Hi, Newly Diagnosed and Unusual Complications/So confused

Hi everyone, my name is Suzanne, I'm 45 years old and was definitely diagnosed with Crohn's on Tuesday. It was found accidentally (will get to that in a moment) and I have been going through what feels like non-stop testing since, though in reality I've only had a CT scan, a colonoscopy/endoscopy and a small bowel series. My GI wants me to do some very expensive blood test but I don't think it's really worth it. And, I don't like or trust him so am going to find a doctor for a 2nd opinion. Anyway, I was diagnosed with leukemia 15 years ago. I've been on daily oral chemo for 13 years. From day 1 of the chemo, I've had stomach problems, which is very normal for the medications. My oncologists and I just assumed that it was all related to that. In January, my onc sent me for a chest and abdomen ct scan as I'd been having some shortness of breath and my medication is known to cause pulmonary problems. My chest was fine but in doing the abdomen (they were checking my spleen for enlargement), they discovered that my ileum wasn't looking right and the radiologist suspected Crohn's. Went for the colonoscopy (yuck) and the small bowel and was diagnosed on Tuesday. Apparently, I have a stricture and my ileum is inflamed almost closed. My GI wants to start me on Remicade but with my history of cancer and a wonky immune system, I'm not sure that's the best choice. Obviously, I also want to avoid surgery, which according to my doctor is my only other option.

I'm very confused with what I should do, my GI reminds me of a very aggressive drug pusher and I'm more than a little overwhelmed with all of this. Heck, I barely know what Crohn's is. I don't know the symptoms, what a flareup is, what I should or shouldn't be eating, what treatment options are out there, nothing. I am just now beginning my research and am so glad I found this place.

I'm sorry this is so long, I do tend to ramble on. Thank you for listening

Suzanne

Hello Suzanne,
Sorry to hear of your suffering and hope it can soon be resolved to your satisfaction.
It is most important to have a GI you can have a good rapport with so it is a good move on your part to seek another GI.
You are certainly faced with a dilemma and some treatment choices with which you are unhappy, and with good cause.
However, if the Crohn's is not treated it continues to progress and I am sure you don't want that to happen.
Have you consulted your oncology hematologist regarding the options for treatment of
your Crohn's.
It might be a good place to start.
Sometimes even with the drug treatments it can be necessary to go the surgical route.
Equally it can help some people greatly to have surgery.
Some respond remarkably well to remicade and humira.
There is no simple answer. Everyone's Crohn's is different.
I am sure once you have a good read about it all, and a good talk with doctors you feel you can trust you will be able to make a balanced decision.
You will find lots of information on the forum, and I have no doubt there will be other members along to help you, that may have had similar experiences.
Feel better soon
Hugs and best wishes
Trysha

Trysha said:

Hello Suzanne,
Sorry to hear of your suffering and hope it can soon be resolved to your satisfaction.
It is most important to have a GI you can have a good rapport with so it is a good move on your part to seek another GI.
You are certainly faced with a dilemma and some treatment choices with which you are unhappy, and with good cause.
However, if the Crohn's is not treated it continues to progress and I am sure you don't want that to happen.
Have you consulted your oncology hematologist regarding the options for treatment of
your Crohn's.
It might be a good place to start.
Sometimes even with the drug treatments it can be necessary to go the surgical route.
Equally it can help some people greatly to have surgery.
Some respond remarkably well to remicade and humira.
There is no simple answer. Everyone's Crohn's is different.
I am sure once you have a good read about it all, and a good talk with doctors you feel you can trust you will be able to make a balanced decision.
You will find lots of information on the forum, and I have no doubt there will be other members along to help you, that may have had similar experiences.
Feel better soon
Hugs and best wishes
Trysha

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Trysha, thank you so much for responding so quickly. It helps so much to talk to people who've been there, done that. I learned that when I was first diagnosed with leukemia. Message boards, quite literally, saved my life. So, I sought out one for the Crohn's. I feel so overwhelmed, depressed and ignorant. I don't even know what questions to ask, much less anything else. Well, one step at a time.

:Welcome: to the forum Suzanne. I agree that it is very important to have a good relationship with your doc so if you are not happy it is best to seek a new one.

Definetly have a good nosy around, there is a lot of info and support here that I hope will be a benefit to you and if you are not sure on something do not hesitate to post a question, we will always try our best to give you an answer.

xxx

Welcome to the forum Suzanne! I know it is hard to have a new diagnosis, but I hope you come to see it as a relief. At least they have the option of treating you now!

I will say, without going into too much detail, I have had both surgery and used Remicade for many years and I have had wonderful results with both. Remicade is a wonderful maintenance drug, but it was surgery that finally put me into my first remission in 14 or so years with the disease.

It is a very personal choice, but I say try the Remicade first and see if that helps. If not, be open to other options.

You have found a great place for answers and support here.

Jer's Girl said:

Welcome to the forum Suzanne! I know it is hard to have a new diagnosis, but I hope you come to see it as a relief. At least they have the option of treating you now!

