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Doctor says nothing can be done... looking for more options.

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Ulcerative Colitis
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Posted 8/20/2009 3:03 AM (GMT 0)
So I am 20 years old and have been diagnosed with UC for 2 years so far. I have been going to a new doctor for the past year or so. At first everything was okay... I would have a few mild flare-ups but nothing too serious. I switched from Asacol to Lialda in February or so.

Just recently (in May) I ended up in the ER due to unbearable pain and excessive bleeding. I had a colonoscopy and was put on Canasa suppositories as well as Cortifoam steroids in conjunction with my 6 MP and 4 Lialda pills a day. Since then I have been wavering between feeling fine and not being able to move from cramps/having seriously uncontrollable bowel movements (as in "I should be wearing a diaper" uncontrollable). This oscillates with a period of around 10-15 days. I tell my doctor but she says I will always have flare ups due to stress. I am worried that I will have to continue to live like this and I don't know how I am supposed to pass the rest of college if I am unable to go to the school so frequently.

Does anybody know of any alternatives? I am thinking to ask my doctor if I can go back on Prednisone. I despised the side effects the first time I was on it, but I will do anything to make these frequent severe flare-ups stop!
Posted 8/20/2009 3:30 AM (GMT 0)
I feel your pain because I am also in flare right now and feel like I should be wearing a diaper as well, lol, even though it really isn't funny. I agree with your doctor in that stress will continue to make you flare because that is definitely the major culprit for me. Just know that there are other options. You mentioned going back on Prednisone. Nobody likes the side effects but the medication does work. I am currenlty taking it but wanted to taper off of it quickly- bad idea. My symptoms came back harder and stronger so make sure you give it it's full course. Also, there is a class of medications called, "biologics" which include Remicade, Humira, etc. They are IV infusions that help get people back into remission. I reacted to the Remicade so can't take it anymore. Doing a bowel rest worked for me twice. The only issue is that you have to go to the hospital, get a picc line, not eat or drink anything for 2 weeks and be fed by IV nutrition called TPN. It gives your bowel a chance to rest so that nothing passes through it. I may even have another bowel rest to get me out of this flare. Then of course, there is surgery. I have decided that it is time for me to have surgery but I have been contemplating for the last 3 years or so. I guess you just get to that point where enough is enough. Good luck to you. I hope you find something that works.
Posted 8/20/2009 3:46 AM (GMT 0)
I can for sure sympathize. I fought my initial flare for over a year and a half. Asacol, pred, 6-mp, sulfa, colazal, remicade, hydrocortisone suppositories, nothing worked and we were running out of options. My mom suggested a bowel rest to my GI and he agreed and I went into the hospital for 6 days on total TPN (no water, gum, mints, nothing). My GI did a colonoscopy after the bowel rest and I was pretty much healed and put on maintenance asacol. For as well as the bowel rest worked for me, I don't think it's a very common treatment. It isn't mentioned very often on here but I don't think it would hurt to research it and suggest it to your GI. You've got to be your own advocate. If my mom hadn't mentioned it, I doubt I would have have it done.
Posted 8/20/2009 4:56 AM (GMT 0)
Have you tried remicade?
Posted 8/20/2009 1:15 PM (GMT 0)
To me it sounds like the meds you are on is making it worse. I would see if you can try Remicade first. Maybe you can also see if your doc would put you on Imuran. If the remicade doesn't work for you, you may be able to move one Humira.
Posted 8/20/2009 2:50 PM (GMT 0)
Have you tried Entocort?

I've been on Imuran(azathioprine) since January. When I began, I was getting off a flare, so I was on 2-3 Entocort and 4 Lialda. I tapered the Entocort for about another month to give the Imuran time to kick in. It worked for me.

