New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Amarissa
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/28/2009 8:12 PM (GMT -7)   
confused  Hello,  I guess I never understood the severity of the disease.  Now it is a heartbreaking reality. 
 
 My husband has been in the hospital for 11 days now.   The pain has been unbearable.  His fever was 103.5 for six days.  This is his first experience with these symptoms and is 39 years old.  He has has diarrhea for several weeks, sometimes with blood.  He has went form 197 lbs. to 171 in a matter of weeks. 
 
The doctors have given the steriods and IV morphine, oxycodone, pantessa, IV antibiotics, all of the meds I briefly read in the posts.  After a "good day" today, we were shattered to learn his CT scan today showed increased inflamation.  The colonoscopy at the beginning of his stay leaned towards infectious U.C.  Doctors said he would have responded to the treatment by now if it was.  Although we do not have a diagnosis as yet, GI doctors are recommending the Remicade.  My husband is tired, frustrated and scared.  He does not want this drug, but I don't feel as though we have any other option.  The colon/rectal surgeon will most likely see him on Friday.  I am trying to educate myself as quick as humanly possible. 
 
What about the cancer side effect?  This is a terrible disease, but is it a trade-off for cancer?
We need to make a decision ASAP, he really is running out of time before he gets worse.
 
Has anyone had such a severe experience at the onset; if so, how often should we expect this? 
 
One post I noticed was about pink eye.  He developed pink eye in  both eyes while in hospital.  So it does make me wonder if it is linked to Crohn's. 
 
How fast your life can change!  We long for our old life, as simple as it was.
 
 

Carnival Huckster
Regular Member


Date Joined Oct 2009
Total Posts : 159
   Posted 10/28/2009 9:30 PM (GMT -7)   
Hi Amarissa,

Sorry to hear about your husband. If it were me, I would go for the remicade as flares for extended periods of time can get dicey (not to mention painful.) Cancer is a concern, especially if the Crohn's disease is concentrated in the colon (large intestine) but less so if it is in the small intestine. The cancer risk becomes a larger factor when you have the disease for many decades, although it is always a good idea to take calcium and vitamin D, as these have been shown to help mitigate the risk. If your husband has a family history your doctor might recommend having him go for a yearly colonoscopy.

Best of luck and I hope he feels better,
CH
34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/28/2009 10:35 PM (GMT -7)   
Oh Amarissa - we went through very similar trying times last year. My husband was hospitalized for 45 days last year, with both a c-diff infection and crohn's. Have the doctors checked your husband for a c-diff infection? I ask because they think he might have infectious colitis, which can be caused by c-diff.

Also, my husband had to take vancomycin for c-diff, high doses of steroids, and remicade to get back home in one piece from the hospital. Remicade was literally a life saver for my husband. My husband went from 185 lbs to 137 lbs in a matter of a few weeks. It was crazy!

Hang in there honey. I think when doctors let the flare rage for weeks, and there's an infectious process also involved, the immune system goes completely haywire, and can be really hard to control. But my husband and I made it through, and I hope and pray that you guys will make it through as well, without any need for surgery etc. (((Hugs))).

Hang in there. It will hopefully get better soon. Also, I know Remicade is really scary, but if it works, it works wonders. Also, can they feed him through a tube? I think that'll help with the weight loss. My husband got foot drop in the hospital from those booties they make you wear to keep your circulation going, because when you're bleeding and sedentary, you can form blood clots. Make sure that they don't wrap those booties too tight around his legs - they can damage the peroneal nerve bundle especially if you've just lost a lot of weight.

I hope today will be a better day for you two, and he's going to be better each day. Please let us know how things go.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/28/2009 10:36 PM (GMT -7)   
Oh, btw, if it is c-diff, IV antibiotics will not help. Only oral flagyl or vancomycin will help.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Former58D
Regular Member


Date Joined May 2009
Total Posts : 173
   Posted 10/29/2009 4:22 AM (GMT -7)   
Yes, Remicade is a powerful drug with potentially severe side effects. I am not doing near as badly as your husband and I start Remicade next week. I have had continual rectal bleeding with every BM for about 9 months now despite trying 6MP and upping my 5-asa meds. At this point, I am ready to accept the side effects of Remicade in order to feel better and save my rectum.
"What can't be changed must be endured" - unknown

DX with distal Crohn's colitis Oct 2007, predominantly in rectum
Colozal (750mg): 3 pills 3xdaily
Cortifoam - 1 nightly
6MP - currently at 100mg and waiting for response......


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 10/29/2009 5:09 AM (GMT -7)   
Just fyi 1 in 4 Americans will die from cancer. The good thing about having IBD is that you get scoped more often they catch it at an earlier and more treatable stage.

I had the lupus like reaction to Remicade, but even with that if I could go back I would still do it again, because it lead me to MTX which did work pretty ok for me.
Really it is not that bad, and there is the alternative medication of Humira (it is another anti-TNF) shots, and seems to have less lupus like reactions with Humira.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 10/29/2009 6:41 AM (GMT -7)   
Amarissa, hope you and your husband had a decent night's rest. I just wanted to write a longer note to lend you some of our experience, since they seem similar. My husband too was very healthy, 42, and was previously diagnosed with ulcerative proctitis, and he'd had one flare up of it in 5 years for about 10 days. Other than that, 100% normal - not even a cold in all those 5 years. Then, suddenly last march, he started having diarrhea, and we though, oh, ok, another ulcerative proctitis flare - so we went to his GI, who wanted to get a stool sample test just to be on the safe side before starting him on a course of pred. The results were positive for c-diff, even though he had not been on any antibiotics.

