles I do not know but i was so desperate I went along with it. The nurse tried to catheterize me but it was far too painful due to the inflammation and said she would not forcibly restrain someone for it. He now says there is nothing more he can do and has referred me to some specialist of which there is an 8 month waiting list. I paid to see the specialist privately as I was in such discomfort and he seemed baffled as to why I had been diagnosed with interstitial cystitis if I was not complaining of any urinary problems. His advice was that this is not interstitial cystitis and referred me to two other Drs, a specialist testicle dr and an immunologist.
So here I am at the moment feeling very let down by the nhs and in a lot of pain some days (luckily I have a pain medication prescription for my Crohn's/colitis otherwise I would not have been offered any pain relief at all) But they don’t really work for the kicked in the balls type of pain I frequently get. If you have read this far I would like to thank you very much and if you can offer any input on my situation it would be greatly appreciated, I hate using the internet for medical issues as it is usually a minefield but I really feel I have no other option at this point. I have stopped the inflixmab infusions now but still take an oral immunosuppressant (azathioprine 50mg) as well as other Crohn's medication (mesalazine).

I have read ‘headache in the pelvis’ and do an hours worth of stretching/physio a day as my GP believes it is prostatitis (non bacterial due to the antibiotics having little effect also my bladder shows no sign of infection) My diet is already quite strict due to Crohn's but recently I have cut out sugar as well as there seems to be some theory behind prostatitis being related to candida/fungal. My questions are can excessive straining when going to the bathroom/frequent bowel movements cause this? Does anyone believe the fungal infection of the prostate theory(I have read several articles on the effect infliximab can have on fungal infections)? Should I ask for a urine/semen/prostatic fluid test (I have not had any)? I have had a prostate exam where he said it was very inflamed.

Thanks for reading and anyone who has experienced anything similar I would GREATLY appreciate your input.
03-04-2017, 08:09 PM   #2
Lady Organic
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Hi and welcome. I am sorry for your issues. when did you stop remicade? I am hoping your urinary and prostate issues will stop and were side effects of remicade.
I am hoping you will see the new urologist doctor soon.
Did you gp prescribed something for prostatitis? A lot of men take this medication as prostatitis is is highly common in aging men. You are younger, but if your dr proposes it, it must be possible even at your age.
Wishing you well!
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03-06-2017, 05:15 AM   #3
ga643
 
Join Date: Mar 2017
Thanks for your kind words,

I stopped remicade around august last year after my fifth infusion. I was hoping they were side effects too but they do not seem to be leaving, my gastro consultant says the two are not linked despite the timing of the prostatitis/ic/cpps developing.
Im not holding out much hope that the new urologist will say anything different they all seem to just shrug their shoulders and say come back in 6 months or palm me off to another dr (took them ten years to diagnose my Crohn's +colitis saying that it was anxiety/stress etc) I was given the usual treatment of antibiotics for prostatitis but they did not relieve any symptoms.

Im really shocked that there is a condition like this which is so debilitating (in my case far more than my Crohn's and colitis and a hundred times more painful) and none of these drs seemed to be bothered about it at all, very frustrating.
03-06-2017, 09:03 AM   #4
Lady Organic
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do you have difficulty with urination? urges to go or feeling of bladder not being empty when you go? I was thinking of benign prostatic hyperplasia which is very common in men... I also had a boyfriend who developped chronic discomfort with bladder after an episode of acute prostatitis (treated with antibiotics) 2 years before. But no pain in testies for him along with the urination trouble.
03-07-2017, 08:07 AM   #5
ga643
 
Join Date: Mar 2017
No problems with urination, if anything i was able to hold more water after the hydrodistension, that is why the second urologist disagreed with the diagnosis of interstitial cystitis.

I have had mri's and dre's and this has not been mentioned in either, everything looks normal apparently 'sometimes pain is just pain' is what i was told and this is probably referred pain from the bladder. I do also get bladder pain, its just a continual pain 24 hours day that never lets up really it is making like very miserable. Sometimes I get very sharp shooting pains but they only last 30 seconds to a minute

Prostatitis appears to be a catch all diagnosis for any pain down there regardless of whether an infection is found or not which is why i was curious to gain any information on the link between infliximab/immunocomprimised patients and fungal infections/overgrowth as they can mimic the symptoms of a bacterial infection but not look the same under cystoscopy (from my basic understanding at least)

Anyway thanks for the help, ill try looking elsewhere.
06-22-2017, 05:06 AM   #6
kenvh
 
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Hi ga643
sorry about having a hard time. I can relate 100% since i also got IC interstitial cystitis.
Its pressure on the bladder, burning and more i know. Hydrodistention made my bladder also more lose for a few months.

since we both got crohn and IC... I am curious how its going for u?
does the azathioprine work for u? doesnt it hurt ur bladder? or is it OK for the bladder?


No problems with urination, if anything i was able to hold more water after the hydrodistension, that is why the second urologist disagreed with the diagnosis of interstitial cystitis.

I have had mri's and dre's and this has not been mentioned in either, everything looks normal apparently 'sometimes pain is just pain' is what i was told and this is probably referred pain from the bladder. I do also get bladder pain, its just a continual pain 24 hours day that never lets up really it is making like very miserable. Sometimes I get very sharp shooting pains but they only last 30 seconds to a minute

Prostatitis appears to be a catch all diagnosis for any pain down there regardless of whether an infection is found or not which is why i was curious to gain any information on the link between infliximab/immunocomprimised patients and fungal infections/overgrowth as they can mimic the symptoms of a bacterial infection but not look the same under cystoscopy (from my basic understanding at least)

Anyway thanks for the help, ill try looking elsewhere.
06-22-2017, 06:53 AM   #7
Ozboz
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Have you tried some complementary stuff blackseed oil is meant to be the go for most of this stuff google blackseed oil and see what you think also mangosteen is a good one.

If you can afford it try acupuncture or maybe see a chinese medicine professional apparently the have lot's of treatments for things like this. Or even try a naturopath you never know I use medicine in combination with other therapies I don't want to hang poop on the medical profession and very grateful it exists but modern medicine doesn't have all the answers.
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