Diagnosed with UC four weeks ago

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! 

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. 

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.

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

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)

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.". 

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!!!!

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!!   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)