my husband in bad shape, please help

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UCwifeinOK
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/26/2007 10:47 AM (GMT -7)   
Hi, I'm new. I've been reading a little this past month. My husband was diagnoised with UC a month ago.  It has been extremely crazy since.  He had only minor symptoms before scope.  3 runny BMs a day and little bleeding at the end.  Had the scope and everything changed.  10 to 12 runny BMs a day and extreme bleeding.  Up all night in the bathroom and not getting to sleep.  He has lost 20 lbs and still losing.  The doctor put him on Colazal 1500mg three times a day.  Then two weeks later put him on Pred. 60mg. 
 
Still two weeks later bleeding has slowed a little.  But on 4 days ago he passed out. Took him to the hospital and he passed out there.  All that was done for him was give him IVs and checked his blood every morning. (And had heart scans even though I told them he was passing blood.) Each day his counts went down.  We were released yesterday with his counts still dropping to 9.7.  They were so worried the day before about his numbers dropping, then the next when it still went down, they said it was because he was given fluids and it was watering down his blood.  The last three days he was there it took 10 hours for one bag to empty.  That I really didn't understand.
 
Any way, this morning he passed out again. Called the doctor, he said pain transferance.  My husband is hardly having any pain now.  I don't understand.  Do flare ups last this long? Do IVs thin your blood lowering your counts?  Any suggestions on how I can help him and encourage him?

Sienna916
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/26/2007 11:00 AM (GMT -7)   
Interesting.. First off, how long was he in the hospital? Another thing, this is a very painful ordeal (I know) I had a flare up for over a couple of months BUT it will get better! That is the important thing to remember. I would say probably what the doctor is telling you, but he does need rest and lots of it. I know sometimes its not possible, you have this, that, and the other to take care of but rest is definitely what helps. My flare didn't end because I didn't rest so I spent a few weeks in the hospital as well. Just rest, be supportive, and be there for him because he is going to need you. Especially I know I felt very depressed and even though I had family all around I felt no one understood. Hope some of that helped..

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/26/2007 11:04 AM (GMT -7)   
I can only suggest what works for me...

Avoid sugars, milk and breads for at least a week and see if there's improvement...that means no cakes, no cereals, no sodas, etc.

I hope this helps.

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
 


princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 9/26/2007 11:06 AM (GMT -7)   
What do you mean by "his counts?" Red blood cell? Hemoglobin? If he's severely anemic, he should ask his GI about a referral to a hemagologist for IV iron transfusions. Iron deficiency anemia can be the result of chronic blood loss from a severe UC flare. I'd be skeptical about the "pain transference" idea.

Yes, severe flares can last a long time and be tough to get under control, although the 60 mg of pred ought to make a big difference. I can understand how excessive IV fluids could mess with your readings. When I was hospitalized, they gave me so much, my hands and lower arms swelled up like balloons.
Diagnosed with ulcerative colitis spring 1999
C-scope confirmed UC diagnosis 9/18/2007
 
Maintenance dose sulfasalazine, back on a pred taper for first flare in years
Probiotics, l-glutamine and fish oil caps. About to start George's aloe vera juice and Mucosaheal.
 
 


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 9/26/2007 11:13 AM (GMT -7)   
 
Don't know if this helps.  Does he use probiotics?
 
My daughter is 6, I know how hard this can be.
 
Joan
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


UCwifeinOK
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 9/26/2007 11:37 AM (GMT -7)   
He was in the hospital for 4 days.
His counts are his Hemoglobin counts.
And I have no idea what probiotics are.

He has been on a pretty strict diet this whole time, but we have cut back even more.

I really appreciate your replies. I just thought he would be a lot better by now.

Wiped Out
Regular Member


Date Joined Jun 2007
Total Posts : 71
   Posted 9/26/2007 12:22 PM (GMT -7)   
My hemaglobin count was less than 9 before I was finally diagnosed with iron deficiency anemia.  I really don't know how I survived going to work during that time.  After numerous symptomatic complaints for months to my GI and family drs.(extreme fatigue, insomnia, leg pain, difficulty breathing after minor exertion), my GI ordered a CBC because I looked "a little washed out".  Sent to a hematologist and now take 3 X 325mg iron a day.  Just came out of anemia numbers on last test.  I noticed your Colazal dosage equates to 2 pills each dose.  The standard maintenance therapy is 9 pills a day, 3 each dose.  I had to be put on Entocort to control the bleeding during my last flare.  I'm still on it in addition to the Colazal.  If you don't have a hematologist, have your GI refer you to one and try to get the anemia under control.  Looking back over a year I'm still pretty ticked off at both my doctors for not keeping a check on something so easily tested.  Don't wait on the doctors to see you on the floor looking "a little washed out" before demanding help.  Best of luck to you.

 
Left-sided UC Diagnosed 2004
Iron Deficiency Anemia Diagnosed 2007
Indeterminate Dysplasia Biopsy Result 2006   
Colazal  -  3X3 daily 
Entocort - 3 daily
Nexium
Folic Acid 
Ferrous Sulfate - 325 mg X3 daily
Vitamin C - 500 mg 
Canasa - As Needed
 
 
 
 


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 9/26/2007 2:54 PM (GMT -7)   
No one will be as concerned as you and your husband are about his health. It's really alarming to me that your husband could be that sick and they sent him home, only so he could pass out again.

I'm glad you found this place. It really is important that you become educated about this illness, about standard treatments, about the various drugs, about reactions and side effects, about how to find a "normal" life amidst the chaos this illness can cause.

Your husband needs someone to get serious about this problem of his, and he needed that a month ago when he was diagnosed, and he needs it even more now. You need to scream and fight, if necessary, to ensure he gets the help he needs. For example, the two week wait to put him on pred when he was so obviously having a severe flare is -- well, I won't tell you that it's malpractice, but it certainly is not being on top of the problem. Why the delay? Wait till he's really, really depleted -- for what reason?

Get smart and get fighting for your husband's health. He really needs you now. And no longer can we rely on the healthcare system in this country to deliver what we need. We have to know what we are up against, know the standard of care, know the protocol, know the latest so we can INSIST on the best care possible.

Good luck to you and your husband. This is one of the best places on the net to start your education process!

Mitz
Sporadic proctitis since about 1985. Mother had UC, then J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Prednisone, two courses of Flagyl, then Vancomycin finally got rid of it. Symptomatic with UC after that.
Colonoscopy in 2001 dx'd left-sided UC. Was pretty darn ill at that time. Treated with prednisone, Rowasa, Asacol. Asacol not working so switched to Imuran. Three small flares since in 2002, 2005, and 2007.
Gall bladder attack 6/13; ultrasound showed stones; surgery before end of 2007.
100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression) daily.


ithurtsmom
Regular Member


Date Joined Nov 2006
Total Posts : 289
   Posted 9/26/2007 6:22 PM (GMT -7)   
 
Daughter 5, UC
Pentasa 2X2 daily
Omega 3
Folic Acid 1000mcg.
Fiber
Probiotics
 


gela
Regular Member


Date Joined Jun 2005
Total Posts : 133
   Posted 9/29/2007 3:03 PM (GMT -7)   
is colazal and pred the only things including any vitamins etc that he is on? it will get better, it's hard to find the right combination of drugs. yes, flares can last for a long time. i've had some last over a year, but most people's don't last near that long.
keep your head up, it will get better!
Diagnosed in 1999, hospitalized once.  Not responsive to meds.  Currently on 12 Asacol, , 8 ampules of Gastrocrom, 6 grams Colestid, flagyl, remicade for my UC.  Also have migraines and take B-4, B-2, for the prevention of them.
Deciding whether or not to have surgery at this time.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/29/2007 3:47 PM (GMT -7)   
UC wife in OK - Welcome to Healingwell! We're sorry you had to find us, but we're glad you did! This is a wonderful, supportive, caring community with lots of knowledge and wisdom!

It sounds like your husband is in a real bad place. This "pain transference" sounds pretty fishy! I would guess his passing out is from either anemia or dehydration or a combination of both. Since his blood counts were so low, did they start him on any iron supplementation?

I'm guessing that since you are both so new to UC, that you're in the "discovery" phase. I would recommend learning as much as you can, and asking as many questions as you can. (Get your husband to read the posts too if you can!) One book that helped me a lot: The First Year---Crohn's Disease and Ulcerative Colitis: An Essential Guide for the Newly Diagnosed by Jill Sklar. It is available through the bookstore link in th yellow ribbon at the top of the page. This book will give you a good overview of IBD.

Diet isn't going to cause UC, but what is eaten can sure make a person uncomfortable. Make sure that he is still eating a balanced diet or taking proper supplementation. The body cannot heal with out proper nutrition.

Did the docs say where in his colon his UC was located? Did they talk about any rectal meds? (scary thought, I know, but they DO help!) Do you have access to another GI for a second opinion? Sometimes it takes a couple of tries to find the right doctors for your team.

Probiotics are the good bugs in your guts. When they are depleted (as with antibiotic use - kills all bugs in the guts, good ones included) problems result.

Now that we've thrown a bunch of information at you, take a breath and let us know what you'd like to know about next!

It's great to see that your husband has you on his support team. Too often, family and friends just don't understand these issues - which makes it much harder on the patient.

I hope you're husband is feeling better soon.
Pan-colitis and GERD diagnosed May 2003
 
Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed
Aciphex, Effexor XR, BCP, Rhinocort nasal spray
Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12
 
Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.
 
Co-Mod for the UC forum
Keep HealingWell running smoothly:  www.healingwell.com/donate


Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 9/29/2007 8:17 PM (GMT -7)   
Hi UC wife from another UC wife.....I know exactly what you're going through. It is so scary and such a feeling of helplessness until you get on track. The long and short of this is what works for one does not necessarily work for another. There are a lot of different meds and unfortunately when trying one you have to give it enough time to see if it is going to help.

There is no magic pill for this disease and it is chronic. The goal is getting it into a remission and hopefully keeping it there and if and when it flares again it becomes manageable.

My husband was in the same boat as yours when I just couldn't stand it any longer. He was seeing the Dr every month and not responding to the various things they would put him on. The pain, constant trips to the bathroom and fatigue from not getting any sleep at all due to the constant bathroom trips is just so rough. Weak, dizzy, close to passing out, not wanting to eat as it hurt so bad to go to the bathroom and he wanted to not eat to try to ward off going to the bathroom which was not good. The suffering he was going through and me was just too much which escalated a few weeks after a visit to the Dr. He stayed in 24/7 unless it was a Dr appt.

I spoke with his Dr and she agreed and I brought him to the hospital and he did end up being admitted. The extreme pain is why they would NOT release him and send him home. He was given IV's, pain meds in the IV every 3-4 hrs, needed 3 units of blood and in the hospital for 5 1/2 days. CT Scan, stool testing, blood work among other things but pain management and starting Imuran was the main focus. He was released and is still on pain meds. He has a pain patch every 72 hrs and morphine sulf pill twice a day. I am not pleased that he needs the pain meds but it is now 4 1/2 months and the Imuran I think is starting to get him into a remission. I wish he did not need the pain meds. They do not space him out and keep him in a fog it allows him to be functional and gave him his personality back. Your husband needs something to help his pain and give him some relief. (I don't want to sound like a pill pusher but it is inhumane to allow a person to remain in severe pain. We don't do that to our animals!!)

The rectal meds I heard about here I spoke to the Dr about and she prescribed Colocourt which I administer for him. We started them on June 26th and on July 2nd he felt well enough to go out to a birthday party at someone's house. We only went out for a few hours and came right home. He was a recluse - only going out to the Dr due to the constant urgency, bathroom trips and diahreaa. The past few months there were good days and bad days. This past month more good days than bad.

It will be very tough for you. I had my moments where I felt so helpless and useless. No matter what I did and tried to do to help him or try to make things more comfortable. My husband is a very gentle, loving, sweet guy and during the height of the flare he was cranky, short tempered, basically a different person from the guy I knew for the past 39 years. He would apologize and be so annoyed with himself for "losing it" but couldn't help it. So be prepared and get "thick skinned" and when you need to let it out take a shower and cry in there. I tried very hard to be strong and not melt down in front of him and get him more upset. Sometimes emotions just kicked in and couldn't hide it. Also this place will be a comfort to you too in addition to giving you much needed information.

When he was admitted the very next morning his Dr came in and asked permission to put in a referral to the Mayo Clinic as she was most concerned that he was not responding and just didn't want him going through this any longer even though we were going to try the Imuran drug. Even though he looks to be responding to this medicine and the testing is showing that the drug is ok for him she thinks it is still a good idea to go to the Mayo clinic which we are doing on Monday.

I hope this reply is not depressing for you as you can see it has taken 4 1/2 months for him to get to this point. He was however already being treated (unsuccessfully) prior to that due to the "trial and error" nature of this dreadful thing. This has been going on for more than a year to finally be at a point that we are seeing the light at the end of the tunnel.

I have been very insistent, very involved, I go to the Dr with him every month with my typed listing of questions, request copies of everything for our files. He could never do this on his own. It wasn't too long ago that he couldn't even focus or concentrate on anything due to the pain. Even when I would try to talk to him or ask him questions it was too many words -- too difficult to comprehend and he didn't want to be bothered.

We are retired - I don't know your circumstances but your husband has to give in to this and get whatever rest he can get. For about a month now my husband gets about 5-6 hours of sleep now without waking up to go to the bathroom. Even though he is able to do things when he is home he is resting to try to get better and get the much needed rest this disease requires. (It gets him out of doing the housework things he used to help me with....lol. He owes me bigtime!)

I will keep you both in my prayers and I truly hope he can get some relief soon. You will need to watch for depression too as it can become an issue also.

No question is too silly or too personal here. You will have them. Search through the copious amounts of pages here or do a search. If you don't find what you need post a new topic and you will get response.

Sorry this is extra long.............but I absolutely feel your pain as the expression goes having been there and still trying to get more answers and wanted to try to give you some information from my own personal experience that may help channel some things for you to think about.

60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg


UCwifeinOK
New Member


Date Joined Sep 2007
Total Posts : 3
   Posted 10/2/2007 4:23 PM (GMT -7)   
I'm sorry I wasn't able to respond to all your wonderful replies. Minutes after my last post on the 26th I had to rush my husand to the doctor's office. I finally was able to convince the doctor that he was not well and not going better, only worse.

I had to use a wheelchair to get him there. He decided to admit him again for fluids and then decided to do another scope the next day. Well my husbands flare was worse. His WHOLE colon was inflamed the first scope a month ago. When the doctor came out I knew it wasn't good. The doctor rated my husbands colon at 3+ on a 1 to 3 scale. He immediately put him on Rimacade. He said if there was not any improvement very quickly he would have to get his colon removed.

Thankfully due to God lots of prayer and new medicine my husband is home today. Still very weak but getting better.

(In my first post I didn't get in that he was started on Entocort for the first two weeks. With no improvement he was then changed to pred.)

He will be getting Rimacade at different weekly visits until he is in remission, and maybe another med later on to go with it. He is on a very bland simple diet and also Ensure to help replinish what nutrition he was not getting for such a long time. (He has lost 35 lbs. in 5 weeks!)

Thank you for posts. I thank God that I found this site. I diffently will be here a lot, if not potsing at least reading!
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