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immunosuppressants and UTIs

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Posted 3/8/2017 11:21 PM (GMT 0)
i cant remember if i asked everyone about this way back when i started having this pain. Is it harder to get rid of a UTI when on immunosuppressants? it looks now like this discomfort is a bladder infection even though it didn't show up in previous tests. if thats right then its been going on since last july/august!
Posted 3/9/2017 3:33 AM (GMT 0)
Oh my Gosh!!!!!

That's such a long time!!!!

If the infection is bacterial in nature then yes.... Absolutely.

Personally...I believe they muffle your entire immune system and it is harder for us to recover. (I have had this chest cold since January.sigh...shake head)

Hope you feel better soon!
Clo
Posted 3/9/2017 9:12 AM (GMT 0)
Oh, Lab. So sorry that you have been suffering. Did you have a bacterial culture? I used to have recurrent UTI infections a couple of years ago. I can't recall whether I was on Imuran then or not. But I remember because of the high frequency of recurrence each year, my GI had me have a bacterial culture and accordingly he put me on the appropriate antibiotic.

Hope you get better soon :/
Posted 3/9/2017 9:40 AM (GMT 0)
It's hard to know whether it's the Crohn's itself or the meds which is suppressing our immune system (although adding immunesupressants into the mix can't exactly help). I know last winter I wasn't on anything at the time, but I had a terrible two months with a cold that wouldn't go away, cold sore after cold sore, and uveitis. Mind, I'd still take that over shingles every. single. time.

In a nutshell, it's likely immunesuppressants are making it harder for your body to clear the infection, yes.
Posted 3/9/2017 10:02 AM (GMT 0)
Yes, it can. Please get another urinalysis and make sure they do cultures. If nothing grows, there are a couple of things it could be:
1) inflammation from the Crohn's putting pressure on the bladder
2) Interstitial cystitis, which is a bit like IBD of the bladder, although it can be caused by other things.
http://www.webmd.com/urinary-incontinence-oab/interstitial-cystitis?page=2

Just a few weeks ago, my friend with lupus texted me to cancel an appointment because she had a bad bladder infection. But she had fever and chills with it, which isn't normal for a UTI unless it's in the kidneys. I urged her to go to urgent care, and they kind of blew her off. Two days later, she was septic. She's now on her 6th week of IV antibiotics and still doesn't have an end in sight for stopping them. I had the same thing happen a few years ago, a regular untreated UTI got into my kidneys and I had to be admitted to the hospital. Being immunosuppressed definitely does cause problems with any infection, including UTIs.

Not trying to scare you - if it were in your kidneys, you'd know! But more just wanting to make sure you figure out what it is in case it's that.
Posted 3/10/2017 6:08 PM (GMT 0)
Thank you all!
Its 99.9% not crohns related. All of my Doctors were blaming it on crohns especially because it had been active there but I had a colonoscopy last week (third one since last summer) and it came back completely free of active disease (biopsies too)! the GI said that basically the only evidence i have had it is that there is a slight scar in one area but even the stricture is gone (did not return after the dilation) and they biopsied every spot that had previously been a problem, which is pretty amazing. The GI said that it could be adhesions irritating my bladder and I was willing to go along with that but the type of pain did not make sense to me. The next day I got a call from my GYN's nurse asking me in a rather gruff manor if I knew I had a badder infection-_- I was like well i guess that would explain the pain i was complaining about to everyone who would listen for the last 6 to 7 months. She couldn't figure out why it took them over a week or more to get in touch with me about the results. I had had a urinalysis at least two or three times since this started bothering me last august and nothing was found, but the symptoms were very much UTI symptoms. I started antibiotics but I cant take cipro so hopefully the bacterium works. I still have the discomfort so I guess we shall see. I believe they cultured it but Im not sure.

@clo: Agh you still are stuck with that chest cold? i hope it clears up soon!

@scifigal: thanks for the info! yes, I guess I just have to stay with it. Back in September my PCP had recommended i see a urologist but she was incredibly hard to get appointments (several months) with and they always ended up being when i had something more emergent going on and i would have to cancel.
Posted 3/10/2017 7:16 PM (GMT 0)
Yay, glad they finally got it figured out! And you're very lucky it didn't get a lot worse. Is it possible you have a small bowel-to-bladder fistula?
Posted 3/11/2017 3:43 PM (GMT 0)
I just came across this topic and I see you have already sorted it out. Good for you! For anybody else who might be reading this and wonder about UTI's and immunosuppressants I would like to share my own experiences to serve as a warning:

Last November I was on 100mg of 6mp and 10mg of prednisone. Apart from some minor bladder irritation over the course of a couple of weeks I had no UTI issues. I have had multiple bladder infections in the past, so I would recognise the symptoms if I had one. No trouble peeing this time, no pain, nothing. Then I suddenly got ill. At first I figured it was the flu, but it did not seem to pass. I had regular bloodtests at the time, for the 6mp and my CRP (which is always elevated) was only slightly higher than normal, around 30. Nobody thought I had anything to worry about. But then I suddenly developed a sharp pain on the right side, which responded to paracetamol by the way, deep inside my body. Long story short: over the course of a week my pain got worse and worse so eventually my GI decided she wanted to see mee asap. Went in the same day and she looked at me and decided to immediately send me to the ER. My urine was tested and it was positive for UTI, with a CRP of 117 (literally developed over night) and a resting heartrate of 140bpm I was given iv fluids and iv antibiotics and then.... sent home with a 7 day antibiotics prescription for cipro.

Finished the antibiotics course and felt better. Although I never completely recovered. Went to my GP: no bacteria left in my urine, still a little blood however. But CRP dropped to 20, so everybody assumed it was just the aftermath of a nasty case of pyelonephritis and a beginning urosepsis. A week and a half later I saw my GI and she recommended I got another urine test, just to be safe. This visit was on a Friday and I agreed to go to my GP on Monday. Never made it because on Sunday I got a lot worse. I was rushed to the ER, again with a heart rate of 145 bpm, a slight fever and a lot of pain. Urine tested positive for UTI albeit not as heavily as before. Got iv fluids, iv antibiotics and was admitted. They admitted me to the wrong department however, where the resident GI decided it could be appendicitis or Crohn's flaring. They wanted to do an MRI before anything else. So I basically just laid there for two days, without receiving any antibiotics. On the third day I was peeing blood. I insisted on a new urinalysis and it was a good thing I did, because the results were not good. I had a CT scan to check for kidneystones (neg) and had to wait until the next morning to start antibiotics. The urologist and the GI disagreed about the type of antibiotics, but they decided on a pill form: trimethoprim. I was send home the same day.

Of course this turned out to be too little too late as the next evening I got so sick I was again admitted through ER. Uroseptic, with a dangerously low blood pressure and an extremely high heart rate. This time I ended up in the right department, with a katheter, a constant iv with fluids and continuous antibiotics iv. They also upped my prednisone. It took more than a week in the hospital to get it under control. And than I also got a c diff infection. It was a total nightmare and it has taken me a very long time to recover.

I am 100% sure that the fact I was on immunosuppressants played a major role in things getting so out of control. Apart from the failing doctors that is. I am seeing a urologist in two weeks to further discuss this topic, but please let my story be a lesson to always trust your own instincts when it comes to your health and to keep emphasizing the fact that you use immunosuppressants, which may cause you to need more antibiotics than an average person to conquer an infection.

Hope this helps someone.
Posted 3/11/2017 4:22 PM (GMT 0)
@scifigal: Thanks! I am hoping if it was a fistula it would have showed up during the colonoscopy and otherwise the only symptom I have is pain so I'm not totally sure. Its been three days and I still have the pain. Just hoping it goes away...eventually.

@Nikki835: Thank you for sharing! That sounds like a total nightmare! I'm a little concerned that this isn't going to be easy for me to get rid of because its been going on for so many months. Its terrible how easy it is to get written off as okay when you are definitely not okay! I was so close to giving up on this pain and just living with it which would have been a big mistake.
Posted 3/14/2017 4:52 PM (GMT 0)
I'm not sure what to do now. The antibiotic is finished tomorrow and while the pain has been reduced a bit I am now having really nasty intense cramps since yesterday. They aren't GI cramps though. I am so confused! My doctors offices are all closed sad
Posted 3/14/2017 7:13 PM (GMT 0)
It might be worth it to go to urgent care and have them do a urinalysis there.
Posted 3/15/2017 2:17 AM (GMT 0)
Lab,

Do they have an emergency contact person?

Where are the cramps at? ( If you don't mind my asking?)

This lingering pain would have me concerned. Not ER concerned ( unless the pain was really bad) but you gotta find out what is causing this concerned...

Clo
Posted 3/15/2017 6:40 AM (GMT 0)
I had a UTI that went septic. When I had to pee I would get terrible cramps. They were as bad as the worst of cramps from the Crohn's. I was admitted to the hospital and was put on IV antibiotics. That cleared it up.
Posted 3/16/2017 2:17 AM (GMT 0)
Lab,

How are you?

