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Sad. In hospital!!!!

Honey

Honey

Moderator
Staff member
Hi there.
I am in hospital needing some support!..I am on oxygen and antibiotics as I have a lung infection. It is hard getting needles stuck in you continually. I already have 8.weekly Remicade infusions. I am told they left me vulnerable to this infection. Anyone else experienced this? I would appreciate a little support. Hope to hear from you all. Thanks.:tear:
 
guest78

guest78

Hi Honey,
so sorry you are feeling so rough! hospitals are never nice to be stuck in, at least you'll hopefully be getting a lot better soon!
xxx
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
Oh no I'm sorry. D:

As mentioned Remicade can make you more susceptible to all sorts of infections. For me I got an infection in both of my breasts (mastitis) and I've never breast fed (which is the most common way to get it). My GP said that I could have cut myself while shaving my armpits but for this to happen with both breasts? Even he admitted it was unlikely. Had to stop Remicade because of it.

I'm wondering if maybe you could do a lower dose of Remicade and add on 6MP or Imuran? Or maybe you need to be on something else if its causing more harm than good. Upper respiratory infections can happen with biologics (that's why I stopped Humira but it wasn't bad enough to put me in the hospital). Hope you feel better soon! *HUGS*
 
iriechic

iriechic

:hug: Oh Honey, I am SO sorry to hear this news. I pray you feel much better soon! Remicade didn't ultimately work out for me but you gave me great support while I did loading doses. I had joint pains and got paratitis (I think Remi related). It seems like it has been a beneficial treatment for you, with this exception. Know I am lifting you in prayer and hope you get to go home soon!!!
 
Honey

Honey

Moderator
Staff member
Hi all,
Thank you for the kind words , sharing info and being there for me. I have been in a week ,still on oxygen, antibiotics. I may be out next Monday. That depends. I will discuss all with my Consultant. I was told this could happen again. Improving. Thank you for prayers. My faith too is my strength. Love.
 
Honey

Honey

Moderator
Staff member
Hi Jennifer,
Thank you so much,just what I needed : caring words from my forum friends. I will let you know what happens. Love.

4
 
Honey

Honey

Moderator
Staff member
Hi there,
I am still in hospital. Antibiotics did not work. On another doze on a drip. I am off oxygen, progressing!
I will be in until Infection clears Love
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I'm sorry the antibiotics didn't work Honey. :( Yet I am glad that you're progressing and able to come off the oxygen. :hug:

Any talk of plans on what to do about the Remicade?

How are you holding up in the joint?
 
spingirl

spingirl

I'm sorry to hear you are still in hospital but happy to hear you are off of oxygen! That is such a positive sign that you are heading in right direction. Will pray for quicker release. I don't know anything about Remicade. I am on Aza right now and ...fingers crossed...it seems to be working...although I have a structure and will be having surgery soon...that's another story,..but I wonder what your drs are telling you about the remicade and if they will lower dose maybe? Take care! Keep us posted!
 
Honey

Honey

Moderator
Staff member
Hi there
Thank you Jennifer and all for your concern. I will be having physio today to try to clear chest. Remicade infusion postponed. I am worried as I have used up all my options
I will deal with today with Gods help. I shall discuss treatment for Crohns later. Infusion postponed
 
Honey

Honey

Moderator
Staff member
Hi there,
Saw the Respiratory specialist today. I am now on a third antibiotic on a drip. I am going to be in all weekend and pray this now works!!!! If not, I have to go to theatre next Wednesday and have something like an endoscopy to clear the lungs. I do hope I do not have to go through that!!!!!!!!!!! Your kind words and prayers would be appreciated. Much love.
 
spingirl

spingirl

Hopefully you won't have to have an endoscopy but if you do - please please please know that it is not bad at all. I mean...as far as GI procedures go - I would have 1000 of these vs. 1 more colonoscopy. Truly. If it is the same as the ones I have had - you just don't eat after midnight and then they of course hook you up to monitors but then give you a sedative and your are done. A couple of times I had something sprayed into my throat to numb it but I was out when they put the scope down and never even knew a thing. You will be fine - I SWEAR!!! I always thought the endoscopy was for looking down the throat thought. Didn't know it went into the lungs...but I am not a doctor and I don't even play one on TV so don't go by me. Just figured I would share my endoscopy experience with you. Maybe...a little tiny bit of a sore throat afterwards but that went away after my nap :) GOOD LUCK! Keep us posted.
 
