Setback - Frustration & Patience

[Ginny]

Oh Joe, I'll cry with you or rant! I'm very much like Harma; I have been on Entocort about 6 months and really feel that it will take a long time to get where I need to go even with our strict diet and I made it clear to my GI that I needed to function so he is very supportive in me taking Entocort as a maintenance drug and understands the importance of the diet.

Don't you just hate the setbacks when you think you are doing just great.......been there done that. That's when I realized it was going to take time and PATIENCE. You'll be in my prayers!

Here's to you feeling like yourself in a day or two. Ginny

[Joefnh]

I admire your ability to stay with your limited diet - it should pay off in the long run.

Thanks for you note Gloria, I will have to give some of the credit to Gabes regarding staying on the strict diet, she has been quite encouraging and supplied me with a fair but strictly limited diet that works well. Fortunately I like all of the items on it.

You have a great stoical attitude

Ant thanks for the note, I will have to figure out how to be stoic while in the bathroom though LOL. Yesterdays note was after a long 3 days... I took today off and am getting some rest.

I have experienced, even after almost 7 months diet, I still need my entocort.

Harma it does seem that most of us need longer courses of the Entocort, Ant supplied me with a copy of his taper schedule which I did bring to my GI doc, he does not 'like' keeping people on steroids that long. Oh well at least he understands the dietary aspect including gluten

Hang in there, Joe. You did SO well so quickly. Try not to be discouraged. This disease is humbling, if nothing else. As soon as we think we're making progress, BOOM, we're kicked in the butt.

Polly no truer words can be said... BOOM is about right. Thanks for your kind note. I'm glad your colonoscopy went well today, I hope the anesthesia is worn off by now. I had the propophol before as well and it was quite good with no side effects afterwards

Don't you just hate the setbacks when you think you are doing just great.......been there done that. That's when I realized it was going to take time and PATIENCE. You'll be in my prayers!

Thanks Ginny I appreciate the prayers and yeah patience is the tough part. I keep lying to myself that this is only temporary and soon will be over...


To the rest of the group thanks so much for all your encouragement. This was a tough week for personal reasons as well so this was just icing on the proverbial cake. But on the bright side this is a long weekend. Happy 4th of July everyone



Best wishes all

--Joe

[Gabes-Apg]

Joe
sorry to hear you had the set back. Can i ask why you choose now to reduce the endocort dosage?

with some upcoming travel for your work i thought you would wait until after that trip.

I had a few set backs when i got ambitious. and then i realised the food and cooking style as i have it now might be the way it is for life.

with the stress that travel puts on your body i would suggest waiting until after the trip before changing your routine.

hope nurse nestle is looking after you and things have settled down a bit today.

take care
gabes

[Joefnh]

Hey Gabes welcome back. I hope your travel on the return trip was tolerated as well as you did heading out.

Gabes is was not my choice to taper off, but my GI doctors. He did not want me on the med longer than necessary as he is cautious about steroid use. I was due for a prescription refill and he asked that I try to taper off first and see how it would be tolerated before refilling the original prescription, it obviously did not go well. I was surprised at how quickly things went bad.

I did talk with him about travel and thats why he refilled it for 2 months as opposed to his original 1 month, that way I would have coverage through August. I was also supplied with more of the Questran (aka Draino). I hate drinking it but it does help when needed.

I forgot to mention Nestle in this post as she did change modes again form the playful pup to nurse again. Its funny how she senses that.

Thanks for the note

--Joe

[JLH]

Aw, Joe, I hope and pray things turn around very soon.

[Gloria]

Joe

You've done great up to this point and I'm sure you'll be able to get back on track. You might need to find another GI who isn't as reluctant to use a steroid for long term, or perhaps your GI will eventually recognize that Entocort doesn't "cure" MC.

Our GIs are learning right along with us. Mine originally told me that I should wean off Entocort after three months. During my last visit, he said I could stay on it indefinitely. Quite a change in attitude! He's been treating many more MC patients since my first visit three years ago and has obviously learned that there isn't always a quick fix to this disease.

I hope your GI can figure out how to handle your Crohn's disease along with MC. You have a more complex situation.

Like Joan, I hope things begin to improve for you soon.

Gloria

[Joefnh]

Thank Gloria it does seem like there is fundamental misunderstanding about the treatments for MC. Even after his speech regarding how dangerous this medication can be, he did not blink at the request for 2 more months of the Entocort, so that I will not have any issues during travel to Australia in August.

I am wondering if the steroid issue is more of a knee jerk reaction because of the risks of a systemic steroid such as prednisone.

--Joe

[Polly]

Good Morning, Joe!

I hope the weekend finds you feeling better. It was not a fun week, that's for sure. I notice that you mentioned you were dealing with personal problems, too. That's always a bummer with gut disease. Although I don't believe stress causes MC or Crohn's, it always makes things worse, we have found. So many here have noticed flareups during times of increased stress. Last summer, 3 family members (including my mom) died within a few weeks, and my MC flared up for the first time in years. Have you found some stress-busting activities that you can do on a regular basis.....exercise, but also meditation, massage, hobbies, etc.? Of course, I am sure that Nurse Nestle is the BEST stress-reliever you could have. Glad to hear she is doing her job well!

