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Ulcerative Colitis
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Posted 5/26/2010 3:14 PM (GMT 0)
I am 26 male, and was diagnozed with severe left sided UC in early january of 010. Since then I was hospitalized twice. I am about to have my 5th Remi Infusion on the 10.

Since my last hospitalization, which was a little over a mounth ago, I have been doing really good. I should say that I was probably the healthiest I have ever been for this year, like I have never been sick before.

The problem I have is that I began bleeding for the past week, and actually the amounth of blood has been gradually increasing, I also began having lots of loose stool. After last Sunday I decided to go on a strict liquid diet thinking that it may help me heal my gust. I changed my diet to lots of water and lots of Ensure shakes, togather with vitamins and fish oil. Right now I am in my 3rd day on that diet and noticed that my blood is definatelly less, sometimes I dont even have any. I would have lots of mucas and D as well. Yestarday I made myself a chicken soup and put everything in a blender so I can make it easier for my guts to digest the food, and noticed that I do have paritally formed BM. The thing is I am really hungry and have huge cravings. I do not have pain. I guess the shakes are making me too gasy and then is the only time I would experience some pain, but nothing major.

I am currently on 15 mg of prednizone, and 6 pills of the Assacol HD per day. One thing with the Assaocol is that it goes right throuh me without being disolved.

My real question based on your experience is, am I getting better, or I am just temporarily keeping my simptoms down. Because I dont think I can last for long on this diet, I need some real food. The think is that my doctor says that if I do get sick before my infusion  I need a sergery, since we have tryed everything. I met with other doctors and they are telling me not to have sergery. I am really confused and honostly a bit scared. I have learned a lot about UC for the past week since I have joined this forum and trully I have already learned as much as I have from my doctors.

Thank you

Ivaylo

Posted 5/26/2010 3:20 PM (GMT 0)
I'm sorry you're feeling so poorly. If I were in your shoes, I'd definitely consult a surgeon. GI's aren't surgeons, and some try to get patients to keep trying different meds, etc, when it's probably in the patient's best interest to have surgery. Have you been on prednisone this whole time? If so, that would definitely influence my decision towards surgery, due to the damaging effects of long-term pred use.

You may want to start researching different surgical options yourself. www.jpouch.org is a great place to go, especially if you are considering a j-pouch over a permanent ostomy. If you are leaning towards a permanent ostomy, the ostomies forum here on HW is a great place.

Good luck!
Posted 5/26/2010 3:26 PM (GMT 0)
I am sorry you're feeling bad. I am not sure whether food effects my condition at all but many people see great results from adjusting their diet. I have to wonder if the prednisone is what is keeping you out of a flare? Were you ever able to be symptom free without using prednisone while you were on Remicade? I've seen quite a few people here who have had Remicade lose effectivness quickly. They say stress plays a big role is worsening condition so try to stay calm. Surgery is not the worst option. I am scared of it too, it's a long recovery but it can get you your life back if you get really sick. I don't think surgery is a good option if you're not going more than 8x a day and waking up in the night because it seems like people who have surgery often end up getting up in the night to empty. Just my opinion and I prefer to be wrong on it so if I am, feel free to correct me.

It may be possible to do the infusions closer together. You definitely need to speak to your GI and get in to see him/her.
Posted 5/26/2010 3:46 PM (GMT 0)
I go to the bathroom not more than 2 or 3 times a day. Actually my main GI doctor is a sergeon as well, and he has been the one who has been pushing me for a sergery. I met other doctors and they told me that if there are times when i have been feeling good since I have been diagnozed then I should keep fighting as for righ now. That same doctor told me to hold on to my colon as much as I can.
I have been on and off prednizone since I was diagnozed in early january. The heighest dose I have ever taken is 30 mg a da, and really do not notice any side efects, the only thing is that my hands are shaking. There have been times when I had my REMI and asacol and was just fine. I get better really quickly and get really sick as a matter of a couple of days.
Posted 5/26/2010 3:57 PM (GMT 0)
I have more trouble if I don't eat enough. Solid food might help you! I had to avoid high fiber, though. Does ensure have lots of fiber?

You know the prednisone is probably causing your cravings!

But still that's not a very high dose of prednisone. And when you say on and off since January, did you taper down? I used prednisone for flares, starting with 30-40 and side effects were annoying but no long term problems from it for me. But it would take me 6-8 weeks to taper down each time. Then Remicade worked very quickly and very well for me, hurray.

