In my mind there is more to be frightened of with untreated IBD (doesn't matter whether you call it UC or Crohn's) than the drugs being offered to treat it. Sure, it is anxiety provoking to have to think about new treatments. But, believe me, the anticipation is much worse than reality (I have been on one biologic or another since 2005, and no side effects yet). 

My one question for you is do you have a Medicare advantage supplemental plan with a Part D drug plan? If not, THAT should be your first order of business. That might help with your anxiety about treatment copays. 

Hope things get better for you.

Jan

Thanks, Jan, I agree that a problem that is and the anticipation of a new drug is very frightening. I just can't imagine having a pouch that does not function well, plus crohn's if that's what I do in fact have.

As to your question about a Medicare supplement and Part D, yes, I have both. Before getting the insurance that I now have, I researched every type of insurance and used the program "Shine" that helped me make a decision based on the medication that I was taking. When I called Humana, the drug part of my insurance today and asked about budesonide, that was the price that they quoted me....it's a tier 5 drug.

Jan, just noticed the post beneath mine. Would it be possible that the narrowing is not caused by crohn's and is from scar tissue? Would taking biopsies be how they can tell if I do have the disease? Is there any way that they can be 100% positive that it is crohn's from the biopsies? I don't have any fistulas that I know of at all. Isn't that one of the signs of crohn's? 

Last year when I had the blood test to see if I did have it (the one that is sent to CA, don't remember the name), it came back negative.

Thanks again for your reply.

There is no way to rule out Crohn's completely. That is why so many people have changed diagnoses years later. The Prometheus test is the one you are talking about. It is not conclusive, but the lab touts it to be superior to all other IBD serology assays. That is why many insurance providers don't cover it. 

Yes, scar tissue can cause narrowing. This is why a stricture at the suture line cannot be assumed to be Crohn's. You do not need fistulas to have Crohn's. Biopsies may help with the diagnosis, but an absence of findings does not rule out Crohn's. Sometimes they simply treat as if it were Crohn's in order to widen treatment options.

I definitely would look into a better Part D plan. What is your maximum out of pocket? Once you reach that there should be zero copay.

Jan

Thanks Jan for your explanation, as always you are so helpful. 

I'm not in a very good place mentally right now, and this possible diagnosis is not making me feel much better. I  have so much on my plate right now, it's overflowing and being alone does not help.

I was reading something where they use a balloon to widen the area that has become narrow, but I can't remember where I saw it. Is that an option without the meds?

I can't remember what my maximum out of pocket is for my Part D, but I do know that I used many resources to get the best coverage for my meds and Humana is what they came back with. At that time I was only on Librax and Lomotil and they were not on the formulary either. I don't think that I can change plans now, and will have to wait until December to start researching once again. I don't know if things are different in CA. 

I believe that Medicare open enrollment is in December nationwide. You definitely should find out what your maximum out of pocket is, as it might help with your worries. Sure, there is no way out of these painful costs, plus the darn donut hole is still there for another year or two. I am 5 years away from Medicare and my copays changing are on my mind too. But, I plan on expecting to pay the full out of pocket maximums, and if not, it will be a happy surprise.

You can call your local social services to see what sort of prescription help may be available to you. You might even want to consider a short course of prednisone to help turn this around. It is cheap and effective, and quite safe for short term use. I try to avoid the always/never statements when it comes to my treatment. Things change and sometimes you have to adapt.

Balloon dilation of strictures is possible, but it all depends on the location and severity. Even if it is Crohn's, balloon dilation is possible. But, if inflammation persists, you need maintenance treatment. So, one step at a time. Test and diagnose as much as possible, then treat based on best evidence, not fear.

I certainly can empathize with you. Losing your husband at any time is awful, but when you need your partner for help with coping and figuring out the tough choices, it must really feel like abandonment. I know I would be lost. So, try to find any outlet to help you get out of your own mind, even if it is just for an hour a day. I am glad we can be here for you, even if we cannot hug you or let you cry on our shoulders.

Jan

You're incredible, Jan, you made me cry a bit in your last paragraph, and I guess I do feel abandoned. There is no shoulder to cry on and no hand to give me some strength. My children and friends are always there for me, but when I wake up during the night with pains Ben's not there.

