Well... hospital admissions are a funny thing for IBD patients, there aren't a lot of things they can do you for you in there that you can't do at home, unless you need IV steroids or fluids or antibiotics. If you go to the hospital the risk of contracting C. diff goes up dramatically so if you don't have fulminant disease that requires IV steroids, fluids, antibiotics etc. and you don't require close observation for electrolyte imbalance or bowel perf, then it's much better to stay home and manage your care with clinic visits.

That said, it sounds like you're in an argumentative/confrontational communication mode with your GI, and that might be preventing you both from addressing your issues. Might be time for either a very direct conversation about these concerns or a new doc.

I don't know if he is fear mongering with you, or just being non-specific. I believe that when he says you risk losing your pouch, he is talking about a future possibility, not an immediate, acute danger.

Both Humira and Imuran stay in the body for quite a while, so a few days one way or the other should not make that much difference. But, compared to Remicade, they clear faster. When I had surgery to remove an adrenal gland, I was on Humira weekly at that time. Neither my surgeon nor my rheumatologist could say whether I should stop the Humira before surgery to avoid possible infections and what-not. I compromised by skipping the dose the week of surgery, then resumed it the week after. I did not have a rapid cascade of inflammatory symptoms. But, then again, I was taking it primary for arthritis symptoms.

I agree with Liz that if you are butting heads with this GI and can't seem to get on the same page, maybe it is time for a new doc. I have been pretty lucky to have doctors who are straight with me, but allow me to make final decisions regarding my treatment. Obviously, the patient is the one assuming the risk, so you are the one who should decide which risks you are willing to assume. It is not clear cut, and just because a drug is proven effective, it is not equally effective for all. The same is true for side effects. I am not saying your doc is an idiot or even wrong, but he is not connecting with you in a meaningful way. I'll give him the benefit of the doubt and maybe he's been swamped with work and is feeling challenged by a patient who he sees as non-compliant. It happens. But, it does not seem like he is trying very hard to make you compliant- such as suggesting an appointment to discuss your concerns and to see if something new is going on.

I also agree that you are probably misinterpreting his message to mean you are headed for a crisis and need to be hospitalized. Hospitalization depends on your current situation, not a potential one. Again, this is all about communicating.

I guess that is why I like direct emails with my doctors. That way there is an actual exchange, not phone tag after a message left with someone else.

Jan

Liz and Jan,

I don't know why I started feeling so bad so quickly, I'm every other week with Humira so it amounted to 14 days without plus one, two , three days, then I started to go south. It tells me that I need Humira more often if the margin is that close.

I do realize that he was not really talking an acute immediate situation that needed ER but a future consequence possibly sooner than later, but why does he even say it when my issue is fatigue and joint pain not my pouch? We all know that losing our pouches is a possibility, and we live in fear of it. It seems he says it to head off all discussions which is what confuses me? Why not discuss my issue? If he doesn't have an answer for my issue at hand he should just say he is not sure what is causing it. Instead, I had to take matters in my own hands by eliminating drugs which precipitated a negative event. It hasn't been confrontational with him in the past but I have been irritated when he uses the 'lose the pouch' language. I told him that I will need to be near dead before I relinquish it, so am I near dead? No, I'm not near dead so let's not talk about losing the pouch let's talk about my issue, right?

I will be having this discussion with him next Tuesday but wanted some feedback here first. I didn't tolerate Imuran that well when it was prescribed the first time around, prior to Humira. The combo of the two though has been a negative for me -for months now. I've posted here about the fatigue and joint pain, it has gotten so bad that I can hardly walk, my feet are beet red, feel scalded, and every joint in my body feels disintegrated and inflamed. this is real, I'm not imagining it -he seems not to care about the fatigue or joint pain because he won't directly entertain that it even exists. He just says, take the drugs.... That's the problem for me right now.

MK

I would love to have an email exchange with him, he only does phone and he is adamant and the supposed expert -which causes me to doubt myself and just roll over, then shut up.

I told his nurse that if I HAVE to live with this level of Joint pain and Fatigue that I may need a Fentanyl patch because I can't do this level of pain 24/7 on the Narcotics that I'm currently prescribed...

MK

Jan is on the money, as usual. I'd add that most docs will go along with trying things, as long as the experiments are methodical and prudent. Lots of personal experiments are hard to interpret, because they're often not done carefully, and the underlying condition is changing unpredictably at the same time. I would recommend that when you make a change (preferably with your doc's agreement) you change one thing at a time, if possible. By stopping two meds at once you lost the ability to identify the cause of the changes that occurred.

