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Help- Doctor is talking last resorts now - UC since 7/14

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Ulcerative Colitis
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Burli
Veteran Member
Joined : May 2003
Posts : 1267
Posted 4/6/2015 8:15 PM (GMT -7)

imagardener2 said...
Oxycodone isn't helping your UC, it's just depressing your colon (slowing down to nothing) so it appears you have fewer symptoms. Not a good way to treat UC and can potentially cause toxic megacolon if your colon stops moving.

I don't know what country you are from but biologics, both Humira and Remicade usually get tried before surgery in the US. Ask your doctor why he isn't suggesting them.

I did not want to go to biologics (failed all the other lower level meds) so kept at diet modification (no prednisone) until slowly getting better.

Surgery is not the end of the world, I'm glad it's there if I need it someday. Get a second opinion from another GI (not a surgeon) before scheduling surgery. Get copies of all your blood tests, meds taken in the past, colonoscopy results including biopsies and take them with you or you won't get any worthwhile answers or #2 GI will want to schedule another c-scope. If you've had one in the last 6 months you shouldn't need another unless things have gotten very bad since then.

Oxycodone is one of the best drugs I have been prescribed for my UC. It does indeed slow down the GI allowing me to eat and absorb the nutrients of my food.

Up until 2009 hospital stay I never had used any opiates or narcotics; the nurse strongly encourage pain medication saying my extreme pain was additional stress which was not allowing me rest and ability to heal as well.

I take 40 mg oxycodone per day and in 2010 was at 60mg/day and in the hospital I was severely malnourished ; the strong IV pain meds in the hospital allowed me to eat and recover while the Imuran, mesalamines and solumedrol kicked in and healed the colon. Remicade was then also added after I was out of the hospital. It was that pain medication which allowed me colon rest and, wow, did I all of the sudden have an urge to eat without dreading bloody bm's.

For a headache or other aches and pains oxy doesn't help but I'd be non-functional without it. Remicade, Imuran Apriso and Oxycodone are all legitimate medications for UC. I wish I had known about oxycodone back in the 1980's. All that pain and diarrhea I went through.

As for being 'pre-approved' for a drug from BCBS; I've been through that myself. Don't let them send you from one agent to the next. I didn't have pre-approval once and had not gone to my GI in over a year so they denied my Remicade. You need to try Remicade IMO. My solution was I faxed BCBS medical notes from another doctor. They don't explain things well. If it's like my insurance you basically have 1 year from each medicine approval and you're required to at least see you doctor once a year (get that cleared up for the future).

Hope it turns better.

I would call and hound them and not let up on them paying. Sure wish you could recall the drug.

You might just required more steriods. I was on 80 mg to prednisone then when hospitalized I was put on 60 mg solumedrol (IV) plus IV pain meds and a lot of mesalamine plus 150mg imuran and Remicade...just thinking more steriods (IV) is a shot until that Imuran kicks in.
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DMC2011
Veteran Member
Joined : Jul 2011
Posts : 2512
Posted 4/6/2015 9:01 PM (GMT -7)
Me too dr A
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elw
Regular Member
Joined : Dec 2014
Posts : 79
Posted 4/6/2015 9:38 PM (GMT -7)
My doctor said Entyvio needs at least four infusions before determining whether it's working. In the meantime, I had a temporary ileostomy that has given me a great deal of relief--it's complete bowel rest. It's not conventional practice, though.

As for the mesalamine enemas, you should give them a try, but if you're severely inflamed, you might not be able to retain them. I couldn't. And then after I had the temporary surgery, I tried them again and could retain them, but they made me worse! Big increase in blood and frequency.
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DMC2011
Veteran Member
Joined : Jul 2011
Posts : 2512
Posted 4/6/2015 10:57 PM (GMT -7)
Elisa when are they gonna put back your colon? What are the plans? Just curious
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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 6:47 AM (GMT -7)
Ok, I started the Imodium last night. It works great, however...
Without my Oxicodone I can feel my cramps and they are major. Im having a hart time sitting up strait let alone standing. It hurts my sides to breath. What do I do about that?
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 4/7/2015 7:58 AM (GMT -7)
Eat low residue foods or stick to a liquid diet until you have better control of your disease. Use a heating pad on your belly. Ask your GI for bentyl to relieve the bowel spasms.
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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 8:08 AM (GMT -7)

kazbern said...
Eat low residue foods or stick to a liquid diet until you have better control of your disease. Use a heating pad on your belly. Ask your GI for bentyl to relieve the bowel spasms.

Bentyl instead of Imodium?
I will try that heating pad idea out. Thanks :)
Im wondering though if it is the diseased parts of my intestines that hurt of the amount of trapped gas I accumulate from the disease.
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 4/7/2015 8:22 AM (GMT -7)
Bentyl in addition to the immodium, I would think. Personally I would not take immodium very often, but I haven't been having diarrhea 10+ times per day in a long time.

If you are having trapped gas, a lot of walking, twisting should help, plus you can let that gas out on a toilet. You might consider gas-x.

I know you wrote that you are not eating dairy. Please avoid raw fruits and veggies too.
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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 8:30 AM (GMT -7)

kazbern said...
Bentyl in addition to the immodium, I would think. Personally I would not take immodium very often, but I haven't been having diarrhea 10+ times per day in a long time.