I am planning to find out about prednisone, and of course, if they will give me a small dose, I will consider it. I just remember how I felt and looked when I was on 60 mg. I was so depressed, and no one told me that it was the drug that was doing it. I can only imagine how I'll feel now with double duty depression. I remember going down a one-way street the wrong way, I just didn't know which end was up - I'm sure I'm not the only that has gotten horrible reactions from prednisone.

I've been told by my insurance provider that I can ask for a "formulary exception". I think that the doctor has to fill out a form with the reasons why I must be on a particular drug and they will cover some of the expense. I'm going to find out more about it as soon as I find out the outcome of my scope on Monday, that is if the new snow storm that we are supposed to getting on Sunday night allows me to get to the hospital. If I do the prep tomorrow and then find out getting to the hospital is a no go, I can't imagine what I'll do at that point. 

My main concern, however, is the thought of  having crohn's and a jpouch - being the worry wart that I am, the fear of the unknown is always present, and I can't seem to shake it. I'm hoping that once this horrible weather breaks I can start looking for new things to do to keep me busy since I'm not working any more....so many losses at once, so debilitating. Guess I do need to get a life, whatever kind that may be. 

Thanks again as always.

Ah, exception codes! Yes, this is not unique to Medicare plans. I have Kaiser and many of my drugs are either non-formulary, or high tier meds. All my doctors know to "check the box" to approve the exception code, otherwise I would be charged nearly full price. This brings the copay down to the standard name brand copay. But they have restrictions, like only one month Rx at a time. I am OK with that, since you don't want a $3200/month medication going to waste if you have to stop taking it after getting three months worth.

I guess it is simpler with Kaiser, since all the doctors, pharmacies, and plan administration are integrated and run by one entity. But, your doctors should be familiar with exception codes. They just need to know it is needed for your Rx.

If you have had severe psychological reactions to prednisone, you probably should not take it, except for small doses for a few weeks. Some people have full blown psychosis! Definitely justification for budesonide, if it turns out you need it, as it is topical, with very little steroid circulating systemically, and what little there is, is metabolized by the liver in the first pass.

As for a possible Crohn's diagnosis, try to think of it this way. It is just a name. Whatever they call your diagnosis, you already are living with it, so nothing will change in that respect. If this is chronic, then your choice will be to accept how things are and do what you can to make the best of it; or live in denial, thinking a "cure" is imminent. I wish I knew what to say to help you see a brighter future. It is out there, and I am sure your husband would want you to find joy in your life. It just will take time. Cry until there are no more tears.

Jan

I just had a balloon dilation done in my j-pouch.  I emailed my GI at Mayo's my symptoms and got scheduled for a pouch scope in a week, which is faster than I could get one scheduled locally.  I told everyone I saw there how grateful I was to get in so quickly. The GI doing my scope said my doctor instructed them to be ready to do a balloon dilation. I think there are several places in our j-pouches they can do dilations and I think there are more than the balloon kind.  Since this is my first experience with it this is all I know.

The next day when I was in the office going over the results there were "before" and "after" pictures of the area dilated.  My pouch is still not functioning as well as it was last summer but the longer I'm on antibiotics the better I am feeling.  

I can't remember if you are taking antibiotics or not.  When looking at the scope pictures from last July and comparing to this February I could see that my entire pouch is more inflamed now than it was then.  I'd been on antibiotics for 4 weeks before this dilation so it must have had worse inflammation when I started antibiotics. I was in excruciating pain and my pain medication wasn't helping much.  

Jan has given you great advice.  I just wanted to tell you more about a possible balloon dilation, using antibiotics and if in pain to ask for a pain medication prescription. 

It's normal to miss Ben as he was there for you most of your life. You've have a lot to deal with in a short amount of time.  His illness and death as well as your health problems and so on.  All of this stress has to be affecting your j-pouch.  At least stress seems to affect mine just like it did my UC.  It's real easy for people to tell you to get rid of your stress.  Just exactly how they think you can do that drives me nuts.  You can't just tell yourself not to be stressed and it will go away!  Grief may be less some days and worse on others but it's not going to go away entirely.

