Victory over UC

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aguywithuc
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Date Joined Jun 2010
Total Posts : 3008
   Posted 12/10/2015 6:33 PM (GMT -7)   
I returned to the same doctor I had argued with 2 years earlier post-colonoscopy. She gave me 2 choices at that time :

1) Have my intestines surgically removed
2) Go on Bioligics

I said 'No' to both but she sent Biologics to the house anyway.

I drifted away and another GI got up and walked out on me saying I had to be on Biologics. The doctor cannot heal thyself and your playing doctor he said.

What they did not accept was that I was the test platform for a large wide ranging experiment.

I returned to the same Doctor ( never to my original GI ) I had argued with 2 years earlier today and we were cordial. I had shown them labwork 3 months in a row that were perfect instead of over 50% of the measurements wonky and out of range. They backed off biologics and supported Sulfasalazine by itself.

So today I woke up from Propofol and wondered how our post-colonoscopy would go today. She repeatedly said I did 'REALLY WELL'.

I quizzed her on scarring to see if I was one of those lucky people who are told 'No sign of UC at all'. However she reported seeing extensive scarring which I cannot see from the dozens of photos provided. She said there was a small area of inflammation in the Sigmoid but that I did REALLY WELL. ( I have been diagnosed with PAN-COLITIS )

So for the people out there feeling they are at the end of their rope you can retain hope for better days down the road. I was really bad off many times including a paralyzing stroke and tendon surgery all primarily from Prednisone.

I still have UC but to me everything is as normal as it was BEFORE I had UC except I do not eat certain foods and I consume others plus key supplements to maintain balance and stability.

6.5 months of driving 2-hours per day forced me to limit any experimentation and now that I am local again it got even better since moving in.

Good luck. Do not give up hope. Fingers crossed here.

miestomaga
Regular Member


Date Joined Jun 2015
Total Posts : 164
   Posted 12/10/2015 7:08 PM (GMT -7)   
so you are saying 2 doctors suggested you go on biologics, you said no and you would fix yourself with diet and supplements and your plan worked? So you went back to the doctors to show them you succeeded?

sorry, just a little confused by your post.

also, why were you so against biologics?
M, 35, diagnosed January 2015

Asacol HD, Not sure if it does anything. GI mentioned discontinuing soon.
Azathioprine 75mg a day
Remicade, first infusion 10/6/15 (5mg/kg), three down now

Vit D, Curcumin, Fish Oil, Culturelle

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/10/2015 8:11 PM (GMT -7)   
miestomaga said...
so you are saying 2 doctors suggested you go on biologics, you said no and you would fix yourself with diet and supplements and your plan worked? So you went back to the doctors to show them you succeeded?

sorry, just a little confused by your post.

also, why were you so against biologics?


Today I saw GI #2 - all 3 GI docs wanted me on Biologics/Immunossuppressants.

I am raising my daughter by myself 100% custody. I cannot allow the small cancer risk associated with them.

Had I gone on I would have been their customer for the rest of my life never knowing what worked the diet plan or the Bioligic.

I want my choices to be clearly understood before I set upon a path with no return.

GI DOC #1 - Pro Biologics after we ran thru the light stuff
GI DOC #2 - Pro Biologics after scope 2 years ago, or surgery
GI DOC #3 - Pro Biologics after walking away from DOC #2

11/10/2015 returned to GI DOC #2 for scope and had a 180 outcome as reported by her.

That was the goal. Achieved now on to the next phase.

Returned for scope to measure performance against the goal. Yeah I felt great but the truth can withstanding questioning. Besides I skipped the scope last year altogether.

What I really want is Morgensen. I want the new gear not the old stuff ( Immunossuppressants ).

