Right on Jan!

I know what you mean about the unremarkable/normal thing Mema.  I had a MRI of my brain in September. The neurologist's nurse called and said it was essentially normal. Afterwards I was thinking what did that essentially mean?  The radiologists report sounded good on-line so I'm considering her essentially to mean normal!  That is a good thing about the Mayo Clinic.  They post everything right away.  For example I can have blood testing done in the morning and look at the results before my doctor's appointment that afternoon. Radiology and lab reports take longer but just a few days.

I think both suppositories are equal when inserting Mema. I think using them is better than draining an ostomy bag.  I had a difficult time with my stoma.  Lots of hydration problems kept me in the hospital for 16 days after my first surgery. They wouldn't release me until I went a day without getting dehydrated. It was a difficult 8 weeks before my take down surgery.  I keep reminding myself that permanent colostomy's are better than loop ones  I know that if this all comes down to that and/or other medications, like what Jan takes, are necessary I will survive. I think of us all as fighters or warriors. 

. 

Fighters and or warriors is a good term, I had the same thing with dehydration, in the hospital for five weeks and three surgeries and then back in because I was so dehydrated, I was down to 79 lbs. I remember wishing not very good things. It certainly was a fight!

As far as my pouch looking normal, I'd hate to see what an abnormal pouch looks like. I'm wondering if the Humira will help my pouch function a bit better. What a night, must have been up 7 times. I think I got two hours of sleep. I'm wondering if everyone eats too much do they get the same reaction as I do, and I don't even think that I had that much to eat. Do we all have to eat like birds to not get up at night? I ate quite early thinking that I could get some much needed sleep from the night before, and I don't know where it was all coming from, but it didn't stop and my tuss is so sore I can barely walk. 

You might want to click to the link Jan has at the top of the "Pouchitis" topic. There are pictures of some nasty j-pouches. Since your pouch is "unremarkable" those pictures should be worse than yours are. I'm on here all the time complaining about my pouch but it looks like a rock star pouch compared to these.  What these pictures don't show is the pain that comes from dysfunctional pouches. 

Well, part of the problem is that we often assume the pouch is acting up, when we have a whole lot of gut that is not our pouch. But, since we had this pouch surgery, everything "must" be related to it, right? Wrong! We can have stomach ulcers, gallbladder and liver trouble, small bowel Crohn's, adhesion related obstructions, irritable bowel, bacterial overgrowth, lactose intolerance, gluten intolerance, the list goes on. You can have all that, and a pristine pouch with normal function. 

It is also an incorrect theory to assume that if you stop eating early in the day, you will have a restful sleep. An empty gut will churn and the bacteria will work on your mucous to produce gas. You are better off eating a small dinner that is heavy on protein and fat because that signals the gut to slow down to digest. Maybe some peanut butter on a cracker before bed, or a slice of aged cheese. I have never found that starving myself improved things. But, my choices did. Late night pepperoni pizza always meant night time awakenings.

But, if you have active inflammation, not much to do other than treat it. The sooner, the better. If it were me, I'd go for a short course of prednisone to kick start things, and get going on immune modulators or biologics. Prednisone was my savior when I have an arthritis flare (where walking across the room was like walking through molasses). Sometimes I have a pouchitis flare at the same time, and prednisone helped both. But, I know you react badly to prednisone, so budesonide would be a better choice, for you. Just ask about the exception code when the doctor orders it.

Jan

Thanks again to the both of you and a big YUCK to the pictures of the pouch with pouchitis. Mine looks incredible in comparison to that.

I think that not eating did produce gas and that's what kept me up and made me go to the bathroom half of the night, plus I had a lot of sugar during the day. Thanks for all the good suggestions and ideas.

Curious about something and wondering if you can respond. Just reading about someone who had surgery for adhesions. If they find out that what I have is not crohn's and it's adhesions, why aren't they considering surgery, or PT. Isn't that a better option then to have to go on Humira? I know it's a question for the doctor, but wanted to get an opinion from someone else before I speak to the doctor.