One more thing, before getting for the pouch scope my local PCP's nurse gave me a shot of hydrocortisone, I think. I don't know exactly what it was, just that it was a steroid - Jan probably knows.  I could tell the inflammation was a  bit better the next few days before the scope.  If you have any Anucort (hydrocortisone) suppositories you might want to use them now to help with your pouch inflammation. Those are really cheap.  A 30 day supply costs less than 1 Canasa suppository!  I'm in complete agreement with you about taking prednisone.  I won't take it ever again either. But if it were a short course of 5 mg or something for a week then maybe. One of my employees told me I was "talking in shorthand again" when I was on a 50-60 mg dose of it.  I started at 60 and decreased it very slowly so that I was on it for 6 months straight that time.  My mind was moving so fast my words couldn't get out of my mouth quickly enough. I was not making sense and had to be told to slow down. 

Thanks so much for both of your replies. It helps so much to know that someone is listening, and answering as well, and I do appreciate it. 

Jan, thank you for your understand and support as always.

TE Marie, I do have Anucort, actually, it was you that told me about them I believe. I don't think my pouch is the problem at this point, although I'm not sure. It's my small intestine that's the culprit this time, and yes, stress definitely plays a role in my case, as it does in yours.

I'm not sure whether or not I'll have a definite prognosis tomorrow or not. I would imagine if biopsies are being taken it will take a while before they know for sure what they are planning for me. I'll try to be more open to whatever is in store for me. Just want to feel better, although, believe it or not, the past few days have not been too bad. If they hadn't seen the MRE and told me how bad it was, I would wonder!

Thanks again!!

Forgot to mention, TE Marie, I hope you feel better too....you don't seem to be going through a great time either. Thank goodness for this group, at least we can find some help and comfort when we need it the most. 

Mema,

Thanks for thinking about me during this difficult time for you.   I thought my j-pouch problem was at the top but it ended up being close to the bottom.  These creations can send confusing signals. My Internist explained why my pouch pain increased soon after I ate.  She said once our system realizes we are eating it signals the rest of the digestive tract that food is on the way. That's where my brainstorming about the Anucort came from.  

Sometimes I just throw everything I can think of and the kitchen sink at my j-pouch problems - like a soft diet, antibiotics, probiotics, anti spasmodic medication, yoga poses, heating pads, hot baths, pain medications, etc. You and most everyone does the same when feeling so bad. I almost had myself convinced I was going to go end up with surgery this time.  

You are right.  The support and understanding from our fellow j-pouch.org members helps.  We aren't all alone dealing with our new plumbing.

TE Marie,

Isn't it so sad that no one really knows what to do for jpouches that have problems? I do the same thing that you do, just hoping that one magical pill or just anything I try randomly, will help to relieve some of the miserable symptoms that I have at times. Going to Cleveland is not an option for me, and I'm not too sure that the guru knows all of the answers either. I think that people on this site know more than any of my doctors, although my surgeon is pretty savvy as to what's going on in mine. I'm just darned tired of it all and don't know how much longer I care to live this way. I wish I could wake up one morning and not wonder how much my pouch is going to rule my life for the day, and I wonder how many of us feel the same way?

On to my wonderful pouchoscopy.....thankful that yesterday is over and done with. I hate prepping!!! 

Please let us know how your scope went. I know they need to wait for the biopsy lab report but doctors usually can tell what the problem is during our scopes.

Thanks, TE.....he didn't really say but thought that it was crohn's. He wants to make sure though and is going to wait until the biopsy report comes in before he tells me definitely. I guess the area is quite narrowed and the reason that they are so concerned is that if I don't do something about it, I might be needing another surgery. I didn't go into it with him, I don't think that I was fully aware of what he was saying at the time. I did notice in my after-care instructions it said that I would be needing another pouchoscopy with MAC....do you know what that means?

MAC is monitored anesthesia care. This means there will be an anesthesia provider (anesthetist or anesthesiologist), so that there can be safe deeper anesthesia. Balloon dilation could be done during this exam.

