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

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Posted 4/5/2015 11:26 PM (GMT 0)
Hi all,
Im going to try to give you my whole story so please forgive the upcoming wall of text.
Im freaking out a little bit because my doctor wants to take my large intestines out.

I have been on all different medications including:

Ondansetron Odt 4 Mg Tablet
Budesonide Ec 3 Mg Capsule
Humira 40 Mg/0.8 Ml Pen
Prednisone 10 Mg Tablet
Canasa 1,000 Mg Suppository
Prepopik Powder Packet
Acetaminophen-Cod #3 Tablet
Oxycodone-Acetaminophen 5-325
Dicyclomine 20 Mg Tablet
Famotidine 20 Mg Tablet
Vit D2 1.25 Mg (50,000 Unit)

I am currently on:

Prednisone 20mg
Entivio
Oxicodone/apap 5-325mg (half every 4 hours)
Azathioprine 150mg

Here is my story:

Im 33 years old, Im about to be a daddy, and was diagnosed 7/3/14. in July of last year i found myself unable to go to the bathroom for about 2 weeks. When i did go it was mucus and blood. Being young and dumb i went on the internet and all signs pointed to cancer so i rushed to a phone and called the first best Gastro i could find, I will call him Dr. A. When Dr. A saw me i explained my symptoms and he said it sounds like classic UC but he wants to do a Colonoscopy and scheduled one for 2 days later. During the colonoscopy the doctor took biopsies and sent them off to the lab but he said he can see i have a mild case of ulcerative colitis. He prescribed me a medication and gave me about a weeks worth of samples and boy did it work. After a few days i was going like normal again but... The doctor told me see how it works and when your about to run out fill the script and see me in 2 weeks. this is where the trouble began. When i went to go fill my script my insurance (BCBS) denied it because it costs too much and they wanted a prior authorization. I called my doctors office and they said when i come in in a week the doctor will prescribe me something else.

This is where things went from manageable to out of control.
My doctors said that since i started a med and it was working and i stopped taking it due to the above reason (insurance denial w/o prior auth) my flare turned very aggressive. Since then i have tried all of the meds i mentioned and they would work for a little while and then when my doctor would try to ween me off of the prednisone (-5mg per week) when i would get down to 15ish mg of the prednisone my flare would come back a little bit worse.

After taking pills and seeing no clear signs of remission Dr. A wanted another colonoscopy and found that i went from just my sygmoid colon being disease to 50% of my large intestines had been affected in a matter of 7 months, so he put me on Humira and after a few months it did nothing and my doctor told me that i built up antibodies for it. So he decided to try "The new best thing in UC/Crohns medications. Entyvio.

I started Entyvio 3 shots ago (the shots are on a 2/4/6/8 week cycle) my last one was march 12 and i dont get another one until 8 weeks from then so about 4 weeks from now.Along with the Entyvio i was also put on 100mg of azathioprin and 30mg of prednisone daily.The new meds worked, kinda. After my second shot i started to get my energy back, the cramps started to go away and the constant bathroom runs were all but gone. If i had to guess i would say i was down from about 20 times a day to 2-3. I was getting excited, i was getting better, then disaster...

about a week after my 3rd shot of entyvio Dr. A decided to try to lower my prednisone -5 mg a week. I lowered it all the way down to 10mg and then it happened. I caught a cold ( not sure if its relevant but light cold, no fever, soar throat and sniffles) shortly after that everything flipped and i started getting worse again. My symptoms ( urgent bathroom runs up to 10 times a day, waking up in the night and running to the bathroom, Loose watery stools and some small solid stools, left side cramps, blood in the toilet and upon wiping) all came back in a matter of a week.

So now we are up to date and this is my current situation:
After my symptoms came back i called my doc and he told me to raise the prednisone back to 20mg, increase the Azathioprine to 150mg (from 100mg) and call him in a few days to see how i feel. He said if i don't feel better he is going to want to do another colonoscopy and "i don't mean to alarm you but, its starting to look like we might want to take those large intestines out". Well a week later i don't feel any different ... HOWEVER!! i found that when i take my half an oxicodone my symptoms almost completely go away (minor cramps, and almost no need to go to the bathroom). Why? im not sure but im making my doctor aware of this on Monday (tomorrow).