I hope you can find something. I don't think you're at the end of the road right now. *hug*
Posted 8/20/2009 4:00 PM (GMT 0)
Your doctor says "nothing can be done?" I would get another opinion! My doctor and I have been finding "things to be done" for the last 14 years. You have a lot of options. Go see if there is another GI out there who can help connect you with some different treatment plans.
Flares are indeed a part of life but that doesn't mean your GI should just say, "Yep. You're going to flare. Good luck."
Posted 8/20/2009 5:56 PM (GMT 0)
     After eleven years with the same GI doctor and numerous medications,  NO REMICADE though, he finally is at his wits end and is sending me to a GI doctor over at the Univ of Pa Hospital.  At least my GI doctor finally admits he cannot do anything more for me.  I am a bit tiffed because this last flare he increased my 6MP to 100 mgm and that knocked my white count WAY too low and I have been off the 6MP for almost two weeks now with a stat CBC ordered for tomorrow.  Hope it is better than the 1.6 it was (normal 4.0 - 10.0).  Best to look around for another GI doctor.

     about the Remicade, he tried pushing it a few years ago, but I did research on it and I am not a candidate for it.  My last visit to him, he finally acknowledged that fact.  Gotta do some things on your own.

Posted 8/20/2009 9:35 PM (GMT 0)
Definitely get a second opinion.  I am on Cellcept and that is helping my colitis along w/10mg of pred. 
Posted 8/21/2009 5:16 AM (GMT 0)
I don't see the need to use heavy medication to treat mild flares.

Have you tried probiotics and an anti-inflammatory diet? Have you tried meditation, yoga, breathing exercises,... to reduce your stress?

Posted 8/21/2009 6:19 PM (GMT 0)
There's also dropping out for a semester to reduce stress and allow time to rest and heal, if necessary. When I was diagnosed, I actually quit my job - which I felt was so stressful, it played a part in my disease. These people were even calling me while I was in the hospital. When you're sick enough to have IBD, you need to put your health and well-being first - to the extent you're financially able.

I would add that it's not necessary to be hospitalized to try bowel rest. The book The IBD Remission Diet talks about using predigested shakes and broths at home.
Posted 8/21/2009 6:20 PM (GMT 0)
Thanks for all the advice, everybody! I am considering switching back to Asacol as I have a sneaking suspicion that the Lialda is making me sick. I have a second doctor in Maryland since that is where I go to school, and I am going to make an appointment with her once I get down there. Hopefully she can put me on something to just get me out of this rut I am stuck in. :) Also, I will have to look into bowel rest since that seems like a good way to have a solid jumping-off point.


@subdued- I've tried every diet I know. Right now I am on the "nothing but Gatorade and maybe some plain white rice if I am feeling okay" diet. And I would not call it mild flares. They are very bloody and violent. I honestly think my doctor is full of it when she talks about stress... I have had a very relaxing summer. I will try probiotics (after talking to my doctor) but I hear they are ludicrously expensive and I am a very poor college student. But I do understand trying to avoid medication. I just need to get out of this funk before I can lower my dosages.
Posted 8/21/2009 6:26 PM (GMT 0)
Not all probiotics are expensive! VSL#3 is, but others aren't.

I would maybe cut back on the gatorade some...sugars can be hard on upset gastrointentinal systems, so maybe try water more often.

I think it would be worth it to inquire about going back on pred to get yourself out of the flare. I also recommend that you consider using rectal meds for maintenance. I fully plan on using 2 mesalamine enemas/week (I've chosen Sunday and Thursday nights) as my maintenance dose.
Posted 8/21/2009 6:36 PM (GMT 0)
@fruitgirl- thanks, i'll have to look it up!

I have been drinking water, but I didn't want to lose electrolytes and gatorade was the only drink I could think of. Do you know of any unsweetened drinks I could try that have electrolytes? I'd definitely give them a shot.

I'm already on 2 rectal meds... the canasa and cortifoam. I was given the option of a non-steroid enema to replace the cortifoam, but my experience with enemas has been pretty terrible. :-/

I do think that pred would be a good idea just to get out of the flare, although my doctor might want to switch me back to asacol from lialda first and see what that does, in case the lialda was causing the issues. I hope not though... I don't want to have to wait that long!
Posted 8/21/2009 7:08 PM (GMT 0)

kcolwell24 said...
@subdued- I've tried every diet I know. Right now I am on the "nothing but Gatorade and maybe some plain white rice if I am feeling okay" diet. And I would not call it mild flares. They are very bloody and violent. I honestly think my doctor is full of it when she talks about stress... I have had a very relaxing summer. I will try probiotics (after talking to my doctor) but I hear they are ludicrously expensive and I am a very poor college student. But I do understand trying to avoid medication. I just need to get out of this funk before I can lower my dosages.

