Husband in hospital for last month with c-diff and crohn's

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PV
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Date Joined May 2006
Total Posts : 1177
   Posted 4/14/2008 2:04 PM (GMT -7)   
I used to post in the UC board, because for the past 5 years, we thought my husband had ulcerative proctitis (UC confined to the rectum). In early march, he started having some diarrhea, and his usual UC medications for proctitis, didn't make him better. Doc ordered a stool test, it came back positive for c-diff. Doc put him on oral vancomycin, and he still didn't get better, and we had to admit him to the hospital on march 19th (he's been on vacomycin since March 17th, and is still continuing).

At first, they did 2 sigmoidoscopes, and found inflammation that they thought was consistent with c-diff colitis (biopsies were mixed between c-diff and UC inflammation, so they treated both (lialda, and vanc), and that it would resolve with the vanc. However, he wasn't getting any better, so they did a full colonoscopy and found that my husband has severe chronic crohn's disease starting in his transverse colon. They don't know how much further up it looks that bad (doc used the word hamburger meat).

They started him on 120mgs of IV solumedrol (40 mgs 3 times a day), last Tuesday (April 8th) - so today is the 7th day of high dose steroids, and put him on a clear liquid diet. They also gave him his first infusion of remicade on Thursday, April 10th. He's also taking elavil, cholestipol, Lialda, Canasa, FloraQ and Vancomycin.

So far, the only improvement we've seen is his cramping is diminished and lesser in intensity and that his diarrhea is not as frequent. However, his D is still very watery, and looks like it has stool mixed with lots of blood. He's currently still having some low grade constant discomfort, though he's not asked for Dilaudid for about 3 days now. Also, he's now trying a full liquid diet (ie. ensure), and whatever soft foods he can tolerate (not much at all). He's getting Peripheral Parenteral Nutrition through IV and some saline as well. The doctors say that they don't think he's going to need surgery (CT scan showed no air pockets, etc - just pan colitis, and didn't really show any small bowel involvement).

Here are my questions, being new to chron's, and incredibly frightened by our experience so far:

1.) How long is it going to take for him to get better? Is recovery from a flare always this slow? He's been on high dose steroids for a week already, and he's now on remicade - and still not showing remarkable progress. In the past, when we've used steroids, it's been like magic. This time not so. Any insight/encouragement would be appreciated.

2.) How long does remicade usually take to work? I know it can take sometimes up to 3 months, but what's the median time frame?

3.) I don't think my husband will do well at home without the IV supplementation if I were to bring him home soon. If by end of April he does not show significant improvement, and we can't bring him home, is it time to start talking about surgery?

Please help - I'm very worried for my husband, and scared that of all the drugs that are being pumped into him, and even more scared that none of this seems to be helping. Any insight and/or advice will be greatly appreciated.

Thanks,
PV

Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 4/14/2008 2:23 PM (GMT -7)   
I'm sorry you are having to go through this, it must be very frightening. I think especially with it being your husband. I know the one time my husband was very ill, he seemed to shut down and just become very stoic about the whole thing. Not very easy to deal with for a woman who wants to know everything that is going on.

Did the doctors say anything about any inflammation? For me the high doses of IV steroids have always worked very well except when the inflammation was from scar tissue. I was hospitalized for about 3 weeks on high steroids and TPN and nothing was working. I did end up having to have a resection because the inflammation was from scar tissue. Of course this was before they did stricturplasty. I'm not on Remicade and have never done the typical Remicade infusions, even though I have tried it, but I do know that it take time for it to kick in. That is why they usually use the steroids until the other meds start to work.

I hope the doctors can figure out the right combo of drugs soon to help get things under control soon, and I'm sure someone will be along shortly who has more knowledge about c-diff and Remicade than I do. I'll be keeping your family in my thoughts.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/14/2008 3:03 PM (GMT -7)   
Hi, and I'm sorry for what all you are having to deal with. Yes, it all can be very scary.

I don't think anyone here or his drs. can answer your first question....unfortunately...

2. You need to give the remicade some time. He should have his first 3 infusions in 6 weeks, so hopefully after the 6 weeks, you will start to notice some improvement.

3. In my opinion it is too soon to start talking about surgery. By the sounds of things, he has a lot of bowel involved, and you don't want to go cutting all that out, if you don't have to. He can go home on the tpn, so you don't need to worry about that. Can he take flagyl and cipro? If he can tolerate those and they don't interfere with his othere meds, I would ask about starting high doses of those. My crohns responds well to flagyl.

Hang in there. Please keep us updated on how he is doing.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/14/2008 3:49 PM (GMT -7)   
Thanks so much for replying. My husband's upper part of the colon is involved (mid transverse colon and ascending colon) and there maybe (don't know yet), some terminal ileum involvement - the rest is quiet in terms of inflammation now. A surgeon has been following his case, and said that if surgery was needed, he would have to get 2 stomas (one for his stool from the small intestine), and the other for the colon to weep into (mucous). And after things healed up and the crohn's flare is under control - they'll put the 2 back together, and no stomas.

I do want my husband to avoid surgery. He's on PPN (Peripheral) and he's starting to add foods back into his diet - his cramping has somewhat diminished, he's not taking any pain medication (but is going to be asking for something that's less strong and addictive than dilaudid, since he doesn't feel his pain right now warrants dialudid). He's however, very wary of eating. Today he's had, one can of vanilla ensure, a small bit of rice, one grilled chicken breast, and a slice of white bread. For dinner, he's ordered one hamburger patty, little bit of sphagetti noodles, and a slice of white bread. So I think by mouth he's taking in today about 800 calories, which really can't sustain him at home. The plan right now is to see if he can tolerate more foods by mouth, and we can get him off the PPN, and also see if he can keep himself hydrated.

I have a job that involves travel, and it's just my husband and me. As it is, I've already taken quite a bit of time off work. How can I take a husband home who needs constant care, and keep down a job? His energy is horrible - and he has tachycardia from the stress of being sick. He's been bedridden for the past month really. I'm hoping that by the time he gets discharged from the hospital that he's able to at least walk around a little bit and take care of himself a little bit - I can cook and put meals in the fridge, but I need him to be able to at least microwave it, and take his own meds.

Our lives were so normal before this started last month - he had regular bowel movements, that were well formed - no constipation, no diarrhea, no pain, no blood. All of a sudden, here we are. I'm so scared that we'll never again return to a normal life. Do you guys mostly have a normal life, or does crohn's just take over, and you can never enjoy life again?

I have a few more questions:

* The doctor said when he did the colonoscopy, he didn't attempt to get past the inflamed area in the transverse colon, because of risk of perforation, and that he has inflammatory crohn's, not fistulizing crohn's as far as he could tell. So, we don't really know if he has any strictures. Should I ask the doc to look again, to see if maybe that's what's causing him problems? He's still bleeding - do strictures bleed, or just cause pain? His pain is just low grade discomfort, and occasional low grade cramping, especially while eating.

* Would a CT scan show strictures?

* Does he have what you'd call steroid refractory Crohn's? We've seen some minimal improvement, but he's very far from normal after a week on high dose steroids. He's had some reduction in pain and cramping, and some reduction in frequency of D. He still has watery D with blood and an uncomfortable feeling persisting in his belly along with some cramping, and some tachycardia, and very low energy.

* In your opinion, what should my husband be able to do before I can take him home? Eat foods and keep himself hydrated, and have some energy to take care of himself (shower, shave, heat up foods, walk around the house to get himself stuff, etc)? How do I know he's well enough to come home?

* If he doesn't get to that point, and he needs to come home with IV nutrition, would I have to ask for a home nurse or something?

I know this is a long post, but I am so scared, and I don't know what I need to do or what to expect. I've never seen my husband so sick, and I keep waiting for him to get better, so we can go home, but all we've seen so far is very minimal improvement. Please tell me it'll get better - I'm really afraid that we've lost our lives to this disease, and we will never be happy again.

PV

belleenstein
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Date Joined Feb 2007
Total Posts : 1010
   Posted 4/14/2008 6:13 PM (GMT -7)   
What are the docs saying about the c-dif? I'd be worried about to what degree the infection is complicating his recovery.
Belleenstein:

30+ years living with Crohn's.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/14/2008 6:24 PM (GMT -7)   
Hello PV,

Oh this is a lot to deal with! I am so sorry you both have been through so much. When you have been hit with such a disabling blow, it is often hard to imagine that you will ever come out the other side. I think it is especially hard when you haven't had bad health problems to speak of. I was quite healthly and then BAMB! I was very ill for 4 months and sloooowly recovered over another 2 months.

These long serious illnesses knock you down to the ground and turn your head around in circles -- but please, please do not dispair. You must keep open the real possibility that he will get better and you will have a life again! It is normal to be sad and even to grieve the loss of health and the loss of your life as you knew it. But remember that although your life may be different for a while or even long-term, it could be even better in its own way! I am much closer to my family now, and and so very happy for that!

It sounds like he is making slow improvement. I am happy to hear he is easting what he is! His progress may be slow but the key is whether he is going in the right direction. Keep adding up the little steps forward he has made. You may suddenly see that they add up to something real. Healing of this type takes time, unfortunately. Once the drugs kick in, his intestines can start healing. I find making plans keeps me focused on the positive. For example, you might talk to the hospital's nutritionist and your Dr. about what to do when he gets home. You will be able to increase his nutrition as he improves and you need to know the best way to do this -- supplements, etc. Also, what is a good set up for him when he gets home (furniture, comfy chair). Maybe sign up for NetFlicks.

As for caring for him when he comes home, please lean on your local church. Most have ministries for this very situation. Also, many hospitals have social workers who are very familiar with services (free and paid) that are available in your area. Is there family that can come in to help? I had to go live with my sister for many weeks because I live alone.

Please let us know how things are going!

Isaiah 41:10
So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/14/2008 6:40 PM (GMT -7)   
Hi I would like to say that you need to put some of these questions to his Dr. as far as home care if needed the head nurse or Dr. will go over this before he is released at least that is what they did with me. I also seen a nutrionist at the hospital while I was there. I had surgery and I was able to wash and look after myself as far as putting something in the Microwave. Try to put some of these problems in your Dr.s hands is he under a surgeon"s or GI's care. Life does improve for us crohn's people. Best Wishes and hang in there. Keep in touch and let us know how things are going. lol gail

chroniemomx2
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Date Joined Apr 2005
Total Posts : 2346
   Posted 4/14/2008 6:42 PM (GMT -7)   
When I came home from my first hospital stay, I was so weak, and sick that we had to move in with my parents for a few months. I was totally exhausted just to shower in the morning let alone be able to take care of my 4 and 2 year old! I really couldn't do much of anything besides care for myself, and I didn't do that very well, but little by little he will get his strength back.

I might be inclined to stick to the liquids longer. A hamburger patty seems a little rough to me right now, but that is just my opinion....I would stick with the ensure, protein shakes, and lots of liquids for maybe even a couple of weeks.

Forget the 3 meals a day, I would see if every couple of hours, he would drink a can of ensure or a protein shake. I think he could get more calories in him, and it would be easier on his gut than regular food would.

Yes, life will get back to normal. I now work part time, and also work out, and keep up with the kids also who are 7 and 5 now. Life is good! So, hang in there....this too shall pass.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/14/2008 6:53 PM (GMT -7)   
Thanks you guys. The docs think his c-diff infection is completely under control. They still have him on oral vancomycin 250mgs4 times a day just to make sure the spores don't hatch and take over again. So, they're fairly certain they have c-diff completely under control.

As for the rest, the doc just came in for his daily consult, and he says that in all his 15 years of experience, this is the most severe inflammation he has ever seen. He's going to leave my husband probably for another week on the IV solumedrol, and says he sees positive progress, and that he's headed in the right direction. However, of course, just like everyone else, he has no idea if/when things will ever go back to normal again (ie. remission).

The doctor is hopeful that by next week, my husband will be well enough to go home and recover the rest of the way from there. I'm hopeful for that too. He says his blood work looks decent (his hematocrit is a little low, as is his RBC count and hemoglobin), but that it's not going down and is keeping constant where it is, and that whatever blood he's losing is eventually going to stop, but that for right now, his body is coping with the blood loss. He said he also hopes that by next week, my husband will start forming some stool, instead of the really loose watery diarrhea he's having today. I asked him about surgery, and he says that he think it's highly unlikely he'll need surgery, unless he forms strictures and scarring during the healing process that leads to an obstruction. The doc says that as long as he takes small steps forward, we're heading in the right direction, and that we'll eventually get to remission. I sure hope so.

I asked him about fosamax or calcium supplementation for my husband, and he basically said that he wasn't worried about pred side effects right now, because he hasn't been on it for a long time. If he ends up needing pred long term, he'll look into that. So, for the time being, we're just going to have to hang in there and hope for the best, and that my husband will recover from this.

Thanks so much for being such a caring group of people, who have been so fast and prompt in giving me such good advice and support. Unfortunately, neither of us have any other family (I'm from India, and don't have other relatives or parents here), and my husband is an only child and lost his parents a while ago. So, support is hard to come by. Our friends have been great, but it's been really difficult for me to go home to an empty house and face another night filled with really bad thoughts. I've been thinking about making an appointment with my doctor and asking about some non-habit forming anxiety meds to take the edge off - right now I'm an emotional mess.

I really really appreciate you folks. Thanks so much. I'll keep this thread updated with how my husband is faring. Once again, thanks!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/14/2008 7:23 PM (GMT -7)   
Thanks for the update! It certainly sounds like your husband is going in the right direction! That is wonderful. I think what you are hearing from the folks here is that it is normal for healing to take months -- this is something most people haven't experienced before so they have no frame of reference. Crohn's people often just don't heal as fast.

As for your own self, yes, you must take care of yourself! How is your nutrition? Don't feel at all guilty about turning to meds during this time. Make sure you get plenty of sleep. Tylenol PM puts me out. A marriage is about being 2 halves of one whole, and this is your time to care for your other half. So you must take care of yourself in order to be able to care for him too.

Another support group may be a local CCFA chapter (Crohn's and Colitis Foundation). The website is www.ccfa.org. I don't know what area you live in, but the hospital's social worker may very well know of churches and non-profits who can help as well as emotional support groups for you.

Take care!

broomhilda
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Date Joined May 2007
Total Posts : 1488
   Posted 4/14/2008 8:25 PM (GMT -7)   
PV- You have already crossed the first hurdle with the C-diff being under control. The Remicade will slow the healing process only because it suppresses the immune system. However, it is a wonderful drug for some of us crohnies and it sounds like your husband is tolerating it well. It will take some time to kick in and also may take some time to get him on the right dosing schedule as each of us are unique. While the antibiotics your husband is on is necessary this too may be causing a slower heal by aggrevating the Crohns. I'm glad to see he is on the Flora Q probiotics. The probiotics are a wonderful support supplement especially when taking ANY antibiotics.

I like CrohnieMom's suggestion about having the ensure every 3 hours or so and sticking with the liquids a little longer. As long as his calorie intake is within normal range his doctor will be pleased. In my opinion, I wouldn't touch a hamburger with a ten foot pole in his condition. Chicken & fish are much easier to tolerate. If he MUST have beef, I would try mashed potatoes with a fat free beef gravy.

I am sure this has been a devastating experience for you and I think some anxiety meds are a good idea for you right now. Your husband's body has had a massive fight on it's hands for several weeks now and it will take some time to get his strength back. Once he is home, add foods slowly to his diet so you both can learn what his trigger foods are. If he can not tolerate any fresh fiber foods you might ask the doctor about a fiber supplement. This will help bulk up the stool as well.