MK,
I am so sorry that this is still happening...I sympathyse with all of the joint pain etc...I have not had the courage to get near any biologics yet...and they really don't know much about them in my neck of the woods.
That said, doctors play a game of 'let's try this first and if it doesn't work we can try something else.' It is a process of elimination for them...and they usually try the lightest dose, the least dangerous drug or the least invasive procedure first...leaving the big guns for later if need be...
My beloved surgeon has butted heads with me more than once...We have had moments of miscommunication and incomprehension but in the end we are both fighting on the same team...The one to make me healthy...that is usually what they are after...no real good doctor wants a patient to suffer but sometimes they get frustrated with us and don't seem to express themselves very well. It is your job to let him know that his comments scare the pants off of you and that they should not be used lightly.
I know that the threat of losing your pouch is a scary one...I live with the same fear constantly and every time that I have a problem my surgeon reminds me that the next surgery could be the last one for my pouch...it is his way of reminding me that pouches are fragile things and surgeons are not God...they can only do so much...(Eric is the perfect example...he fought a courageous fight to keep his k pouch but lost it in the end)...
Insist on clear lines of comminications, emails are good, they give you a trace of past conversations to go back to for future reference...see if he is open to that and list your questions precisely...
Hang in there, I know that you are suffering and that this battle is no fun.
Hugs
Sharon

Thank you Sharon, and all.

I'm distressed, clearly. I went along for many years with primarily Antibiotics and the ocassional round of Prenisone. Then out of nowhere in 2011, my system took it all to another level. I don't understand this.

I suspect my GI Doc has no answers for the Fatigue and Joint Pain which also include hair loss, flaking skin, skin wounds appearing, red hot swollen feet, numb and tingling extremities.

I'm so uncomfortable that I'm crawling (weakly) out of my skin, can't sleep, can't function. At this stage in our dialog my GI Doc has not even hinted at the possibility that Humira and/or Imuran could be playing a role in these symptoms. We have an actual face to face on Tuesday where I will be enlightened, I hope.

MK

Thank you Sharon, and all.

I'm distressed, clearly. I went along for many years with primarily Antibiotics and the ocassional round of Prenisone. Then out of nowhere in 2011, my system took

Have you calmly told him all the symptoms? That doesn't sound much like a drug reaction, but maybe your thyroid is out of whack...

MK,

Did you take imuran and humira during the course of your UC treatment?

I'm just wondering about the "mechanics" of the medication, and why it works now but not then (if you did take it for UC before the pouch).

I'm also experiencing horrible hip pain, but I haven't planned on asking my GI doctor or colorectal surgeon about it. I just assume he would tell me to see my GP and get a referral to an orthopedist or something. In fact, I'm trying to find a new GP now. My old GP dropped all his patients that have moved to medicare (including me) and doesn't accept any of the new state exchange policies. After trying 3 medical groups, they all have this new policy Even the Portland Clinic, where my GI doctor is, won't take new patients with any form of medicare, even if they are currently seeing one of their specialists under medicare. One doctor I picked at random from the yellow pages takes new medicare patients and gave me an appointment in February of 2014. I took it, but I sure hope I find something sooner than that.

Very alarming.

Anyway... there have to be some doctors somewhere who will take it, so at that point, I will try to get a referral ASAP to a orthodedic specialist and hopefully get my hips scoped and find out exactly what is going on.

At first, I assumed it was a medication reaction, because I know I have had that happen before. Then I figured it was because I'm bed ridden most of the day and my hips get sore from laying in awkward positions, so I"m seeing a physical therapist once a week with no progress there. Now I feel that maybe an orthopedist with knowledge of rheumatoid conditions is my best bet.

Man, I miss the days of having real insurance.



.

David, MK,
It is not always something that we are doing, taking or not doing...sometimes it is just us. I live a very active lifestyle, no car, tons of walking to/from transport etc and carrying groceries etc...so I should be in great shape. I also work out a lot (usually 1+hr/day) and I take suppliments.
That said, I am permanently exhausted, my hips are killing me, I am living off of NSAIDs and now opiates but I still cannot sleep from the pain. (flipping over my mattress has helped a bit...)
It is nothing that I am doing, doc says I do it all right but if I stop working out, I hurt more, if I stop the NSAIDs I squirm from the pain. Work or no work, exercise or activity I am miserable...I am now seeing a physiotherapist for my hips/back...no real relief...yet. But I have hope.
We are a screwed up bunch, biologically speaking...some of us just have an anatomy that requires high maintenence...I do not know why.
I am starting to belive that inflamation can become systemic like an infection...once one part of my body gets inflamed the rest seems to catch fire too...I become hard pressed to find a joint that does not ache and at the same time my guts start to hurt...don't know if it is a coincidence or not but it just is.
If someone finds a solution please tell me, the only thing that seems to make sense to me is food alergies...maybe something that we are eating is causing a systemic reaction in our bodies that insites inflamation...
Sharon

