Immune System Down For Good? :(

[Crohnsnewbie]

I'm still in a flare for about 12 months now (first time with Crohns) but I seem to be doing better. I have "D" maybe a few times but then on days I think I'm okay....I either end up having "D" if I get out of my house at all or have "D" if I know somebody is coming over to my house even if they're people I've known forever. Then even if I don't have "D" over 3 times a day I end up feeling nauseated at some point, getting infections all the time...UTI's, Bladder infections, Pink Eye over and over again no matter how clean I am! CURRENTLY HAVE PINK EYE! I'm picking up a cold or something cuz I visited my gram in nursing home! I used to work in nursing homes in the kitchen all the time but now I guess my immune system is down and I get ANYBODY's sickness a day after I'm around it! I'm wondering how am I going to get ANY JOB? I missed an interview because of my Pinkeye.....even then I don't know if they'd hire me. I'd probably poo during interview if not then my bowel sounds are constant ALL THE TIME! :O

Couldn't go to the interview I have no money for new glasses, wearing old ones now, can't wear contacts, my old glasses I'm wearing I can't see good at all! I need new prescription contacts EVERY YEAR! These glasses are 3 years old and my depth perception is wayyyyy off so Can't drive to any interview and have nobody to drive me there

I also notice even if I don't poo a lot in a day I urinate in place of how many times I used to poo which doesn't help.

I still have intestinal pains all the time, I think maybe stress related?

I get dizzy sometimes and I'm achey a lot and sleepy for no reason.
Am I possibly getting allergies? I'm not used to this clearing my throat every few minutes for the past 3 days, no matter what I drink I can't clear my throat lol. Anybody else getting allergies or colds more?

I've NEVER had ALLERGIES in my life! Not used to this clogged throat feeling....along with my pinkeye and slight coughing etc...

 

[Ihurt]

wow, I am sorry for what you are going through. I have not been Dx with crohns, I am still in the midst of trying to figure out what is going on. I do have the issues with the UTI's though. I also have Interstitial cystitis. That may be something you want to look into with the IC, the symptoms are bladder pain, and frequent urination.

I am very paranoid about getting diarreha due to the UTI's is causes. I have to literally shower after each time I have a BM. I also bottle wash down there to hopefully wash away bacteria after a BM. I have a whole lot of health issues as well( IC, IBS, possible chronic lyme, undifferenciated connective tissue disease, fibromyalgia, stage 1 heart murmur).. So I do understand where you are coming from. I also agree that these issues are due to a lowered immune system, especially with all the infections you keep getting. Have you ever went to a natural holistic doctor? Sometimes they can be pretty good about helping the immune system get back on track. I have seen a couple and they help with some things, but everyone is different. I kind of like the natural doctors as they try and help with getting the body back to a healthy state whereas western med docs are all about prescribing meds and putting a bandaid on the illness, they are not interested in finding a cause nor a cure. But sometimes we need western meds so it is good to have a nice and honest doctor that you can trust and feel confortable with. It is hard living with chronic illness, I know. Have you tried any other meds besides the immodium for the diarhea?

I'm still in a flare for about 12 months now (first time with Crohns) but I seem to be doing better. I have "D" maybe a few times but then on days I think I'm okay....I either end up having "D" if I get out of my house at all or have "D" if I know somebody is coming over to my house even if they're people I've known forever. Then even if I don't have "D" over 3 times a day I end up feeling nauseated at some point, getting infections all the time...UTI's, Bladder infections, Pink Eye over and over again no matter how clean I am! CURRENTLY HAVE PINK EYE! I'm picking up a cold or something cuz I visited my gram in nursing home! I used to work in nursing homes in the kitchen all the time but now I guess my immune system is down and I get ANYBODY's sickness a day after I'm around it! I'm wondering how am I going to get ANY JOB? I missed an interview because of my Pinkeye.....even then I don't know if they'd hire me. I'd probably poo during interview if not then my bowel sounds are constant ALL THE TIME! :O

Couldn't go to the interview I have no money for new glasses, wearing old ones now, can't wear contacts, my old glasses I'm wearing I can't see good at all! I need new prescription contacts EVERY YEAR! These glasses are 3 years old and my depth perception is wayyyyy off so Can't drive to any interview and have nobody to drive me there

I also notice even if I don't poo a lot in a day I urinate in place of how many times I used to poo which doesn't help.

I still have intestinal pains all the time, I think maybe stress related?

I get dizzy sometimes and I'm achey a lot and sleepy for no reason.
Am I possibly getting allergies? I'm not used to this clearing my throat every few minutes for the past 3 days, no matter what I drink I can't clear my throat lol. Anybody else getting allergies or colds more?

