Do anyone else not have fever with infections?

[Earnellzwifey]

Hi all,

I am currently on Remicade for past year and I have had a problem with chronic UTI's for several years. For the past few months I have been battling a pretty severe UTI that will not go away no matter what they do. I have been hospitalized twice for IV antibiotics and it still returns with a vengeance. My urinalysis shows a severe infection but my blood work never shows a elevated white blood count and I never have a fever over 99.9.

I am suppose to self cath 4 times a day but it is to painful. I am currently on antibiotics, again, but the symptoms keep getting worse. Sorry this may be a little gross, but my urine is brownish red no matter how much water I drink and it smells worse than my bowel movements.:stinks:

I am drinking nothing but water and I take cranberry tablets twice a day.

I am so weak that I actually sleep for 28 hours the other day and I currently sleep 18 hours a day. I have a severe migraine that nothing helps and the lower abdominal pain makes child birth seem like a walk in the park. My kidneys hurt also. I know that it has infected them as well.

The Dr.s are not taking me serious because I do not have a elevated WBC or fever.

Does anyone else have this problem, especially those that are on Biologicals like Remicade?

 

[rkoll327]

I am so sorry to hear you are going through this! When I was at college in Philadelphia, I spoke to my doctor on the phone after switching from Remicade to Humira about something similar. I was experiencing some sort of strange infection, similar to strep throat. I went to the health center and I tested negative for strep, and did not have a fever so they wouldn't do anything for me. They told me to take ibuprofen and it would probably go away on it's own. I knew I had an infection though because I could barely swallow my throat was so swollen, and my body was achey. When I called my doctor here he told me to go to the emergency room ASAP and tell them about my Crohn's and the medication I was on. Now he explained it to me this way, and I don't know how true this is but it is worth a discussion with your doctor, drugs like Remicade are immunosuppressants. For a normal person when the body gets an infection their immune system responds to attacking the problem and alerting you there is one with such things as fevers, chills and aches. Because we are one drugs that weaken/limit the function of our immune system our body can't respond in such ways. So maybe it is something like that? That because your immune system is so weak you cannot produce a high fever? I would talk to your doctor and see if there is any merit behind a theory like that. Hope it helps!

 

[Earnellzwifey]

Thanks rkoll327 that is similar to what I was thinking but I have not been able to find any information on it. That would make since to me if our immune system is reduced. I also just got off of a 6 month run of prednisone and recently had 1000 mg pred infusions for a week following a flare up after my hysterectomy.

I just hope the antibiotics start working soon. I will give my urologist a call tomorrow if I am still in the same amount of pain.

 

[Ihurt]

Hey Earnellzwifey,

I cam relate to what you are dealing with. I also get chronic UTI's, I have one now. I also have IC interstitial cystitis which is a very painful bladder disease. My bladder pain can be so severe that I get suicidal from it, so I know.

When I have a UTI, my urinalysis does not always show it. I had a UTI 5 years ago that lasted for over 6 months! I know they have treated you with IV antibitoics. Have they given you any oral anti-B's that you take low dose daily? I had to be put on keflex for over 5 years daily low dose. It helped me greatly, but I got a UTI now from having that MRE of my small bowel. I had to drink contrast for this test and it gave me awful diarrhea that caused a nasty UTI. The keflex is not working so now they have me on augmentin. That is really upsetting my gut though. I have been battling this UTI since October already.

The bad thing is that you have to cath all the time. I am guessing you have to do this beuase you have urine retention?? I use to have to do bladder instillatiions where I had to put meds in my bladder via a catheter. It helped me with my bladder pain and inflammation. BUt the down side is that the cathing can cause bacteria to colonize in the bladder and cause UTI's. Ughh, it sucks. BUt No, I have NEVER had a fever when I had UTI's. I do get the chills though. None of my blood work ever was abnormal either when I was in the worst UTI I had back years ago. But I was sick, I was like you, really tired and fatigued and not feeling well at all. I also get the kidney pain too with my infections. Have they ran a urine culture yet? what bacteria are you fighting? I know for me sometimes the culture will not even pick up my infections. Sometimes I have to leave like 5 to 10 cultures before they pick it up.