GIs with a lot of experience can often tell the difference between Crohn's inflammation and other causes. It may not be any one finding, but the overall look. On one of my scopes, I had cobblestoning, typical of Crohn's. However, I had been using NSAIDs at the time, so it was not a diagnosis that was pushed. Still, even with avoiding them now, I still get pouchitis that tends to be chronic. But, I don't have perianal disease, granulomas, or strictures. 

Jan

I know what you mean about not being fully aware afterwards.  My GI told them to be ready to do a balloon dilation. The GI doing my scope informed about it and I signed the consent form before they put me put me under. Maybe that is what they think you will need a MAC pouchoscopy.

Thanks again....I'm hoping that they're not planning on an additional pouchoscopy all too soon - three in a twelve month period is enough for me even with more anesthesia. I'm sure that he knew whether it was crohn's the minute he was in there but, unfortunately, he still wants to wait to be absolutely sure.

He did mention that they have to get rid of the inflammation and that they were concerned that I may need surgery again if it's not taken care of. Unfortunately, my son was not in the room with me, and I don't remember much more. I guess the narrowing is pretty significant.

This is what the report say, of course, I don't understand any of it so, Jan, if you could explain, I'd appreciate it.

History of UC but recurrent obstructions and MR suggestive of crohn's now. During this procedure we found the following:

Cuff and pouch appeared unremarkable. The anastomosis had a single ulcer at the anastomosis. The neo-TI was evaluated up to 70cm. At 60cm there was a single apthae. Normal  intervening mucosa. Then around 15cm at the pouch anastomosis to 30cm there were multiple apthae and ulcers all suggestive of crohn's. The anastomosis did not appear to have any narrowing. (biopsy)

The scope was not retroflexed due to patient discomfort.

Otherwise normal sigmoidoscopy to anastomosis.

Our recommendations are as follows:

I will contact you with with the pathology results.

Future colonscopies with MAC

I think that the above post conversation was before the procedure and not afterwards. I really can't remember much of what he said afterwards, however, I think that this report will say it all. (I guess it will anyway)

He does seem to think it's Crohn's, and what he describes suggests that. There are plenty of treatment options to get you well, so it might be best (and more accurate) to think of it as a clearer road map than a sentence of doom. 

I don't think he's suggesting another scope right away, but rather suggesting that during future scopes MAC will enable him to get a better look.

Thanks, Scott, I really wasn't sure what  it actually meant, and certainly appreciate your taking the time to get back to me.

I guess I just have to resign myself to the fact that this is the way it's going to be and try to deal with it as best that I can.

Thanks again.

It looks like he obtained a lot of useful information during your pouchoscopy.  You know a lot of things that aren't wrong like no cuffitis or pouchitis. It makes sense as the suppositories didn't seem to help you much.

I like this doctor very much. I have the feeling that he knows a bit about pouches, which always makes me feel comfortable, and since he's young, I think that he has some new ideas and approaches. Hopefully he will be a good fit for me. He really takes time with me and answers any questions that I have.

My surgeon always told me that I had cuffitis, so that was a surprise to me when he said that there was no cuffitis. You're right, that's most likely the reason that the suppositories never helped much. Now I'm wondering if I even have IPS. Imagine all the money thrown down the toilet (literally)!!! 

Maybe you had a case or two of cuffitis in the past.  I see why you doubt it now.  You are right about the money down the drain!  I think the insurance prescription discounted price is something like $22 per canasa suppository! 

It sounds like you've found a doctor that is genuine and smart  I hope you are feeling better soon.

OK, here is what I see in the report- I looks like most of your inflammation (aphthous ulcers suggestive of Crohn's) are above the pouch in the neo TI (refers to the "new" terminal ileum, which would be before the pouch inlet). There was no narrowing identified, so I do not see a balloon dilation in your future. He was not able to turn the scope around to get better views (retroflex), because of your discomfort. This is probably the reason for the need for deeper anesthesia for future scopes. 

So, let's assume this is Crohn's. What does that mean for you? Since you do not have pouchitis, cuffitis, or perianal disease, there would be no reason to think your pouch is doomed. What it means it that you begin treating this as a Crohn's diagnosis, with management, not a cure, as the goal. A different diagnosis at the time of your surgery would not have saved your colon. Folks with Crohn's have colectomies all the time. Basically, you just avoided an ileostomy. Yes, your risk of pouch failure is higher with a Crohn's diagnosis, but they don't remove the pouch just because of it. On the contrary, they strive to save as much small bowel as possible.