If you are having trapped gas, a lot of walking, twisting should help, plus you can let that gas out on a toilet. You might consider gas-x.

I know you wrote that you are not eating dairy. Please avoid raw fruits and veggies too.

I took immodium last night at about 7:30pm and it is the next day now at about 11:30am and my symptoms have not really come back in full force yet so I don't see myself using it very often ... I will ask my doctor about bentyl though.

As far as the gas goes I have no choice but to let it out on the toilet because of the blood involved. I did try gas-x but It doesn't work well at all with me. My doctor gave me some mint gas pills and they work ok but I feel like I ate too many candy canes after I take them because I start to burp mint for hours lol

Post Edited (devick) : 4/7/2015 10:13:22 AM (GMT-6)

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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 11:03 AM (GMT -7)
So, like I said I took Imodium last night at 7:30pm and I havnt had an urgent bathroom run since then. I tried to go and couldn't because I didn't need to. Its 2:10pm the next day. Should I be worried?
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Lonie
Veteran Member
Joined : Feb 2005
Posts : 6448
Posted 4/7/2015 12:42 PM (GMT -7)
Hi Devick, Immodium lasts for me about 12 hours. Also, sounds like you have a good plan with your GI, but you know your personal and body situation better than anyone -- we can only give you suggestions. I was very sick before I started Remicade and it worked well for me. After five years of Remicade, I'm now on maintenance meds. When I was at my sickest, none of the maintenance meds including the enemas worked for me. Only the Remicade worked...but that again was me! I also take Vitamin D, a probiotic, a fiber pill, and drink Kefir on a daily basis. I feel well, so I'd like to think it's all working for me! Good luck to you -- I know this is a tough one, but remember that there are many folks here that are amazing and willing to listen and give a lot of support.  
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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 12:56 PM (GMT -7)

Lonie said...
Hi Devick, Immodium lasts for me about 12 hours. Also, sounds like you have a good plan with your GI, but you know your personal and body situation better than anyone -- we can only give you suggestions. I was very sick before I started Remicade and it worked well for me. After five years of Remicade, I'm now on maintenance meds. When I was at my sickest, none of the maintenance meds including the enemas worked for me. Only the Remicade worked...but that again was me! I also take Vitamin D, a probiotic, a fiber pill, and drink Kefir on a daily basis. I feel well, so I'd like to think it's all working for me! Good luck to you -- I know this is a tough one, but remember that there are many folks here that are amazing and willing to listen and give a lot of support.

Thank you so much and as this was my first time reaching out to someone besides my wife to hear my story and tell me the ideas that come to mind, I am very surprised at the outcome.
I have already mentioned some of the ideas that you guys suggest to my doc and am moving towards hopefully getting me better...I have an appointment for this Friday with the lab for all the tests and I am also going to speak to a surgeon on the 21st so that if it comes down to it, I will know what im getting into.
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devick
Regular Member
Joined : Apr 2015
Posts : 24
Posted 4/7/2015 1:52 PM (GMT -7)

Lonie said...
Hi Devick, Immodium lasts for me about 12 hours.

Its been over 20 hours since I took it and I have only gone once @ about 6am. I should be up to about 10-15 times by now. Is this reason to be alarmed? I'm debating on weather I should notify my doctor or wait to see if it continues until tomorrow.
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Lonie
Veteran Member
Joined : Feb 2005
Posts : 6448
Posted 4/7/2015 2:02 PM (GMT -7)
I'd say wait until morning -- if there are no results then give your doc a call. Everyone is different though, so I'd say go with your gut (pun intended!) Are you having any cramping at all, and have you been eating regularly? If you've been eating, I'd think your gut would start working soon. If not, it might take a little more to get things moving. I'm no doctor though.

Some good news is that you are educating yourself and taking in all you can before your doctor's appointment -- knowledge is power. It's kind of a good feeling to let them know you've been "searching" for options to take control of your body. Many of us have a lot of years of expertise behind us! Take care and keep us updated on how you are doing. Thinking of you!

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Dr-A
Veteran Member
Joined : Jul 2006
Posts : 2105
Posted 4/8/2015 6:21 AM (GMT -7)

devick said...

Lonie said...
Hi Devick, Immodium lasts for me about 12 hours.

Its been over 20 hours since I took it and I have only gone once @ about 6am. I should be up to about 10-15 times by now. Is this reason to be alarmed? I'm debating on weather I should notify my doctor or wait to see if it continues until tomorrow.

Everyone is a little different with how they respond to it. I took 4 yesterday before I went to the doc. Still went to the bathroom just not the urgency. Will take some this morning before going to work. Doing this for years. I just use it when going places.
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 4/8/2015 7:08 AM (GMT -7)
While Imodium can make your symptoms better, I don't think it does a darn thing in healing your UC, which should be the main goal because your symptoms will get better if your colon is healing.
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Lonie
Veteran Member
Joined : Feb 2005
Posts : 6448
Posted 4/8/2015 1:52 PM (GMT -7)
Devick -- how are you feeling today? Did you have any movement at all?
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