I feel so bad for you, I do. I mean for me, the pain in my bladder makes me want to die literally. The pain is so bad. I feel for ya.

Hi all,

I am currently on Remicade for past year and I have had a problem with chronic UTI's for several years. For the past few months I have been battling a pretty severe UTI that will not go away no matter what they do. I have been hospitalized twice for IV antibiotics and it still returns with a vengeance. My urinalysis shows a severe infection but my blood work never shows a elevated white blood count and I never have a fever over 99.9.

I am suppose to self cath 4 times a day but it is to painful. I am currently on antibiotics, again, but the symptoms keep getting worse. Sorry this may be a little gross, but my urine is brownish red no matter how much water I drink and it smells worse than my bowel movements.:stinks:

I am drinking nothing but water and I take cranberry tablets twice a day.

I am so weak that I actually sleep for 28 hours the other day and I currently sleep 18 hours a day. I have a severe migraine that nothing helps and the lower abdominal pain makes child birth seem like a walk in the park. My kidneys hurt also. I know that it has infected them as well.

The Dr.s are not taking me serious because I do not have a elevated WBC or fever.

Does anyone else have this problem, especially those that are on Biologicals like Remicade?

 

[Ihurt]

Oh I also had a severe UTI at one point, but no WBC's could be found in my culture! Go figure. I think everyone is different. If your kidneys really start hurting you need to get some help. You do not want to have it go to your kidneys as then you run a chance of it going sepsis. I hate doctors who do not take it seriously( they are usually men doctors too!), Sorry not to be disciminitive, but I have not met any male docs who get what it is really like to battle painful UTI's since they do not get them usually like women do! But you do NOT have to have a fever to have a nasty UTI, that I know first hand. I even get pieces of stuff in my urine when I have a UTI and my urine smells different. The pieces look like skin or slime. Ughh, no fun.

 

[Gabi]

Hi
I've almost been diagnosed with CD my GI said he just cant seem to catch it! But tonight I've taken a really bad fever, does this mean there are complications? An how do you know when its time to go to a+e because Im always sick and in a lot of pain

scared and lonely

Hiatus hernia too
under going tests for CD

 

[Shay-dee]

Please ask your doc for an MRI... you could have a small fistula joining your intestines to your bladder... sounds to me like there could be fecal matter in your bladder... which would cause UTI and the smell... And it is true that the immunosuppressants are perventing your body to fight the infection. Have you tried antibiotics like Cipro... it's strong and it works. Good luck to you.

 

[Crohn's Mom]

I was just about to post the same thing as Shay-dee

Ihurt, have you had an MRI/MRE done to check for any fistulas ? It sounds like you could have one as well.

Best of luck to you both!
I hope you get some answers soon
:hug:

 

[Ihurt]

I had an MRE of my small bowel in October and it was normal. I have not even been dx with crohns, I was going through testing. I was going to do a colonoscopy next, but gastro said NO deal, not after the complications I had with the MRE of my small bowel. I got severe diarrhea from the stuff I drank and it consequently gave me a UTI that I am struggling with. I have IC(interstitial cystitis), was dx back in 2006. I had severe pain back then in my bladder( no gut issues at that time at all) and most times my cultures would be negative( even though I know I had a infection as antibitoics always helped). I had a uro look inside and even do biopsies so I think he would have seen if there was a fistula when looking inside. Also, my urine is normal color.

My bladder issues started years ago in 2006. At that time I did not have any lower gut issues at all so I am not sure if my bladder issues are related to my gut issues( though it is always possible I guess). If I had a fistula wouldn't I have stool in my urine? I mean wouldn't they see in on culture or uninalysis? For me I truely believe that my IC is due to infection that is in my bladder wall which is why they cannot see it during a culture. This is likley with a lot of women with IC.

As far as MRE, I had the MRE of the small bowel, not sure if they seen the large bowel. I did not have to have any laxatives before this test. All it said was that my large bowel was full of stool suggesting constipation( well I wasn't constipated after drinking that nasty contrast!). So I do not think they got a great look at the large bowel, i mean I had stool in it, not sure how much they could have seen.....

I was just about to post the same thing as Shay-dee

Ihurt, have you had an MRI/MRE done to check for any fistulas ? It sounds like you could have one as well.