Post Edited (aguywithuc) : 12/10/2015 8:16:10 PM (GMT-7)


Martinco
Regular Member


Date Joined Oct 2015
Total Posts : 145
   Posted 12/10/2015 8:57 PM (GMT -7)   
Can you walk through what you did for healing? What worked and what didn't

I too am trying to heal naturally so far so goo
Currently on Uceris 9mg every other other day, started 9/15
L-Glutamine Powder Enema 1g every day
Rutin 1 tsp every day, Curcumin BCM-95

SCD Diet for the past 6 months with 24 hour yogurt
GI Pro Health SCDophilus 20 billion daily

Started FMT 7/30/15
Have done about 25 infusions with varying success, but it may have been the Uceris kicking in.

1 bm per day

miestomaga
Regular Member


Date Joined Jun 2015
Total Posts : 164
   Posted 12/10/2015 9:19 PM (GMT -7)   
Martinco- how much/what brand of curcumin are you taking?
M, 35, diagnosed January 2015

Asacol HD, Not sure if it does anything. GI mentioned discontinuing soon.
Azathioprine 75mg a day
Remicade, first infusion 10/6/15 (5mg/kg), three down now

Vit D, Curcumin, Fish Oil, Culturelle

Marauder93
Veteran Member


Date Joined Feb 2014
Total Posts : 1185
   Posted 12/10/2015 10:59 PM (GMT -7)   
1) Your GIs were 100% right based on all of the published literature, so I dont understand your desire to gloat in front of them. You took a risky gamble, and it paid off this time, but 9 times outta 10 your GIs would have won that bet 2) the risk of cancer comes from the imunomodulators, not the biologics as previously thought. Even so, the risk is close to 0.004%. The risk of colon cancer with uncontrolled pancolitis ranges from 7-40%.... 3) Idk why you think the Morgensen will be any better/safer than the biologics we have available now... it too is an immunosuppressive drug and itll carry the same risks as all the drugs we have now. 4) Regardless of the above, congrats on feeling better, but know that it is not the end of the road. We with pancolitis never see the end of that road Im afraid.

Casey_LB
Regular Member


Date Joined Mar 2015
Total Posts : 187
   Posted 12/10/2015 11:49 PM (GMT -7)   
I am also confused by aguywithuc's post. What is the point, if there is no information about how improvement was achieved?
Male, 54
Diagnosed with UC in 2013, in flare since April 2014
Asacol HD, 800 mg, 6 tablets/day
Rowasa, 1/day
Azathioprine, 50mg/day
Started Remicade 12/24/2014, not responsive. Discontinued March 2015
Started Humira, 8/1/2015, not responsive
Hydrocortisone enemas temporarily helped (did not continue past 3 months)

imagardener2
Veteran Member


Date Joined Jan 2010
Total Posts : 5604
   Posted 12/11/2015 7:01 AM (GMT -7)   
Hi aguywithuc

congratulations on your good c-scope, you must feel great joy that your colon's physical condition resembles your symptomatic state and that your UC is under control.

I also was faced with moving up the drug ladder to biologics and didn't want to go there. My GI was sympathetic but of course this is what is available to them. They cannot ethically tell us to try diet or supplements even though she (my GI) knew I was starting this and seeing the beginning of good results.

Supplements have not been my friend for the most part but a few have been beneficial. Finding the foods that did not p.o. my gut and other foods which helped heal it have been my biggest asset. But as you know diet modification is very very hard. My hard head kept me going as well as seeing some small improvements until they became added together into bigger symptom improvements. My last scope was the best in 15 years. I have UC (not pan-c like you) and no scarring was noted. My current GI (previous one retired to be a mom) doesn't push me to have an updated scope after 4 years until there is a reason for it.

Thank you for posting your success story. People need to hear all sides. I don't think it was a "risky gamble" especially reading about others who get no benefit from biologics or immunosuppresants or even surgery. Some of us just don't respond to current RX meds and the decision for our health rests with us.

Everyone chooses their own path, glad yours was successful.

ushippedyourpants?
Regular Member


Date Joined Jul 2015
Total Posts : 240
   Posted 12/11/2015 7:36 AM (GMT -7)   
What I still don't understand is, do you always have pancolitis if once diagnosed ? Does pancolitis ever become only say left sided, or proctitis, or are you cursed with a total bad, bad colon ?

