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

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!

Mainstream meds don't work for me, so I use bicarbonate soda and molasses. The results have been dramatically positive for me, allowing me to resume a very hearty, sensible diet.

Here's the mixture:

2 teaspoons bicarbonate soda
1 teaspoon organic black strap molasses
250mls water

Add a little hot water to the glass to mix and fizz before topping up.

I make it up each morning and take 50ml shots throughout the day.

Also try some vitamin D3 5 000iu and natural vitamin E oil.

How to Make a Vitamin E Enema

http://www.ihaveuc.com/how-to-make-a-vitamin-e-enema/

Best of luck!

Also worth watching is Nourishing Traditions. There is also a pregnancy specific video.

Published on 23 Dec 2012

Sally Fallon, the author of Nourishing Traditions Cookbook, gives a presentation that discusses the research work of dentist, Weston Price, in the early part of the last century, there are compelling before and after photoes in this presentation that demonstrate just how our modern diet affects people in first, and then second generation children. She presents an interesting case for how this diet affects our DNA expresses its fullest genetic potential, and gives plenty of slow food for thought about how we may be able to turn this degeneration of our genetic expression around by learning from our elders, so to speak... the traditions of the indigenous people that Weston Price researched...

I highly recommend a viewing of the presentation for anyone thinking of having children, or grandchildren.

https://www.youtube.com/watch?v=7ixsBn_lfXE

What about Remicade? If you haven't tried that it would be a plausible option, and for some people it works really fast, anywhere from 1-3 infusions (2 weeks to 2 months). Other biologics include Simponi, Cimzia, or Stelera

My daughters uc has been very difficult to get a hold of too. As tough as prednisone is, get back on 40 mg when you are having or still having a flare. if when you get down to 20 or less and you are still showing symptoms, go back up to 30. (this is what my daughters GI has done)

She is also using Mesalamine enemas.... as it started to heal. She has needed to use the cortifoam a bit too, so she could start the enemas.

all of this along with lots of water, mulitvitamins, famididine (to prevent ulcers),iron if you are anemic and something like Miralax to keep things regular.

Hope this helps. It has helped our daughter start to get her life back.

I agree with you, try everything possible before surgery. please contact me if I can help. it sounds like your symptoms parallel my daughters.

Julie

I was also going to suggest Remicade. Cortenemas helped stop bleeding for me and mesalamine enemas helped with pain and cramping.

I did eventually fail all medications and had a colectomy with wonderful results. However, since this is something you are fighting against, there are a few other meds to try.

Biologics are way ahead of surgery usually. Has your GI brought Remicade or Humira up?

There is also cannabinoid therapy.

FrancisK7 said:

Biologics are way ahead of surgery usually. Has your GI brought Remicade or Humira up?

There is also cannabinoid therapy.

Click to expand...

He's listed Humira already.

Try everything before surgery. Remicade, diet , DIETS! even LDN. Or get into a trial.
THe reason I say this is i was diagnosed UC at 17. About 8 years later when I had bad flares they pressured me for the colectomy. I wouldn't do it. This was back in the 70s
I persevered things eventually calmed down and life was good for about 4 years and then I dveloped a stricture and abscess and was rediagnosed as CD. You will fond others who experienced this on this forum. My friends son struggled with UC for about 15years finally agreed to the colectomy. A year later he had Small bowel CD.
Good luck

I have a very aggressive form of UC. I have been on
Imuran which worked well for 8 years but it took 3 months or so to kick in. How long you been on it?
Remicade, lasted 1 year
Humira, lasted 10 months
Tofcacitinib been on the trial for 8 months, much more convenient then biologics but Im no longer responding
Next step is Entyvio which should be approved in 2-3 months in Canada.
To be honest I dreaded surgery but Im so fed up of a up and down life, frequent visits, crisis after crisis that Im no longer afraid. Only thing that worries me is developing Crohns

Bizkid said:

Only thing that worries me is developing Crohns

Click to expand...

You won't develop Crohn's just because you have UC. If at some point it is discovered that you have Crohn's, it means that you ALWAYS had Crohn's rather than having UC. One does not develop into the other.

Early/inflammatory CD Looks just like UC. VERY HARD TO DIFFERENTIATE unless there is small bowel involvement or strictures or fistulas. Before a colectomy for UC esp. if you have it less than 5 yrs. you should do whatever you can to make sure it's not Crohn's:
Small bowel checked thoroughly w/ pill cam
Genetic testing
Try 5 ASAs like pentasa. They are usually helpful for UC but not so much for CROHNS.
Maybe others here know of other ways to differentiate the 2

Yeah, unfortunately if certain signs aren't there it can be really hard to tell Crohns vs UC. I have an official diagnosis of indeterminate colitis leaning toward UC but my GI can't tell even after 5 scopes (flex and colo),with Biopsies, small bowel follow through and MRE.

Frozen girl have you thought about genetic testing?
Check out 23and me they do it for free and compile the data
Might help solve the mystery and provide better treatment choices for you

I have considered it, however in Canada I don't believe we have regulation regarding who can ask for genetic info and I'm slightly paranoid about 10 years down the road not being able to get decent insurance when the demand genetic info.