Honey

Honey

Moderator
Staff member
Hi there
thank you for replying. I have had endoscopy in the past for stomach, but this is different. It is to flush out the lungs. Oops!!!!!! I am good at taking one day at a time, with God's help. I hope my new meds. work. Hanging in there!
 
iriechic

iriechic

I just said prayers that God clears this infection with this new antibiotic. Keep leaning on the Lord. You are a strong woman! God is with you right now where you are, and always. Love and light, iriechic
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I'm worry Honey. D: I hope this new round of antibiotics works for you too. A scope in the lungs does not sound like a good time but it'll be over before you know it IF you do need to have it done. Get better soon Honey and thank you for keeping us posted. :hug:
 
J

JustAYoungLad

Location
USA
I've just come out of hospital after being there for weeks. I know how upsetting it is. Daily bloods, daily anti-clot injections, infusions, drips. Then just as your ready to leave your blood test shows something off and your there for another 5 days.

I hope the antibiotics your now on work for you! 3rd time lucky! :)
 
Honey

Honey

Moderator
Staff member
Hi there,
Thank you for sharing. Yes it is hard going , but being supported by my forum friends is great!!!!

4
 
spingirl

spingirl

I was just thinking about you Honey too. Hope those antibiotics are working for you now and you are feeling, at least, a little better!
 
Honey

Honey

Moderator
Staff member
Hi there unfortunately I may now be reacting to steroids or have another infection. Not getting out tomorrow as forecast! I am running out of phone time, Megabytes, so my answers will now be limited!

4
 
Sunione

Sunione

Honey said:
Hi there.
I am in hospital needing some support!..I am on oxygen and antibiotics as I have a lung infection. It is hard getting needles stuck in you continually. I already have 8.weekly Remicade infusions. I am told they left me vulnerable to this infection. Anyone else experienced this? I would appreciate a little support. Hope to hear from you all. Thanks.:tear:
Click to expand...
Hi Honey

Very sorry to hear that you are in the hospital. They can be awfully depressing places. How long have you been there?

It is good that you can get onto the forum while you are laid up. Anything to make the time go faster is a blessing.

My first Crohn's related stay was the scariest thing because of the quality of care. Next time I was in Yale-New Haven and that was a very positive experience. I expect to be back there for surgery after the new year and I feel pretty confident that I will get good care.

I will be thinking of you.
Suni
 
B

Brian Casey

I am new to this forum but I am sorry to hear you are in the hospital. I as many of us have been there. I was in there for three months due to complications. And yes the blood tests and shots get very very old. I hope things turn around for you soon.. Keep your faith, that means more than anything.. Will send some prayers!!... Brian
 
Honey

Honey

Moderator
Staff member
Thank you all.Out of hospital for the weekend but very shaky and sick. I have to go in on Wednesday morning as my blood markers are sky high!!! In overnight for a Brocostomy not sure about my diagnosis yet. Praying that I remain the same and enjoy my home for a while. Looking forward to getting better.
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I hope you get good new Honey and I'm glad you're out of the hospital. Hope you feel better soon. :hug:
 
Honey

Honey

Moderator
Staff member
Hi there,
I am glad to be home but I am struggling with breathing, going up and down stairs. It is scary that Remicade has caused this, as I have never had respiratory problems before. I go into hospital on Wednesday for that investigation, and stay overnight. I have a lot of pain in my limbs too. I look forward to feeling better than this, once they get a correct diagnosis and I get further treatment. No doubt, more antibiotics.
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
I'm sorry you're still not feeling well Honey. :( Hope you get good news from the test on Wednesday. :hug:
 