The reason im here telling you this is because my wife is pregnant, Im young, and im scared. I dont want to loose any of my organs and i want to be heathy enough to take care of my pregnant wife. If there is anything in my story that gives you an idea of something i can try to get me into remission i would LOVE to hear it. All advice is good advice at this point.

Please Help me!
Posted 4/5/2015 11:51 PM (GMT 0)
What was that first med they gave you samples of that worked so well?
Posted 4/6/2015 12:05 AM (GMT 0)
Sorry, I can't remember the name of it :(
Posted 4/6/2015 12:19 AM (GMT 0)
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.
Posted 4/6/2015 12:25 AM (GMT 0)
My story seems similar to yours. Down to just Entyvio (no pred, no azo, still many bm / day but life is livable).

But here is one difference... My doc has OK'ed me to take Imodium occasionally. I only take it a few times a week now that the Entyvio seems to work OK but its OK to take a little more. Several docs said they don't recommend Imodium unless asked specifically because it treats the symptoms (diarrhea) and does nothing for the disease itself. Also, they don't recommend it because it is dangerous if the problem is not straight UC (risk of toxic megacolon, or covering up problems due to other causes like infections). Basically, I asked and asked if there was an over the counter drug I could take for relief and was told no for a long time. Then I asked *specifically* about Imodium and was told 'well, we now know what your diagnosis is, so it is OK'. I rarely take more than one pill a day, sometimes two (the label says two to four/day but that would be way too much to me) and never more than 4 days a week.

Ask your doc if you can take Imodium *specifically* (or as I do, a store brand of the same drug, Loperamide). One of my docs, a specialist in the field at UNC says she has had UC patients on Loperamide for 30 years. The Entyvio gets me 90% of the way there but that's not enough to live a normal life. Entyvio + Imodium gets me up to 98%. Funny - I take a $10,000 drug to get almost there and it takes a drug I can buy at the dollar store to make it really work.

*Note to others - I'm not recommending this in general... read the warnings above & consult your docs! *
Posted 4/6/2015 12:27 AM (GMT 0)
i would try remicade or simponi before colon removal. remicade usually helps the most out of the biologics. humira is the least effective for us.

oxy does nothing for inflammation. it is a strong pain reliever and slows down your intestines. it gives you a "fake" feeling of calmness but really, all your inflammation is still there.
Posted 4/6/2015 12:41 AM (GMT 0)
Yeah, i wonder why no remicade. The response rate is higher with remicade than humira and entyvio. The problem is that if you didn't respond to humira, the chance of you responding to remicade is probably lower but, don't get any bad ideas in your head, give it a try and see how you do. Entyvio is also not fast acting like some of the other biologics so I am not sure if you want to stop it sooner or give it more time. it really depends on how much you can take of this. You definitely don't want to go too far down the pred path. At a certain point, it's doing way more harm than good... To be honest, surgery shouldn't be a last resort, go get a consult and see how you feel about it. No reason to sit around thinking the worst. There are a lot of very skilled surgeons who can do a great job if it's the best option for you. Just make sure you do your research and choose someone with a LOT of experience. I wish you the best of luck. Congrats to you and your wife.
Posted 4/6/2015 12:59 AM (GMT 0)
Dr. A said that I will most likely respond the same way to Rem that I did with Humira. I will ask him to give it a shot. Also do you think it is wise for my doctor to try to ween me from prednisone before I go into remission when I have a track record of failing after I start my ween?
Posted 4/6/2015 1:15 AM (GMT 0)
You've had 3 infusions of entyvio? That's not enough to see full progress. You should check out entyvio warriors on fb. They are a great resource. I don't think it's a great idea to wean you from prednisone if you're still symptomatic.

As far as remicade, I've done great on it. Last summer I was briefly on humira and had side effects and my UC cramping returned. Just because they are in same category doesn't mean you will respond the same way. I'm back on remicade after the humira fiasco.

