New here, struggling with choices

[AmberLee]

Hi there, my name is Amber, and I’m a 30 year old female diagnosed with Crohns about five years ago after a major flare and colonoscopy.

Since being diagnosed, I’ve had three more major flares. The first one was treated with Prednisone and Asacol, and cleared up in about three months. The second flare, although the doctor prescribed the Prednisone and Asacol again, I decided not to take the meds, as it didn’t seem worth it to me, seeing that they took three months to work the previous time. It cleared up on its own after a couple of months.

Now I am currently sick for the third time since I’ve been diagnosed. This is the first time I’ve had a flare in over a year. I finally went to see the doctor today, as it has been three weeks now with severe pain, ~15 BMs/ day, and no sleep at night. The doctor wants to put me on 30Mg Prednisone for at least 6 weeks. I am extremely concerned about this. As of next Tuesday, I am being promoted to a high stress, high responsibility management-level position at work. I am also getting married in a few months, the first week of July. I’m really struggling with what to do. I do not want to start taking the meds, and then have to worry about withdraw if I decide to stop them. Right now I feel like I have somewhat control of my life, even with the pain and frequent bathroom trips. I’ve learned to work around it with limiting my diet, and restricting what times and how much I eat (i.e. not eating anything several hours before bed, eating small snacks throughout the day at work). I’m afraid what the Prednisone will do to my body and mind if I start taking it. I was wondering if anyone else has ever contemplated this dilemma, and how it turned out? My main worry with not taking the meds, is that my symptoms are pretty bad now, and I don’t know how I would be able to tell if I’m truly in a dangerous situation where I should get myself to the doctor. What risks am I taking by trying to control this on my own and let my body heal myself?

Apologies if what I am asking is naïve, or has already been answered on the boards; I’m still very confused about this condition, and my doctors have been very vague with answers. This forum is a great resource, and I will definitely be spending a lot of time on here

 

[Terriernut]

AmberLee, you've got alot of stress on your plate right now, and that isnt going to help your Crohns one little bit.

You can try the SCD diet. But, I have to say, letting inflammation go out of control is going to cause scar tissue, and that you dont want. How about asking the Dr for Entocourt instead of pred to get the inflammation under control. And then perhaps some other maintenance drugs?

 

[AmberLee]

Thanks for the response, Terriernut. I'm not familiar with all the meds, because I've only had four major flares, and the only thing I've ever been given is the Asacol and Pred. I will talk to my dr about alternatives. Maybe I am worrying unnecessarily, but six weeks of Pred is a daunting prospect for me. So I guess you answered my "what's the worst that can happen" question. I assume you are saying each time this happens and the longer it goes untreated, the scar tissue damage can make further complications worse? Again, I apologize but I am at the point where I am burying my head in the sand and probably not as informed about these things as I should be. I need to change my attitude, but right now I feel like I'm teetering on the edge between complete denial and that very dark sad place

 

[David]

Hi amber and welcome, I'm really glad you joined

Due to the nature of your predicament, I've also copied your thread to our Prednisone forum. The thread copy is located here. I did this so you can get even more insight since not everyone will see this thread.

I'm getting married soon, so I totally understand your concern about taking the prednisone. A few questions:

1. Do you know where your Crohn's is located? Large intestine? Ileum? Or?
2. Other than the frequent bowel movements and pain, what other symptoms do you have, if any? Where is the pain specifically?
3. Have you been tested for any vitamin or mineral deficiencies such as B12 or D?

All my best to you!

 

[Feather]

Hi Amber,

I was treated with Prednisone and Asacol when I was first diagnosed, too. I've had Entocort for flares, too, which definitely didn't give me as many side effects as Prednisone but wasn't as effective in controlling my disease.

It's easier to control the disease with diet if you start healthy rather than trying to treat a flare with it--I know a lot of people who go the natural route do some sort of polymeric plan to get a baseline of health first. Have you considered enteral nutrition? If you don't want to take medicine, it might help to spend a couple weeks drinking Ensure or a similar supplement to give your intestines a chance to rest before starting a new diet. Definitely ask your doctor if he has any alternatives to the Prednisone treatment.

 

[Angrybird]

Hi Amber, I agree with Feather and have had this confirmed by my dietician - if you are on a flare changing what you eat will not help - food is food at the end of the day whether its a plate of rice or a burger. I am currently on prednisone due to experiencing one of the worst flares I have had in years, the only alternative was to stop ALL food and drink nutirional milkshakes which I was not willing to do over xmas and this will only help symptom wise and will not get rid of the inflammation - your body is not going to do this on it's own either. There have been at least 4 other occasions this year that I refused to take the pred and most probably paid more for this and built up more scar tissue. As I have now had an op I need to get rid of inflammation sooner rather than later to avoid another stricture. I do get where you are coming from though, my course of pred is for 8 weeks in total and I dont plan to be on it for longer than this if I can help it. Because of the other things going on in your life though I think you need all the help you can get. When are you next seeing you doc so you can discuss a plan on how long to be in it and what other treatment options you have?