It's good news that he doesn't need surgery right now and your life will return to a normal routine soon enough. Keep reading the posts here on the forum, it's a great way to educate yourself about his disease. Just remember that each of us are different cases and one person's symptoms do not necessarily coincide with anothers. Trial, error and education and plenty of rest, love and support is what he needs most. Good luck to you both!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Sniper
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Date Joined Feb 2004
Total Posts : 6518
   Posted 4/14/2008 8:54 PM (GMT -7)   
PV, hopes and prayers for you and your husband. I know its hard right now but hang in there. Sounds like the doctor is on the right track..
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.


FitzyK23
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Date Joined May 2005
Total Posts : 4219
   Posted 4/14/2008 9:56 PM (GMT -7)   
I'm also wishing your husband a speedy recovery and some sanity and help sent your way! Please don't be afraid to ask for help either. If friend offer, say yes... could you pick up these groceries, or bring me a meal, or vaccum my house, or get my oil changed? Whatever it is you need done now but don't have time to do, thats what friends are for. They feel helpless seeing you go through this too and helping you will make them feel better and ease your load! If you don't have friends that can do this check with your local high school or college. Most have community service programs. My undergrad had students help out a lady with a husband with a potentially life threatening illness. He had long term hospitalization and they had kids. Our school sent volunteers to take the kids on field trips, tidy up her house, or whatever else she needed for the day. But, if she hadn't called the school and asked she wouldn't have received those services.

HUGS!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


wanthealth
Regular Member


Date Joined Feb 2008
Total Posts : 78
   Posted 4/15/2008 9:30 AM (GMT -7)   
PV,
I have taken Ensure before as a supplement and found that it always gave me diarhhea. Now I take Breeze by the makers of Boost (Novartis). It's lactose free and fat free and provides 250 calories. I tolerate it well. It might be worth considering for your husband.
I hope he starts to improve soon so you'll both have some peace of mind.

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/15/2008 9:45 AM (GMT -7)   
Also, as long as he is on vancomycin, diarrhea may continue to be an issue. It always has been for me. Diarrhea is a big issue for sure, but it's the healing that's most important and the diarrhea alone may not be a good indicator of how that healing is going. Once the Remicade kicks in, as long as the C-dif is not an issue, the diarrhea will most likely ease.

Sometimes in these times of seemingly endless misery it is helpful to stay focussed on the short term. Try to focus on each day and take comfort from whatever positive you can find in that day. There will be a time soon when you can plan into the future.

hugs from the heart
Belleenstein:

30+ years living with Crohn's.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/15/2008 10:12 AM (GMT -7)   
Thanks for the advice. I've asked my husband to stay away from hamburger patties and to stick to chicken and fish, and I'll keep encouraging him to sip on ensure through the day. Unfortunately, the c-diff is dangerous enough that I'm pretty sure they won't take him off the Vancomycin anytime soon - so he'll have to heal despite the antibiotics. Also, he has very severe side effects with Flagyl, so they can't use that for either the c-diff or for treating CD. He's had D twice this morning, and he thinks it may be more brown than red today. Of course, it's so hard to tell if he's really actually making positive steps.

I've asked my mom to come from India and help me out when he's ready to come back home. I will also call around, and also ask the hospital about social workers etc.

I have a few more questions regarding my husband's condition:

* Have any of you had tachycardia during flares? Especially in the morning hours, my husband seems to have tachycardia - his heart beats like at 120 beats per minute if he's doing nothing but sitting up in bed. It seems to settle down towards the afternoon, and comes down to below 100. What do you do to try to control it?

* For those of you on remicade, how long does it normally take remicade to kick in and to see significant improvement? He's approaching one week since his first infusion. I know it's different for everyone, but I was wondering if there was a median number of days by which most people saw improvement.

* My husband has what he calls an "unsettled feeling" in his belly almost constantly. He says it's not pain, but it does prevent him from feeling comfortable. This also stops him from sleeping well at night. He also says he feels "gurgling" especially after meals. What would you guys recommend for this type of pain management? He's also got cramping, but he says on the pain scale of 1-10, they're between 1-3 (mostly 1-2), and he doesn't want to take dilaudid for that. He tried Morphine 12 hour release last night, but didn't do significantly better. Is there something else that can help him with this kind of low grade pain?