I've NEVER had ALLERGIES in my life! Not used to this clogged throat feeling....along with my pinkeye and slight coughing etc...

 

[Crohnsnewbie]

I haven't been able to take Immodium or Pepto AT ALL anymore seeing how they didn't help me after I took them 8 weeks in a row last year to just try to stay at my job before I was fired in October on the same day i was diagnosed! I went to the ER and docs told me to never take immodium or pepto again because it could cause intestinal distention, thank God when they checked my intestines for that with an X-ray they said I was fine. I can never take those again though especially since they don't work anymore!

 

[Ihurt]

What did they tell you to take to control the diareha? Your doctor should be helping you with controling the diareha, especially if you are getting UTI's. Do you have a regular gastro doctor that treats you for the crohns? IT sounds like your doctor is not doing his job if you are still in agony and not getting any help. I would strongly suggest a second opinion with a different doctor if the one you have is not helping you. I am sorry you are dealing with this, my heart goes out to you..

I haven't been able to take Immodium or Pepto AT ALL anymore seeing how they didn't help me after I took them 8 weeks in a row last year to just try to stay at my job before I was fired in October on the same day i was diagnosed! I went to the ER and docs told me to never take immodium or pepto again because it could cause intestinal distention, thank God when they checked my intestines for that with an X-ray they said I was fine. I can never take those again though especially since they don't work anymore!

 

[Crohnsnewbie]

They've never tried to control it except with probiotics. Sure Bentyl helped but was temporary and Bentyl only helps so much. Besides that they don't give me anything. My gastro doc doesn't think I'm sick..................but I have been for 12 months! Probiotics do not control diarrhea!

 

[Ihurt]

There is a kind of probitoic out there that is a good form of yeast, it is called florastor. This probitoic has a constipating effect for some people,if you have not tried it, maybe you could give it a try just to see. It is available over the counter at most walgreens or drug stores. I am not sure where you live, but you could also google it online and it can be ordered online. Again, I am not saying it works for all people, but I know some people swear by it. It is very frustrating that your doctors are ignoring your symptoms, but I have been there as well. Sad as it is, chronically ill people are not well accepted by doctors. Doctors want patients they can just write a script for and be done with it. They just do not have the knowledge when it comes to these orphan diseases. They just slap a name on it instead of telling you they really do not know.

Is there any way you could get in to see aother doctor maybe get another opinion? I have been through soooo many doctors with all my issues I have lost count, but I can tell you out of all the ones I have seen and it is over 50, I have found 3 that are decent and knowledgable. Pretty sad huh? And I live in the Big city of Chicago where there are some of the top hospitals. Chronic diseases are not very well understood or treated unfortunately. There are some good docs out there, just that they are far and few inbetween. I would try and find someone else. Dont give up. You are bound to find a good one. And always keep your records with you, like any tests or stuff that you have had done so you do not have to repeat tests.

They've never tried to control it except with probiotics. Sure Bentyl helped but was temporary and Bentyl only helps so much. Besides that they don't give me anything. My gastro doc doesn't think I'm sick..................but I have been for 12 months! Probiotics do not control diarrhea!

 

[Crohnsnewbie]

I've had it, can't afford to take 2 every day, can only afford to take one every other day. Even when i took it as recommended it helps but not THAT MUCH!

 

[Crohnsnewbie]

I'm very poor and live in a small town in Ohio, no insurance no way to pay for a new gastro doc. I was only able to go to him 4 times, some friends helped pay my way. Now my bank account is gone since I was fired from my last job because of Crohns and have no way to pay for any gastro doc. I have to stick with this one or they said they will cut my supply off of Lialda which I get for free in samples Soon....through the shire company but for how long I don't know. I can't afford the next appointment. There are no payment plans excepted you have to pay $150-$200 every visit even if it's a 20 minute visit or 10 minute visit! Plus you never see THE DOC it's always his nurse practicioner! So no wonder my doc doesn't believe I'm as sick as I am!

 

[IAmTheWalrus]

The health system in America is disgusting. I'm sorry I can't help with your concern, but your above post seems to be the norm with people and the system over there.

 

[Ihurt]

Oh you got that right! Over here if you have no insurance you get treated like crap. Look at this way, I am under my husbands insurance, he is a teacher. We have a $2,500 deductible, That is $2,500 deductible for each one of us!! That means I have to pay all that up front before they will cover Any tests. This is just another reason I am so reluctant to have any tests done. Oh yeah, and even after I reach the deductible, I still have to pay like 20%. There is my husband, myself and my son so god forbid we all get sick or need some type of testing or hopistalization we would have to pay a total of $ 5000 out of pocket. That is what health insurance is like in the states!!!

The health system in America is disgusting. I'm sorry I can't help with your concern, but your above post seems to be the norm with people and the system over there.