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Crohns Disease question
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Nicolep175 posted:
I put this question under the Web MD board also but then seen this community. Hoping someone can help as I am really concerned about my Mom.

I Mom age 60 was diagnosed last year with Crohns. In the past month she has been barely eating and extremely tired to the point where she wasn't getting out of bed. She has lost 10 pounds in 2 weeks and is now 116 pounds. She is 5 ft 6 inches
My dad and I brought her to the ER 2 weeks ago where they did an x-ray, ECG, blood work and took her blood pressure. It was 80/48. They told her her iron was super low and gave her three units of blood. She felt great for three days but is now tired all the time again.
She had a CT Scan last week and was told her bowel is looped and twisted. Her doctor is putting her on Humira as he has tried other medications that haven't helped such as steroids, Sulphasalazine and Methotrazate.
For the past 5 weeks she has been on 4 iron pills daily. So I am concerned still about her iron. Shouldn't it have gone up in the time period? It is no life sleeping all the time and she is cold all the time also.
He wants to see if Humira makes a difference but has told her she is at a higher risk for an obstruction.

I feel he isn't doing enough? Should she get a second opinion or bring her back to the ER? She doesn't have a family doctor and he is going to India for 2 months next month. She doesn't see him again until May 10th

Thank you for any help.
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lbcash responded:
I am so sorry your mother is having such a hard time. She seems to have some pretty severe issues occurring. This is totally just my opinion, but if her symptoms become any more severe you probably should take her to the ER. But on the other hand an ER visit is just a short term fix and not an actual treatment plan. And since she is having such a hard time now, I would think a second opinion would be warranted. She seems that she is needing a doctor that can devote a lot of time to her now and since her current doctor is going to be gone for 2 months it would be hard for him/her to follow through with a treatment plan to get her in remission or to get to the bottom of the issue. I hope you can find her a doctor that can really help her. I know that on top of the illness that all of the doctor and ER visits are stressful as well. Good luck and I hope your mother and your family can find answers and solutions soon!!
 
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Nicolep175 replied to lbcash's response:
thank you so much for your response. I just got off the phone with her and she said today is a better day and she actually has a bit of an appetite. She is trying to eat but always feels full. I am assuming that is from the twisted bowel that not all the food is passing through.
 
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LauraLW replied to Nicolep175's response:
Hi Nicole, I'm sorry your mom isn't feeling well. It's so hard to see our loved ones so sick. I think lbcash gave you some good advice. Your mom needs someone dedicated to her care here. GIs can be difficult to get into. If an ER visit is warrented, that can be a good vehicle to get an appointment sooner. I don't think it's overstating to say that she is in a fight for her life. Time to be assertive and she may need you to be the fighter here if she is too fatigued. She is too young to feel like this and she can't let this go on any any longer. I'm glad to hear that she said she's having some better days...I suspect she wants you to not worry. Very sick people have a way of putting on a good face, saying things are better...better is code for I'm not good, but don't I either don't want to talk about it, or I don't want you to worry. Sorry to be so serious with you, I just care about you and your mom and I encourage you to take an assertive stance for her sake. I hope she feels better soon, please let us know!
 
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Nicolep175 replied to LauraLW's response:
thank you for your response also. It is now getting worse. She has lost another 3 pounds.
She has had the first 4 injections of Humira 10 days ago and has another injection on Wednesday. I called our Telehealth where you can talk to a registered nurse. We had a teleconference with my Mom and her. She recommended we see a doctor within the next 24 hours.
It is to the point now where even juice is causing her extreme pain. But she is still having bowel movements although now it is diahrea so there is not a complete obstruction but I think it is close enough to being one. She has been vomitting also but only twice in the past 2 weeks. She is afraid to eat because she knows she will be in pain afterwards. She is going to call the GI's sectretary tomorrow morning to see if she can get in quicker then May 10th and if she can't then I am bringing her to a walk in clinic.


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