Doctor wants the knife. I DONT!

Hi Everyone.

I have been dealing with a terrible 8 month flare that just wont go away, and just when I start getting it under control one of my little girls or wife gets sick and it hits me like a ton of bricks and become a flare from hell. For the past three days I have had thee worst time of having to get up top go to the bathroom. I was close to getting a pillow and laying my head on my lap while I sat on the toilet. The funny thing is, it was mostly just gas and watery D. Very little blood or mucous. As I sat at 4AM, I decided to send a message to my doc. She told me that it is time to look at surgery. I don't want surgery. I read a lot of stories of people who have been living with UC for years and then getting it into remission I was diagnosed in 2010 went into remission for a year and a half and here we are today. I feel that my doc is giving up on me. Should I feel this way? Something tells me that surgery is not for me and that there is something out there for me to help me. Am I delusional? Is this what needs to happen? Is it time for a second third or even fourth opinion? My doc has me on a alphabet of medications. Asacal,prednisone,azathioprine and humira. Any thoughts of what I should do? I appreciate all opinions and suggestions.

Cheers!

We only *have* to have surgery when we're ready or, ack, if we perforate or develop cancer / pre-cancerous changes.

I am more or less in the same place. I'm on my third doctor, who wants me to talk to a surgeon in June, and I'm starting to explore 'non-pharmaceutical' methods.

sherbear46 said...
Where is your UC located?

To tell you the truth I don't know and my doctor has never told me. She still is not 100% sure its UC because she see a lot of things that might be chrons? I have no clue and I feel terrible for not knowing. I will find out though!

Berkeleydude said...

How are you doing right now? How are your symptoms? What are your thought on surgery?

I am not too great. Bleeding, urgency, unformed stool multiple times per day - full on symptoms. I just had a major med change on March 12th, so I am not able to judge my current meds yet.

I am not having surgery in June. I will go to the consult to learn more about it, but I'm also going to expand my diet and homeopathic options.

I think there are a few treatments that are just about to become more mainstream too.

I just know, with my luck, I'll have surgery on Tuesday and they'll announce a cure on Wednesday :)

dude, my doctor is always talking about surgery! he mentions it at every appointment even though he knows I don't want it. at my last appointment, I told him i'd rather be dead than have an ostomy bag. I think that's why he offered to try IVIG therapy. he doesn't recommend it a lot because most of his patients do well on the regular UC meds, but since I have other conditions that qualify for the therapy, he thinks we should give it a shot.

it totally sucks you are practically taking a pharmacy and none of it is working. I agree with gary and stop the stuff that doesn't help.

Berkeleydude said...
Have you tried any diets?

I have messed around with eliminating dairy and gluten, but I didn't notice a significant difference with either.

I did the SCD very hardcore for two full weeks. I was going less, because I was eating so little. I felt very hungry and depressed. I love food, and I was getting hung up on what I couldn't have. I also got overwhelmed by the SCD internet world. I would not say the SCD doesn't work, but it may not work for me.

I want to try addressing candida this summer, which will be another elimination diet. Yippee!

I think you need another opinion. If your dr hasn't told you where your UC is and says it might be Crohn's but still wants you to have surgery then you need to find another MD. Have you done upper scopes and/or MRE/pill cam? You need to find out what's going on, if there's disease in the other parts of your digestive tract, surgery is really the very last option. If it all looks like UC, it might be a good option (that's up to you).

One thing to remember is that GI doctors deal with so much more than just UC, Crohns, and IBS. We are the trouble patients, the ones with autoimmune diseases. They know there is not really much they can do with us. Many of their other patients have a trouble and the GI fixes it. With us it is try this, doesn't work, try that, doesn't work, try another thing, doesn't work - and they get very annoyed and some just don't have the time or the patience to deal with a patient who has an autoimmune disease that they can't do anything about. For some it is more annoying for them to have to deal with us than just taking the knife out of their drawer and saying, "Let's get this over with, I'm tired of having to deal with a patient who doesn't respond, surgery will fix you".

"Let's get this over with, I'm tired of having to deal with a patient who doesn't respond, surgery will fix you".

Yea, the sad thing is, surgery will not "fix you". For most, the problems and disease continue after surgery, like I said, do your research, find unbiased opinions, get the facts!