Best of luck to you both!
I hope you get some answers soon
:hug:

 

[Crohn's Mom]

I even get pieces of stuff in my urine when I have a UTI and my urine smells different. The pieces look like skin or slime. Ughh, no fun.

Sorry, I didn't realize you were not diagnosed with IBD.
That quote I put in here is what made me think it sounds like a possible fistula.

I have problems with painful and chronic UTI"s as well, so I do feel your pain and I hope you get it sorted soon !

 

[Beach bum]

I think I would agree with the other posters, you may not have a fever because of the remicade and you could have some kind of fistula. It seems odd that the doctors don't reach the same conclusion :yrolleyes:

Since being on remi and aza I have had trouble with my bladder too. Although it was dodgy before - (I am sure there is some link with inflammation and crohns there).
I have found I have to take cranberry extract tablets and only ever use hypo-allergenic pant pads, the normal ones - which I was using to ward off leeks - were actually making the infection worse.
You all have my sympathy's, hope you get something sorted soon.

:kiss:

 

[Ihurt]

Yeah, I was told once by a uro that the pieces of stuff I was seeing was my bladder lining sloughing off due to chronic inflammation. Not sure what to think though. But I will say that I usually only notice these pieces of stuff when my baldder is in severe pain or I have a UTI. When my bladder is not hurting I do not see these things. Really weird though... One thing is for sure though, I am pretty worried as I know so far the only thing that has helped my bladder is certain antibitoics, but I cannot rely on antibitoics forever, I mean they are killing my Gut.. Right now I am on augmentin and my intestines feel sooo bad, crampy and painful. I take tons of probiotics but am still worried about getting C-diff as I heard augmentin is one of the big hitters....That is the last thing I need right now!

Sorry, I didn't realize you were not diagnosed with IBD.
That quote I put in here is what made me think it sounds like a possible fistula.

I have problems with painful and chronic UTI"s as well, so I do feel your pain and I hope you get it sorted soon !

 

[DustyKat]

You have been given fab advice hun so I will just add this...

Immunosuppressants do have the ability to mask symptoms of infection. Because they suppress the bodies normal response to an infection...particularly fever...it is not uncommon to present atypically and the doctors that treat you should be aware of this. If they don't seem to get it I would have them contact your GI.

An example of suppressing fever...My son is on Imuran. When he presented to the ER, with what turned out to be a psoas abscess, although his WCC and CRP were significantly elevated his temperature was normal.

Good luck!

Dusty. xxx

 

[Earnellzwifey]

Thanks all for the replies.

@ IHURT i have taken several different oral antibiotics. Just got through with a week of Cipro to no help. I use to take low dose Keflex for about 3 years but I still got infections. My urologist took me off of it because he said that unless I was symptomatic not to take any antibiotics for my UTI's. They are scared that I will become immune to antibiotics and wind up with a super bug that they can not cure. I have not been cathing for the past week because it is too painful.

To all that mentioned a possible fistula. I thought about that too, since my UTI's started when the chronic D's started about 6 years ago. I asked my GI and he said on my last colonoscopy he did not see one. Would that show it if I did have one? I have had several MRI's of my lower abdomen and they never mentioned it either. I know that a fistula can be really small and hard to find. I do have stuff floating in my urine a lot also. They did not culture my last test but the one's before showed that I had a really hard to kill bacteria.

I hate to have to go to the ER for it because they always admit me for IV antibiotics but when I complain of pain they treat me horribly. After my last admission the Dr. told me not to keep getting admitted because I was going to get one of the hospital acquired infections and since I take antibiotics so much it might kill me. It is not my fault that they admit me and if I say no then they fuss at me about refusing medical treatment. I feel like I am stuck between a rock and a hard place when it comes to dealing with this.

also I am not on remicade for my CD I am on it for Behcet's my GI do not think my CD is that bad because my last scope showed minimal inflammation in my descending colon. But I think that was because I had already been on remy for 8 months and I also was on 40 mg of pred for over a month before the test. I also had the Prometheus test which was positive for CD. He is currently just treating it with librax 4 times a day and I still go to bathroom 4 to 8 times a day. The only time it slows down is when I am on pred or when I get constipated from taking to many narcotic pain meds.