Well, 3 days after that, he was in the hospital, severely dehydrated, and really suffering from stomach cramping, and having to go the bathroom 30 times or so a day, with nothing but watery diarrhea with mucous and blood, despite having started on oral vancomycin as soon as we got the verdict that it was c-diff. In the hospital, they took a ct scan which showed profuse thickening of the bowel wall, and they called it pancolitis (the whole colon was inflamed). He was given fluids, and they did a sig scope, where they saw typical c-dif like pseudomembranes all the up up to the splenic flexture. But they said the ulcerative proctitis (which was his previous diagnosis) was not active. But just to be on the safe side, they put him on Lialda. He seemed to improve for a couple of days, and they released him to come home.

3 days after being home, he developed tachycardia from severe dehydration, and I had to take him back to the hospital. This time, they did another sig scope, and found that the pseudomembranes were well treated, and were getting better. So, the docs did not really understand what was going on - the GI thought it was post infectious IBS, and put him on various meds to help that (like elavil, and colestipol). But he still didn't get better. They put him on 40mgs of oral prednisone, and he started to do ever so slightly better . . . but again that lasted about 2 days, and he was back to pooping nothing but blood and blood clots, and being unable to sleep at night from the cramping, etc. even while on dilaudid.

They finally did a colonoscopy instead of just sig scopes, and found terrible inflammation starting at the traverse colon (past the splenic flexure). The biopsies revealed crohn's. The doc said it was so bad that it looked like hamburger meat, and that it was the worst inflammation he'd seen in his 15 years of practice! He upped the steroids to 120 mgs of solumedrol by IV. And my husband still didn't get better. And this whole time, he was not tolerating food, or ensure. They finally put him on peripheral parental nutrition, but by this point, he'd already lost 35 lbs or so. Also, the hopsital colorectal surgeon was assigned to my husband to follow in case, in case he needed surgery. He told us that if it came down to surgery my husband would come back with 2 stomas. One for the small bowel to drain fecal matter into, and one for the remainder of the colon to weep into. He said that maybe 6 months down the road, depending on his recovery, they'd do a reconnection surgery to connect the small bowel to the colon and get rid of both stomas.

After a week on IV solumedrol and seeing no results, the GI suggested remicade as a last ditch effort before going in for that surgery. I read about remicade and was really scared of all the side effects. But my husband and I discussed this - Yes, the side effects can happen, but it doesn't mean they will. But if you go in for surgery, you are 100% guaranteed that you will have side effects for the rest of your life. So, we decided to choose the option of giving it every pharmaceutical option before opting for surgery. He started remicade on 4/10, and within a few days was feeling better.

However, on 4/16, despite being on oral vancomycin, he started complaining of some bad tummy sensations, and the infectious disease doc tested him for c-diff, and it came back positive! Because of being on high doses of steroids, and on remicade, his immune system wasn't able to fight off c-diff despite being on antibiotics. So, they put him both oral flagyl and vancomycin. He had his second infusion of remicade on 4/25. And that made a huge difference. He weaned him off IV steroids, and he came back home very weak, and with foot drop, and still not feeling great tummy wise, but tolerating solid food like plain chicken and pasta and rice.

He had no side effects from the remicade, and he continues to get his remicade infusions every 8 weeks. However, he now has a side effect from the remicade - it started only after he got down to below 10 mgs of prednisone. On the day of the infusion, he gets a fever (that tylenol can't really keep down), and joint and muscle pain, which lasts 12-30 hours (it diminishes over time). But other than that, remicade has kept him healthy.

He was able to get off vancomycin only after fully stopping the steroids (which was around Christmas last year). Since then, until September this year, he was fine. But in september he said he felt a sharp pain (which is what he complained of at the start of this whole thing last march), so we got a stool test, and c-diff was positive again. He just finished a 2 week course of antibiotics, and he's doing ok. He may have some IBS issues now from the antibiotics, but i believe the remicade is keeping his crohn's in check. However, my husband will probably always have to be on the lookout for c-diff, because with remicade, his immune system is unable to completely eradicate the c-diff, so it can come back at any time.

Remicade saved my husband from surgery, and so far has given him over 18 months of good health. I wish you two will be able to say the same. Hang in there, usually once the docs figure out what is going on, they are good about getting you well enough to leave the hospital. (((Hugs))). It was an unbearably rough ride we had last year, but it got better, and life returned to some normalcy. It agree it is hard, and I still long to go back to our life before all this started . . . but our life today is pretty normal. So, hang in there, and hopefully the sun is just around the corner.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 10/29/2009 7:51 AM (GMT -7)   
I would take the remicade.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Tried SCD, didn't work, now avoiding gluten and dairy.


Go Saskatchewan Roughriders!


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 10/29/2009 7:56 AM (GMT -7)   
Sorry you guys are going through this. I have been on Remicade for several years now and as MMMNAVY says, they watch your blood work and do regular scopes so should cancer come into play they catch it early. I am living a much better life with the meds and after all, what else can we ask for. Tomorrow is promised to no one. Hope all goes well for you guys soon...Keep us up to date.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 04, 2016 11:39 AM (GMT -7)
There are a total of 2,732,617 posts in 301,038 threads.
View Active Threads


Who's Online
This forum has 151196 registered members. Please welcome our newest member, RAmiddleage55.
265 Guest(s), 8 Registered Member(s) are currently online.  Details
summer16, reminder, Huddie, RanMan, jdcd57, Fairwind, dbwilco, Mister Mike


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer