Diagnosed with UC four weeks ago

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Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 5/28/2008 10:21 PM (GMT -6)   
My daughter 23, had bloody diarrhea and severe pain when we visited the GI doctor.  The next day a colonoscopy revealed left sided UC.  She was started on 4 X 3 of Asacol, 40 mg of Prednisone, antispasmodics, Flagyl, Cipro and suppositories.  After two weeks she was worse than before.  She had lost 21 pounds and the doctor sent us directly to the hospital for admission.  She was severely dehydrated and very weak.  After many IVs to rehydrate, she then started vomiting and they stopped the Flagyl and Demoral and she did well with Dilaudid.  A week later she was to have been discharged on Memorial Day.  Then the pain, diarrhea and vomiting started again, worse than before.  The last two days have been slightly better with potassium IVs.  She had a PICC line put in this morning and tomorrow morning a sigmoidoscopy is scheduled to see if there is any improvement in the inflammation.  If not, she will be starting Remicade.  After reading about the drug I am so fearful of the side effects.  But what else can you do?  I feel that her life has been taken from her.  I had no idea this disease was so prevalent and so debilitating. 

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/28/2008 11:21 PM (GMT -6)   

First of all, welcome to HealingWell. I'm sorry your daughter has UC, but glad you found us and hope this forum will be helpful to you.

In my own personal experience, Remicade has been much more gentle to my body than steroids were. I've been on it for two years with no adverse effects. The side effect most people worry about is the small increased incidence of lymphoma. This occurred in a tiny number of cases, and all of the people were taking Remicade and immunosuppressants such as Imuran at the same time.

That said, there are other things that can be tried before Remicade if your daughter wishes to do so. I wasn't able to take Asacol because it made my symptoms much worse, but Colazal helped me. There are the immunosuppressant drugs. The sad thing is that all medications have some undesirable side effects, yes, even "natural" ones. So we have to weigh the risks against the potential benefits.

You'll get a lot of suggestions here; just remember that each of us is different and what works for some doesn't work for others. We each have had to sort out our own best regimen for optimal results.

There is a lot of hope, though. Getting that remission can be tough. I was really sick for quite a while. Now I live normally, eat normally and only occasionally even need to think about having UC. Hopefully your daughter will respond to treatment soon so she can go on with her own life. She's very lucky to have a supportive mom like you! 


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


KitKatBaker
Veteran Member


Date Joined Feb 2005
Total Posts : 1146
   Posted 5/29/2008 2:15 AM (GMT -6)   
Welcome to Healingwell.  It sounds like you and your daughter have been through a lot.  My first question is, did anyone explore the fact that one of the meds could have been making her worse?  Prednisone usually makes one feel a lot better, rather quickly.  I know that in my case, I took Flagyl and Cipro for about three days.  It made me so much sicker than I had ever been before.  I cant be sure if it was one or the other, or both.  The meds that we are prescribed are so powerful, and its not uncommon for one person's miracle drug to be something that makes the next person feel worse.  Ask the doctor for all the options, and do your research. 
 
I hope that your daughter gets some relief soon.
Katina
Co-Moderator Crohn's Disease Forum
Co-Moderator Ulcerative Colitis Forum
 
Asacol 9/day, Prevacid, Entocort 9mg, Acidophilus Complex Probiotics, Green Tea Extract, Flax Oil
 
Help support Healingwell!!!
 


lemonhead
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Date Joined Dec 2007
Total Posts : 1028
   Posted 5/29/2008 7:42 AM (GMT -6)   
Was she checked for C. diff? I am thinking that if C. diff was negative, why would she even need to take the flagyl?? Maybe someone else on here can answer that one. I was diagnosed with left sided when I was 25. I can relate to your daughter. I did not have the vomiting with my UC though. I got the pain and the diahhrea, but no vomiting. I wonder if she is not having some kind of allergic reaction to one of the drugs. I really don't have any advice for you, but I really hope she feels better soon and know that I am thinking about her and hoping she recovers soon.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 5/29/2008 8:21 AM (GMT -6)   
sorry to be welcoming you and your daughter, it is so scary going through all of this. You have a found a great site.

With side effects, I got kidney disease from taking sulfasalazine which is a B class drug and I am one of the rare people to have that happen to........also pred side effects are pretty nasty. So I guess what I am trying to say is that you can can side effects from taking anything, so try to hope for the best. Remicade has been great for a lot of people and it may be my next step (sooner than I think).

Wishing your daughter and family the best.
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
Major Flare Sept/Oct 07
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics, Aloe Vera juice.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 5/29/2008 1:46 PM (GMT -6)   
Well, it's the next day and the sigmoidoscopy shows no change in inflammation since the beginning of therapy of four weeks ago. They are now taking out the feedings via the PICC line and stopping the Prednisone. She is now completely loopy and complaining of severe pain in the left shoulder and arm. X-rays taken show no abnormalities. We are now waiting for them to start the Remicade infusion. I'm glad that she's in the hospital for this since I am so afraid of side effects.

The lovely responses I've received from the members of this board are so appreciated and give me a feeling of support through this horrible time. Thank you all so very much.

lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 5/30/2008 7:44 AM (GMT -6)   
Best of luck with the remicade infusion. I sure hope it helps you as much as it has helped so many people on this forum. Please keep us posted on her progress. My thoughts and prayers are with you.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


daniella510
Regular Member


Date Joined Apr 2008
Total Posts : 48
   Posted 5/30/2008 8:18 AM (GMT -6)   

So sorry to hear about your daughter's diagnosis, I really hope the remicade infusion helps.  The only idea I would like to reinforce from the other replys is the one about flagyl.  A few years ago I was admitted and had a PICC line for two weeks, one day my mom told me not to take the flagyl the nurse brought me b/c I had no c.diff.  VERY quickly after that my condition turned around and I was sent home three days later. 

Though we are all different in our reaction to meds it might be worth exploring for your daughter. 


__________________________
Danielle
25/F
Dx: UC in 1997 at 14 with pan colitis, but it hasn't been that far up since.
Meds: Asacol (400mg x12 daily)
         6mp (50mg from Aug06 to Dec07)
         Prednisone (20mg currently tapering)
         Multivitamin
         Fish Oil
         Culturelle probiotic


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 5/30/2008 8:05 PM (GMT -6)   
Flagyl was originally marketed as an amebicide. It's a very potent drug that can aggravate UC in some patients, including yours truly. Cipro can also make UC worse. The problem is that combo meds have surpassed single-med use by doctors to treat IBD in the past 10-12 yrs, and combos make it harder to tell which is causing the worst side effects, especially in newly diagnosed patients whose medical history tends to be sketchy. I hope your daughter's inflammation improves ASAP. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/5/2008 10:51 PM (GMT -6)   
It's been nearly three weeks that my daughter has been in the hospital for management of left sided ulcerative colitis.  She was also being tapered off Prednisone and still taking 12 Asacol pills a day. She was being weaned off the feeding tube and was eating soft foods.  There was talk that she would be coming home tomorrow since she was eating.  The second Remicade infusion was to be given next week. 
 
This morning she had a severe coughing spell that lasted over ten minutes and the doctor happened to walk in for morning rounds.  She heard the cough and raspy voice and sent her for a chest x-ray.  On the lower part of the x-ray they saw air in the colon.  She was then taken for a CAT scan and that showed air and fluid in the colon which would suggest toxic megacolon (sounds ominous). Surprisingly, the colitis seems to have improved a bit.   Also, they saw something in her chest on the CAT scan.  So much for coming home tomorrow.  Instead, she's having a surgical consult and a pulmonary consult.  This bout with ulcerative colitis has escalated into something horrifying.
 
Needless to say, my daughter and the rest of the family are beyond upset.
 

Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 6/5/2008 11:30 PM (GMT -6)   
Sorry, indeed, that all these complications are hitting your daughter! Is she being treated by a gastroenterologist who subspecializes in IBD? That really is important to her overall care/recovery. If she doesn't already have such a doctor, you can hopefully find one via ccfa.org Physician Finder section. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/6/2008 9:34 AM (GMT -6)   

I am so sorry to hear all that your daughter is going through.  I just want you, your daughter, and your entire family to know that you are in my thoughts and my prayers.

John


Total Colectomy with End Ileostomy May 27th, 2008


UMDTerp2001
Regular Member


Date Joined Sep 2006
Total Posts : 246
   Posted 6/6/2008 10:38 AM (GMT -6)   
It seems way too soon to be talking about Remicade if she was just diagnosed.  Most people can go through a few month course of steroids and stay on a maintenance drug like Asacol or Colazal and achieve and maintain remission for a while.  I would not start on Remicade so soon without trying to first try the other drugs to get the inflammation under control. It seems from the posts that Remi is effective, but it does have potential long term effects which should not be ignored.  My recommendation, and I am no GI, just from my experience is to try a course of steroids before having to go on a long term drug like Remicade.  Of course the med establishment wants to push the expensive drugs like Remi so it is no shock that they want her on that.
 
