HELP! I don't want to lose my colon. Been in hospital for over 3 weeks!!

Hey guys. I could really use your help!!!! I'm not even sure if this is the right place to post this. But I really need help and don't know where to turn. So I really need to vent and get help!! I'm a 23 year old male who got diagnosed with mild ulcerative colitis back in October of 2014. Was in the hospital for 6 days to get it under control and was prescribed delzicol and 20 mg of prednisone to get it under control. Every time I tried tapering down the prednisone I would experience symptoms. So it took me about three months to taper down to 0 mg. I was in in somewhat of a remission for about 2 months maybe. In April I started getting the symptoms back and they were terrible. I was going 15-20 times a day with 90% blood. This happened before to, but I didn't think it was that serious. So I called my GI and he prescribed me 20 mg prednisone, that really didn't work. So then he doubled it to 40 mg. that didn't work. I got admitted to the hospital April 16, and they put me on IV steroids to get it under control. That was finally doing the trick. But once they switched me to oral prednisone with flaygyl, I was back to square one and was re-admitted to the hospital in 36 hours. I felt like I was rushed out the hospital and didn't really get to talk with my GI doc. So I'm re-admitted and they did a colonoscopy. And the doc said I had very severe colitis this time and it was all over my colon. So they started a dose of remicade right after my colonoscopy. After the dose. I didn't feel that good in weeks. Bleeding had stopped but I still had diarreah. At this time. I had only lost about 20 lbs within 2 weeks. Then my GI doc went for vacation for a week and I was seeing another GI doc. My symptoms slowly started coming back so She seemed kind of negative and was talking about surgery. So she rushed my second dose of remicade within 5 days. The blood started coming back and . That really didn't help much either. At this point I just wanted to get out the hospital and to stop thinking about it because it was making me really stressed and frustrated. So I went back to prednisone and left the hospital hoping it would calm down if I had other things On my mind. It was actually getting better but within 12 hours I was re-admitted because I got thrush. Might I add I had not really eating anything for about a week since I was on a clear liquid diet. And my diet consisted of boost breeze and clear liquids. When I got thrush due to being on so many steroids I was just throwing up water and could even drink water to stay hydrated. I was throwing up every 20-30 minutes. At this point I was so frustrated with the hospital I was going to since they couldn't get anything right. I just needed relief ASAP. I thought I was going to die. So I went back to the same hospital and started IV steroids again! Symptoms were veryyy slowly decreasing then getting worse. So my replacement GI doc said I had no other options and I would have to do surgery. I told her straight up no. She kept saying there are no other options. And I kept denying her. But hours before talking to her I saw a new GI doc and he seemed a lot more educated and said he would keep me on IV steroids for a bit and see how it goes. So when she came in I wanted to punch her in the face. She made me even more frustrated and stressed. I've never wanted to punch someone so bad in my life. So I told her I don't want to see her anymore and that my new GI doc is going to take care of me. He had more hope and a bit more options. My thrush was greatly reduced by dyflucan and swish and swollen. Once I started eating again I started the SCD diet since I read so much about it. I've been the "intro diet" fior about 4 days. It doesn't seem to be helping. So I'm going back to my low residue diet. Should I still continue the SCD diet? I feel like I'm not getting enough nutrition from it at all. And now I'm not so hopefull since I just got off the IV steroids today and am still bleeding 4-5 times a day. But the amount of blood is a Lott less then what it use to be. about 30% of what it use to be. I've lost over 35 pounds with the month and feel really fatigued and even feel more down and depressed in a way. I also haven't been able to think straight and constantly keep forgetting things. This is why this post might seem really hard to follow and is all over the place. So I apologize for that. See my desperation? I just took my first dose of prednisone tonight, 40 mg. tomorrow I will start with 60 mg and taper down from there. I kind of want to leave this hospital tomorrow after taking my high dosage of prednisone for a day and see how it goes. I'm thinking of traveling to the mayo clinic. My main questions are:
What has worked for you guys???
Anyone else been in a similar situation?
How can I stop stressing and thinking about this?
If I tell my doc I'm stressed and kind of feeling down, will he prescribe me meds? And do you think that will help? I kind of don't want to do that.
WHAT DO YOU GUYS THINK I SHOILD DO?? I really don't want to remove my colon, unless I'm going to die. Sounds a little extreme, but I will go till the last drop.
I could use all the help I could get. If you have any other questions. Please ask. I know I didn't write this post so well and is all over the place. So I'm sure you might have questions. But please help!!!!!

Why did you take Flagyl? Did you have C-diff? The steroids are never a cure. They can make you better but as you taper your mtnc meds need to be good enough to work. Obviously the Delzicol wasn't. What dosage didyou take? It might be too early to tell for the Remicade. There are other drugs similar to Delzicol to take while still getting the Remicade and you should be on rectal meds too. So far these docs seem pretty incompetent. You should try better treatment options betore panicking into surgery.

Worriedgirl3 said...
You're in Milwaukee? It sounds pretty serious, but like you need to consult with a new set of doctors/new hospital. Please consider making the relatively short drive to Chicago to see someone at the University of Chicago. They have the top IBD experts in the country. I see doctor Rubin now and there is a GI surgeon there: Dr. Hurst who is incredible. It is worth the drive, believe me. If you call to explain your story and how urgent it is, they will get you in quickly.

Yes. I am in Milwaukee. I called my insurance and unfortunately they pretty much don't cover any place besides WI. I really want to go to the mayo clinic ASAP.