Coffeemate
Regular Member


Date Joined Mar 2012
Total Posts : 192
   Posted 12/11/2015 7:55 AM (GMT -7)   
Good for you Guy, for your more or less clean scope and perfect lab work without the added risks of biologics. That is what I call taking charge of your disease.

There is good reason why doctors will monitor you very closely while on biologic therapy. Doctors can still say that the incidents of lymphoma are rare but they have to admit that it occurs more often than in the general population. Evidence published in 2006 in the Journal of the American Medical Association suggested that Remicade can triple the risk of skin cancer.

In general bIologics reduce your body's ability to fight infection, new infections of TB have been reported.

Biologics can affect your heart to the point that it is inadvisable for those with heart conditions to take this form of medication. (Aguywithuc is recovering from stroke which is different from a heart condition but I understand his caution.)

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10091
   Posted 12/11/2015 8:35 AM (GMT -7)   
I don't think it was a "risky gamble" either. Arguably it's a risky gamble taking the biologics. I thought I had gotten away scott-free from the effects of long-term steroids, biologics, etc., but I haven't - during the time I was on all those meds, periodontal disease set in. Every time I saw the NHS dentist, she brushed aside my worries about my receding gums, but today I found out my teeth are in an even worse state than I thought they were.

I feel like there's always a price to pay, no matter what we do.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/11/2015 8:38 AM (GMT -7)   
Marauder93 said...
desire to gloat in front of them


What on earth are you talking about ?

I broke away completely from GI's because they will not talk about alternative therapies or newer therapies.

Skipping the colonoscopy last year was not responsible unless I got in there this year as I am completely responsible for someone else.

I went in for the same reasons we all do. The fact that this Doctor is embracing my approach and scored me well after wanting to remove my intestines is 'nice'. It certainly was satisfying because I worked very hard but nobody is 'gloating'.

How is that I go back and work with them and now I am gloating ? I convinced them Sulfasalazine is all that is needed and now we are working together.

Sounds like a smart plan to me.

I posted an upbeat positive outcome, there is no need to be a Debbie Downer and ridicule others progress.

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1866
   Posted 12/11/2015 8:47 AM (GMT -7)   
Awesome news and good for you! It sounds like everything is working well.
40 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 4 Lialda + sfRowasa nightly + 5 mg prednisone- supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 2 TBSP p. seed powder, 2 g curcumin. Allegra for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS.

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/11/2015 8:54 AM (GMT -7)   
Martinco said...
Can you walk through what you did for healing? What worked and what didn't

I too am trying to heal naturally so far so goo


I still have the scars of PAN-Colitis. I would assume I will always have PAN-UC. As we all know UC can come back for unexplained reasons so that is why my fingers are crossed going forward.

Pride goeth before the fall.. I am aiming to avoid the fall.

I had been leaning on my GP who allowed me to direct my own care but I knew that was not the best solution and that getting the GI to work with me was more appropriate.

3 Consecutive stellar lab results seemed to get them to take me seriously. Data and facts.

It was only hours after I left that I began to reflect on this as a short term triumph, we all know UC could come roaring back.

Primarily I teased out foods that alarm my system chiefly:
-no dairy ( cheese seems ok ),
-NO bread ( I continue to eat a lot of Sprouts natural cookies ),
-no alcohol but a week long binge had zero impact just not healthy
-no whey protein and synthetic food/drinks.

Secondarily I consume things that have a healing aspect :
+Reward Pea protein
+Meat, beef or chicken
+vegetables
+and limited fruit
+Ashwaghand EVERY single night for relaxation and inflammation suppression
+Sulfasalazine when I remember to take it.

When in trouble Psyllium Seed powder, Potassium Sorbate. VSL#3DS, Qing Dai.

If I think of more I will return and edit.