Thanks for much for your help.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 4/15/2008 10:25 AM (GMT -7)   
I suspect the unsettled feeling is at least partially due to the antibiotics. If your husband is tolerating chicken etc. I would strongly recommend a live-culture yoghurt that he could eat before meals, or a probiotic supplement. He only needs a tablespoon before meals if he doesn't like yoghurt. If he does, well use it as a treat. This will definitely help repopulate his gut with friendly bacteria -- the good gets killed along with the bad when you are on antibiotics. It may reduce his queasiness and reduce the build-up of gas, which may be what's causing the gurgling.

As to pain management, I'm sure someone will come along with suggestions. I wonder, at 1-3 if it is pain disturbing your husband's sleep as much as the anxiety of being in a hospital environment and trying to cope with this major health hurdle. That, and jusst his general weakness, may also account for the tachycardia. Maybe a mild bedtime sedative might be as effective.
Belleenstein:

30+ years living with Crohn's.


nikki0294
Regular Member


Date Joined Sep 2007
Total Posts : 219
   Posted 4/15/2008 2:09 PM (GMT -7)   
I am so sorry your husband has both going on.  I can tell you from personal experience that it is extremely hard to figure out if the c.diff is causing the diarrhea or the crohns.  Usually if the diarrhea is persisting they try 2000 mg of vanco orally for about a week then lower it to 750 mg.  Within 48 hrs at that dose it should go right into remission the c.diff that is.  You can ask them if you could have him try the high dose for a few days because if the diarrhea is from c.diff it will stop at that dose.  Is he on a probiotic?  If not, you might ask the doctor about adding VSL#3.  It can be ordered via internet and has to be refridgerated and remain so.  If there is remaining diarrhea then you know it is probably from the crohns and can work on that.  I hope this works.
 
Good luck
Chris

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/15/2008 4:38 PM (GMT -7)   
I take hyosciamine for mild cramping in my stomach. It is an anti-spasmodic you take sublingualy.
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/15/2008 5:04 PM (GMT -7)   
The tachycardia is very common on pred. When I was on pred., mine was consistently over 100. I hated the feeling also...they might be able to prescribe him something for that, my pcp did for me.

Remicade...is he getting his next infusion in a week? He should be. The schedule is your first infusion, then another one 2 weeks later, and then your next one 4 weeks after that. Then you start your every 8 weeks, or 6 dependng on what the dr. orders are. If the antibiotics are the reason for the D then don't expect the remicade to fix that.

Morphine does nothing for my pain...doesn't work on me. Demoral (sp?) works well for me. If his pain is only a 1 or 2 might tylenol work? There is darvocet also...

I still say that he should be on a liquid/soft diet if he is inflammed as his dr. said.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/16/2008 9:54 AM (GMT -7)   
Hi guys. My husband is now off the Peripheral Nutrition, and is only taking food by mouth. He's still on a dextrose saline drip. His goal today is to hit 2000 calories of intake, and take in enough liquids to stay hydrated. He's just doing full liquid/soft foods. He had tachycardia even before he began the pred - I think it's just the stress of the disease.

The doctors think he's clear of the c-diff, and that it's really the severe inflammation they found during the colonoscopy that's causing his diarrhea. They found no evidence of c-diff colitis, or c-diff toxins in the stool. They are still continuing vancomycin as a preventative for re-occurence of the c-diff infection, when his immune system is suppressed by remicade and steroids.

Yes, he will be getting another remicade infusion on Thursday, April 24th (2 weeks from his first infusion), and one 4 weeks after that, and then go on the regimen of an infusion every 8 weeks. I just wish he'd get better faster. Does remicade work for most people?