Both Crohn's and adhesions are often uncertain diagnoses. Particular treatments for both Crohn's and adhesions are often unsuccessful. So the choice about what to treat, and how to treat it, is often a best guess, driven as much by personal preference as medical knowledge. For example: surgery for lysis of adhesions sometimes works great, but often fails to improve things, and can even make things worse. For some this is absolutely worth a shot, but for others it's an unacceptable context for surgery.

You might contact 'Shannon' on this site.  She has both Crohn's and fairly severe adhesions.  She found non surgical treatment in Florida that has improved her condition.

Sue

I think there is a lot of truth to what Scott says, and I have noticed that people get upset with a possible Crohn's Disease diagnosis, when what is really important is not the correct diagnosis but the treatment and whether or not its working.  I have been living with a questionable Crohn's diagnosis due to inflammation that appeared in my neoterminal ileum since 2008.  Because it is believed that it may be inflammation due to backwash stool causing SIBO, and has been treated accordingly, and I have responded to the treatment, the actual correct diagnosis is completely irrelevant to me.  There is a stricture and narrowing in the area of my J Pouch inlet which got very very bad when I let my diet get out of control with sugars and carbs, and got better when I improved my diet and went on Entocort for a few months.  Someone on this board, when I originally posted about my scope findings, said it's Crohn's and you just have to deal with it.  No! It is what it is and I have to deal with it, because labels are not terribly constructive or helpful and there is a lot of questions and shades of gray in applying a broad based diagnosis.

Focus on the treatment and not the proper diagnosis.  Treatment can be a trial and error process and has been with me.  In my case I believe reducing the inflammation in the area of J Pouch inlet reduced the stool backwash and resultantly reduced SIBO in the ileum, and the scopes since then corroborate this.

First of all, thank you all for your responses. As always, I get so much help from this site...we're so fortunate to have all of you on it. 

I'm really not terribly upset about the crohn's diagnosis, it's the fact that even if it isn't crohn's, it sounds like they are going to be treating me with Humira. One of my friends? sent me this link: archive.lyza.com/2010/11/18/how-to-make-humira-injections-hurt-less/

and it's frightening the heck out of me. I wished that he hadn't bothered to take the time to send it, although maybe it's for the best. I know that not everyone gets the horrible pain that's associated with this drug, but it sure does look like a lot of people do. I have been living with pain for over 30+ years, so I'm not unfamiliar with it, however, this sounds like a torture chamber to me, and I don't think that I can deal with it, if I'm one of the less fortunate ones that has to. So, with that said, I think I'm trying to get myself out of a situation that I'm terrified of and look for any way out that I can. Of course, I haven't even spoken to the doctor about the biopsies, so I'm putting the cart before the horse. Being alone a lot of the time gives me the opportunity to think about things that I wouldn't necessarily think of. I'm just not at a very good place right now. 

Mema-

A friend of mine who has been diagnosed with Crohn's has been taking Humira for 2 years and is doing well with it, and he told me the injections, which are inserted in his hips/thigh, do not hurt.  It's probably a little pinprick. He was actually given the Humira for AS which is another autoimmune disorder but it effectively treats both AS and the Crohn's from what he has told me.  The pain from those disorders, if not treated, are worse than any pain from the shots. Perhaps you should try it and see how it goes.  Good luck.

Thanks, CTBarrister, your message left a little better taste in my mouth! I think that I'm being all gloom and doom and have to over it already. I appreciate your response. 

Absolutely wait to find out if Humira is actually on the table before you obscess too much about it. For me, a little occasional pain was a reasonable trade off for less joint and spine pain. 

If, and only if, the decision is made to try it, here are my suggestions:

1. Get the prefilled syringe instead of the pen, so YOU can control the injection speed.

2. Leave the Humira out for an hour before injecting. 

3. Use the abdomen, not the thigh (less pain receptors). I know this from my own personal trial and error.

4. Ice the injection site and make sure the alcohol is completely dry before injecting.

5. Take deep breaths and try to relax. The more tense you are, the more it hurts.

6. I would not read blogs like you posted the link to. They are literary journals, meant to be good reads, NOT reassuring or helpful. This seems counter productive to me. It is one thing to know something will sting, quite another to be led to believe it will be "horrible." If it was horrible, I would not have been able to stay on it five years, injecting it weekly.

