Need some good thoughts and advice

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tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/26/2010 4:57 PM (GMT -7)   
Hi everyone! I began posting here not too long ago after I was diagnosed with crohns disease. Today one of my fears happened and I woke up at 5:30 this morning to my mom telling me my brother was in the hsopital with severe abdominal pains. I get up rush to the hospital and he is having exactly the symptoms I would display when I would have one of my all night flares  before I was diagnosed. Exteremley painful cramping. The kind where you beg for it to stop or beg God to kill you. (not that you really wish that mind you but I know you guys get it). He was vomiting and having cold sweats but no fever. My first instinct was to yell at him because he had been in this kind of pain since 6:00 am on friday. They do a CT and find inflammation and no obstruction but his colon narrowed slightly where the small intestine meets the large intestine. They are keeping him overnight just to keep an eye on him and make sure he does not spike a fever. When I left the hospital at 6:00pm this evening he was feeling much better but I stayed on him about following up with his dr and getting a referral to a GI. I am so afraid he is going to have crohns and how crazy is it that he would have issues so shortly after I was diagnosed. And he has had alot of the same mils issues I have had over the years. Multiple BMS mild cramping so this is not out of the blue. He even said he has had this before but not to this extent. This is where I need the good thoughts..now for the advice
 
I talked to him about his insurance and he is not even sure if he has prescription coverage. Of course at this point we have no confirmed crohns diagnosis and I pray he had food poisoning or something but if he is diagnosed does anyone know how you can go about asking for assistance with the medications? He is on a very limited income and honestly would have a hard time managing the copays assuming he even has insurance for that. Does anyone know the procedure to go thru with the drug companies? I really just want to be proactive and feel like I am doing something to help and hopefully if he needs meds we can have all of our ducks in a row.
 
On a side note today my crohns was a true blessing because I was able to talk to the drs at length about his symptoms their similarity to mine and also clarify some things for my brother. For one thing the general surgeon came in talking about 'exploratory' surgery to check the bowels because they could not tell from the ct if there was a blockage. He also said he was worried about a condition where the bowel folds in on itself and it kills part of the bowel. He was talking about his white blood cell count so I asked how high was it. Like elevated or completly spiked like he had an infection. The surgeon told me well elevated but that is not normal. Ah but here is the thing if it is crohns and he is in a flare his count will be up DUH. Mine has been elevated since last year and obviously I don't have a blockage cause I am still here. I am all for surgery if he needs it but geez he is already on a limited income and you want to put him out of work for weeks? So the other option was stay and see if he spikes a fever. The doctor was listening to him and he said he didn't hear the gurgling he would expect a section of his colon had colapsed and with him being in that kind of pain for 24 hours he would have expected him to have a fever. So anyway he still at the hospital and feeling much better. Pain is resolving and he will probably be able to come home tomorrow. I was totally ok with the wait and see as long as he was in the hospital where he could be monitored. hopefully he will be able to eat first thing and they can see if his pain begins again. Oh and they also have him on flagyl in case of bacterial overgrowth and some antacid meds for the acid in his stomach. He does have pretty bad acid reflux.
 
Sorry for the long post and I feel like I am rambling now but it has been a long day!
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/26/2010 6:53 PM (GMT -7)   
I've no advice for you, as I'm not America and am lucky to have no experience with insurance, but here's a hug for you and your brother.

*hug*

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 6/26/2010 7:42 PM (GMT -7)   
I hope your brother recovers fully, with no more bouts of tummy problems.
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...


grayeyedblonde
Regular Member


Date Joined Jul 2008
Total Posts : 383
   Posted 6/26/2010 8:51 PM (GMT -7)   
If it does turn out to be crohn's, they would probably start him on prednisone. It is VERY cheap so that shouldn't be a problem. Flagyl also is very inexpensive.

Almost all drug companies have some kind of patient assistance program. There are companies that will do it for you for a fee, but it is very easy to do yourself. Be very proactive with the Dr and find out what kind of maintainence med they are thinking about. Contact the company that makes it and they will send you (or the Dr, can't remember which) for the Dr to fill out. It can take a couple of months to get approved so be as proactive as possible.

I hope all works out and sending best wishes your way.
Dx'd w/ Crohn's in 1979 at age 13. Bad flare 2008 but no health insurance so I dealt with it. Colonoscopy in July 2009 caused a perforated colon, emergency bowel resection. 2 fistula's, perianal and perivaginal.

Humira, probiotic, a multivitamin, calcium, magnesium, zinc, and fish oil. I also take Tramadol 50 mg and Klonopin (for anxiety) as needed.

Life may not be the party we hoped for, but while we are here we might as well dance!


DaveF
Veteran Member


Date Joined Jan 2010
Total Posts : 1109
   Posted 6/27/2010 7:13 AM (GMT -7)   
HI Greyblonde
I am in the US and am prescribed 500 mg Pentassa capsules. At 8 cappsules per day it is like $500 or more per month. I am seeking alternatives cause the cost is way too much. I am sure I would not qualify for financial support.
Do you know anything I do not? I bought from Canada but they came as tabs not capsules and my doc says I need capsules. BY chance do you know something I do not? Any advice is greatly appreciated?
Thank you in advance for any advice
David

Symptoms since I was 15 (now 50), 2 “definitive” IBS diagnoses but no treatment except “eat more broccoli, you are not getting enough roughage"..lol, CD in small bowel diagnoses with Pill Cam 06/2010, Kapidex 60mg, Prednisone 30 mg (tapering down over the next couple of months), Pentasa 4,000 mg, Amitripyline 10 mg, SCD, Freeda  - Multi Vitamin  & 2000 UI D3,  Melatonin 9mg


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/27/2010 7:25 AM (GMT -7)   
Just wanted to send good wishes you and your brothers way. Since he is in the hospital it is too bad that they just don't do a colonoscopy while he is there. Sounds like Crohns to me especially with what the saw at the TI and Cecum area, the most common place for Crohns to show up. Sorry! Hugs to you both!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/27/2010 2:06 PM (GMT -7)   
Thank you everyone. I was able to get back this morning in time to catch the GI on his case. He said surgery was no longer a concern as he is responding to treatment so that was really good to hear. They are keeping him again tonight. He feels much better today and has been able to hold down a liquid diet and his white blood cell count is easing its way back down. . I will know more tomorrow when we talk to the dr but the GI said that he wants him to follow up for a colonoscopy. I am with nanners on this one. He is already there and he was emptied out. Seems that it would have been easier on my brother to do it at the hospital. But what do I know?
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/28/2010 2:27 PM (GMT -7)   
My brother was discharged today. He follows up with the GI in 2 weeks. The official dx they had on his papers was diverticullitis so I am keeping my fingers crossed that is what it is. I kno that it is not a barrell of monkeys either but financially I think it will be easier on him. As it was his antibiotic was over 100.00. He had a barium enema this morning and it showed  where the pockets of infection were. We should know more in a few weeks. He feels much better so that is a blessing. Thank you everyone for your advise and thoughts.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen

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