When we first moved away I cycled through every natural protein out there and nearly flared until I found Reward. The constraints of driving 2-4 hours every day forced me to be disciplined. I have moved back and am on city water apparently no need to use the filter but am across town so perhaps got away from something that had been piped into the 3 homes I lived at during all of UC on that side of town. Town is exploding with growth so I might even be on a different water treatment plant in the newly built home.

The last BIG change I recall is giving up on bread. Gluten-free potato bread you name it they all seem to bother my system and potato bread tasted so good I would eat a whole loaf in one day so I just STOPPED all bread. Not all grains but all BREAD.

In the new house I have a Master Retreat/Office with its own sink and cabinets ( wet bar for drinkers ) and the idea was to get the 100 supplements out of the main level kitchen....I really do not reach for anything but Ashwaghanda now so it will just be storage until I figure out if I need them long term.

Post Edited (aguywithuc) : 12/11/2015 9:35:51 AM (GMT-7)


Marauder93
Veteran Member


Date Joined Feb 2014
Total Posts : 1185
   Posted 12/11/2015 9:10 AM (GMT -7)   
NiceCupOfTea said...
I don't think it was a "risky gamble" either. Arguably it's a risky gamble taking the biologics. I thought I had gotten away scott-free from the effects of long-term steroids, biologics, etc., but I haven't - during the time I was on all those meds, periodontal disease set in. Every time I saw the NHS dentist, she brushed aside my worries about my receding gums, but today I found out my teeth are in an even worse state than I thought they were.

I feel like there's always a price to pay, no matter what we do.


Not sure how you can say that. The risks with biologics are incredibly small, the risks with uncontrolled inflammation are very very large...

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/11/2015 9:26 AM (GMT -7)   
Casey_LB said...
I am also confused by aguywithuc's post. What is the point, if there is no information about how improvement was achieved?


Because I am not promoting any particular treatment.

The point is we should all retain some hope and strive for stability.

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/11/2015 9:31 AM (GMT -7)   
Marauder93 said...
NiceCupOfTea said...
I don't think it was a "risky gamble" either. Arguably it's a risky gamble taking the biologics. I thought I had gotten away scott-free from the effects of long-term steroids, biologics, etc., but I haven't - during the time I was on all those meds, periodontal disease set in. Every time I saw the NHS dentist, she brushed aside my worries about my receding gums, but today I found out my teeth are in an even worse state than I thought they were.

I feel like there's always a price to pay, no matter what we do.


Not sure how you can say that. The risks with biologics are incredibly small, the risks with uncontrolled inflammation are very very large...


That is certainly true and my plan was to get on a trial drug out of San Diego until I could get the newer fully approved drugs if I failed to reach stability. Worst case go on immune suppressors.

aguywithuc
Veteran Member


Date Joined Jun 2010
Total Posts : 3008
   Posted 12/11/2015 9:42 AM (GMT -7)   
Coffeemate said...
Good for you Guy, for your more or less clean scope and perfect lab work without the added risks of biologics. That is what I call taking charge of your disease.



Thank you. I certainly paid a price along the way as I liked prednisone but it caused stroke, bicep tendon burst, plantar fasciitis.

Everyone is different it is just how I chose to go about it. I solve problems and this was extremely difficult and its not over.

as NiceCupOfTea said "I feel like there's always a price to pay, no matter what we do."

That seems to be the case pick your poison. Up and downs in every choice we make. I worked incredibly hard to build new 1.2 miles from the high school for my daughters next 4 years, all the barking dogs by the lake shattered tranquility. Now we are high on a hill overlooking the Rockies from north to south and the view will not be built into. However the downside is the area is exploding in growth and the road is noisy mornings and afternoon with heavy concrete trucks etc. Just another problem to solve I am installing sound proof glass where necessary no matter the cost because everything else is perfect. This can be polished where the previous place could not due to location.

