No one will listen

 First, hello to everyone. This forum has helped me over the last year thank you to everyone that posts!!!!

Now on to me, ha. I was diagnosed with UC in Jan of 2011, since then I have gone through a battery of tests and every med under the sun. (NOTE) i am allergic to ASA so none of that will work. Started with prednisone and immuran, and the flare continued for months. Hospitalized 4 times for passing out, seizures, and most of the time lack of food energy/sleep. Started on remicade in Sept with moderate positive results but the flares continued. Seen a pharmacist ( Fords Clinic Moncton N.B ) who specialized in right drugs for the right disease and he put me on, Omega 3, Vitamin D 1000, VSL(probiotic), Florastor250mg, Acidophilus Ultra, and he recommended the "O" type diet. Now to the point. I seem to have been somewhat better but still flare every 2 to 3 weeks and I still get small seizures, spike in fever, and cold clammy sweat. The doctor does not seem to be worried about my continued problems its normal to not be 100%. ummmm ? Anyway anyone throw in there 2cents to help a guy who is just getting tired and somewhat depressed.

 

The doctor does not seem to be worried about my continued problems its normal to not be 100%. ummmm ? Anyway anyone throw in there 2cents to help a guy who is just getting tired and somewhat depressed.

Doctors rarely get worried in my experience unless you go the emergency room. They are not living our lives day in and out and you are the person who decides what an acceptable quality of life is. I've never taken Remicade so cannot advise on that but I have quit drugs that made me feel worse without giving improvement such as 6mp.

Being allergic to mesalamines means you have to investigate what other rectal meds are available for you. Steroids used rectally are less damaging than oral steroids and can help in the rectal area. I've heard of budesonide enemas being helpful. Perhaps there are other types also. Do this ASAP.

Diet: has been my salvation. I've never heard of the O diet but many, many people with IBD have gotten better using diet modification. Gluten-free is a good place to start, low starch diet/paleo diet/Specific Carbohydrate Diet are similar with slight differences and followed by many with success. Basically remove starches and carbohydrates, eat protein and non-starchy veggies. Diet mod. is not an easy or fast fix but since you are already willing to modify your diet please consider the suggestions.

And yes if nothing helps then surgery is a valid choice and has helped many. You get to decide what to do. You do have choices. Best wishes.

P.S. Depression could be a function of your fatigue or weakened state but if it persists you should ask for meds for that.

It sounds like your road to remission is a long and hard one. Everyone on this forum knows how frustrating it is to try new protocols with little or no success.

Like imagardener and others recommend, a Specific Carbohydrate Diet (SCD) may be a good step towards controlling your flares. Removing certain foods from the diet has helped some of us gain some control over UC without relying on as many (or any) prescription drugs. Other approaches may help, including using anti-inflammatory herbs (Boswellia for example) and reducing stress in your life (I can recommend qigong).

When it's all said and done I don't expect much from the medical profession. These past several months I've learned the hard what that I'm my own best advocate and researcher. We often expect too much from people who may be great treating symptoms, but never learned how to cure their patients. And yes, I do believe UC can be healed/cured.

Hang in there. You are definitely not alone.

I would consider seeking out a new GI doctor. I had a hard time with doctors just not helping me. I went thru several GI doctors until I found one who helped me and I trusted. All the best to you.

I agree that doctor's will not always have all the answers or a magic solution however I certainly expect my doctor to have a goal of 100% remission for me.  I would not be pleased if my doctor thought that flares every 2-3 weeks coupled with small seizures and fever was okay or as good as it gets.  Neither my doctor nor I would be okay with that.  I suggest that you at least seek a second opinion.

Yes, I admit you are all right (that advise getting another GI). My experience for myself has been that there are no easy solutions without becoming your own advocate and insisting to your doctor that your symptoms are not tolerable. But you are right, a doctor that tolerates seizures without further intervention is a very bad doctor indeed.

But when the patient has been through prednisone, Imuran, Remicade and hospitalization then what do you see that doctor suggesting except surgery? (I made the suggestion of steroid enemas and a different diet mod. but am not his doctor of course). I see a doctor who is probably wishing that patient would leave and go to another doctor so he wouldn't have to deal with it. Just my opinion as always.

Thanks for all of the advice I have taken it all seriously. My options for GI's are limited in the Maratimes (N.B) the next closest one is Moncton and he is hard to get in to see. Im in the military and we dont often get options for Doctors its whoever is working that day so I have no continuity of care and zero follow up unless i crash and end up in emergency with seziures, and then they seem to listen for a couple weeks and then I get forgotten again. I have had some good days and some bad but im turning 40 years young this year and worry about the lasting affects of this on my body. All of this blood and constant pain in my bowls cant be good. Anyone have the seziure problem? or know anyone who has. I need some advice on that because the GI says "well thats weird never heard of that before" mabey you have the flu? Im considering a career in this field cause im sure I know more than this pancake head.

Hi tc-
I think you're lucky to have found this website. The contributors are knowledgeable and more than willing to help. Good thing you have a pharmacist to consult.....sometimes they are more knowledgeable and helpful than docs. Have you asked him/her about what may be causing the seizures?
There are many past posts on this forum that you might find useful. You can search for topics like "SCD diet" or "slippery elm" or "Vitamin D3" and find where these topics have been discussed.
Seems to me you need to go back to basics...adopting a diet that is easy on your gut and taking vitamins with iron to compensate for constant blood loss (along with the others that the pharmacist has recommended). The stress that you are experiencing is certainly not helpful. Hope you have access to stress management info.

Truthfully, many doctors are not very helpful. They are treating too many people to provide personalized service. I have to do the research and ask my doctor about whatever I want to try. It's hard to find the patience to do that when you are feeling weak and sick. I hope you see some improvement soon.