What are we all doing?

Since my visit to the ER Sunday, I have been thinking. (Dangerous!).

Since UC is an autoimmune disease, why do we all have GIs and not immunologists? After all, is UC not just a side effect of messed up immunology? Has anyone gone to an immunologist for treatment?

OT.. I feel great since I was put back on Pred and stopped everything else. Now only taking Pred, multivitamin and Vit D w/calcium.

What would an immunologist do? There's no way to fix what we have (yet!) so a GI is used to treat the symptoms and is better qualified because that is their specialty.

But that's a good question!

I asked this question once too. Alas, it seems most "immunologists" that one can see mostly deal with symptomatic treatment of allergies... But what we really have in mind is to see scientists who specialize in the immune system. They exist- their papers are all over pubmed - but they are not normally the types that see patients. There still seems a HUGE void between GI's- who in my experience are little more than paint by numbers technicians (try A- if A fails try B- if B fails try C etc)- and the latest science- and that gulf seems to hover at 15-20 years of time, very frustrating.

I went to an allergist/immunologist once and he had absolutely no suggestions for my UC. He was however very caring and helped with my allergies.

I didn't know there were immunologists. Question-I know someone who believes auto-immune diseases come in two's. She has two, but I believe the lifestyle of dealing with one might have contributed to the other...(aspartame->M.S.) Anyone ever heard this or believe it?

Sibby, my philosophy also..you have to be strong to fight this disease.

My Current doc, a Rheumatologist, has been the most helpful. He evaluated my immune system, is removing detox blocks caused by genetic mutations of 2 Mthfr genes, supporting my immune function with herbs ( yes, an Md that specializes in herbs, imagine that) and is attacking my digestive issues with supplements and herbs.

It's been so wonderful to be actually getting better. I'm so thankful to have made the decision to leave gastros/ internists..and to have found a truly unique MD.

It's true about GI's as every other specialist: "When you have a hammer, everything looks like a nail". If a GI takes a biopsy during a c-scope and sees manifestations of what is named as IBD (Crohns or Ulcerative Colitis) that is what they will name it and treat. End of investigation.

I think the OP is asking why a wider net is not thrown to investigate whether there could be another reason for the ulcerations. We have read here about misdiagnoses of many years until finally the correct diagnosis is found and not by their GI. Sulfite intolerance, an undiagnosed infection, Lyme disease are just a few that people have told about.

It's a UC numbers game. If most peoples symptoms are helped by the current diagnosis and treatment then that's how you will be treated. If your pathology does not improve with the current Rx meds then you head to surgery.

It takes a very determined person to reject medicine by-the-book when they are not getting better and start looking for alternatives. And, as stated, it's hard to find a medical professional who will take on your case and look for other possibilities. It just isn't in the system. You must become your own advocate.

Look, PathogenKiller bought her own microscope to examine her blood for clues. I'm in awe. And then she managed to convince a doctor to follow up on her idea. More awe because doctors don't like non-professionals telling them much at all.

Doctors are not miracle workers and each one of us is just one of their hundreds (thousands?) of patients. It's up to us to get healthy. If you aren't getting better after a couple years of treatment it's time to Question Authority. Or better yet look for answers on your own while not going off the deep end with quackery.

I took my daughter to a very respected semi retired old-school allergist/immunologist a few years ago. He looked at her immune system - IGE, IGG, IGA, NK cells etc and said it looked like all was well. She had EBV come up, allergy testing showed some environmental stuff and that's about it. I do think EBV is an issue for her but then what to do about it? This Dr really wanted to help her and was very concerned about her case but in the end he didn't have the tools to go any further. I think it's worth looking at the immune system though b/c sometimes immune deficiencies can present as UC/CD.

imagardner,
I will say, my Rheumatologist is not amused by my microbiology.. LOL. What Im most impressed with re: my doc is that he tested for things that nobody had thought to test for like Lyme, Yersinia Entercolitica. He was also aware of things like MTHFR mutations and HLA-D genetic issues. Yersinia is linked to crohn's and surprisingly I dont have it, but my husband who has been a vegetarian since age 11 does.. he has no digestive symptoms whatsoever, but his lyme(yes, he has it too- there is a question of whether one of us gave it to the other) or chronic yersinia infection (he remembers what we think was this illness, it started as a stomach thing and then progressed to his tonsils/adenoids.. they did 3 rounds of abx before driving it into his tissues and joints and setting him up for chronic disease) has caused pretty bad arthritis at age 33 in his shoulder joints and tendon erosion that looks like a shrapnel or gun wound in his shoulder tendons.. These pathogens can present so differently in everyone so it takes a doctor who knows that and is willing to look. I think Rheumatologists are the best bet for those doctors. My UC went beyond my stomach, it manifested as fatigue and muscle and joint pain quite often. As well as a horribly weakened immune system that caught everything that went around. Constantly sick with something, it seemed.

Buying the scope helped me to realize that something beyond what they were telling me was not right. I know not everyone should buy a scope. Infact, Id say most people absolutely shouldnt, because as you see from my "story" thread, it scared me A LOT in the beginning. I still get a tinge of fear when I see something new. But for me, it's a tool that I use to double check the work of my doctor and I on the root causes. I see my blood get more normal (most) every time I look and that gives me comfort to know Im on the right path. Its appalling that I had to buy my own scope to get to this point.

The most important point is the one you made that you must question things if you arent getting better.. especially if you are getting worse and throwing drug after drug at it. I wasted so much of my life just going along with the "experts".. but the thing is, nobody is the expert in me but me. My new doc treats me with respect, he listens to me and if I want to pursue an herb or supplement he NEVER shuts me down. He will give me his opinion and we work together. That helps me to become my own advocate and it helps me to change the whole paradigm of how I approach my health.

Like imagardner said, you must be your own advocate... nobody else is in your body. But also, you must realize that sometimes it is not a pill that is going to make you well or solve your issue, its a complete lifestyle change.. and instead of seeing the tragedy in that, you have to look at the blessings in it. If you look at it as a tragedy that you may never get to eat xyz again, or that you have to ask people to accommodate your health, then you miss an invitation by the universe into health and a life where you are truly healing well.

I have alot of issue to clean up in my health, but I truly have joy about the possibilities of my life now, without chronic illness. Its a long road, but Im finally on it.. not waiting on the sidelines for someone or something to fix me.

After reading through this I just want to second Imagardener2's post. That is precisely what me must do sometimes in order to heal. It's a battle to get better, and we do in fact need to be our own best advocate. Sometimes we need to research, or talk with multiple specialists, or make changes in our own lives. It can be an enormous battle, but if you take each moment as it comes it is all manageable. I find I'm able to take on about anything (knock on wood) these days as long as I can take it in bits and pieces instead of all at once.

That makes sinc I know I have intersticial cystitis (which is basicly the same thing as UC just in the bladder. I have severe allergies (which is immune related). I have excema (also immune related) If you do decide to go to an immunologist please let me know how it goes. My entire family has all kinds of immune related diseases so I would be interested