Victory over UC

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?

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

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.

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.

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.)

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.

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)

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.

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)

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.

Aguywithuc never said he was free of meds, he takes sulfasalazine.

Louiseluck said...
Aguywithuc never said he was free of meds, he takes sulfasalazine.

I initially missed that, thanks!