I made these choices because I need to be in control and live or die with the consequences this is NOT recommended. I certainly do not recommend someone direct their own health care via their GP. This is just how I chose to play it.

The GI #3 tried to frighten me by claiming they would remove my guts at the ER the next time. I realized they were all going to be the same so I felt GI #2 would be open to progress and I am glad I am now working with them and if I lose control of UC then I will hop on something as I stand a terrific chance of being here to guide my daughter through all 4 years of High School. That is all that really matters to me at this juncture.

Post Edited (aguywithuc) : 12/11/2015 9:47:34 AM (GMT-7)


iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11022
   Posted 12/11/2015 9:47 AM (GMT -7)   
ushippedyourpants? said...
What I still don't understand is, do you always have pancolitis if once diagnosed ? Does pancolitis ever become only say left sided, or proctitis, or are you cursed with a total bad, bad colon ?
UC is always classified by the furthest extent it has ever reached for a patient, regardless of current disease activity level. So, one can have pancolitis and: be in complete remission, have a flare affecting only one's rectum, etc. The furthest extent of uc has relevancy for future colorectal screening (when it starts and frequency) and also for the full potential of future flares. For example, as a pancolitis patient, you might begin colorectal screening after 8 years (rather than 10 for a proctosigmoiditis patient) and be more firm on annual colonoscopies than for some one with lesser extent whose crc risks aren't quite as high.
Moderator Ulcerative Colitis
John
, 37, UC in histological remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs

I should wear a crown on my butt as it calls all of the shots.

Canada Mark
Veteran Member


Date Joined Jan 2013
Total Posts : 3481
   Posted 12/11/2015 10:14 AM (GMT -7)   
Hey, awesome for you !

It's such a good feeling when your GI says you're doing really well. Especially given the options they proposed earlier.

I experienced something quite similar to you.

Anyway - best of luck and I hope you continue to find success.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11022
   Posted 12/11/2015 11:24 AM (GMT -7)   
Aguywithuc, congrats on the scope. Being in remission is such a huge accomplishment, especially after struggling for so long as we all are accustomed to. I hope you stay in remission a long time.

However, I don't believe the vast majority of us can follow you on a medication free path. My uc is pure evil incarnate, and only remains tolerable with the strongest possible medications available, even if I had the strongest will imaginable it's just impossible for me to be without meds. I would argue that you should add a mesalamine as they do lower colorectal cancer risks, and might extend your remission.

I wouldn't recommend writing off the stronger medications entirely, as you may truly need them some day if you flare up badly. You are fortunate to not need them now, but the future is uncertain for us all. The benefits far outweigh the risks overall for the uc medications, I don't feel they should be entirely avoided (unless you've had surgery).
Moderator Ulcerative Colitis
John
, 37, UC in histological remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs

I should wear a crown on my butt as it calls all of the shots.

Louiseluck
Regular Member


Date Joined Nov 2015
Total Posts : 79
   Posted 12/11/2015 12:46 PM (GMT -7)   
Aguywithuc never said he was free of meds, he takes sulfasalazine.
Generic Balsalazide, 3g/2x day, Rowasa (sometimes)

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3533
   Posted 12/11/2015 1:14 PM (GMT -7)   
I like reading your posts! Also, you have always provided what seemed to work or didn't work for you! Thank you! I wish I didn't try biologics, waste of time and a TON TON TON of money!
I'm holding in there. I'm trying grape seed extract now, asacol HD, l-glutamin, Vitamin A,  Dilflucan and nystantin and pancreatic enzymes. I'm holding steady.
 
I'm happy you had a great report on your scope!!
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. On Entyvio since may2015.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 11022
   Posted 12/11/2015 1:47 PM (GMT -7)   
Louiseluck said...
Aguywithuc never said he was free of meds, he takes sulfasalazine.


I initially missed that, thanks!
Moderator Ulcerative Colitis
John
, 37, UC in histological remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs

I should wear a crown on my butt as it calls all of the shots.
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