Honey

Honey

Moderator
Staff member
Hi there,
Thank you Jennifer for your kind words. Yes I do need to feel better than this. I went out a short walk to post some cards, and I could only go at a snail's pace. Sleeping a lot, no doubt my infection making me lethargic. I am usually doing a lot of things in a day. Rest time just now!!!!
 
spingirl

spingirl

Oh Honey!!! Sorry to hear you are still not feeling well but happy you got to be at home. Just curious. Do you take anything for cholesterol too? I get a lot of joint pain with the Aza I take but when I add a statin - I am like a wobbly old woman going up the stairs and getting out of bed. Its a remarkable change. Doctors tell me my numbers are ok for my muscle tests so I know no damage but I know how I feel. So I am just wondering...Well I am sending you good wishes for a good outcome on Wednesday. Keep us posted!
 
iriechic

iriechic

Dear Honey,
I wish I could snap my fingers and make this experience just go away. I was even thinking it would be nice to live near you. I would love to help you with anything...cooking, cleaning, hugging and supporting you. I wish for this episode of respiratory issues to be gone just as quickly as they came on. I was in the hospital in and off Sept. and Oct. and I know it's nowhere anyone wants to be. Interestingly, while Remicade did not agree w/me (but was still in my system, I think) and I was hospitalized, I had awful bilateral parotitis. My salivary glands were infected and my face was swollen like a chipmunk. I know, different than what you have, but my heart can relate.
Keeping you in my prayers for complete healing soon!
 
Honey

Honey

Moderator
Staff member
Hi there,
thank you all for sharing your experiences and also your kind words. I was told to increase my Prednisolone by I mg as my body is fighting an infection. I now have two specialists looking after me, my gastroenterologist and now the respiratory guy!!! The patients were joking with me about that. I look forward to being able to get around again!! I have increased my steroid by Img again, and now can use my hands again. I was and am in so much pain. Both specialists will speak to me in a weeks time. Not all
results will be through. A big thank you Ir...for such kind, caring words. I hope you are reasonably well just now.
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
Let us know how the test goes today, the one that's checking your lungs. Glad your hands are doing better Honey. :)
 
Honey

Honey

Moderator
Staff member
Hi there,
Thank you Jennifer and all for your concern. I have just got home again after my examination and another x ray. Thank God, my chest has cleared considerably. Both Specialist consultants wish to talk to me next Tuesday morning. I said to the respiratory man I do not wish to suffer such an awful experience again due to Remicade treatment!!! He said I will have to discuss that with my Gastroenterologists. A big conumdrum !!!
I am now arranging to pay for weekly domestic help at home as it will be some time before I am really on my feet again. It is good to be home, chilling out.
Love xxxxxxx
 
spingirl

spingirl

Oh Honey - I do hope too you never have to go through this again! Thank you for sharing your story. It helps all of us to understand what is going on and what can happen. Doctors just don't always really punctuate the complications that can arise. Sending prayers your way. keep us posted.
 
Honey

Honey

Moderator
Staff member
Hi spingirl,
Yes, you read about all the awful side effects of Meds, and think that is the exception rather than the rule! And so it is most times, unfortunately I went for it big time~ lung infection, and thought I would never recover. I am home and will employ domestic help, as I will need to take baby steps now to get my strength back!!! I am still in pain but less breathless. I brought my sense of humour to the ward and had the patients and doctors all laughing. I am now being treated as an inpatient, but living out. My appointments are fast and frequent. I am being treated as a V.I.P. although I would prefer to see less of them. Bless them for being such caring Professionals!!!!!
Thank God, I am blessed with a great ' Joie de Vivre.' It is hard going at times, I cry but I also laugh!! Laughter is good for the soul.
Thank you all for your support: it means a lot to me!!!!!!
:rosette1::mademyday::rosette1:
 
M

michelle222

I am new to this forum. I just read your posts and I am so sorry that you had to go through all of that, but am very happy to hear you are home and resting. It's wonderful that you had the patients and doctors laughing, that must have been so nice for them....particularly considering laughs can be few and far between in the hospital.