Surgery is a reasonable option and would likely give you your life back. Check out the ostomy forum for feedback. You just need to do your homework as far as the surgeon.
Posted 4/6/2015 1:36 AM (GMT 0)
Here are other things you could be doing to hopefully improve your outcome:

- take a probiotic (many here use VSL #3)
- take a vitamin D supplement, or at least insist on having your vitamin D levels checked
- take an omega 3 fatty acid (I take flax seed oil, others take fish oil)
- eliminate gluten and/or dairy, at least for symptom improvement
- consider fecal transplant as an option.

I assume your GI has checked for c.diff?

Also, only one mesalamine appears on your list (Canasa). It's impossible to tell from your post, but it doesn't seem that you are intolerant of mesalamine. You should be using a rectal mesalamine retention enema in addition to the azathioprene and entyvio. You might also consider adding an oral mesalamine.

Before talking surgery you should probably consider getting a 2nd opinion, too.
Posted 4/6/2015 1:52 AM (GMT 0)
I was taking vsl 3 but only for about a week. I didn't stop for ant specific reason I just never picked up another bottle. I'll go puck up more this week.
My vitamin D was really low, I have not had it checked for some time now I will ask my doc for another script.

I am lactose intolerant so I don't really use dairy but gluten is a regular in my daily diet.

I will ask my doctor about c.diff and fecal transplants

Post Edited (devick) : 4/5/2015 8:04:46 PM (GMT-6)

Posted 4/6/2015 2:14 AM (GMT 0)
By now they have almost certainly checked for c.diff, I hope, and FT has a pretty low success rate with UC;about 10% short term, less long term according to the papers I've read. I'd be willing to try FT though (asked, but no clinical trials were available and I'm not a do-it-yourselfer).

In any event, I forgot to mention in my last post that the Imodium (Loperamide, an OTC antidiarrheal) has a similar effect to Oxycodone on the gut symptoms but it is non-narcotic and has many fewer risks. I used to use Oxy to help w/ the diarrhea too because I'm old enough, 55, to have taken Paregoric (an old opiate antidiarrheal) as a kid. FWIW, Entivio really started to work for me consistently after the 4th(?) time so give it time if you can.
Posted 4/6/2015 2:44 AM (GMT 0)
Sounds a bit like me!.. diagnosed at 28 and whole world at my feet...then BAM! My world changed and it has never, ever been the same. What struck me most was saying you are scared. I was terrified....it's like you don't have control and what you thought was clear and concrete now becomes questions....what if I poop myself? ...get stuck in traffic? ..miss the meeting?...

So welcome to club U.C. Hate that you're here but glad you found us!

I'm sure others have chimed in already.....but in case they haven't....

-second opinion, probiotics (experiment), FMT's, natural products like wild oregano oil, aloe vera, smoking, other biologics, diets like SCD, eliminating gluten....

What saved me (literally my life and bowel) was IVIG. It's a blood product that utilize antibodies. I found 3 solid years of remission and as far as I know I'm one of the few people using IVIG. Sadly, it's not doing a good job as of late. However, it's worth mentioning to your doc, though he/she will likely poo poo it (pun intended). Just so you are aware my GI's will talk to anyone who is interested.

I know it's overwhelming especially in the beginning.
Posted 4/6/2015 2:52 AM (GMT 0)
You need a second opinion and daily rectal meds.

I suggest a second opinion because it's pretty fast for your doctor to be talking about surgery. And I say that as a totally pro-surgery person who would do surgery before Remicade, Entyvio, etc. You haven't even been hospitalized! That may not be the typical way of looking at it but if you've managed to stay well enough to work and do most of your daily stuff, and you haven't been sick enough (usually includes being dehydrated, anemic, and/or in debilitating pain) to be in the hospital, you're a long way from surgery.

You definitely need daily rectal enemas. I'd start with hydrocortisone enemas for a week. They can help immensely and quickly. You should also get melamine enemas but I'd wait on those until you get some hydrocortisone enemas working. Unless you can find a way to do both. Maybe melamine suppositories in the morning and the enemas at night.