I will say, without going into too much detail, I have had both surgery and used Remicade for many years and I have had wonderful results with both. Remicade is a wonderful maintenance drug, but it was surgery that finally put me into my first remission in 14 or so years with the disease.

It is a very personal choice, but I say try the Remicade first and see if that helps. If not, be open to other options.

You have found a great place for answers and support here.

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Thank you Nicole. I'm, as my first GI put it, stuck between making the best of 2 very bad choices for me. Remicade is an immune suppressant and when you have leukemia, the last thing you want to do is suppress your immune system. It could trigger a relapse, which will kill me, most likely. Surgery, too, could trigger an unwelcome immune response and in reality and selfishly, I have an incredibly active life and I have no wish to be off my feet, so to speak, for that length of time. It would drive me absolutely out of my mind bonkers :ycool: I don't know, I just feel so incredibly stressed by this. But, I'm trying to take one step at a time and just try to figure it out. I have an appointment for a 2nd opinion on the 21st with a doctor who specializes in Crohn's and I'm hoping she will be able to better help me wade through my options and give me some better answers/advice than "because I said so."

Hi Suzanne and welcome I'm so glad you found your way here! A couple things:

1. What is the name of the drug that you took for 13 years? Why kind of Leukemia?

2. You do indeed have an interesting case in that you can't do immune suppressants or surgery. They can obviously put you on some anti-inflammatories but if your ileum was almost closed off, more weapons will likely be needed. As such, here are a few things for you to look into:

A. Low Dose Naltrexone
B. Enteral Nutrition
C. [wiki]Specific Carbohydrate Diet[/wiki]
D. Medical Marijuana

With that said, there are also drugs that work against Leukemia AND Crohn's Disease such as methotrexate.

We're here for you anytime If there's anything we can do for you, please let us know.

David said:

Hi Suzanne and welcome I'm so glad you found your way here! A couple things:

1. What is the name of the drug that you took for 13 years? Why kind of Leukemia?

2. You do indeed have an interesting case in that you can't do immune suppressants or surgery. They can obviously put you on some anti-inflammatories but if your ileum was almost closed off, more weapons will likely be needed. As such, here are a few things for you to look into:

A. Low Dose Naltrexone
B. Enteral Nutrition
C. [wiki]Specific Carbohydrate Diet[/wiki]
D. Medical Marijuana

With that said, there are also drugs that work against Leukemia AND Crohn's Disease such as methotrexate.

We're here for you anytime If there's anything we can do for you, please let us know.

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Hi David, thank you for responding and for the suggestions. I have CML, chronic mylogeneous leukemia, it is considered a rare and orphan form of leukemia. When I was first diagnosed, they told me I would most likely be dead in 3-5 years but I was, thankfully, diagnosed at a time when there was a tremendous amount of research going on into new treatments. I was on a clinical trial for a drug called Gleevec, which was one of the first smart drugs in that it targets only (mostly) the specific leukemia cells and kills them off. When I started become resistant to that, I went on a drug called Sprycel which I've been on for the past almost 6 years. Both drugs have turned the leukemia, for most of us who have it, into a chronic condition as opposed to a deadly disease. But, we do have to be careful as no one knows, still, what triggers the white cells to start multiplying with no stopping. Hence, anything that messes with your immune system has a great potential to be dangerous. Other forms of chemotherapy have little to no effect on the disease, at least not long-term.

So, I am definitely making some serious changes to my diet in order to, hopefully, better manage the Crohn's. It's hard to know, though, what is a side effect of the chemo (taken orally daily, btw) and what is the Crohn's. All of the stomach problems, aches, etc are also well-know side effects of the Sprycel and Gleevec, which is why I went undiagnosed for so long. The Crohn's was found accidentally. And despite all the stomach problems and everything else, I've been incredibly lucky that it hasn't affected my day-to-day life in any way. The only thing that it really affects is that I don't go anywhere where there's not a bathroom immediately available. :redface:

Right now, I'm arming myself to the teeth with as much knowledge and information I can in order to continue having it not affect my life any more than it already has. At first, I was petrified, then I had a lot of self-pity but now, I'm resigned and will deal with this the best way I know how, which is to become more of an expert than the doctors and fight this with everything I have. That's what I did with the leukemia and I'm still alive 10 years after they said I would be dead. I did it then and I can do it now.

Medical marijuana? Wouldn't that be fun, being able to legally get high :lol2::hallo3::ylol: I live in Virginia, though, and we don't have it approved here, I don't think. And I'm so not willing to go to jail ever for anything :hippy:

I think you can still get it in Calif for Crohns and Cancer.

Listen to your body and fight for the answers until you are satisfied and understand what you are hearing!

I am so sorry you are going through this!

tots said:

I think you can still get it in Calif for Crohns and Cancer.

Listen to your body and fight for the answers until you are satisfied and understand what you are hearing!

I am so sorry you are going through this!

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Thank you Tots! I drive people nuts with the questions and demands but you gotta do what ya gotta do.