Surgeons will push for surgery, that's a fact. It doesn seem like you haven't completely exhausted combos of meds to get out of this flare.
Posted 5/26/2010 4:11 PM (GMT 0)
They say that Ensure is a meal replacment high on calories, it has a lot of good things in it, like Omega 3 and a lot of vitamins. It does not have fiber, but has lots of soy milk and sugar which is not really good, but it is a good option for temporarily feeding myself. I know about the prednisone and making me hungry, but I think that it is good that atlest I am hungry. I will be lowering my prednisone to 10mg starting tomorrow, and will probably get some solid food in me. So today will be my last day on liquid, because I feel that I am loosing energy.
Posted 5/28/2010 2:28 AM (GMT 0)
If you were dx'd in Jan 2010 and are now down to 15 mg prednisone- well, that is not a long time to give up on steroids as you seek full remission. Personally it sounds very early to opt for surgery- it sounds to me as if you have been tapered much too fast- just my opinion. In my experience most GI's are far too aggressive in their tapering strategy, which results in needless, full re-flaring.
Posted 5/28/2010 1:43 PM (GMT 0)

I completely agree with you. I am new to this illness and honoslty I never expected to ever become sick like this. For the past 5 months I have been on and off steroids and had periods of full remission lasting not more that 3-4 weeks and then I would get my old simptoms back. My GI who is my sergoun as well, wanted to do a sergery long time ago. That is why I am even scared to go to him because that is what he will say again. I know that sergery is not a bad option, but I see in this forum that people are fighting with years before they make a comitment to sergery.

Since I did my liquid diet I definatelly fell a difference. Now I know that atleast I can partially manipulate my UC. My bleeding slowed down, and also I began having semi formed BM. Maybe I just want to believe that I am doing better but hope dies last. I am down to 10 mg a day now.

I noticed that a lot of people in this forum are taking fish oil. I made a research trying to find out why, and discovered that it helpes with the inflamation. Also I found out that apple cider is a great option to help with the inflamation as well. I am sure most of you already know that, but just wanted to share since I got some greate tips from this forum.

Posted 5/28/2010 2:07 PM (GMT 0)
I do a low residue diet while flaring which might be an alternative to all liquids your could try: http://www.mayoclinic.com/health/low-residue-diet/MY00745

I am confused about your treatment so far. 30mg of prednisone is a low starting dose. How many times have you been up to 30? How quickly is your doctor having you taper?

As for trying everything it sounds like you haven't even been given a fair shot on prednisone. And there's Humira. I don't understand why your doctor is pressuring you to get surgery so soon...
Posted 5/28/2010 2:23 PM (GMT 0)

So far the heighest dose I personally would start was 30 mg of prednisone. I was hospitalized twice and I am not sure how much I was getting there since it was given to me via IV. Everytime when I would get discharged I would start of 30 mg and my GI doctor/sergoun would tell me to lower with 5mg every week, since it this med has lots of side effects that I personally never felt. So it take me like 6 weeks to completely stop the steroids. I know for sure that prednisone is really heping me out. Last time when I was in the hospital that is the only thing they gave me. Liquid diet steroids and Asacol that was just going through me without disolving. So I know prednisone really helps me out but my doc says I need to be off them as much as possible.

I men another doc just for a second opinion and when he listened to the story he told me that 30 mg is a really low dose as well. He said that he strts his pationts on 60.  This second docotor told me that GI doctors do not want to give prednisone because it is cheap and very affective, and doctors are pushing more for REMICADE since it is a lot more money. I am tyerd of speculations and really do not know who to believe. This doctor told me not to have a sergery and my original doctor says I should. I would definatelly try you low residue diet. Thank you very much for your tip.

Isn't Humira like Remicade ?

Posted 5/28/2010 3:10 PM (GMT 0)
Generally, when you go on prednisone you take the starting dose until your symptoms subside, then you taper off of it onto maintenance drugs. So, you having gone on a low starting dose and starting to taper after a week regardless of your symptoms is what made me say your doctor didn't give steroids a fair shot at helping you. My doctor had me start at 60mg taper 10mg/week down to 40 then, 5mg/week down to 20mg, and then after I am going down 2-3mg a week. So, yeah a 6 week course 30-0 is quick.

As for Humira, it is the same class of drugs as Remicade but some people have success with it when Remicade fails.
Posted 5/28/2010 3:42 PM (GMT 0)
Be careful with apple cider vinegar, it caused me tremendous D, I also can't drink fruit juices either but many can. But yes to fish oil I take liquid not capsules, no fish taste.
Posted 5/28/2010 3:45 PM (GMT 0)
You have a very good point. I dont know if I should trust my doctor or not. As far as the prednisone goes as I said I am new to this, but have noticed that generally people here are taking it for longer and have heigher dose than me. So I do believe that he might be really quick on the prednisone. Also he told me that if Remicade does not work on me, then other medicine simmilar to it wont work as well, so it is pointless of trying it.
I am really confused. I will see him on the 10th where supposible I need to have my Remi infusion and will see what he will say. Curently I am in a mild flare so hopefully I do not get sick in a couple of weeks. If he tells me surgery again, then i will go to my other doctor who was against it. Thank you for sharing your experience it really means a lot to me.
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