Clo
Posted 3/16/2017 4:29 AM (GMT 0)
Hi Clo,
Thanks for asking, I'm doing okay. Still not sure what is going on. I called to speak to the nurse who had given me the Rx for the antibiotics and she told me to make an appointment with the GYN for Monday. I'm not sure how that's going to go because he was confident there was nothing wrong with me and that it was all crohn's related. That doesn't seem plausible at this point given that i'm in remission unless adhesions could really cause all of this? I don't know but at least i have proof now it isn't a GI problem. The cramps lasted about two days. they were strange, seemed like they were coming from the urinary tract, similar to period cramps and some of the nasty ones I've gotten with crohn's flares but in the wrong place. the cramps did come at the end of my period which seems to bother the whole thing each month and isn't exactly normal either but i was attributing that to blood thinners. I wanted to make an appointment with the Urologist that my pcp had recommended a few months back but the next available one is the end of April. I took it but hopefully I will get answers before that.
Posted 3/20/2017 10:22 PM (GMT 0)
UPdate

Hi all,
Thrown for another loop. I went back to my GYN today. He is pretty concerned because the type of UTI I have is rather rare, can be serious, and is basically never seen in people my age. (Wondering if I picked it up from the hospital or the nursing home where my mother was getting physical therapy last year when my symptoms started)
I also have blood in my urine now. I have an appointment with a urologist for later this week. I'm hoping that the antibiotic at least cleared up the infection but given the pain I'm in it's rather doubtful which is worrying because it was supposed to be effective for that type of infection.
Posted 3/20/2017 11:42 PM (GMT 0)
Oh no! I'm so sorry. But at least you have the appointment with the urologist in a timely manner.
Posted 3/21/2017 2:27 AM (GMT 0)
Lab,

I am so sorry you are going thru this.

Is this a bacterial infection? How are your numbers?

Why didn't the GI tell you about the type of infection sooner? Did they discuss IV antibiotics vs. pill form? Do they want you to stay on your current Remicade schedule or do they want you to hold off because of the infection?

My doctors have told me that if I get an infection I need to be in the hospital on IV antibiotics. My internalist is really concerned about Crohns and the ability to absorb the antibiotics thru the intestines. I don't know if that really makes a difference or not. I just know they're still checking me regarding that chest cold even though I am almost over it. (But I have had it since January...) They just watched me carefully prior to and after my Remicade infusions. Personally....I think I felt worse after taking the weekly methotrexate.....

You are in my thoughts and prayers.

Please let us know how you are doing.

(((Hugs)))

Clo
Posted 3/21/2017 5:39 AM (GMT 0)
Thanks guys, I'm just so tired of this. I thought I could finally work on trying to put my life back together but looks like I have another road block to get past. Thanks all In advance for reading this...

Yes its a bacterial infection but not e coli which is apparently what the vast majority of UTIs are caused by. My GI tested me last July when i first started complaining of this but the culture came back negative so he had me stop the antibiotics so i didn't mess up the crohns with it needlessly. My pcp tested it as well and it came back negative early last fall. I have been complaining of all of these aches and pains and random issues since about the same time that the UTI symptoms started. They come and go though which was confusing to both me and my Drs. My GI never really doubted I had something else going on but none of them could figure out what and after the GYN said everything was okay a few weeks ago and the Colonoscopy and blood work came back okay the GI summed it up to scar tissue/adhesions. the PCP wanted me to go to a Urologist last year but it takes at least 2 months to get an appointment and that appointment happened when I was hospitalized for other issues in the fall so I missed it. Because it would come and go I thought seemed more tied to other things like a GI or GYN issue I followed up with both of them (the PCP also changed her opinion as to what she thought it was) . really i don't know why the GYN's nurse didn't tell me over the phone how serious the infection was, she acted like i was supposed to already know I had an infection and she couldn't figure out why they waited two weeks from when they got the results to let me know. I only found out today after I didn't get better and went back to ask that this seems like it could be worse than i originally thought. I had an appointment scheduled for the end of April with the Urologist the PCP suggested but couldn't get anything sooner. I now have one scheduled with a doctor thats affiliated with a hospital I deeply dislike because of bad experiences Ive had there. (Doctors are usually good but lack bedside manor and in my opinion/experiences things often get overlooked and mistakes are made because it is a high volume hospital)Im hoping that this doesn't turn into something i need hospitalization for because I know these doctors will not work with my other ones. They are from competing hospitals. My GYN wont even contact my GI. Its what I hate about my former doctors, lack of communication. the new ones all know each other and see each other regularly and discuss my status. The GYN is the only one I've kept and is doing better at finding the cause but doesn't communicate and I then have to do it.