Jan

Thanks Jan for your soothing words. 

I'm pretty sure that I will be going on Humira whether I have crohn's or not. As a matter of fact, I got a letter from the doctor's office saying that I will be needing to get a Hepatitis A & B shot. I guess they're preparing me for what's to come. The shot is NOT fully covered by my insurance and it will cost me over $100 to get it. If I have it administered in the doctor's office it will be more. It just never ends. I think I'm going to have a money tree planted in the back yard with a big sign on it, "for medical use only".

I also am getting the Hep B vaccine (not Hep A though, it has not been suggested) . Just know that Hep B is three injections over 6 months. I started in December and don't get my last one until June. 

In regard to your charges, be sure to ask about a medical need waiver, because hepatitis vaccines are not recommended for the adult general public. So be sure that it is ordered with exception codes needed because you will be in a different population once you start biologics. It is not like you are getting travel vaccines!

Jan

I checked the Medicare website and Hep B is covered, but it appears Hep A is not. You can get them as a combined injection (3 shots) or the Hep A separately (2 shots). 

Still, check about a cost waiver, since this isn't for frivolous reasons, and you get a better response if you get them before you start the Humira. Be sure to get pneumococcal pneumonia vaccine too.

Jan

Hmmm, do I just ask for a cost waiver and tell them the reason why I'm getting it is because I'm going to be going on Humira, and when I do, do I call Medicare, or call the drug company that I need to deal with. This is all so darned new to me, and have never had to do twirls and spins before any of the drugs that I have ever needed. Beginning to get mighty disgusted with the health care system for the elderly. 

I've already had the pneumonia shot, I believe, so I'm all set there. 

Thanks for all of your advice, Jan, I really appreciate it.

I am not sure about that. I am not on Medicare so I am not well versed on how it all works. Plus, it probably matters what supplemental plan you have. I would probably start with supplemental provider, since it integrates with Medicare.

So maybe call your member services department with your plan provider?

Jan

FYI - If you can get the shots at Walgreens or other drug stores, you will save money.  The nurses told me this at my Internist's office when I was getting my shingles vaccine.  I got a prescription from her and the shot at Walgreens and it saved me over $30. Since I was under 60 my only insurance at that time would not cover it. The UHC nurse that was following my case tried to find that out.  They didn't care.  (Both my parents have had it and it was worth the $225 cost of the shot NOT to get shingles. Plus my doctor wanted me to get it.)

It's different when one is on Medicare and in a group policy. I was on the phone with the carrier the other day for almost an hour and finally asked to speak to a supervisor to make sure that the person that I was speaking to at first was right because it sounded so bizarre. The only thing that you save is the administration fee if you get it at any pharmacy, including Walgreens. I spoke to my doctor yesterday and he's going to try to have his office try to see what they can do for me with a cost waiver as Jan mentioned. My shingles shot didn't cost me a penny and I got it at my doctor's office, BUT I had Medicare insurance through the company that I worked for.Things are completely different when you have to get insurance on your own.

It sounds like we are comparing oranges to apples mema  I had UHC (United Health Care) insurance when I got my shingles vaccination and there was no waivers for it to be covered before age 60. I had 2 choices, wait or pay for it myself.  I was thinking maybe you could reduce the cost of the shots you need by doing as I did above.  I thought you were on regular insurance now like I was then.

Subsequently to getting the shingles shot I had to switch my primary insurance to medicare because I'm disabled.