Should you continue the SCD diet? No, that will not be fast enough help for you. Diet takes much longer than Rx meds to see results. Try adding some veggie juice (no fiber) to your intake for vitamins. The low residue diet may be the best thing for your very wounded colon right now.

I know you think surgery is the end of the world but many people who were in less crisis than you say it's the best thing they ever did. Just for your own peace of mind find the best colon surgeon your insurance approves of and have a talk with them. What you don't want is an ER doc you never talked to doing it because you aren't prepared and unconscious unable to make decisions. Some people have had a temporary ileostomy done and then reversed it.

So you have been on Delzicol, pred and Remicade? There are plenty of meds left to try before surgery but you are having a really hard time of it for sure.

I HIGHLY suggest getting on Rowasa enemas. You should still be taking some kind of oral medication. I'm not sure about Delzicol dosing if you were at the maximum amount to be taking. You have only had two Remicade infusions so it still may need time to kick in. The Flagyl you took for the C-diff you didn't have could have also caused some of your symptoms. Some people get worse from it.

Good luck. Keep us posted.

Have they tested you for c-diff? That should to be done asap to rule it out! You then need to get on another medication like a biologic bc prednisone is not a maintenance medication.

Hi Ozzie, I'm sorry for what you are going through. This is my first post here but I've been a regular lurker for the past year after my first really bad flare. I'm male 50. I really identified with a lot of what you're going through and just wanted to share a couple things.

It may help to try and remember that what you have been going through for the past month and the near future is probably the worst of it and things will get better. You were ambushed by this crappy disease and then got thrown into a medical system that has a very poor understanding of the disease or how to do anything but attempt to treat the symptoms. It sucks utterly. Add to that the mental/emotional side-effects of the steroids and having a less than stellar doctor to where you have to try and figure out your own best course of action and it just becomes overwhelming. I know it was for me and nothing in my life has made me cry so much as being in that state for a month and a half as I lay in bed unable to eat or sleep or figure out what to do to make it go away. But things do improve and you learn ways you can have some control and cope with it. Things will get better.

I agree with what was said that what's needed most right now for you is to get the severity of the symptoms under control enough to buy yourself some time. This time will allow you to look into some of the non-pharma treatments you'll find on this forum that may provide some relief when combined with maintenance medications. Prednisone is the drug that works for a lot of people to buy this time and hopefully it will work for you.

Unfortunately prednisone is a real deal-with-the-devil and no exaggeration. Most of the confusion and forgetfulness you are going through is probably from the prednisone. And it has a long list of other nasty nasty side effects. Some people won't take it no matter how bad their flare gets. But it did work wonders for me to stop the bleeding and 30+ bathroom trips a day and I was able to start eating again. I was on 60mg for 3 or 4 weeks before I started slowly tapering off. All in all I was on Prednisone for about 4 months. Compared to what worked for me, it sounds like you've been on lower doses (until now) and got off it more quickly. If you find that being on 60 mg is helping, it may be worth staying on it for a some time before starting to taper. Prednisone works very quickly so you should know within a couple days if it's helping. It does not work for some people but hopefully you will get some relief.

Last thing I wanted to share is that I think you'll feel a whole lot better once you find a doctor that you trust and have faith in. Maybe post where you're at and someone in the forum can recommend a doctor in your area - there are good and bad GI's in all major cities. If it takes going to Mayo to get a medical opinion you can really trust and you have the financial resources to do it that may be the way to go. I am originally from Rochester (Knoxville now) and when I was going through the worst of this flare I didn't like the care I was getting from my local GI so I went through Mayo. I can give you more detail on what that was like if you're interested. In the end I did not learn anything new and the treatment Mayo recommended was nearly identical to what my local GI was saying. Mayo is very thorough so I'm glad I went - it put my mind at ease that everything possible had been done.

Good luck and hang in there - it will get better.

It's really difficult in cases where prednisone doesn't et you to 100%. Did they do stool tests? I don't think the flagyl is a bad idea, I've taken it and i've never gotten worse from it. Some people do however get worse with antibiotics but flagyl is not generally considered an antibiotic that harms UC. It can be used to help reduce unwanted bacteria in the colon and that can be a good thing. I've taken it a bunch of times... I think the first thing you should try to control is the stress level. It's not going to make your UC go away but you will feel a lot better. Secondly, I would try to get the negative thoughts about surgery behind you. Surgery, although it sounds like the worst thing in the world, often is the closest thing we will get to being cured. Third, you have to be aware, like DB said, none of the drugs work for everyone. It sounds like Remicade did very little for you (if anything - you can be sure the positive changes were from the remicade and not the steroids). It may be worth trying another TNF blocker, like Simponi, but you may be a nonresponder. If that's the case, you need to try something different. What is going to make it harder is that a lot of the drugs are not meant to induce remission but they are meant to maintain remission and in your case, it sounds like you haven't been able to get close to remission. I think I would try a different 5ASA and throw all the rectals at this. Where is the inflammation active currently? Throughout? If that's the case, rectals won't get you where you need to be. What about 6mp/imruan? Did they doctor mention this? They take longer to work but if you can start before you get to a lower dose of prednisone, while things are somewhat manageable, you may be able to get things under contorl.

It's really hard. it seems like some people have cases that pop up and are never able to be controlled. There was a member here (embersglow), she's from WI too. She had surgery after trying just about everything for her UC. She got UC, never had a single medication work for her...

Entyvio is new and it's completely different from Remicade and other biologics but it takes a while to work. Definitely something for you to consider.