I wasn't around much in April when you were diagnosed, so forgive me if I am making you repeat yourself. I am wondering where your Crohn's was located? I know that Entocort has been found to be effective in mild to moderate Crohn's of the terminal ileum and right colon.
So, I think it is good to give this drug a fair (AND LONG) trial. I think Gloria has a point - although I know your doc is knowledgeable about diet, you will need one who is willing to keep you on Entocort......maybe indefinitely for now, like she is. It makes me crazy when docs want to jump from a medium gun med like Entocort to the big gun immunosuppressives like Imuran without trying more and longer on the Entocort. Do you feel like you are tolerating the Entocort well?

I know things look bleak right now, but they WILL get better. Progress is slow and steady, with occasional steps backward. Sometimes the progress is so slow that you don't realize it until you look back 6 mos. or a year. I cannot believe that I stayed on the elimination diet for 9 full months without seeing a formed B.M. when I was first diagnosed. (Entocort was not yet available and neither was all of the experience on this board to know that diet really works, plus I was the first to discover that other intolerances and not just gluten were playing a role)). I am not the most patient person, either - I like to have things fall into place without a lot of uncertainty. I think the only reason I hung in there was because of the wonderful support and encouragement from the folks here.

Love and

Polly

[tex]

I am wondering where your Crohn's was located?

Joe describes that in his third post in this thread, (back on the first page), and we discussed the Entocort issue a bit, afterward, (while you were sidetracked, prepping for your scope exam). As you can see, the jejunum involvement makes it kind of a tricky case, that's why I mentioned the possibility of trying a double dose.

Love,
Tex

[Joefnh]

Polly thanks for such a kind note today it certainly helped. I am feeling better today as this is my 2nd day back on the Entocort. I have been taking the Questran and tramadol as well. As Tex pointed out I have Crohns involvement mainly in the ilium and as the medical record states "modest involvement in the proximal and distal regions of the jejunum" so both the lower and mid portion of the small intestine are affected. The CC was seen in biopsies of the large intestine and the samples they were able to take in the ilium.

Yeah stress is the great multiplier for any condition, but this stress is not too bad, just a time of year memories thing.

I am certainly resisting any move towards the 'big guns' as there effects and modes of action scare me. That's one of the driving reasons that I am able to stick to the Gabes diet - I really want to see if diet and some meds can bring this under control. Tex knowing my doctor and his 'fear' of steroids I doubt I could convince him to extend the dose past 9mg.


Thanks again guys you really have helped out in many ways

Take care

--Joe

[tex]

The CC was seen in biopsies of the large intestine and the samples they were able to take in the ilium.

Whoa! This could be groundbreaking evidence. Did the pathologist or your GI doc actually refer to the markers in the ileum as being connected with CC? Some of us have long suspected that MC can affect any portion of the GI tract, but the "rules of the game" forbid that interpretation, because of the name originally chosen to describe this disease.

I agree that there is probably no point in even mentioning anything about a double dose to him, considering his views. It might even upset him.

modest involvement in the proximal and distal regions of the jejunum

Hmmmmmm. The proximal jejunum is the upper end, (near where it joins the duodenum). I trust they checked the duedenum, and found no evidence there. Anyway, the point is, the proximal jejumum may be well out of range of Entocort.

Chances are, though, that your symptoms are mostly coming from your ileum, so there is certainly a good chance that Entocort may be able to handle the inflammation there, quite satisfactorily, and since the involvement that is out of range is relatively minor, (in the proximal jejunum), that inflammation may be controlled by the small percentage of budesonide that is absorbed into the bloodstream, which would take care of the final piece of the puzzle.

Tex

[Joefnh]

Tex they were able to take samples about 10" into the lower end of the small intestine, I guess they normally cannot access that area. The biopsies in that area were positive for CC and the same area also had crohns involvement. Again I guess that's rare as they had not seen both involved in the same person and certainly not in the same region. They had the slides sent out for a second opinion to Cedar Sinai pathology for verification.

--Joe

[tex]

Veeeeeerrrrrrrrrrrry interesting.

Tex

[Joefnh]

Tex I usually get a queasy feeling whenever a doctor says that...your close enough. LOL

--Joe

[Rosie]

Joe, sorry to hear about all your complications! But you've gotten the best advice available, so all I can do is sympathize....although we all know that the support of others who share your health issues is not to be minimized. Your attitude will carry you through (and Nurse Nestle).

Polly wrote

Last summer, 3 family members (including my mom) died within a few weeks, and my MC flared up for the first time in years.

That comment really brought home to me how we are never really "cured". Somewhere in the back of my mind was the hope that after I've been on my healing diet for a year or two and stay on it for life, I would essentially be cured. But it's not just food, unfortunately.........the old "mind-body" connection is still there........ And I think that's why only a relatively small proportion of the visitors to this forum stick around. As many have mentioned, the acceptance of a life-long radical change is very hard to accept, and depressing to those recently diagnosed.

Rosie