UHC is my secondary insurance as long as I get it through my husbands retirement benefits. I now pay the same for UHC as my secondary insurance as we did when they were my primary insurance company.  Nasty governmental rule for people like me.  As soon as a spouse of the retiree, like me, is eligible to have Medicare coverage they can kick you off primary coverage. So I have worse coverage now because I got so ill I couldn't/can't work and I was transferred from being covered through a fortune 100 company police to a governmental one. Nice deal for the company. I got screwed out of better coverage for 8 years.  Believe me I had better benefits with UHC as my primary - except for the shingles shot, than I do with Medicare And I pay for Medicare Part B coverage on top of what I use to pay.  Lesson here is don't get sick - like anyone ever has a choice.  

If you were getting Medicare through the company you were working for and now don't have it when you aren't working doesn't compute in my mind - because of what happened to me.  I hope you do have better coverage than Medicare!

I will start off by saying with my original topic heading, "So Depressed"!!

I have a very good insurance coverage, which is Tuft's Medicare Preferred. It covers my doctors visits, hospital, procedures, etc. Then I have Humana which is my drug coverage and that's the culprit.

Day before yesterday I got a call from Humana - I have no idea how they got my name or why they called. The person I spoke to said that my first month of Humira would cost $970 and then go up to be in the thousands. I had company, and I don't think I heard a word more than that, I just couldn't concentrate. I was stunned. I immediately called my doctor's office and spoke to his assistant who said that she would look into it. 

Yesterday I spoke to the doctor and he has started me back on Budesonide. Luckily I still have some left from the last time, so I hopefully will avoid the $350 co-pay  per month on that. He also said that even though my diagnosis has not come back for crohn's yet, he's pretty sure that I have it and wants me to go on Humira. I called a number that I was given. They will be calling me today with more information, but I did speak to someone that said that if I were not on Medicare, the drug would be between $5 - $2 per month, but because I was on Medicare, it might cost me $120, of course, that would all depend on my income. 

I woke up with a pounding heart this morning and didn't even want to get out of bed. I'm just so depressed and can't even imagine spending all of my money on drugs. I pay over $200 per month between drug coverage and health care. Oh, and I still haven't heard anything more about my Hepatitis shots....more money. I take Nasonex and Librax, so add that to the list of uncovered drugs. I'm so discouraged and I don't know who to talk to about it. Shoot me now....PLEASE!!! 

I haven't been on this site for a few years but received an email today in my inbox from j-pouch and ironically my son and I got home yesterday from the hospital (he was diverted because of complications on the j pouch). That said, I skimmed your email and wondered if you've gone to Abbott's patient assistance program. In the past when my son was on Humira, I received a card from Abbott that essentially took my large co-pay (ranging from $133-250 per month) to less than $30 monthly. Search it...it took just a few minutes to apply and  the process worked very well.  Good luck

Thank you so much, I really appreciate your message. I will go on the site now to see what I can find. I also heard from the doctor's secretary today and she said that if I do, indeed have crohn's, then maybe they will consider Remicade, which is covered by Medicare. Right now, I'm just overwhelmed.

Sending get well wishes to your son, and good thoughts to you!

https://www.humira.com/global/savings-and-co-pay

Try this first, I remember it took me little effort to get the assistance and I know as long as he was on it, we received the help. I believe with my insurance every month it bills at the rate (you don't pay it), the meds ship, and then it reimburses the amount and bills the actual amount that you owe which I think I was paying less than $30 per month.  They will walk you through the program.  Hope this helps!

If you are going to be on Medicare you would need a prescription drug insurance plan that you pay for separately.

Not to be a buzzkill, but that patient assistance program for Humira does not apply for those getting reimbursement through Medicare plans. However, I am not sure if Medicare part D plans are considered part of Medicare (I would suspect they are). Even if your copay is high, you are getting coverage, because the cost of biologics is about $2400-$3600 per month retail. My last receipt for Cimzia was $3400 retail for a one month supply.

It seems silly (but just like the government) to cover Remicade, which is more expensive because there is office time and IV administration costs associated with it, but do not cover the other meds. However, the doctor can seek a cost waiver if he justifies the non-formulary choice. Medicare might require you to try and fail with Remicade before approving the Humira.

