Crohns plus COPD and new drug therapies

This is my first post and I am hoping that I can learn something from all of you.

It's a long complicated story since I have several chronic conditions.

I've had Crohns for 33 years and had my second surgery in Nov 2012. I also ended up with a temporary ileostomy that was supposed to be reversed after 3 months. Before the surgery could be scheduled in March I developed pneumonia and it was rescheduled for the end of May 2013. Unfortunately, once again got pneumonia two days before surgery date - cancelled once again.

I also have COPD with less than 50% lung function and I was diagnosed with Papillary Thyroid Cancer in 2012 and had a total thyroidectomy in Jan 2013. I still need RAI treatment for the cancer but it can't happen until at least two months after the reversal surgery. I have been susceptible to pneumonia for the last 15 years, been hospitalized several times and getting pneumonia as often as three times in one year. Twice so far this year, hospitalized once.

Three weeks ago I was hospitalized with hyponatremia (low sodium) and also experiencing a great deal of pain. Tylenol just didn't work and went to the good stuff - morphine. Because of my history they did an abdominal CT scan and found that my Crohns has returned less than 9 months after surgery and before my ileostomy has been reversed. Next step, an ileoscopy (thru the stoma) which confirmed that my Crohns has returned but worse than before. Previous surgeries only removed between 10 to 12 cms, but now it covers 20 cm from the terminal ileum through to the temporary loop ileostomy.

I am currently on prednisone which was my miracle drug when I was first diagnosed. I went off prednisone in 1986 and have been off it except for one and two week doses for pneumonia since Sept 2012.

One GI wants me to go on one of the new drugs but from what I've read they are not that great for COPD patients who are susceptible to pneumonia. Another GI once suggested going on Entocort instead of prednisone which I am seriously considering since it was confirmed this year that I also have osteoporosis. I'm waiting for a follow up appointment and further testing this October for the osteoporosis.

Can't see my endocrinologist until November, my colorectal surgeon until December and I'm still shopping around for a GI since mine of 31 years retired 2 years ago.

Okay, I think I've outlined all the pertinent facts to give you some idea of what I am trying to deal with.

What I am looking for are people who have been on the new drug therapies and who possibly also have COPD. How much would I have to concern myself about coming down with pneumonia? Is there anything else?

All replies will be appreciated.

P.s. I also suffer with chemical and environmental sensitivities -this is why I get pneumonia.

I'm trying to stay positive and I did have some good news this year - no breast cancer.

Hi Rose. Yup, yup, as Ides said, I have COPD and Crohn's and osteoporosis too so we share some common ailments. And some of the timing too. You can see a brief rundown of my Crohn's history in my sig below.

You sure are one tough cookie, Rose! My hat's off to you. Sincerely.

I'm a 50 plus years smoker so we know where my COPD originated. I've been fortunate to be able to avoid prednisone for my Crohn's and my COPD altho I strongly suspect that those 6 weeks I spent on IVs prior to my resection in 1978 were full of pred.

I was fortunate to go into remission after my resection and to thus be able to avoid doctors and the medical profession for 20 years, seeing our family doctor once a year - maybe - during that time.

A whiplash in early 1994 ended those years of good health and bliss. *sigh*

Actually, if it weren't for the COPD I would be the healthiest 71 year old I know. No aches, pains, etc. etc. Just crappy lungs. Really crappy lungs.

In one of my breaks in remission "we" were considering Remicade. I was even scheduled for the first infusion - w/great trepidation on my part, mostly 'cause of the prednisone pre-dosing. The day before my first scheduled Remicade infusion I read about the Remicade clinical trial for COPD - and saw that it had been terminated early. SAY WHAT? WHY?

I called the maker of Remicade and asked but they just referred me to my local gastro. I called the facility conducting the clinical trial and got the same song and dance. I called the facility where my infusion was scheduled and cancelled. I called my gastro but she didn't at that point in time have any idea why the clinical trial was cancelled.

I don't remember the exact wording or reason for the early termination of the Remicade for COPD clinical trial but the result was that Remicade was then contraindicated for those w/COPD.

I am on 4L 02 16 hrs a day, w/2L at night w/a bi-level PAP at IPAP 14 and EPAP OF 10. I am fortunate to have never needed to be hospitalized for pneumonia (knock, Knock, KNOCK), nor have I, to my knowledge, ever had pneumonia. I've had very few episodes of antibiotics for the COPD. My "get up and go" has been severely restricted since the first part of this year. I don't do well on pulse conservers at all, I need continuous flow. I have developed A fib and am on Toprol and Rythmol which are controlling it very well. Especially when you consider a walk from my car in the handicap zone to my doctor's waiting room on pulse will drop my Sp02 to 84% but keep my HR at 84 to 88.

I am taking nothing for my osteoporosis despite I am at high risk for fracture. I tend to constipation rather than diarrhea and I just can NOT "do" calcium, even low doses. I did do 2 years of Forteo w/dramatic improvement. I gained back to where I had been previously. I had some improvement again the 3rd year but not enough to warrant the expense of Forteo. I've had bisphosphonate infusions but still have bone loss again.

If I were in your position I would most likely refuse the biologics w/o researching them fully. I can't speak for the newer ones, just Remicade. But your biggest risk seems to be your lungs and pneumonia.

On the other hand, there is YOUR mindset on quality vs quantity of life and what you are and aren't willing to sacrifice and are willing to risk to make that final decision.

You might want to make a list of your ailments, put them in perspective, which are the most critical to you at the top of the list and then concentrate on just the top one of the list - or as may be the case for you - the top 2, Crohn's and COPD. Concentrate on getting them under control by whatever means you and your doctors are willing to try.

Personally, I favor quality and have made it abundantly clear to family and doctors, altho I am in no hurry to leave this life, when it isn't worth it any more "I" WILL find a way out. I just wish we lived in or closer to Orgeon, Washington or Vermont. Thanks to Dr Kvorkian Michigan will most likely be the absolutely last state in the union to approve Death with Dignity legislation.

MEANWHILE, I still have LOTS to live for. I have my genealogy to work on, my crewel embroidery, my petit point, my kindle, my grandkids and a great grandson as well as a wonderfully supportive husband and son and daughter.

Good luck and God bless. (((hugs)))

If you go Entocort, depending on your insurance, it can be very expensive. Unlike pentassa which is different, the entocort sold in Canada is exactly the same as in the US. When I was taking it, I bought it out of a place in Winnipeg. Jan's Drugs, or something like that. It was about 20% of what I would have had to pay in the US.
Although I share little in common with what you are dealing with except Crohn's I hated prednosone due to sever side effects, including peripheral neuropathy, however, I did 18 months on Entocort with virtually no side effects and it was effective for me.

Dave