 So, one step at a time. First do what is necessary to get into remission, then work on maintenance to reduce instance of relapse. I think you will be OK. As to the prior treatment being a waste, I am not so sure about that. Maybe that was the reason your pouch and cuff looked so good!

Jan

Thanks for the explanation, Jan, it's a little clearer to me now. What I don't understand is if you say there was no narrowing, what did they actually see in the MRE that made the doctors believe that there was narrowing? I guess that will be questions that I will make sure to ask the doctor when I get his final report.

I do know that he did say that it was UC to begin with since he had the full report of the findings when I had my surgery to begin with. Crohn's was not present at that time. On to the next chapter I guess.

The MRE may have revealed narrowing beyond where he was able to pass the scope. The scope can only examine a fraction of the small bowel.

Thanks, Scott, I realized that after I posted my last reply....DUH....sometimes I just don't think! 

It isn't your thinking that is wrong as much as these are new words that we aren't use to yet.  I'm glad Jan explained it. I had no idea what the heck all of the results meant. 

Are you going to see your doctor soon to discuss treatment?  Maybe you can plan it so your son can go with you. I've just started taking someone with me to these appointments because I think I might have selective memory like my dad does.  We can come out of one of his major medical appointments and he doesn't retain all the details. 

I don't think that a meeting with my doctor is scheduled, although he hadn't mentioned one other then having one in six weeks. I doubt if he will wait that long to discuss my treatment. When I do see him, I won't be going alone, because I, too, have selective hearing and memory. I will most likely be going with my DIL since she is a nurse and will hopefully understand more than either one of my sons would. I'm not anxious to hear what is in store for me, I'm just not ready yet. I don't feel that bad at all as long as I'm careful about what I eat. Of course, I stayed in all day yesterday and binged. I was up all night in agony. If I eat more than two meals a day, forget it. I don't know if that's because of the crohn's or if my pouch is very small. Got a big belly ache and sore tuss from the constant pooing now....lucky I have lots of Calmoseptine in the house. A hot tub is on schedule very soon!

Another suggestion when visiting your doctor, even if you have someone with you. Ask your doctor to write down any pertinent information. Typed format is best (doctors have terrible writing!). They can give you a copy of the visit notes too. You can also ask your family member to take notes for you. It is not rude (in case you were thinking this might be improper).

This is what you need/want:

Diagnosis

Prognosis

Treatment plan, options (in case treatment is not financially feasible), side effects

Follow up plan (future scopes, imaging, labs, etc.)

Jan

I'm glad your family lives close as it's easier to receive their support. Plus you have a medical professional too!  Sometimes we need to let things percolate for a while before taking action. I hope you are getting over your BB and pain!

Thanks so much for your ideas and suggestions....Jan, I definitely will write the questions down so that I can remember the things that I will need ask the doctor. I don't know what I would do without your always helpful ideas....you're a real godsend for sure!

I know that I had read in one of your posts "the burn" that one gets from the injection. A friend of mine sent me a site to read and it scared the hell out of me. However, it did say if the injection is warmed up it's not quite as painful. Also that if one is to use the syringe and hold the skin tight, it also works. Was that what you found as well? If I was frightened before, I'm even more so now. I know I'm putting the cart before the horse, but do want to be prepared for what I am heading for. One other thing, the article said that the first dose is 4 injections....OY!!! 

TE Marie, do you ever use the Anucort suppositories if you have irritation that hurts like heck? Just curious.

I always had the syringe as opposed to the pen (where you push a button and it inserts the needle and automatically injects the medicine). Once you get past that first shot (it is mostly a mental thing, as the needle is essentially painless). It is a very fine, short, sharp needle. In retrospect, it is no worse than plucking my eyebrows, at least putting the needle in.