Agree that you shouldn't be tapering the Pred as fast as you are if you are still having symptoms. If your doctor insists on tapering, you can get 1 mg tablets of Pred and can go down by 1 mg/week. It'll let your body adjust more easily.

I understand where notdancing is coming from but please don't try the Immodium until you really are 90% of the way to normal. Before that, there is a risk of toxic megacolon and other issues. I"m pretty sure Immodium is one reason I landed in the hospital during my first big flare. I only took 1/2 an Immodium once or twice a day but it slowed down my motility so much, I couldn't eat and was vomiting.

Finally, something about your story reminded me of my first big flare, the one where I had to be hospitalized. After the fact, I realized later my GI was not the right doctor for me. First, he never mentioned recitals! That to me is almost malpractice! Your doctor did but suppositories only. My doctor simply didn't present me with all the options, had rigid ideas on what to try (Remicade but absolutely not Humira, etc.), and his office dropped the ball on making sure I got my loading doses of Remicade at the correct times (sort of like the issue with your medication/insurance issue - why did they have to wait a week to prescribe something else?) Anyway, I think you should look around for a new doctor. My gut says your GI, no matter how well respected s/he may be, isn't a good fit for you.

Good luck.
Posted 4/6/2015 1:18 PM (GMT 0)
I did actually get a second opinion with my medical records and colonoscopy reports about a month ago, Sorry I forgot to mention this. The Doc I saw said that my doctor is approaching the situation the same way he would and he recommended I stay with him.

As far as the Oxicodone goes... I work in an office with 1 bathroom and 31 employees. If im having a bad day (most days w/o oxycodone) I cant go to work and I use a vacation day. If im not taking my 1/2 an oxi every 5-6 hours what else can I do to help me get through the day w/o urgency?

Not sure if this is relevant but I am 6'0, 190lbs and I take 1/2 and oxi every 5-6 hours for cramps. As a side effect ( one I saw as positive until now) I don't have to go to the bathroom with such urgency and I can go 4 hours without actually needing to go. Is this really unsafe for me?

PS All this information is helping please keep it coming!
Posted 4/6/2015 1:29 PM (GMT 0)
In terms of what to do today:

- try immodium instead of the the oxi
- get yourself some vitamin D
- get a prescription for rectal meds (steroid or mesalamine retention enema or both, I prefer mesalamine because it is a long term solution)
- when you call the DR for the new scripts ask if you have been tested for c.diff
Posted 4/6/2015 1:32 PM (GMT 0)
Ok I have a list of things to ask him in a OneNote file and I left a message this morning. Just waiting for him to call me back.

Isnt Immodium a high risk drug as well? (as far as TMC goes)
Posted 4/6/2015 1:34 PM (GMT 0)
You definitely don't want to treat UC with oxy. It's not helping with remission and it's highly addictive. And by slowing a UC gut down too much you could wind up with toxic megacolon. You might need to take a longer period of time off work to get this flare under control. I had a severe flare like yours and had to take 3 weeks off work to get stabilized.

Sue
Posted 4/6/2015 1:37 PM (GMT 0)
I will get some Imodium on my lunch break. Ill try it out from then till the end of the day tomorrow and see if it allows me to maintain my work functions appropriately.

As far as taking time off I am saving it for when my baby is born so I have about 2 weeks saved so far but I will use it if it will make me better.
Posted 4/6/2015 2:42 PM (GMT 0)
I am not understanding why your dr jumped right to Humira when all he needed to do is get you authorized for the other drug he had you taking at the very beginning that worked. Most people with UC start out on one of the 5ASA dugs -- Asacol HD, Apriso, Lialda, Pentasa, Delzicol and then only if they aren't enough (or you are allergic to them) do you get moved up to the immunosuppressants & biologics.