I will pray for you to have a speedy recovery.
 
spingirl

spingirl

Ahhh...we found each other for a reason... Guess what my doctor just discussed today? The dreaded Remicade!!! I am not sure I will do it or not. It all depends on the surgeon and if she will agree to do a resection and leave my rectum if the Remicade can help my rectum not be all ulcerated. We shall see. She told me no 2 days ago and that it would not likely get better with medication but GI said he would talk to her. I just find that very interesting...not sure what to make of it. I would much prefer a resection (for a stricture) than a total collectomy!!! I don't want to end up with a lot of complications either. I don't know what the right thing to do will end up being but I did feel very informed and prepared today and I owe that all to this forum! I was totally my own advocate today and I am feeling pretty damn proud of myself for raising these ?'s. Couldn't have done it without all of you!! Honey - you are right about the laughing. Sometimes when I am crying...and telling my husband about what happened...I will sometimes just break out into a belly laugh. Then back to tears. It kind of scares him. He thinks I'm going insane :))) Maybe I am...?
 
Honey

Honey

Moderator
Staff member
Hi there,
I am a little stronger today and managed out. Enjoyed the buzz of the continental , Christmas market. I now have a cough but hope this is the last of my infection clearing. I speak to my hospital Consultants on Tuesday morning. I shall see what they have to say. I am being well looked after.
 
Honey

Honey

Moderator
Staff member
Hi there,
I have been to the hospital and had a long discussion with my Consultant. It seems all the results of my lung investigation are not back, and it may not have cleared up entirely. I am off Remicade until results are through but expressed my concern about restarting a treatment that made me so ill!!!!!! I have been asked about Steroid treatment instead long term?
The emergency Doctor I called out weeks ago mentioned LDN as a future treatment, with no side effects. He had been to a conference in Chicago. I told my Consultant about it, so he said he would investigate. I see a number of you are on it. Does it work well for CROHNS?
:)
 
Honey

Honey

Moderator
Staff member
Hi Jennifer,
and thank you. Unfortunately, I have used up all my options of meds: Aza... caused me to have Pancreatitis, Methotrexate injections did nothing to reduce the inflammation, others just made me throw up. I am now on Steroids, Prednisolone, as I have a new problem of weakness in my limbs, now my hands. So, I will taper this over two years I believe, down to one mg. to alleviate these symptoms. Not much of a choice really. I was told by my emergency doctor ,recently, that LDN will be licensed in the U.K. in 2015. I am wondering if this might be the answer to my predicament!!! any info from you all would be appreciated. I shall do some research.
 
Jennifer

Jennifer

Adminstrator
Staff member
Location
SLO
So you've tried Humira and Cimzia? Did you and your GI talk about maybe trying 6MP since the Aza didn't work out or do you fear you'll have the same problem? Allopurinol can be added to lower doses of 6MP to help make it less toxic (that's what I'm doing currently). Mesalamine meds aren't the best for Crohn's but can help some (at least with surface inflammation). There's also Azulfidine/Sulfasalazine (didn't work out for me personally but it has helped other people on the forum. I don't think its prescribed much anymore because of all the newer drugs out there plus I believe its also topical like Mesalamine but I haven't done much research on it). Is Enteral Nutrition a possibility for you? I wish I knew more about LDN to share but unfortunately I don't.
 
Honey

Honey

Moderator
Staff member
Hi there, Jennifer,
I do not know what 6MP stands for, but I am sure I have used up all my options. I react very quickly to ingredients and have to stop, or when I think I am doing O.K. I am not!! As far as diet is concerned, I have always eaten healthily as I enjoy cooking, but of no avail. I just have to be sucking a fruit sweet, and at its worst, IT sets me off running!!!! My Crohns is severe. The Prednisolone for my weak limbs is keeping it at bay at the moment. I am on 5mg tapering down over the next two years. I am not happy about steroids but what can I do? My hands have become weak after my hospital stay, a new problem, and lots of pain~ it is hoped Prednisolone will alleviate this!!!
Thank you for the info, I shall read up about LDN. It will be licensed here I am told in 2015. My consultant is very understanding so I am allowed to make choices. He visited me in hospital even though it was not his department. I am impressed by the care I am receiving. If only there was a cure for Crohns!!!!!!!
 