I know most Medicare part D plans are separate policies, but with Kaiser it is integrated with their Senior Advantage Medicare Supplement. Hopefully it will still be working well in 5 years when I enroll!

Jan

First of all, it seems at this point in time they are 99.5% sure that I am one of the lucky ones with a jpouch that does have crohn's.

Secondly, my doctor and his office has been incredibly helpful to me and and have been checking into every possible way to choose the best drug for me to be on. There's a strong possibility that they may choose Remicade instead of Humira. At this point I have just resigned myself to the fact that whatever it is, it is, and I'll just have to deal with it the best that I can. Perhaps the fact that I will be taking a short vacation in a few weeks with my children that has helped me over the hump. I'm tired of being ill and have had so many other things on my plate, this is just another bump in the road and another chapter in my life, and I'll, hopefully, go on just as I have in the past.

Thank you all once again for your suggestions and help - you've been a tremendous help to me.

You sound relieved. Hopefully the medication will clear up your leaking and improve your quality of life.  As Scott said it won't matter what the disease is as long as the medication works.

Have a wonder time with your family.  Aren't grandchildren grand?    

I'm not sure that I'm relieved, maybe resigned is a better word. Not much I can do about it. and feeling sorry for myself is only going to make it harder for me to deal with. Hopefully, I'll feel better. Right now I'm on Budesonide, and would you believe, I'm still leaking at night. Years ago, I would have cried if I saw it in my undies. Now, I just look at it and don't even give it a second thought. Guess you can get used to anything....well, maybe.

Resigned is a better word.  You have a good attitude. I need to read this post often. I get too discouraged when I don't know what's wrong and/or how to treat symptoms. I hope this medication kicks in soon.  

SOMETIMES I have a good attitude....it comes with the territory. I won't say I'm not frightened, because I am. 

It is OK to be frightened and concerned. It is natural. It just becomes a problem when it paralyzes you and prevents you from accepting what is, so you can move forward to a better outcome. We only have one life here, so I like to make the best of it, warts and all!

Jan

Thanks, Jan, I agree with what your saying wholeheartedly, and I do believe that I'm handling my situation as well as can be expected especially without the support of my husband, who I always leaned on heavily.

Right now I'm a bit depressed since the budesonide doesn't seem to be helping me at all and can't understand why. I'm waiting for the doctor to call to let me know if he's decided that I definitely have crohn's, but think I know the answer. Any thoughts on why the budesonide doesn't seem to be working?

Steroids can take a week or two to begin working. Perhaps it's just timing?

Thanks, I didn't thing that it took that long....at least that's giving me some hope...thought I was doomed and would have to go on prednisone, which is not what I want to do.

I agree with Scott.  It hasn't been in your system long enough yet.  I won't forget how long it took to beat my UC into remission soon after the diagnosis. We have all faced precarious times with our health.  We wouldn't have these pouches if we hadn't been ill.  I read a post of a j-poucher on facebook today that brought me to tears.  She's been in the hospital for an entire year and she's a young wife and mother.  I need to count my blessings more often.  I hope your doctor calls with a successful treatment plan to improve your quality of life Mema.  

Patience truly is a virtue. But, sometimes I am too patient and languish with symptoms too long, trying not to be a hypochondriac. I guess it comes with the territory when you've dealt with chronic illness since age 15.  So, finding that balance of not complaining too much and making sure you take care of yourself is no easy task.

As you say, you are doing the best you can, all things considered. Pretty damn good, I'd say! 

Jan

I know what you mean Jan.  I'm hesitate contacting my doctors too often while I second guess everything.  I've never called with questions or scheduled an appointment where nothing wrong was found.  I've often wondered why I agonize over it so much. I should have contacted my C/R surgeon months before my one year post take down appointment.  I kept telling myself that what I was experiencing was part of the predicted one year recovery time.  I had cuffitis and c.diff. So if anyone reading this is contemplating whether they should or shouldn't see their doctor - see your doctor.