How long have you been on Entivo? My understanding of that drug is that it can take a while to work (several months). Also, how long on the azathioprine? That is anothe rdrug that can take 2-3 months to work. There is a special blood test when you are on aza to see if you are in therapeutic levels called a Prometheus test. Most insurance doesn't cover it, but if you call the lab they can work out a reduced cost for you.

I agree with the other about rectal meds. It could make a huge difference for you even if your inflammation extends past the reach of the enemas it can make a big impact on the worst symptoms of urgency.

Since it doesn't sound like you ever were on the basic first step drugs I would want to try maximum dose of Asacol HD or Lialda, mesalamine enemas and a short course of prednisone to get the symptoms under control and then see if you can maintain on the Asacol & enemas for long term treatment.

And there are other biologics out there that could be tried before surgery. I have read a lot of posts where Remicade is more effective that Humira and there are other biologics.

I know you said you had a 2nd opinion, but I am thinking that maybe you need a 3rd. And maybe you should hold off on a new scope until you see a new dr. Not sure why your present dr wants another scope so soon -- what does he want to see? Do you have any research hospitals near you that you could go to?

Best wishes to you!
Posted 4/6/2015 2:48 PM (GMT 0)
I agree with the others that Oxy is not a long term solution and could be doing more harm than good.

Azathioprine & Entyvio take a while to start working. Azathioprine takes at least a month and Entyvio seems to be taking a few months to really start working. I would not give up on them for a few months.

I would also push for Remicade if Entyvio does not work for you. The best thing to do is to come prepared to your GI appt and push for the treatment course that you want. My doc did not want to try Simponi but I brought all the information I could find about it and he allowed me to start the drug. He only did because I was so knowledgeable about the drug. We have to have to be our biggest advocates sometimes and not rely on the Doc for the final word.

Congrats on becoming a new Dad shortly!
Posted 4/6/2015 2:59 PM (GMT 0)
I have been on Entivyo and Azathioprine 100mg daily for 4 months now (3 injections) my 4th injection is on May 7th
Posted 4/6/2015 3:17 PM (GMT 0)
I just went back I reread your original post -- you said you were doing pretty well on Entivyo until you had a cold. It's possible that you may have picked up another bug along with that cold virus. You could have C-diff or some other parasite and the only way to know is to have a stool sample tested. No reason why your current dr wouldn't do that to make sure. Being on pred with some of those intestinal bugs can actually make things worse. And there are a LOT of intestinal bugs flying around these days. I just skipped Easter dinner with the family because my nephew just had his 2nd bout with a bug in the past month and they have all been passing it around. I figured it was better for me to stay away until they stop giving it to each other!
Posted 4/6/2015 3:29 PM (GMT 0)
There are two different schools of thought here on healingwell. First is, do not resort to surgery unless you've tried everything, every uc medication, every alternative treatment possible (these folks are afraid of surgery). Second group chooses surgery and wants an end to the life crippling uncertainty and suffering uc gives you, and opts for getting surgery as an escape. It sounds like you're on a fast-track for the second, in my opinion. Key point us you've got an aggressive case of uc that isn't responding to medications. You want certainty and to support your wife. Uc means uncertainties.

Most certainly get a second opinion from a respected gastroenterologist. Bring your case files, colonoscopy findings, etc.

Yes, get screening for cdiff, it would explain your nonrespondence to uc medications. If you're cdiff negative, then the uc medications aren't working for you.

Could you give entvyio longer to work, yes. Might it improve things? Possibly. Then again, it might not. It alll depends on how long you're willing to wait, and how much you're suffering.

Imodium helps some.

My recommendation is consider the stability and certainty surgery would give you. Uc can be darn aggressive and it's not unreasonable to choose that treatment when the patient doesn't respond to conventional uc medications. Begin reading up on ostomies, j-pouch surgery; just in case.
Posted 4/6/2015 3:32 PM (GMT 0)

iPoop said...

Most certainly get a second opinion from a respected gastroenterologist. Bring your case files, colonoscopy findings, etc. Begin reading up on ostomies, j-pouch surgery; just in case.

Would getting my intestines removed mean I would need a pouch or is there a surgery that reconnects me at the parts that are left?
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