I assumed that you said your flares were caused by stress and that they were mild, because that is what you said. If your doctor is wrong, then you should find a new doctor.

I've been there, when all I ate was white rice. Try adding a bit of turmeric powder (as much as you can tolerate the flavor) and butter (for flavor) to it. The turmeric should help calm the inflammation. I wouldn't be able to drink Gatorade. Sugars are pro-inflammatory.

Probiotics really are a must for many. I take them even when I'm not flaring.

 


Posted 8/21/2009 7:45 PM (GMT 0)
My GI for 12 years finally sent me to a specialist at UPMC in Pittsburgh...he is great!! I am now taking Imuran which is helping immensely...I was pred dependent. I would look into a specialist for sure and switch docs...I wish I would have done it sooner....and yes lay off the gatorade a bit... I mixed white rice with some boiled bonless skinless chicken breast...that seemed to sit ok but I still would have very bad cramps, blood, and urgency... My flairs were always very hard to control and seemed to run their own course....so far Imuran is doing the trick....
Posted 8/21/2009 9:12 PM (GMT 0)

mbx5 said...
I mixed white rice with some boiled bonless skinless chicken breast...

Yes. Chicken is good in that it's not hard on the digestive system and it helps keep up strength.
Posted 8/22/2009 4:52 PM (GMT 0)
Well, update:

I was admitted to the ER yesterday evening and I am staying for at least tonight if not longer. They put me on IV prednisone as well as antibiotics (apparently I have a UTI as well). I am also still taking my other 4 medications. I am not allowed to eat anything but I can start clear fluids (although the thought of anything besides water makes me nauseous).

I had a CAT scan last night and they told me I have very thick pan colitis and that I need to stay here until it clears up.

Feeling better, but then again, I am on pain medication!

about the chicken... not an option for me as I am a vegetarian! :P

Thank you all so much for the support! The doctor said if the Prednisone does not work, I should try Remicade, but I am hoping this does work!
Posted 8/22/2009 6:48 PM (GMT 0)
wow...hope you improve soon...it's good you went to the ER. A UTI as well...you must be in awful pain. good thing you're getting pain meds too.

Thick pancolitis...I'm assuming that means lots of scarring...

Keep us posted as to how you're doing..

quincy
Posted 8/23/2009 2:50 AM (GMT 0)

kcolwell24 said...

about the chicken... not an option for me as I am a vegetarian! :P

I don't eat mammals.

How about vegetarian meat? You can add that to your rice instead of chicken.
Posted 8/23/2009 4:07 PM (GMT 0)
Maybe your GI meant to be sure you understood there is no cure (except surgery). Some people seem to expect their UC symptoms to go away with treatment and never come back, and that's not likely. (Although I'm hoping Remicade will work for me like that, time will tell).
I hope you are getting some relief, let us know how you are doing!
Posted 8/31/2009 8:53 PM (GMT 0)
Thanks everybody!

Well, I got out of the hospital after 3 nights... now I am on 60mg of prednisone, tapering down over 3 months. It seems to be doing the trick, I am not having cramping or bleeding, and I am getting back to normal regarding my intestines! *cheers*

Of course, being on Prednisone blows, but I will be making a new thread on that topic as I keep getting terrible side effects. :(

Now I just have to hope that once I get off the Prednisone that the other meds will do a good job with maintenance. I am going to switch to a more specialized doctor up in MA who I will be seeing in December, so maybe then we can discuss other maintenance drugs.

I appreciate everybody's help... I will remember your advice once I get over this and when I have other flare-ups. (Though hopefully I won't have those any time soon.)
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