 
__________________________________________________________________________________
- 29 y/o male residing in Northern Virginia
- Currently in remission
- Pancolitis since April, 2006
- Small fistula, re-occurring arthritis and anemic at times 
- 4 Colazal/day, multivitamin, Fish oil and Primal Defense Probiotics 2x/day
 
 


Concerned Wife in WA
Regular Member


Date Joined Jun 2008
Total Posts : 37
   Posted 6/6/2008 12:28 PM (GMT -6)   
I feel so bad for you. My husband has gone through almost exactly the same thing almost word for word with the exception of staying in the hospital with more complications. He lost 50 pounds from not eating and his potassium was so low when they admitted him they couldn't believe he hadn't had a heart attack. No one seemed to know what to do till I took him to emergency when he started turning yellow and his eye whites turned yellow. I am an EMT and knew this was enough. Doctors know alot but make a lot of mistakes. He got let out on the day after memorial day. He is still really bad and had a terrible attack last night. So I feel for you and your family this is so scary to just get thrown at you. I wish you the very best and hope that you will find her starting down a path of recovery soon. My prayers are with you.
Crab Fisherman in Alaska

Diagnosed May 2008
Mesalamine 12 pills daily
Prednisone 40 mg
Oemneprizole

Taking multiple vitamin supplements, lots of omega 3's and Antioxidants


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 6/6/2008 1:09 PM (GMT -6)   
Sometimes UC progresses SO QUICKLY that standard oral meds, including prednisone, are not able to control it. In those cases doctors do jump to Remicade and for some it works wonders.

Mitzi's Mom - how is she today?

I wonder if the coughing could have been caused by GERD caused by the pred. I have GERD that is aggravated by pred and will on occasion cough and cough and cough. Just muttering out loud...
Pan-colitis and GERD diagnosed May 2003
Osteopenia diagnosed Feb 2006
Status:  Flaring
 
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Last dose of pred: May 25
 
Co-Mod for the UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/6/2008 11:34 PM (GMT -6)   
Today was an absolute nightmare once again in our saga.  Mitzi's bloodwork shows that she is so anemic that an immediate transfusion is necessary.  Our two other children plus Mitzi are all the same A+ blood type, and I wanted to use their blood for the transfusion.  The colorectal surgeon who saw her today said that surgery must be done, as quickly as possible, as my daughter is gravely ill and seriously anemic. Her colon is literally killing her.  She is due to be transfused overnight and will have her surgery tomorrow morning.  We are upset that we weren't told that a transfusion was in the plans days ago, since we want to use the blood of Mitzi's siblings.  Going to the Red Cross, getting cross matched and tested for HIV and other diseases, plus sending it back to the hospital will take about three days.  This is too long for her to wait.  We are going ahead with using the blood bank blood.  Although we are going to have my two other children give blood in case she needs more blood post surgically.  The gastroenterologist has said that everything that could be done was done and surgery is the only option.  The colorectal surgeon agrees and spent over an hour in the room calming my daughter down and explaining what she will be doing during surgery.
 
I am asking that prayers and good wishes please be sent this way...my daughter Mitzi is terrified, as we are.   Thanking you all for your good thoughts is appreciated, and I shall keep you informed. 
 
Sincerely,
Mitzi'sMom

Post Edited (Mitzi'sMom in GA) : 6/6/2008 10:38:46 PM (GMT-6)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/7/2008 10:05 AM (GMT -6)   
Mitzi'sMom, it sounds to me as if your doctors are giving you good counsel. When it gets to the point that the colon is keeping us from having a life, either literally or figuratively, it's time for surgery. I'm just so glad the surgery is available for her. I'm so sorry she reached this point, and especially so quickly that there was no time for anyone to get used to the idea.
 
You may want to visit the ostomy board here (it also has people with J-pouches posting) and also this site, which is very informative about the j-pouch procedure:
 
               http://j-pouch.com/
 
My thoughts and prayers will be with you daughter.
        
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 6/7/2008 8:22 PM (GMT -6)   
I'm so sorry to hear that this vile form of UC has struck your daughter. At least having A+ blood, she is not at risk for rare type on that account. Best wishes for her recovery from surgery & for you all to get through this ordeal with positive outcomes. / Old Hat

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 6/8/2008 12:53 AM (GMT -6)   
Mitzi'sMom, my prayers and good thoughts are with your daughter and your family. I hope this surgery sends her on the road to recovery and feeling good again. My daughter is having surgery within the month. It is overwhelming. I can't imagine having to face it as an emergency. Stay strong!

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 25 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!


Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/8/2008 1:30 AM (GMT -6)   
Well, it's done.  Mitzi had her colostomy done early this morning.  She was stable enough for the surgery after four units of blood.  I was pleased to hear that  the surgeon wrapped her fallopian tubes and ovaries somehow, in order to protect them from possible adhesions, which would prevent a possible future pregnancy.  The new problems started soon as she came back to her room.  The abdominal pain was expected, but she was having trouble breathing.  The pulmonologist came in and ordered a portable chest x-ray and a blood test to determine if there were  signs that there might be a deep vein thrombosis.  Then she went down for yet another CAT scan.  Now it showed pneumonia and possible collapsed lung near the area of inflamed colon which had been removed.  Then the blood test came back that it was possible there was a DVT.  Her pulse couldn't get down from 160 and the breathing became worse.  Off to ICU.  They changed the nasal cannula to a mask with a bag.  She had nebulizing treatments.  They upped the Dilaudid.  She cannot move to even dangle her legs.  I asked her she felt...she opened her eyes briefly and said, "Mom, I'm in hell.".  mad
 
In the morning it's back to the hospital and wait with her while she has Doppler ultrasounds of her legs.  I thought that once the bad was cut out, things would be easier!!!! mad sad mad
 
 

tjf
Veteran Member


Date Joined Dec 2005
Total Posts : 3238
   Posted 6/8/2008 7:35 AM (GMT -6)   
Oh wow. Please tell your daughter we are thinking of her. Please keep us posted when you can. Stay strong and hang in there!!!!
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/8/2008 9:18 AM (GMT -6)   
What a terrible time she's having! I hope this is a better day, and she begins to improve. Sometimes life is really unfair, isn't it?
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 6/8/2008 10:58 PM (GMT -6)   
Could Mitzi have gotten aspiration pneumonia from the nasal tube? I can't help wondering if some of her complications aren't institutional. IBD patients tend to be extra-sensitive to meds & handling; I just hope that those personnel treating her realize that. Wishing you all a better day tomorrow-- / Old Hat

Mitzi in GA
Regular Member


Date Joined May 2008
Total Posts : 23
   Posted 6/8/2008 11:46 PM (GMT -6)   

Could Mitzi have gotten aspiration pneumonia from the nasal tube? I can't help wondering if some of her complications aren't institutional. IBD patients tend to be extra-sensitive to meds & handling; I just hope that those personnel treating her realize that. Wishing you all a better day tomorrow-- / Old Hat

 

Today was exhausting....ICU regulations are so different than from I remember from years ago.  It's a private room with an entrance for visitors on one side, and the other side opens to the huge nurses' station.  It extends for about 30 or more rooms and even has a waiting room available with lazy boy chairs for those who wish to sleep there.  Later in the evening the night shift is more lax and let the four of us in to see her.  The Doppler ultrasounds thankfully show no evidence of DVT in her legs.  Chest and abdomen x-rays are still taken daily.

I, nor the doctor, think that she has aspiration pneumonia.  Mitzi was complaining of not being able to breathe before the nasal oxygen tube had been started.  That was given after the fact.  Her pulse is down to 125 from 160, and her oxygen saturation is normal with the nasal tube.  She finally permitted them to let her suck on wet sponges on a stick and to let us touch her.  She's getting treatments to provoke coughing and reinflate the collapsed lung.  Antibiotics, vitamins, feeding supplements IV, two chest x-rays a day. WOW...and the funny thing is that today, June 8, our planned cruise to Mexico left.  A hospital room view does not an ocean view make!!  The cruise for the whole family would cost a fraction of what these four weeks have cost!! yeah   I just hope that her more alert appearance, and ability to understand what is being said to her will improve.  I hope no one has to go through anything like this.  I don't think most people have such a short bout with colitis before having to make split second decisions like we have.  What I did do was tack up photos of my daughter taken a short time ago when she was completely healthy...with a huge smile and in a hot dress.  She looks at them and looks forward to looking like that again.  It also lets the nursing staff see a person in her normal life so that these sick people are looked upon as individuals, not a moaning, sick, and loopy person in a bed.

I hope and pray that all of you on here who have responded and all who suffer from this, have an easy time with this miserable disease, and that remission and good days are many.

Post Edited (Mitzi'sMom in GA) : 6/9/2008 9:48:56 AM (GMT-6)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5185
   Posted 6/9/2008 12:05 AM (GMT -6)   
Many thanks for your kind wishes & the update on Mitzi's condition. Earlier you wrote about nasal tube + feeding tube-- so I thought they might have been one & the same-- but you just clarified that the former was for administration of oxygen. You had a good idea, I think, to post Mitzi's photo near her bed. Morale-boosting is very important at this stage. Just push Mexico onto a back burner & tell yourself there will be better times in the future. / Old Hat
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