Paranoid I know. I personally would be rather interested to know (and any other health info, I would rather know the risks then be suddenly confronted) but it just makes me nervous.

I agree about trying remicade.

Also many opiate drugs like oxycodone cause constipation so maybe the IBD is being masked somehow as I've not known an analgesic to be the cause of improvement in IBD.

I only know that after Greg had major surgery to remove a benign tumor in his face he was given Movicol to take at the same time as the oxycodone! It was only for a few weeks but having facial bones removed was very painful!

Hi!

You might try posting in the entyvio/vedolizumab sub-forum or the support group thread - or just having a read. I can understand why your doctor was excited about this gut-specific biologic but it does seem that Entyvio takes a lot longer to work than some of the other biologics, especially Remicade. If, given your situation, you don't have time to wait to see if Entyvio will work or if you don't respond then, as others have said, Remicade would be well worth trying, as well as the other remaining biologic options like Cimzia/Certolizumab or Simponi/Golimumab.

Let us know how your appointment went. This might be a good time for you to get a second opinion too. When you're making major decisions like this it can be good to get another doctor's view.

Good luck!

devick: Can you change doctors ? I went to a new GI doctor last year and I hated him. I knew he was not the doctor for me. This year I have a new GI doctor and I just saw him last Thursday. I like him. I gave him detailed medical records regarding my colon health such as medications and surgeries and doctors and symptoms. I have c-diff right now and he is trying to get me a prescription for Vancomycin. And today I found out that I need to have Prior Authorization to get the medication ! So I am without any medication for three days now ( my PCP had given me Flagyl for 6 days but it gave me bad diarrhea ). Now I will find out on Monday if my health insurance company approved the Vancomycin. I already asked about the cost and even if it gets approved it is not cheap. The insurance company people even told me something about injections and the cost of those would be cheaper than the pills. I have AARP MEDICARE COMPLETE INSURED THROUGH UNITEDHEALTHCARE HMO - BANNER HEALTH NETWORK. I am disabled. Keep us posted on what is going on with you. Take Care.

Bizkid Entyvio has been approved here in canada now. We have been offered it at SickKids and are just starting the process of compassionate grounds to administer to a minor which is not approved for kids yet. Supply is scarce from drug company so docs have been asked to wait to write scripts according to our GI @sickkids for another month while it is dealt with.

FrozenGirl there are agencies you can use here for genetic testing and can keep your results private. For that you have to pay. If OHIP or your provincial insurance pays for it I would be concerned too unless it is done in research like the GEM study where the results are protected.

I would wait on Entyvio to start working for you. 3 dosages are not enough. Its not like Remicade. On the Facebook forum for Entyvio I find most people are seeing results as early as dose 5, but others at dose 7-8. Barely anyone I saw had results by dosage 3. Hang in there with it.

Otherwise Remicade or Simponi would be my suggestion. Simponi was the 1st drug that ever gave my kid remission and she has tried them all except Entyvio.

I know surgery is not what you want. I doubt many people ever do. When I was told it was surgery for my teen when she was 13 I was screaming no. I have spent the last year connecting with people who had the surgery for good & bad, learning about it. A year later it isn't so scary anymore. Connect with others in a Crohns & Colitis Group or Ostomy support group. If/when you have the surgery you will at least be prepared and can ask the right questions. Many UC patients are in essence "cured"after surgery and many don't have to take meds anymore. Yes there are some that diagnosis changes to CD but you need to weigh your quality of life. That to me is the most important thing. If your quality of life is poor because your symptoms can't subside ALL options need to be considered. Almost every person I have met with with UC who had colon removal tells me they wish they had it sooner. That is worth something.

I hope answers come to you soon.

there is also methotrexate drug.
heres also the IBD-aid diet: http://www.nutritionj.com/content/13/1/5

I am in a very similar situation as you. I have been in a severe flare since August 2014 and nothing is working. I started having flu-like symptoms intermittently and am currently experiencing the worst yet: joint pain, body aches, low grade fever, low hemoglobin of 10.3, etc. etc. I am just so tired of feeling this way I am really starting to consider surgery as an option.

I have finished 3 Entyvio infusions after failing to respond to Remicade, Humira, prednisone, Imuran (150 mg), enemas, suppositories, avoiding foods, and the list goes on.

I am curious to ask Nym though, how does the blackstrap molasses work for you? It is one of nature's most potent laxatives and it seems it would be counter productive to avoid the restroom 20 times a day. However, I am willing to try anything that has worked for anyone at this point.

How are you doing now devick? I see you haven't replied and hope you have found something to help you.

there is also the SSI vaccine trial going on just opened for UC :
http://www.qucrohnstrial.com/

As I mentioned in another post I had it really bad I started to Take fresh Cabbage Juice.

2 times a day once in morning and once at night when I juice drink within one minute for full affect.

8 cabbage leafs enough to make 4oz of Juice
1 large Carrot
1 small apple

juice and drink two times a day.

Also took probiotic with DDS1 and 5 billion biotics 1 tablet a day found at a speciallty health store need to have DDS1 as it will colonize your colon and help with the stool hardness.