Brother hospitalized: looking for advice

I have a few questions for those who know what he's going through...

He's a very active/healthy mid-20s guy. He has lived with a mild case of proctitis for the last 8 or so years, treated occasionally with Salflok. Just over a month ago he had a routine test (colonoscopy/syg, not sure which) and immediately after he started on a terrible flare; fever, weight loss, blood, diarrhea, the whole bit. After a couple of weeks of not getting better, he went in for another look and the Dr. informed him he now has colitis. He was prescribed some meds (not sure what) and sent home but they were oral and were just going through. Fast forward a couple more weeks (and almost a 40lb weight loss on tall/slim frame); he's been in the hospital for a week now with an IV with Prednisone. He has regained some strength, is eating a bit more and a day ago was prescribed Imuran. His stools are a bit better at this point; firmer and less blood, however he's experiencing a lot of pain/cramping in his abdomen. Is this par for the course?
Today his Dr.'s partner came in and ordered Asacol as well, and is mentioning surgery. Isn't this a little fast? All of his counts are good (white blood cell, heart rate, liver enzymes, etc)... it just seems he needs to 'get better' now (and gain a ton of weight back!). He's still really weak - he can't walk too far or get up too fast - but I'm assuming that's all a part of it as well?

I guess I'm looking for experiences of people who have come back from rock bottom... to ease all of our stress :)
Thank you so much for reading!

Your description of your brother sounds like me a year ago. I had been diagnosed with Ulc. Proctitis 18 years earlier when I was 25. After about three years of mild symptoms, pretty well-managed, I stopped having symptoms at all so stopped taking meds. Thought the disease was gone for good, and it more or less was for 15 years. Suddenly last year, it was back with a vengeance, and I was too slow to realize what was happening. Wound up with two hospitalizations last summer, a diagnosis of ulc. coloitis, lost 40 lbs. (a bit more than 25% of my body weight - was down to 102 lbs. at 5'8), and basically was recovering for 2 months, bedridden or nearly. Now, 8 months after getting back to work, I'm still in this flare-up, but feeling much better, gained all the weight back (though it fluctuates up and down a bit). So yes, do know that you can get that bed and recover. However, my doctor also has discussed surgery with me. I'm not ready for it, but I do see the potential benefits. I started Remicade infusions this week and am finding it a successful treatment. My symptoms markedly improved the day of the infusion and have continued to be better than the day before I had it. It's a serious drug, for those of us with severe cases of this UC that don't go away with the other meds.

Hi Z! Welcome to Healingwell!

I was recently hospitalized for three LONG days for a flare that wasn't responding to my oral meds. I came out of the hospital with less blood, pain, and cramping that when I went in. However, this flare is over and I'm still healing.

A few questions... What kind of diet is your brother on? My docs prescribed low-residue, but the cafeteria could never get that right. Something would always show up that I shouldn't eat. I was glad that *I* knew what low-residue meant and could monitor my own diet. Another problem with the hospital food is that it only comes three times a day!!! While flaring I find that I need several small meals per day and not three large ones. The three large ones would cause me to cramp. So basically while I was in the hospital, I ate less than I should have been or would have wanted to. Perhaps with family around, your brother can arrange to have them bring him snacks.

What kind of pain meds do they have him on? I found that Tramodol didn't do anything for my GI cramping, but did relax the rest of me :) Darvocet worked better for the GI pain. My docs also had morphine on my "ok" list - but I didn't want to touch that unless I was screaming in pain. (My family has a tendency for it not to work...)

I also found that sitting in that darn hospital bed for days made me really weak. The occasional walk around the unit wasn't enough to keep my strength up. That was a whole new battle once I got home.

I hope that today finds your brother doing a little bit better!

Thank you so much for all of your responses!

He is eating as much as he can; his stomach has shrunk so much in the past month, he's taking in all he can handle. He seems to be mostly getting things like fish, chicken, green beans, carrots, Boost and Arrowroot cookies on his hospital trays. I've also brought him in yogurt (organic, no sugars or flavours, just plain ol'yogurt) and made some fresh no sugar applesauce (basically just steamed apples), as I heard that goes down well. He's also getting back onto green tea (he had daily tea before his flare).