Amaze

Amaze

Location
New York, NY
Honey, i know we dont know each other well but your in my thoughts and prayers. You said that you have difficulty eating? When i was in your state eggs was the only thing that helped
 
HARVinTX

HARVinTX

Honey,

Just read your month long ordeal and hope you are feeling better!

I saw you were on 5mg of pred. That is near the natural amount of cortisol, a hormone similar to a steroid, and the body stops producing natural cortisol in the presence of prednisone. The cortisol naturally occurring equivalent is approximately 3-5mg of pred so being on 5mg would not seem to be an efficacious dose but rather a tapering dose to allow your body to start producing cortisol again.

Thanks for the tip on Low Dose Naltrexone. I had not heard of it and just did a quick review and would like to know more about study data that supports it's ability to aid our immune system. I work in pharmaceutical research so I will definitely read more about LDN.

There is another drug that is currently out for RA, UC and PsA and AS called Simponi, which is expected to get approval for Crohn's. It is also an anti-TNF like Humira, Remicade and Cimzia. I was told by a nurse practitioner that it is fully humanized biologic based on the same molecule as Remicade. I just had a second reaction to Remicade so had to come off. It did work best of any med for me to date and I will be able to try Simponi once it gets approved for Crohn's so I am hopeful.

I start Humira Friday but I am so severely strictured that I think I will be heading in for a resection soon.

I hope you have a full recovery soon and get on meds that help!

Darin
 
Honey

Honey

Moderator
Staff member
Hi HARvintx,
Thank you for the info. I am now on 6mg Prednisolone as it is helping this weakness in my limbs, especially the pain and weakness in my hands. It is also keeping my Crohns symptoms at bay, for the moment!! Are you saying that Prednisolone is the relatively safe one to be on long term? I have been asked if I will stay on steroids long term, instead of going back to Remicade? I know that worked for a while ,last time I was off Remicade. I do not wish to suffer breathing problems again ! I am still struggling a little with breathing[ on the stairs]. Await further test results. Tired too, not that strong too.
Any further info will be welcome. Thank you, I hope you are reasonably well yourself?
 
HARVinTX

HARVinTX

Honey,

There are definitely risks with long-term use of steroids but things to consider are dose and length of treatment. You appear to be on low dose therapy and the best person to discuss risks versus benefits is your physician.

I found an interesting article on use of prednisone in Crohn's, which you can read here: http://www.practicalgastro.com/pdf/February08/PG_Feb08IrvingArticle.pdf

My suggestion to all patients is to learn as much as they can about their illness, the treatments for their illness and the risks/benefits of any treatment (or non-treatment).

You well know the risk of immunosuppression (from the Remicade) so arm yourself with information so know what areas to discuss with you physicians and any other health providers you work with to manage your illness/symptoms.

Good luck!
 
Honey

Honey

Moderator
Staff member
Hi HARVinTX,
Thank you for the prompt reply. I do know all about side effects from all meds I have been prescribed to alleviate the Crohns symptoms. Steroids, viz. Budesonide only worked for about 7 months, keeping me well, and then I quickly deteriorated! I then only had one choice, and that was Remicade infusions. It had worked well for almost a year, until I experienced those scary breathing difficulties and excrutiating rib pain. Then , of course I was in hospital. It seems to me I can only enjoy today , Prednisolone helping the Crohns, but that could all change. That is scary: what comes next_ surgery which may alleviate the symptoms for a while, and then back to Remicade. That is what my Consultant told me some time ago!!!!! I shall read that site you told me about. I have a very positive outlook on life , laugh a lot, cry behind the scenes too, but with God's help ,and the support of an excellent Consultant I will continue to weather the storm. I hope you are well. Thank you once again for your support and info: very much appreciated. Best wishes.
 
Honey

Honey

Moderator
Staff member
Hi HARVin TX,
Thinking of you as you await surgery ,and deal with how you are feeling just now. It is not easy : such a fickle illness, unlike others, as the goalposts keep moving !!!!!!
Best wishes. Please keep in touch and let me know how you are doing .
:bigwave::getwell:
 
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