I am scared to start back on pred because I have edema or swelling in my bone marrow of my large leg bone the Tibia aka the shin bone. My bro-in-law had this happen after long term pred and they had to drill holes in his bones to relieve to problem which only caused him to not be able to walk anymore. I already have severe problems with walking and do not want to make it any worse. As a matter of fact they are delivering my hover-round wheel chair tomorrow.

Sorry the post was so long it was also kind of a vent session also. I just don't know what to do anymore.

 

[Crohn's Mom]

Ok, I will try to keep this short lol ~ and I am obviously no doctor ~ it's just my take on having a daughter with severe CD

re: possible fistula
She had a colonoscopy in June this year because of how she was feeling. The doc said she had "mild disease" at the site of resection and inflammation in her stomach and esophagus (tested her for Barrettes esophagus~negative).
They concluded that she just must be "overly sensitive" to her CD ~ therefore her symptoms appear more w/ little disease.

Fast forward to August: We reported to her GI that she had a "leaking sore" on her scar (ileostomy resection site). He concluded over the phone that since he had just scoped her himself that it must just be a suture coming to surface and would heal itself.

Fast forward again to this month: Took her to the ER at her hospital and now she has two "sores" on the scar site.
Her surgical team came down to check her out while there and immediately decided her "sores" were FISTULAS.
(a bed side ultrasound confirmed it and we saw the fistula tracks ourself )

My daughter is on Cimzia, and just had a surgery last December, with symptoms returning within 2 months of her surgery ~ than colonoscopy in June with " mild disease" activity.

My point is...her GI felt the same in that there's no way that her "sore" was a fistula because he had personally just scoped her himself !
He is a wonderful doc; I still do not doubt this.
Problem is ~ Crohn's has a mind of its own right ?!? :rosette2:

Maybe you don't have a fistula ~ I sincerely hope you don't !
However, maybe you do
Dont let the recent scope fool you
My point ? This all happened within a 3-4 month period, AFTER 2 surgeries in a 9 months time ~ 1 for resection and ileostomy placement ~ 1 for reversal)

As far as pred goes...have you tried Entocort ? It seems to be much easier on a person with less physical side effects

Now who's written a book ?? LOL
Just putting my 2 cents in and I hope It helps in some minute way !
Take care of you and do not doubt what you see and feel sweetie! :rosette2:

 

[Earnellzwifey]

Thanks for the post Crohn's Mom. I never mind a long post, I know on here somethings just have to be fully explained and some of our stories are so complicated that the short version is still a lengthy post.

I appreciate the value of your post. Sorry to hear that your daughter is going through so much. I hope she is doing better now.

I actually think that my GI was kind of rushed when he did my last scope because he was already running late. I don't know what to do to find out if I might have a fistula or not. For some reason most of the dr.s around here do not take me seriously. I think they think it is impossible for a 34 year old to have 32 medical conditions and 4 of them rare disorders. Everything that I have been diagnosed with have the medical testing to back it up, but still I get treated like a mental case most of the time. If I talk to educated about my health then i'm labeled a hypochondriac, and accused of looking up stuff on the internet and then thinking I have it.

It is just so hard to find some real help around here and I can not afford to go out of state to get better care.

 

[Ihurt]

Hey Earnellezwifey,

Geez, I am sorry you are going through all this. I totally understand how hard it is to deal with the medical profession and doctors not taking you seriously. Being sick for the last 9 years, I have seen first hand how doctors tend to treat someone( especially women for some odd reason), like they are all hypochondriacs or just over playing things. It can be so hard. I also hear ya about the money issues, like who has money to travel to see other doctors when you are broke due to paying for all your health issues! it is insane.

I feel for you with the UTI's though. They are the worst for me. My bladder pain can be sooo bad that I just want to kill myself. There are times where I would literally pray and beg God to just end my life. I also have IC of the bladder, but honestly, I think it is all infection related in my case.

