I just want to cry and hide and then cry somemore !

[Zeppy321]

Hi everyone , i am back in the hospital again . I now have c diff. I'm in so much pain . I can't ever heal I just get sicker and sicker. I was just in the hospital for a flare on mothers day week in May.My new gi took me off aza 150mg and put me on pentasa. Pentasa was the first thing i was on 4 years ago . It didn't work. I am scared and in pain and my doc says he has to treat the c diff before he can treat the crohns. I 've had no success with pentasa , Remicadee , or now aza. The gi I see does not like to use prednisone or biologics. I'm scared. I came to the er on Monday with severe pain they gave me pain meds and callled my gi who said to go home and continue on my mesaline drug ( i thought it was called Lialda but my nurse tonight said it is pentasa ) and to keep taking my entocort he precribed me a few days before. So I went home - 4 hrs later an ambulance was bringing me back - the pain had tripled and I was throwing up thick green shit. The nurse who was on the earlier shift said she would now admitt me but if I was just there for more pain meds i wasn't getting any. I was literally throwing up shit. And this nurse put on my first discharge sheet I need to go to pain management clinic not the er when I'm in pain . So now I'm so scared to ask for an increase in pain med even though I really need it. I feel like I'm on the wrong meds have the wrong doctors and don't know the correct questions I should be asking.I just can't keep it together. I know this post is all over the place and I'm just looking for thoughts on my doctors med choices or really any ideas anyone has. I'll take anything sick of being in pain and sick of crying myself to sleep.If I didn't have children I would have walked away from any and all medical treatment, Sorry I keep rambling and this are misspelled. Thanks for taking your time to read this about my crappy life. My real name is Cheri

 

[Clash]

Sometimes pred is needed and IV pred can really help in the hospital also his hesitancy to use biologics would worry me as well, sometimes the big guns are needed. And sometimes you need a combo of the biologics and immunosuppressants. I would have a frank discussion with the GI about this. Rarely do you move down the drug pyramid when a med fails and you are still flaring so I'm unsure of your GIs treatment model.

If you are in pain, speak up, don't allow one nurse to dictate your meds. If she is adamant about it then ask to speak with your doc or a pain management doc at the hospital.

I hope you feel better soon.

 

[LodgeLady]

I feel so bad for you Zeppy. I am in somewhat the same boat but haven't gone to the ER yet. I too am in pain, and with nausea and vomiting. But my GI is convinced it's IBS and not Crohns. I have had it with these docs. Do they really think we want to feel this way? I don't have a psychological issue it's physical! No food or stress is not bringing it on!! I hope you get the right treatment! Prayers for you.

 

[If*]

Hello, hope today finds you feeling much better. Have you been checked for a stricture or blockage?? The 'green' can be just as you are calling it, what can't go through can come back up and is SO Vial. Have you been offered a ng tube to help suck it out? It sounds awful but could bring a lot of comfort.
Really hope you are feeling better.:hug:

 

[Scaryman]

Wow! that sucks- I'd consider getting your GI to go up the GI pyramid instead of down. The fact that he/she doesn't like Biologics scares me. I'd think about another GI. Personally speaking I think its strange they'd put you back on Pentasa when it clearly didn't work. if your in that much pain and discomfort, you need to let your GI know you want to go with new drugs- not backwards.

best of luck.

 

[Basmah]

What the hell, why doesn't your GI like biologics?!? I get the side effects, but they could be so beneficial for you to get in the right track. I feel for you though, and I strongly suggest speaking up - chances are one nurse or another worker might advocate for you. And ask for a second opinion and another doctor. Well wishes going your way <3

 

[Scaryman]

I really do hope you get another doctor. I can't stop thinking about a doctor who doent like the benefits of biological. Sorry to reiterate this again but I can't stop thinking about this, it's very disturbing to me.

 

[Basmah]

Scaryman, I am 10,000% with you on that one. That plus putting you back on pentasa seems almost negligent. If you are still in the hospital, maybe you can ask to talk to another GI doctor there - hopefully you will get someone that isn't a complete moron.