He said his pain was better last night - that he didn't really have much in the way of discomfort. He's had 3 bowel movements this morning (more very liquid D with some red tint to it), a little cramping before each movement, but not much in the way of discomfort afterwards. One correlation we could draw is that while he's cramping, his heart rate goes up. Also, if he's upright, his heart rate goes up. One of the doctors mentioned that since he's been bed ridden for a while (over a month) that it's very common for even small movements to raise heart rate - she suggested that he walk around a bit and sit in a chair for a few hours at least every day, and that that would aid in his recovery. So, he's been doing that.

His pain really does seem diminished, and I'm encouraged that he's eating, but not seeing a huge increase in symptoms or diarrhea - I'm taking that as a positive sign. He's tried both Bentyl and Levcin, but they don't seem to do anything for him. I'll ask about Darvocet - the tylenol was not doing anything for him. We're measuring his stool and urine output each day. I hope to see more positive signs in upcoming days. Here's a question for you guys:

- How long have you stayed on really high doses of IV solumedrol (120mgs)? My husband is now on Day 8. Has anyone here stayed on high doses of steroids like this for weeks? I think the doc plans to keep him on the IV solumedrol for a total of 14 days or so, or until he stops seeing blood in stool / starts forming some stool

Thanks,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 4/16/2008 12:22 PM (GMT -7)   
The decrease in pain is great! Unfortunately, until he gets off the antibiotic he might not have formed stools. As you know, antibiotics can cause D in people with crohns, and people with crohns sometimes have a harder time when they are on antibiotics.

That is good that they are getting him up in a chair, and even a little walk down the hall if he can tolerate it would be good.

Pain will cause your heartrate to increase. When my daughter who is 7 had an upper and lower scope a couple of weeks ago, I watched her heartrate go up on the moniter as they were inserting her iv. I asked her if it hurt and she said yes, thus the increase in the heartrate.

It sounds like he is heading in the right direction. Just keep encouraging him to do what he can and unfortunately it is going to take some time to get his strength back. Hang in there!

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/16/2008 8:28 PM (GMT -7)   
Ive never been admitted (knock on wood) but every time I get an IV I have diarrhea the next day. It could be because I was sick to begin with or it could be all those liquids. Glad he is feeling a bit better!
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/16/2008 9:59 PM (GMT -7)   
For me...it's the benzene in the saline flush they use before starting the IV and/or Remicade that gives me the D. Glad to see he's still making baby steps! Can he have bananas yet? They are a good binder for the stools...just make sure they are ripe!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 4/17/2008 8:37 AM (GMT -7)   
My husband seems to be doing a bit better this morning. He had 4 bowel movements yesterday, all diarrhea, but only 2 with slight red tints. He ate 2500 calories yesterday and drank about 72oz of pedialyte and water. This morning so far he's had to go once, again diarrhea, but he said that he couldn't see a red tint, and that the diarrhea seemed a little bit more viscous. So, I'm hoping that by the time Monday rolls around, he'll have some formed stool. He slept with a little more comfort last night as well - said he didn't have that persistent unsettled feeling - just felt a little off sometimes when he shifted in his sleep. Hopefully these are all good signs. Also, he spent about 12 hours yesterday sitting up in a chair, and browsing the Internet, or even chatting with people - his heart rate was a little up, but I think that's what he's going to need to do to get his heart rate back down.

I'm encouraged that he's eating, and that it hasn't caused him too much discomfort or diarrhea. I'm hoping today will be a better day. Thanks guys for your support. It's really comforting to be able to reach out to people who know the pain and debilitating nature that this disease can sometimes take, and knowing that life continues, that things will reach some semblance of normalcy in the future. Thank you so much.

Also, broomhilda, I bought him some bananas, but we're waiting for them to ripen some more. Hopefully within the next day or two, he'll have one.

I'll keep this thread updated until we're ready for a discharge. Hugs to all. I hope you all have a good day.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Currently in hospital for past month
Canasa, Lialda, Vancomycin, Colestipol, Elavil, IV Solumedrol 120mgs, Remicade (1st infusion April 10, 2008), FloraQ, FloraStor, Morphine Time release for pain

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