No matter what I did with Humira (allow the syringe to warm to room temp, ice the injection site, slap the skin to numb it more, make sure the alcohol was completely dry), it pretty almost always would sting during injection. This is why I liked the syringe. I could stop injecting if it was stinging too much and wait a few seconds before proceeding. Also, injecting into the abdomen was much more comfortable than the thigh. After a few thigh injections, I never used the thigh again. You can just tell them to use your abdomen and skip the thigh. The sting is not horrible or unbearable, just annoying. It is hard to talk yourself into inflicting pain on yourself sometimes. I never held the skin tight, but pinched it like you are supposed to. This is how you know for sure it is going under the skin, and not into the muscle. Perhaps I am not understanding what you mean by holding tight (like pinching so hard you numb the area?). Maybe that is why people don't keep up exercise programs! I think that Rachel uses the Humira Pen and does not have issues with it, so maybe it does not sting for everyone.

Your first shots will be by your provider or her nurse. They will probably do one, then walk you through the others. The Humira site also has a video. I did not have the 4 shot loading dose, but I was treating for arthritis, not Crohn's. I did eventually have to go on a weekly schedule, because it did not last two weeks. Enbrel and Simponi did not sting at all for me, but Enbrel never worked very well. I am on Cimzia now. It stings just a tiny bit, but it is sort of thick and syrupy, so I am not surprised. Cimzia does not even come in a pen form.

I think the worst thing is that it can take up to 3 months before there is a full effect and you know whether to stick with it or move on.

Jan

Very informative, thanks. 

I admire you so much for taking your health needs with such a grain of salt...you're incredible! 

I use anucort too sometimes but canasa is the one that works best.  Last months results were I had inflammation in my entire j-pouch. I saw a pic of my cuff and it was the best I'd ever seen of it. I am afraid to stop taking the canasa and am more diligent about using it daily.  I am also using anucort when practicable to find 2 different times during the day as that was my GI's instructions a few years ago.

I insert both the same way, with a medical gloved finger and personal lubricant or vaseline on the head of the suppository.  Since I know there is inflammation I am trying to use both at  separate times daily.  The balloon dilation was near the bottom of my pouch so I think using the anucort would help it. The NP told me to use antibiotics all the time but I didn't think of asking about the suppositories.  I'm going to email her.  Thanks for making me think about this.  It isn't one of my favorite things to do.  The cost of anucort is cheap! I don't know if this helps or not. Not pleasant to do but better than getting worse - my throw everything at it approach reasoning.....

Would you benefit from using it?  I don't remember if your pouch is inflamed or not.  It was "unremarkable" in your doctor's comments.  Why can't they just say "normal" instead unremarkable Jan? I'm sure there is a reason for it 

Thanks TE.....I find it quite painful to use the canasa when I have a lot of irritation, but the anucort is much easier to insert. I also use a lubricant as well to get it in. I could never do it without using it. I'm amazed that I didn't have cuffitis. 

I agree, what is unremarkable? Another question, if my pouch is "unremarkable" which I take it to mean normal, why do I have leakage almost every night? 

Unremarkable is just lingo. Normal is a range of things. Unremarkable means that nothing stood out worth noting. Some doctors will dictate a bunch of blah-blah-blah, describing a perfectly normal appearing pouch, and it scares the daylights out of some people and bores the other doctors that need to read it (like "normal" pathology reports). Remember, they are writing for themselves and other doctors, not you. They want to write things that will be helpful to them when they scope you next. They see hundreds of patients.

Not much to admire in my style of coping. I have been dealing with UC and a host of other things since I was 15. Accepting that I had chronic illnesses  was just part of moving forward. My surgeon did comment that he did not have many patients who smile and laugh during uncomfortable exams. Meh, nothing compared to labor with a breech presentation! I am always excited to find out what the "bleep" is going on, so some discomfort is just part of it.

I cannot go back in time, choose different ancestors to have a different genetic make-up, so I may as well make the best of what I have. Besides, nobody cares about your pain like you do. I refuse to spend too much time on a pity party because some dimwit who takes her health for granted gets to skip through life without a care. Not fair, but so what?  I have a great family, great experiences, and great friends here. I think my trials and tribulations have made me a better person, because when I have a really good day, I REALLY appreciate it and accomplish a lot!

Jan