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I'm worried

E

eastcoast girl

I was diagnosed with crohn's disease when I was 18......and will soon be 46. I was actively flaring up for manI years. I was put on predisone many times. Eventually the disease led me to surgery 10 years ago. Fortunatley it turned out to be a good thing for me. Since that time I have been fortunate enough to be in remission and be medication free.

A month ago my 43 yr old husband was rushed to emergency with severe abdominal pain and vomitting. He was fortunate enough to avoid emergency surgery due to a blockage in the bowel. THANK GOD the procedure they did unblocked it. This lead to a week in hospital and extensive testing which also determined that he also has crohn's.

He has likely had it all his life, but his symptoms were always different from mine. He always chaulked it up to something he ate. It always passed within hours and he was fine.

He is struggling big time coming to terms with his new diagnosis. Mostly because the drugs and side effects are wicked. BUDESONIDE AND AZATHIOPRINE are aweful drugs. The side ecfects are terrible.
I am trying to encourage him that it will get better. I know he needs support. He needs to get out of his head.I am sure he is depressed but I don't think he would be open to more medication The mood swings leave me feeling unsure what to do or say. I hope that maybe he will reach out for support also. Sometimes I think talking to someone else Is good
therapy. I just hope I can remain strong through this tough time. I Feel helpless and anxious cause I want to help him but don't know how.
 
Honey

Honey

Moderator
Staff member
Hi there and welcome,
so sorry to hear that you have been having a difficult time. I too was diagnosed with Crohns after many years of pain and dia... It is an emotional roller coaster dealing with the drugs side effects , and the fickleness of the illness. I understand. I shed a lot of tears behind the scenes. I was on meds which did not help. I am now doing well on Infliximab infusions. Once the correct meds are found for you, it does get better. Talking and sharing on this forum helps. Best wishes to both of you. Get well soon. Keep in touch.
 
E

eastcoast girl

Thanks Honey,

I do believe it is a matter of finding the medication that works best for a person. I just hate it when a dr says this is it....you don't have a choice....you have crohn's and you have to deal with it. Acceptance is important for sure but I do feel people have choices when it comes to how they tolerate medication. SOmetimes the medication is worse than the illness. He will be seeing a new GI specialist in Nov. Hopefully this guy will be a little bit more compassionate to his medication symptoms and support him in making changes if he wants to.
 
Honey

Honey

Moderator
Staff member
Hi there,
I totally agree with all you said. Yes, you do need to find a compassionate and understanding Consultant who listens and responds to your concerns!!! I had bad reactions to some meds so held off from Infliximab infusions for about 8 months. My Consultant understood my fears and I am allowed to make decisions regarding my treatment. That is important. However, you cannot be on Steroids for ever so eventually I had to begin infusions. I am well but concerned about the long
term side effects. There does come a time when you have used up your choices! I do hope you both find the empathy and compassion you need at this time. Keep me posted. If you need to know more , please send me a message.
:Flower::panda::Flower:
 
E

eastcoast girl

I look forward to the day when they start to lower the dosages. It has only been 3 weeks. So we have to be patient and see if the side effects level out. If not I will have to advocate for him and push for the dr to try something else.

Thanks for your support and concern. We wil get through this easier with a little help from our crohn's friends....:kiss:
 
E

eastcoast girl

Hi david,

thanks for your comment. To name a few of his symptoms,
flu like symptoms
tired/weak/drowsy
not sleeping
urinating at night
nervousness
lower back pain/side pain (given tylenol 3's for this)
appetite off
Joint pain
mood changes/agitation
aches and pains
shortness of breath

Things seem to have leveled out a little better this week from last week. SO we will keep our fingers crossed that things continue to get better. It has been a little overwhelming to watch him go from no pills to 11 pills a day, and than feel the way he has been feeling.

Thanks for your support.
 
J

Jison0612

Eastcoastgirl
Those r my symptoms word for word I don't have diarrheaha or crazy bowels but just aches and pains in back and knees and shortness of breath and some tummy rumbling but more so flu like symptoms sinus pressure and the whole lot that goes with it basically I just feel completely wore down
 
E

eastcoast girl

Hi Jison,

Sorry to hear your experiencing alot of the same symptoms. My hubby is seemingly starting to improve. Hope you get some relief soon.

How long have you been on your medication? If it has been awhile maybe you could suggest to your doctor you would like to lower the dosage, and see what he says.
I wish you luck my friend.....
 
J

Jison0612

I've been off of meds more than I've been on them since being diagnosed 11yrs ago I hate going to the dr I'm always afraid of the worse case scenario so I stay away from them as much as possible I waited a year before being on any meds this time the dr started me on entocort 9mg daily which has given me my appitite back and he also put me on some vitamins and daxilant it's a acid reflux med I seem to be getting a lil better by the day but it's taking its sweet time!! I got another dr's appointment on the 10th of this month atleast ill be able to tell him I'm feeling a lot better hopefully he want wanna do anymore test or change my meds or anything but well just have to wait and see I guess. How's ur husband dealing with everything lately I know it takes a while for it to sink in I've been fighting it for 11yrs now and I still get discouraged some times but GOD is greater than my disease and any irrational fears I have so I'm gonna be okay praise GOD!!!
 
E

eastcoast girl

My hubby is doing much better. The side effects are really starting to deminish. He can lower the dosage of steroid next week by one pill.

SOunds like you are doing much better also. I think we just have to try and stay positive when it comes to this illness. The flare ups don't last forever and usually the medication is not long term. I keep reminding him it could always be worse. At least this is treatable so for that I am grateful. .

Reminders that God is greater than your illness is good mental chatter. Keep all the other garbage like irrational fears and worry away. Worry and fear is like a rocking chair...we all do it but it gets us know where. Take it one day at a time. Today you are feeling better...you have your appetite back so thats a real plus.
Keep your chin up and good luck on the 10th, just go with no expectations or worries.
 
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