Scary hospital stay, thinking of drug/surgery options

Hi,

Well a few days ago I just got out of the hospital -- 9 day stay.  I had been having all kinds of extraintestinal complications (boils, EN, eye problems), and I went for a regular appt with my gi doc.  I was feeling extremely tired that day, and he took my temp, and it was 104!  I thought the thermometer was broken, but it wasn't, and he put me in the hospital. I went up to 104.6 the first night, and it was horrible the first few days -- shake and bake, they call it.  I went on vancomycin and other strong antibiotics and finally got the fever under control, although I'm not sure whether we'll ever know for sure what caused it (blood cultures did not show infection, but I was already on antibiotics that could have masked it, could have been a CD fever, but it was so high and I wasn't even flaring that bad til I got to the hospital, or could have been a passing virus). 

In any case, this was terrifying, especially since I am on cimzia, and you read all about how you can get fatal infections and all....    once the fever broke, they gave me IV prednisone, which worked well (it's the devil that I know....  still has tons of side effects, but took away my EN nodules right away).  Now I'm out, exhausted, and recovering.

I feel like I'm done with TNF blockers and other immune tweakers.  I got about one good year on remicade, but humira and cimzia never worked at all for me (not 6MP or asacol either, really), and if the benefit is near zero, the cost benefit ratio is too high.  I don't want to do tysabri or clinical trials of other such drugs.

My docs make it clear that pred is not a long term option for me, and they are encouraging surgery.  I'm not even sure exactly what kind, I think a full colectomy (my disease has never been in my small intestine that I know of, the gi stuff is all colonic, and up until a few months ago I was still indeterminate UC vs CD).  I have an appt next week and will get more details.  I am starting to think that surgery probably is inevitable.... I've been so sick the last few years.  Right now it feels preferable to new drugs.  Although, I know I'm in no shape to be making major decisions.

I'm wondering if anyone has any thoughts, words of wisdom, or whatever...... this is my third hospitalization in about as many years, but I was by far the sickest this time, and I'm still trying to wrap my mind around the whole thing.  Thanks.

 

Hi bluegrass- My CD is also confined to the colon but I had very serious bleeding that was very difficult to control along with cardiac complications. I have been through all TNF blockers with the exception of Remicaid. I have been in remission for over a year with the Cimzia and Lialda combo but about a week ago I started bleeding and flaring again so I was worried that I was again spiraling out of control. After finding out about Bee Propolis from another HW member, I tried it and it stopped my bleeding overnight. I don't know how long it will work for me but for right now I am doing well on it. No side effects. I am taking 500mg capsules two times a day. I went from having about 20 bm's per day to 1 and it is formed. That is a big thing for me! My Dr.s originally wanted me to have a colectomy but I will continue to fight this dd and fight to keep my colon. I suggest researching and trying different natural products, diet modification, stress reduction techniques and hopefully you will find something that will keep your disease under control one day at a time. Take care!

Gosh blueglass, that's just awful. I once had a temp of 103.8 and thought I was dying. I have no words of wisdom since Humira has worked for me, but I do hope you can come up with an answer, something to help you. Get some rest.

Oh, I do have an ileostomy and I'd never go back to having my colon and being so sick all of the time. I have CD in my small bowel, too, but Humira is doing its job so far.

Good luck to you!

I'm sure there are people out there who regret having had a colectomy.

But I haven't seen any posts like that here. And I haven't seen any posts like it on Dragonpack, the board for parents of IBD kids.

What I have seen posted with great consistency is regret that they didn't do the surgery sooner. Most people say that it gave them their life back.

It is not without risk but the risk of unchecked disease is great - as you know from recent experience.

Large clinical trial data has suggested that significant risk of life threatening infection is associated with the use of prednisone and narcotic pain meds - not TNF alpha inhibitors.

I'll never forget what my son's pediatrician said to me while we were looking for a diagnosis for my son 6 years ago. She said "It would be better if he has UC. Removing the colon will basically cure UC. You can actually live quite well without your colon."

You might want to post here asking for people's experiences and also over on the UC board since colectomy is more common for people with UC. Perhaps visit an ostomy board for info too.

You might ask your GI about whether or to what extent the colectomy will reduce the risk of extraintestinal manifestations and what the treatment would be if you do develope these.

Finally, I realize that it seems drugs have failed you. My son is holding steady on Methotrexate after getting into remission on a combo of Humira and 6-MP. If you are up for one more try with meds perhaps MTX is worth considering.

But, I agree with Nanners pretty much.

Hoping you feel better soon.

Patricia

I have had the same experiences; 104+ fever, shake and bake, etc. many times.

Like you, I have been pushed to the 'edge' many times, and if I just had UC I would have already had my colon removed. There are times when I would have cut it out myself.

BUT, like you, my Crohn's is only in my colon. My greatest fear is losing my colon, only to have Crohn's return (whenever that may be) in my small bowel, and then have a whole new set of 'new' problems.

What were your GI and surgeon's ideas on the Crohn's returning in the small bowel?