Scott-

"calmly"... really? I do try to be as Robotic as possible with my Providers but ocassionally a sliver of humanity leaks out. The first five or six times I inquired I was pretty matter of fact. My latest exchange was not so benign. In the context of this discussion, one could easily, and with justification take some offense to the word 'calmly' as it implies hysteria. Women, historically, and most unfortunately, have been tagged as hysterical when their concerns are not addressed and they dare become emotional or upset about their treatment. IBD patients, and J-Pouchers in particular end up with very long rap sheets, medical histories filled with all of our complaints and treatments. I have a relative, a Colo-Rectal Surgeon, and she is not shy at all about referring to J-pouchers as whiners and complainers. To her I always say, have you experienced these diseases personally? Are you aware of how devastating it is to have your dignity stripped, or sense your self esteem evaporating as you retreat from your social circles and society at large? I tell her that decades of daily battle are a very damaging torture if the course of illness is severe or fraught with complications.

There are always too many moving parts with this disease, sometimes my condition can swing wildly in the course of a single day. I try to be a reliable narrator of my condition but I'm not confident that I am reliable. I'm not imagining my symptoms, and I don't think I have the mind power to manifest these symptoms upon myself out of spite or any other agenda. For example, why would my condition turn south so quickly without Humira and Imuran? I didn't imagine my burning rectum, nor did I self manifest it, so right out of the box I'm in an uphill debate with a Provider who works from his/her charts, graphs, percentages, half lives, and expected outcomes etc... My rap sheet is so long with my Providers that I hate going in there, I feel like I have no credibility anymore, and I don't. I feel I have no choice but to nod and say Thank You very much...

Just sayin'


MK

Sharon,

You always have great insight and intuition, and you are so much appreciated. I do think that this disease presents locally early on and over time can become systemic involving all organ symptoms. Humira and Imuran act globally but seem most effective locally. I don't know what therapies are available for these non-GI symptoms but as you know so well; they can be serious and disabling.

Thanks again,

MK

MK-
No insult was intended. It sounded like your interaction with your doctor was deteriorating badly. We'll get better results from these interactions with docs when we can stay calm. Although it isn't fair, this is true regardless of how justified the upset is. I'm not blaming you here - not even a little - just trying to suggest a strategy when it's at all accessible to you. Others have pointed out here that our docs have the same goals as we do.

MK,
If all of these problems started after you started taking new medications I think it's safe assuming they are the cause! Maybe it is just one of them causing them. Your systems are horrible.

It took me 10 years of my feet slowly going bad before I finally found out I now have neuropathy. No one could tell me what was wrong with them during that time and I saw plenty of doctors and had many tests, including an MRI. It got thrown in my firomyalgia bucket and the rheumy said the problem was not caused by fibromyalgia. Not until they finally went numb and I finally landed at a neurologists with Migraines did my feet get diagnosed. No cause but he is "watching" them to see if he can figure out the cause before it spreads to my "hands". He prescribed a medication that has helped with some of the pain, at least. What I am trying to say - and your cousin story reminds me of this - we are not making this up! I use a cane many days and have a handicapped parking permit.

I also think these medications might have affected your thyroid. I have dealt with an underactive thyroid for 20 years and the last 3 years, since my surgeries started, I've had a difficult time because it has been uncontrollable. My GI at Mayo stresses that when my thyroid is underactive it affects my pouch function, as well as it makes my hair fall out, increases my fatigue and there are other problems. The thyroid controls our metabolism and affects every cell in our body. In July 2012 my local GI sent me to Mayo, after he couldn't get rid of my cuffitis, I had had c.diff too. My thyroid tested at .03 the normal range is .3 to 4.0 so I had an extremely low reading. My Internist had been testing me and had been adjusting my dose since take down 18 months before then. It is a continuing thing. My thyroid reading was fine at Mayo in July this year but 3 months later tested too low again. Sometimes it tests too high, over 4.0. I can usually tell now when my hair starts falling out! I use to have super thick hair that required thinning when I had it cut and it doesn't need thinning any more.

I suggest you get yours tested, before next Tuesday if you can. My local GI hadn't thought of testing mine so I'm guessing your GI hasn't tested your thyroid function.

I'm not saying this is the cause of all of your new side effects but I think maybe they did something that messed up your thyroid function or it just went out on it's own.

If you have not had your blood tested in a while it would be a good idea to have it tested for all the usual things including D, iron and B12 too.

Hang in there MK. I know it's frustrating and scary as hell. Well, it gets that way for me anyway.