 

[Astra]

Hiya Amber
and welcome

Have to concur with the others.
Food will/can reduce symptoms but if there's active inflammation going on you can't manage this alone. It's fine to stick to a healthy lifestyle but you've got to get the inflammation under control first.
I was on Pred for nearly a year and as a result of this fab drug, I'm better now than I've ever been. Any side effects are a small price to pay IMO.
I truly believe that stressful situations are a trigger for me, so considering that you're about to embark on one or two, wouldn't it be a good idea to have the Pred well established in your system before the big events of a new job and a wedding?
Good luck and
lotsa luv
Joan xxx

 

[David]

Hi again Amber, I hope you're out there and doing better

There are various studies that show enteral nutrition can induce remission in people with Crohn's Disease. This news article references studies that indicate that 60-80% can in fact achieve remission. However, sticking to enteral nutrition can be VERY difficult and I think it's often a good idea to do in conjunction with other treatment options. It's about finding what's right for you, but there are indeed dietary options out there.

 

[AmberLee]

Hi All – Thank you kindly for the responses.
David – In response to your questions:
1. I’m ashamed to admit I in fact do not know where it is located. At the time I was diagnosed, it was a very scary time in my life, I had just moved to New York from Seattle, and had little support system. It all happened very fast, and the doctor admitted me the same day I came in to see him, and gave me my diagnosis as I was coming out of anesthesia. It’s a long story, but basically I was scared and buried my head in the sand. I have since relocated, and am in the process of trying to get that doctor to send my records to the new one, as I am older and wiser now, and would really like to know for myself.

2. My other symptoms are extreme fatigue and nausea, but mostly it is the pain and watery diarrhea. The pain is in my middle abdomen, a little lower than half way between my belly button and my chest. When I try to sleep at night, I feel I can’t move an inch, such as rolling over to the other side, without the spiking pain. It is about a 3 out of 10 if I don’t move at all, and a 9 when I do move. Also, my normally washboard flat stomach is really bloated, and sticks out so much I look preggers.

3. No, I have never been tested for any vitamin deficiency.

Feather, Angrybird (I love your username!) and Astra – Thank you so much for your responses and support! I am going to try to stick to the Ensure, at least until I see my doctor. My followup appointment with him is Thursday. I was really stressed about not taking the Pred and having to tell him about that. This week’s appointment with him was the first time I met him, and he was not friendly or helpful at all. I feel more prepared now to speak up for myself and talk to him about different options. I also want to tell him that I would feel a lot more comfortable if he could schedule another colonoscopy to see what’s going on in there, as I have only had one and it was five years ago. Does anyone have any opinion on that, good or bad? I just want to know what’s going on in my body, and I didn’t get a good feeling from this guy just firing off a million questions at me and then telling me I need Pred. I kind of felt like he just said that because I told him I took it in the past.

As an aside, (TMI alert) although my pain and bloating is the same, I had a pretty much solid BM when I got home today, the first in over three weeks where it wasn’t pure liquid. It was a good 5” long 1” thick. I hope you guys don’t think I’m gross talking about that, but I think it’s relevant, and I was both excited about it, and also even more confused about how to move forward with the Pred.

 

[Angrybird]

Hi there, let us know how you get on with your appt. As you are having symptoms I would say it is worth looking into having a colonoscopy, a lot could have happened in the last 5 years. At least then you will have a clear picture of what is going on and you can sort a treatment plan accordingly.

 

[David]

Hi Amber,

Please forgive me for my delayed reply.

1. You have NOTHING to be ashamed of. To this day I have no idea where my positive biopsies were taken from. As I haven't been back to that doctor since educating myself (I moved to another state) I probably will never know. BUT, it's important for a Crohnie to know as disease location can affect everything from treatment options to potential deficiencies.

2/3. I would request that you be tested for vitamin and mineral deficiencies. COMMON ones for Crohnies include vitamin D, B12, and folate. I would request those at the very least. I bet money you're deficient in at least one and that could very well be contributing to your symptoms, especially the fatigue.

There's really no such thing as TMI on this site. I'm currently updating a thread about trying to make myself poo worms (checking for parasites)

Keep us updated!