Probiotic said...
Try uceris. See "uceris is the bomb" thread. Uceris not approved as maintenance but it probably will be- theur own study showed no sude effects at 12 months. I am going to shelve my own surgery plans for the time being. Was hoping to be done with the DD but the potential for uceris to be maintenance drug is HUGE in my view- at least requires waiting for more data.

Isn't Uceris a steriod? How could a steriod be used for maitenance?? Just curious because I have a friend dealing with UC right now.

According to uceris' study using 6 mg uceris (the one sold right now is 9 mg) there were no side effects - zip- nada- at 12 month mark with the drug. I wish they made the drug available in say 3 mg doses and then one could try to find the minimal maintenance dose.

Personally, based on my own research (google the book "Safe uses of cortisone") toxic effects from steroids do not even begin until the blood level of cortisone significantly exceeds normal phsyiologic levels. The same phenomenon is true of things like radiation. Thus one can speculate that an extremely non systemic steroid like uceris might be safe for lifetime use with no issues. However that is just pure speculation... Even if there is toxicity though, it seems to me much lower than say the biologics that are now used for maintenance. I am comfortable with surgery (I still think itis VERY likely outcome for me) but would still like to avoid it if humanly possible.

Post Edited (Probiotic) : 3/25/2013 9:58:21 AM (GMT-6)

If you responded the best on flagyl and a healthy diet plus your idiot gi doesnt have any real answers for you and seems like she is throwing everything at you but the kitchen sink, I would very much explore another gi who is versed in pathogens.

A modified diet will do crap for you if you dont stick to it for ATLEAST 6 weeks. Thats what I have to say about all this diet stuff. If you cannot stick to it for 6 weeks dont even screw with it because you are going to feel defeated. Hell, it takes 6 weeks to even get a hang of such a modified diet. There is no point in half starving yourself for a week or 2. If you can only stick to something for a week, explore water or green juice fasting... or even a chicken broth only diet. Bowel rest, basically.

The diet is hard, but it makes me mad when people who have not actually stuck to at the very least, a SUGAR, gluten and casein free diet for a REAL trial tell people time and time again it doesnt work.

I still have Lyme and mycoplasma.. but a diet darn sure cleared up my UC. Now Im just dealing with fixing the damage and continuing pathogen issue and that takes time. But I have no blood, no urgency, no d since just 3 weeks into the Low fodmaps diet. Many many people find the most help from diet, hence why we have crazy Cults of SCD and Paleo..

before you do surgery everyone owes themselves a real trial of diet. It doesnt fix over night or in a week.. or in 2 weeks.. but in 6 weeks, if you really do stay gluten , sugar and casein free I have NEVER until this forum heard of anyone who was not amazed at the results. This place is true conundrum to me. But the sick still post and the well are off living their life.

Since UC study after study talks about how the folks who get uc eat too much sugar or junk food it is unsurprising to me that the rate of food addiction would be high. Our seratonin and endorphins are off because our guts produce that, so we crave and eat things to help our body compensate for the mess our guts are in. It is a viscious, viscious cycle. Plus, we are sick and who wants to cook and come up with a whole new eating plan when you are sick? Sometimes it is physically impossible.

Im so grateful I was able to change my diet. It was so hard at first and there were many stumbles. But the difference in my life has been amazing. Im so glad to not have to mentally inventory every clean bathroom and plan my day accordingly. Im so thankful to no longer wipe and see blood. Im so greatful for the healthful way I can now look at food. I no longer care about a piece of cake or whatever.. because health is worth way more to me then any momentary satisfaction.


Anyway, I wish you luck and wanted to just try to encourage you to give diet a real trial.

PathogenKiller said...
A modified diet will do crap for you if you dont stick to it for ATLEAST 6 weeks. The diet is hard, but it makes me mad when people who have not actually stuck to at the very least, a SUGAR, gluten and casein free diet for a REAL trial tell people time and time again it doesnt work.

Plus, we are sick and who wants to cook and come up with a whole new eating plan when you are sick? Sometimes it is physically impossible.

I had to stop after two weeks because I was no longer able to function. I was working 50 hours a week and my family was eating regular meals. I had to get a ride home the last night. I had more or less no support, and I could not continue.