 

[Scaryman]

Scaryman, I am 10,000% with you on that one. That plus putting you back on pentasa seems almost negligent. If you are still in the hospital, maybe you can ask to talk to another GI doctor there - hopefully you will get someone that isn't a complete moron.

Very much agreed- I was wondering where this doctor was licensed from. Where the hell did he/she get a M.D. :ymad::ymad: I try to NEVER get negative here but this one is unavoidable. I also try to never ask this favor from anyone. But in this case I must. PLEASE DEMAND another G.I.- ASAP!

 

[mvond5]

I hear that you are on a lot of medicines and you must feel this is your only option. However, my son when he's not feeling well will request that I make him the HOMEMADE SCD yogurt. This is just a suggestions and will not cause any reactions with all your medicines. He does not like the yogurt at all but feels he needs it and it helps.
http://www.scdiet.org/2recipes/scdyogurt.html

Hi everyone , i am back in the hospital again . I now have c diff. I'm in so much pain . I can't ever heal I just get sicker and sicker. I was just in the hospital for a flare on mothers day week in May.My new gi took me off aza 150mg and put me on pentasa. Pentasa was the first thing i was on 4 years ago . It didn't work. I am scared and in pain and my doc says he has to treat the c diff before he can treat the crohns. I 've had no success with pentasa , Remicadee , or now aza. The gi I see does not like to use prednisone or biologics. I'm scared. I came to the er on Monday with severe pain they gave me pain meds and callled my gi who said to go home and continue on my mesaline drug ( i thought it was called Lialda but my nurse tonight said it is pentasa ) and to keep taking my entocort he precribed me a few days before. So I went home - 4 hrs later an ambulance was bringing me back - the pain had tripled and I was throwing up thick green shit. The nurse who was on the earlier shift said she would now admitt me but if I was just there for more pain meds i wasn't getting any. I was literally throwing up shit. And this nurse put on my first discharge sheet I need to go to pain management clinic not the er when I'm in pain . So now I'm so scared to ask for an increase in pain med even though I really need it. I feel like I'm on the wrong meds have the wrong doctors and don't know the correct questions I should be asking.I just can't keep it together. I know this post is all over the place and I'm just looking for thoughts on my doctors med choices or really any ideas anyone has. I'll take anything sick of being in pain and sick of crying myself to sleep.If I didn't have children I would have walked away from any and all medical treatment, Sorry I keep rambling and this are misspelled. Thanks for taking your time to read this about my crappy life. My real name is Cheri

 

[Smokeyjameson]

Have you never been on a steroid lime prednisone?

 

[Zeppy321]

Sometimes pred is needed and IV pred can really help in the hospital also his hesitancy to use biologics would worry me as well, sometimes the big guns are needed. And sometimes you need a combo of the biologics and immunosuppressants. I would have a frank discussion with the GI about this. Rarely do you move down the drug pyramid when a med fails and you are still flaring so I'm unsure of your GIs treatment model.

If you are in pain, speak up, don't allow one nurse to dictate your meds. If she is adamant about it then ask to speak with your doc or a pain management doc at the hospital.

I hope you feel better soon.

Hi Clash thank you for your reply. I normally hate steroids because of the length of time you have to stay on them and the awful side effects I get but I know they do work rather quickly. This time I begged for some iv pred which they did finally give me after the ambulance brought me back to the er but the next day my c diff test came back positive and they stopped the steroids. Can you be on pred when you have cdiff ? I am home now but am still in a lot of pain. I have percocets but they are not helping much at all. Other then that I was discharged with zofran and vancomycin and take 4 500mg pentesa a day. I have a low grade fever tonight and feel awful . I don't feel I should have been discharged from the hospital yet . I feel about the same as the day I was admitted.

 

[Zeppy321]

I feel so bad for you Zeppy. I am in somewhat the same boat but haven't gone to the ER yet. I too am in pain, and with nausea and vomiting. But my GI is convinced it's IBS and not Crohns. I have had it with these docs. Do they really think we want to feel this way? I don't have a psychological issue it's physical! No food or stress is not bringing it on!! I hope you get the right treatment! Prayers for you.

Thank you LodgeLady I hope you get some answers and the right treatment also . Good luck to you.