As for pain meds, the Dr has ordered morphine, but my brother doesn't really want it. The most he'll take are Tylenol 3s... he's a little stubborn and he'll 'fight' through the pain ;)

His Dr is a part of a 3-4 Dr partnership and he's been seeing 3 of them during their alternating rounds at the hospital. They all seem to have different ideas; for instance, he had a TPN for a couple of days in the beginning, and one ordered it out, and then it was re-instated yesterday by another Dr. The TPN seems to make him feel better though, he has more energy. He's sounds to be doing a bit better today; like I said, more energy, hungrier, and his BMs have seemed to slow a bit (although still relatively frequent).

At this point it seems we just have to wait and see if the meds work... and hopefully with the less frequent BMs he'll gain back a bit of his weight!

Thanks again everyone, you've all been a great help :)

Dear z8284

You are a good for supporting your brother. This disease can be a truly horrific experience;
each human's idea of horrific is different. While this disease is active, taking opiates/opioids
(which cause constipation) is a risky business: you're brother should avoid them in my opinion.
Their effect is reduced, time after time, and their side effects increase. I was recently hospitalised
for 5 weeks with a terrible flare which started in the US and had me running back to the UK to
get treatment. I was told that my colon was coming out (colectomy), as I had severe inflammation
from the transverse colon down to the rectum. I was very ill indeed and like your brother I
lost about 40lbs (frightening!). Day 0: I took the drug Infliximab (aka Remicade) to stabilise
me for surgery but I fought the doctors every day to avoid surgery. I begged for the second
Infliximab infusion, as the response to the first Infliximab infusion was very positive. Day 7: I
was started on Azathioprine, an alternative immune-suppressor, to get to work as the Infliximab
works it way out. Basically the Infliximab can kick the disease into touch. Then the Azatioprine
can keep it there. But they need to overlap so you have tapering protection. So now, after
over a year of increasing blood and pain, I am in much better health - effectively in remission -
since Day 30 after Infliximab. Now I am only on Azathioprine alone, tapered off steroids and
keeping my fingers crossed...

Argument for surgery: one can never have complete remission while a colitic has a colon.

Argument against surgery: welcome back (maintenance surgery)! And every time there's a problem... well, its hospital time.

There are plenty of happy Remicade stories and I hope that every one taking it continues to survive and prosper.
But: there is no clinical data that strongly supports that Remicade / Infliximab works in the long term and there
are so many ways to get UC. There are those that seem to have it as a result of c.diff (an intestinal bacterium)
and those that seem to have it "genetically"... those that get it from quitting smoking (TNF-a cycle in the lungs?)!

Likewise there are many ways to keep it going... or in remission... or coming and going. The key seems
to be to find away that works for you (in this case... your brother). I know that sounds a bit obvious, but
with a disease that can constipate some and (more commonly) cause bloody diarrhoea in others, who can say?

I have my hopes for your Bro... anyone who'd rather not take pain killers is on top of his game. At least
he'll possibly know where in the colon the damage is worst, when and how etc. It is definitely a disease
where the patient, when well-informed, can contribute as much as the best physician. This may be a
reason for long-term remission in many cases: moreso than the medications, if you get my drift...

ok. good luck and blessings. kenh

z8284 Ask your brothers GI to arrange a TMPT blood test to make sure if he is on the optimum dose of Imuran. I hope everything works out.

Kenh : I was really interested to read your story, as it is very similar to mine. I am also in the UK. I had my first flare 8 years ago which was pan-uc and I was hospitalised for a month. After only a week in the hospital, I was being "forced" into having surgery.  I too had to beg them not to.  They sent a stoma nurse to my bedside and left me with a set of colostomy bags to look at, I had surgeons pestering me with forms to sign so i "could be in the operating table in the morning".  It was truly awful.

I just flatly refused, and in the end, the IV pred finally kicked in, I SLOWLY starting returning to a semi-normal state.  From what I can gather, UK hospitals seem overly keen to rip our colons out, and reading your story only serves to further strengthen my belief that this is the case.

Take care