I haven't discussed this with my GI yet so I don't know if this will bother my remicade schedule. I'm waiting to see the urologist and see how the next set of cultures comes back. I spoke to him about a week ago and told him what happened and asked about the antibiotic and he didn't see anything wrong with me taking it. So far I don't have any fever so that might be why the GI is not too worried yet. Also my GI tract is well healed so I seem to be absorbing well.
Posted 3/21/2017 9:49 PM (GMT 0)
Lab,

Hang in there and let us know how it goes.

I think many of us are like you in that we get used to pain or discomfort and hesitate to make a big deal out of it because we have already gone thru so much and this doesn't hurt thaaat bad, or because we don't want to rock the boat and surely our doctors would let us know if something were wrong-if it had the potential to become bad......

The people on here....we care, we share, and we have all become educated about our diseases and other illnesses that impact us. We are research hounds.....Lol... So if you need anything researched or just anything.....let us know.

You are in my thoughts.

Clo
Posted 3/24/2017 1:11 AM (GMT 0)
Thanks clo, it means so much!
I went to the urologist today as mentioned before I have not had positive experiences with over arching medical group he is apart of. The staff was nice and the doctor was as well but he was extremely fast and rushed. Did not give me anytime to ask questions and did not explain anything. He's response was its probably muscle related. He did not even take a repeat urine culture to see if I still had a uti which my GYN expected they would. Also did not address why after never having a UTI I got one that usually only happens to elderly patients in long term care facilities. my GYN seemed so concerned about this with my medications and history. The urologist didn't give me a chance to ask. He told me to go to physical therapy for it and come back if I still have problems. I looked up what "physical therapy" entails and nearly vomited. Curious if anyone here has gone through physical therapy for "pelvic dysfunction" and if it's as terrible as it sounds? I think I'd rather deal with the pain and discomfort than go through that. Looking this up, I don't have most of the symptoms ie- running to the bathroom. Just pain. Really confused and sad. If that's all it is I would learn to live with it but I'm concerned it's actually an infection still lurking. I called my pcp and it was too late for me to see her but they had me come in to do another urine culture so at least I will know. I am terrible at giving urine samples so hopefully this one is okay. Did find out that she also called on a perscription for cipro which I get tendinitis from so I will have to wait for Monday to find out what to do. Thanks all for listening smile
Posted 3/24/2017 3:24 AM (GMT 0)
Oh Lab,

I am so sorry that doctor visit turned out like that. Maybe if you call his nurse back she can discuss your case with the doctor to ensure everything possible is being done???

I had one that rushed out on me so I called the nurse and discussed some things with her...then I called in a few more times stating there were still issues and they worked me back in. The next time I had my list with me, started discussing it...he butted in and told me everything would be fine AND he apatted me on the head (like a darn dog) and rushed out the door....so I just sat there. His nurse came in and said the doctor is finished here. I just smiled and said no I think you are mistaken. The doctor visit is over once he has addressed my health concerns. I guess he just forgot...these questions still haven't been answered...Don't worry...I will just wait right here until he gets the time to come back. Smile sweetly while gritting my teeth. LOL....omg Lab you should have seen her face... Of course I was scared they were calling security.
But he come back in and things went better...

Personally I would follow thru with my pcp, have my tests ran and see if there were anyone else I could see. I too would be concerned about that infection. Nothing to play around with. My sister is healthy and she got an infection...6 months later she is still dealing with it.

Also...just an FYI...doctors can bill by the office visit time they spent with you. I always ask so I know how much time we have. (Not with my GI team but with new doctors I go to. I tried a pcp....she billed for a 45 minute visit and only spent 10 minutes with me. I reported her to the insurance company and Cc'd her. She changed it.... She was worthless....) I sometimes feel like the insurance police. I need a badge!

I don't know about the physical therapy. Surely someone will come along.

Hang in there,

Clo
Posted 3/27/2017 4:27 AM (GMT 0)
Hahaha! I wish I could have seen that Clo! Would have loved to have done that! I always get too nervous and only realize when I'm walking out or after I've left that something was missed or unanswered. Thats why I like about the majority of the rest of my team, they always give me time to let what they say settle in.
Even the nurse said something like: oh we must hurry with the ultrasound to see if my bladder was emptying because Dr.X is very fast.
Good to know about the insurance! I've rarely had this problem since switching to doctors affiliated with a different hospital so it was quite a good reminder of what I disliked about the old bunch.
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