 

[Zeppy321]

Hello, hope today finds you feeling much better. Have you been checked for a stricture or blockage?? The 'green' can be just as you are calling it, what can't go through can come back up and is SO Vial. Have you been offered a ng tube to help suck it out? It sounds awful but could bring a lot of comfort.
Really hope you are feeling better.:hug:

I have asked many times about strictures or blockages the only info I ever get is there is a lot of inflamation in there. I'm not sure the doctors around here know how to treat crohns.

 

[Scaryman]

I'd be on a plane ( like I have before in so much pain) and take myself to Chicago where they know crohns, experts.

 

[Zeppy321]

Wow! that sucks- I'd consider getting your GI to go up the GI pyramid instead of down. The fact that he/she doesn't like Biologics scares me. I'd think about another GI. Personally speaking I think its strange they'd put you back on Pentasa when it clearly didn't work. if your in that much pain and discomfort, you need to let your GI know you want to go with new drugs- not backwards.

best of luck.

Scaryman I have been trying out a new gi for the last 3 weeks because my old one would only see me like twice a year and I didn't like this cocky attitude. This new gi seemed nice and funny and said he would see me every 2 weeks until I felt better. Thing is after the way he handled this er visit and basically told me it was my fault I got c diff for going back to the hospital were all the germs are I saw his true colors and will not be seeing him again ! Now tomorrow I have an appointment with my old gi and am going to have to explain the new gi, the change in meds and this last er stay. Hopefully he will take me seriously and get me on the right meds. I am just trying to get the best care possible which sems really hard to do in my town.

 

[Zeppy321]

I hear that you are on a lot of medicines and you must feel this is your only option. However, my son when he's not feeling well will request that I make him the HOMEMADE SCD yogurt. This is just a suggestions and will not cause any reactions with all your medicines. He does not like the yogurt at all but feels he needs it and it helps.
http://www.scdiet.org/2recipes/scdyogurt.html

Thanks I will give it a try.

 

[Zeppy321]

I'd be on a plane ( like I have before in so much pain) and take myself to Chicago where they know crohns, experts.

If I had the financial means i would be looking for help elsewhere. The hospitalist I spoke with suggested surgery and a second option from Yale the major hospital here in CT. I wish I could find a gi who had her point of view. She sees me admitted every few months and thinks I deserve a better quality of life.

 

[Zeppy321]

Have you never been on a steroid lime prednisone?

No, I have never heard of steroid lime prednisone. I have been on iv steroids, regular prednisone and entocort.

 

[Smokeyjameson]

Sorry like was supposed to say a steroid LIKE prednisone. Your dr may be against it but it is still one of the most popular meds for Crohn's. It helps with pain and inflammation. I would try to find another dr if you can. Can you maybe see a pain
Management dr in the meantime?

 

[Lady Organic]

I have no idea what is the GI procedure to treat C-Difficile. Does anyone know? At what degree is your crohns active at this time? Could most of your symptoms be explained by the C-Difficile infection? All I am thinking a possible reason why your GI would want you to stop AZA and not prescribe other big drugs at this time is for your immune system to be stronger in order to fight better the C-Difficile. taking immuno-suppressant such as AZA or biologics DO decrease our resistance to infections and capacity to fight them. maybe he meant, not using the other drugs at this time and maybe your crohns is not severe enough to consider them at this time either, so for him, its out of question at this point for ''your'' case. maybe he wants to use the about 3 months window where AZA will still be in effect in you eventhough you stopped using it, hoping the infection will be cleared by this time and he would like to put you back on AZA afterwards. just some hypothesis here... It is true some doctors can be arrogant sometimes but it doesnt always mean they are bad doctors, it is just what I call authority figure arrogance syndrome which affect many specialists such as doctors. maybe there is such a procedure to treat C-difficile in IBD patients and we dont know about it...

 

[Scaryman]

When I tested Positive for C-diff was during my hospital stay post resection. The way that the experts have treated me was a steady barrage of Flagyl. This antibiotic is well known to manage C-diff. Hope this helps. I never heard of a procedure fior C-diff other than testing to see if your positive or not.