Which bacteria are they culturing up in your urine, did they tell you? What do the doctors tell you to do in terms of the UTI's? I mean they have to help you. Leaving a UTI go can turn bad if it gets to your kidneys. Are your UTI's so far contained to the bladder only? I gotta tell ya, I have lost faith in western medicine. I mean I have been sick for so long and the medical professionals really do not know much from what I have experienced. It also pisses me off when a person who has a severely painful disease that needs pain manangment it so quickly called a drug seeker. I mean come on, really??? I think anyone who was in severe pain constantly would be begging for pain relief!! This is why I have lost respect for doctors due to ignorance on their part. I myself get bad side effects to all meds so I usually cannot even take anything much for my pain, it really sucks. I have taken tylenol 3 and it did not even hardly touch my bladder pain.

I am not sure about the fistula, I guess you would have to have that looked into, but from what you are saying, the doctors seem to fluff you off. Thats messed up! I hope you do not have a fistula. I have not even been dx with crohns disease, I was going through testing but hit a glitch after I did the upper MRE of small bowel. I got nasty diarhea from drinking that stuff and yep, got a nasty UTI! I have been sick since the end of October with this stupid UTI and my bladder has been messed up since. MY gastro wont even consider doing a scope now after getting this UTI just from the MRE. I think when you have a lot of chronic health problems, doctors look at you like you are a liability or something. They dont want to even get involved.

I guess I would just try and be persistant with getting answers and help. My heart goes out to you. I hope you feel better soon...( sorry this post was so long winded ).

 

[Earnellzwifey]

Thank you ihurt I hope you ind some relief from your UTI as well. I and sending pain free hugs and thoughts your way.

 

[Ihurt]

Thanks!

One other thing I thought about. Have they ever looked inside your bladder with the scope? You would think that if you had a fistula they would have seen it by looking inside the bladder, but then who knows. I have heard some on here say they can be hard to see. I have been reading up and researching things with the chronic UTI's and came across a few things. Have you ever heard of a urethral diverticulum? They say women can have this and it can cause chronic infections. Now I may be way off the beat and path here, it is just a thought. I was reading about it and just wondered. Though they say this is hard to diagnose to.( what else is new right!lol).

I hope we can get some answers and help soon. I have days where I honestly think I would be better if I just had my bladder removed! I am so sick of fighting all the UTI's and pain. But of course with surgery comes complications and I sure dont need anymore. I think they have to manipulate the small intestines to make an outlet if you have the bladder taken out. It is serious surgery. I just HATE my bladder!

Thank you ihurt I hope you ind some relief from your UTI as well. I and sending pain free hugs and thoughts your way.

 

[Earnellzwifey]

I will have to look into that. I have not had a scope done on my bladder. I was going to ask for one on my next appt with my urologist. I have been trying to call his office all day and can not get anyone on the phone. I just feel so horrible right now and do not know what to do.I wish they would have taken my bladder out when they did my hysterectomy. I thought my abdominal pain would get better after the surgery and it has seem to have gotten worse. Stupid bladder!!!!

 

[Ihurt]

God I hear ya. And isn't it always the case when a person needs to get a hold of their doctor they never can! Maybe if it is possible you can call the doc on call after hours. Not sure if you will your doctor or another one though. I mean if you can get a hold of him, like have him paged, then maybe he will call you back.. Is your pain in your back( kidneys) or is it localized in the bladder right now? I feel so bad for you. I know how horrible it is. And yes, I agree, STUPID BLADDERS! DO you at least have something for the pain? They gave this stuff that turns your pee orange, I think it is called pyridium. It is suppose to help with pain in the kidneys and bladder. It may take the edge off. I hope you can get a hold of your doctor.... Hope you feel better soon. Hugs to you..

I will have to look into that. I have not had a scope done on my bladder. I was going to ask for one on my next appt with my urologist. I have been trying to call his office all day and can not get anyone on the phone. I just feel so horrible right now and do not know what to do.I wish they would have taken my bladder out when they did my hysterectomy. I thought my abdominal pain would get better after the surgery and it has seem to have gotten worse. Stupid bladder!!!!

 

[Earnellzwifey]

sorry I am just now responding I have been very busy the last few days. I still have not got hold of my doctor. He does not have an after hours on call. It just tells you to go to the ER if you call after hours and are having problems. Not only is the pain also in my kidneys my stomach is starting to act up as well. I just can win for losing.