Newly diagnosed. Have a few questions I'd appreciate opinions on :)

[Interactiv]

25 year old male in TX diagnosed today (biopsy from colonoscopy). I had been suspecting possibility of crohn's for a while -- I've had stomach problems since I was a child, though nothing ever diagnosed. Even today my symptoms don't have a huge impact on my life -- just treated it as if I had an easily upset stomach. The Dr seemed a little surprised my symptoms weren't more dramatic.

He gave me a paper with guidelines for crohns and other IBD. Suggests a high protein, low carb, low fat diet. Don't mind eating more protein, but are carbs typically a problem for people with crohn's? I like to eat a lot of noodles because they're convenient -- I've been able to attain pretty normal BMs while eating noodles frequently, so I'm hoping I can still eat those regularly.

My Dr. prescribed:

• Lialda
• Entocort
• Folic Acid 1mg daily
• Caltrate-D 600mg 3 times a day
• Zinc sulfate 220mg twice a day
• B-12 shots every 3 months
• Fish Oil 4g daily

First off, it's a lot. Second, I'm a bit concerned with Lialda (and Entocort to a certain extent). I generally avoid medication when possible and they have some side effects I'd rather avoid.

But would they be worth it? Am I at risk of it getting worse? I guess I'm just thinking my problems aren't seriously impacting my life right now, wondering if it's worth taking the risks associated with the prescription meds. He wants some blood work and tests done to see if I can handle some other meds. It all just sounds risky to me -- I don't want to end up having the things intended to fix my issues make things worse instead. I also don't want to not do anything when there might be good options that would help reduce risk of developing cancer and generally improve the quality of life for me.

Do the rest of the supplements make sense? He mentioned zinc-sulfate could help increase my appetite, which is probably a good idea. Not sure what the others are intended to do -- I assume they are to make up for what I'm not normally digesting.

I've been busy with freelance projects and moving to Dallas, but once I'm settled in I'm going to try and get in to see a crohn's specialist at UT Southwestern. Are there any good iPhone apps that are good for crohn's? Tracking meals, BMs, etc to make it easier to see correlations? I have GIMonitor by WellnessApps but I'm not really a fan of how it displays the information you input.

Appreciate any help! Thanks for your time,

 

[archie]

Hello interactiv glad u joined you can get loads of advice here. What symptoms do you have and were is your crohns located? Personally diet doesn't affect me too badly but that's different for everyone, usually it's a low residue diet people with CD are advised to follow carbs sometimes are the only thing some people can eat. If noodles don't bother you now then I wouldnt worry about it. Your doc sounds very helpful which is good and he obviously has you on all those meds and supplements for a reason. Are you currently in a flare? CD is so diverse but he seems to want to prevent yours from getting worse. Are you due anymore tests? Good luck and hope you get the answers you need.

 

[Interactiv]

Certain foods cause diarrhea, sometimes I have cramps/gas/noise in lower stomach, anal fissure. Ulcers found in terminal ileum (I think) of small intestine.

I'm just worried the Dr is being quick to prescribe stuff. I feel like I have time to experiment with less aggressive options. How likely is it that my symptoms would get worse?

Not sure if I'm in a flare or not... if so, it's been a long while and it's not affecting me too much. When I was like 10-12 I had a very painful stomach ache for a few hours but wasn't taken to the Dr -- perhaps it was blockage or something? Other than that, I don't think I've had any serious related symptoms/flares.

How common is it for crohn's to affect the throat? I have some odd symptoms that 'flare' but I'm not sure if they're related. Mix of nasal congestion, acid reflux, and anxiety causing my gag reflex to be super sensitive -- no fun.

Going in tomorrow to get some blood work and other tests done, but I think they're primarily to check if I'll be able to handle other meds.

 

[ksjacksonjr]

If your chrons symptoms are not affecting your life I would not take the harsh meds. Some of them have bad side effects. But for some of us the benefits outweigh the risks. I was on prdnisone for almost 2 years. My joints suffered severly from that. I would also beware the high protien. That was suggested for me as well. I followed it and now I have problems with gout. Gout sucks. I now have another med to take. I wold eat the noodles if those don't bother you and would probably add something like BOOST or ENSURE to help get what you are missing. I am the same way, I live on noodles. Anything else just kills me. But before you do anything discuss it with your Doctor. Ask questions and become proactive with your treatment. You would be surprised as to how much doctors don not know about crohns disease. I hurt my ankle and the first thing they want to give me is high doses of NSAID's. I tell them I can't take them do to my disease and they stare at me like I am stupid. I then tell them to consult my GI doctor and he sets them straight. The other thing is to know what you are taking and make sure there are not any reactions to other drugs. I have been made sick do to doctors prescribing drugs that don't react well with current meds. Do plenty of research as well.

 

[Sybil Vane]

I wonder why he said that he was surprised your symptoms weren't more dramatic. Maybe the CD is really damaging your bowel and he wants to stop that from increasing and leading to surgery. I would ask him if that is why he wants to get you on a med plan. I had one insensitive surgeon make the sign of the cross over me and remind me to never go off of my meds because he said I would end up with short bowel syndrome or no bowel at all. It was an awful thing to do to someone who was in pain and just had a portion of their small bowel removed, but he was trying to make a point. I would ask your GI what he thinks would happen if you didn't take the meds he prescribed and then I would get a second opinion. You might find the second doc thinks the first one overreacted or he/she totally supports the first one's treatment plan.

 

[Sybil Vane]

Oh, and I would get an endoscopy to check out your throat symptoms. If you have CD in your esophagus, you definitely need to get that under control.

I'm keeping my fingers crossed that you get the answers you need!

 

[xJillx]

Hi and welcome! Your GI sounds pretty good to me. First off, most GI's won't recognize diet can impact our disease. So, the fact he is offering diet advice is a good thing. However, diet is different for everyone, so look at his guidelines as only a suggestion. I can eat carbs without a problem. So, I think you can stick with your noodles as long as you don't find them to be bothering you. You have the right idea with wanting to keep a journal to record symptoms and your meals. I keep mine using a spreadsheet I created in Excel; I haven't found a good enough app yet.

Also, I like that he suggested supplements. Most GI's just push prescriptions. I am not sure they are all necessary, but I do think the Fish Oil is a good idea. Most of us take this as it is a natural anti inflammatory. However, supplements usually aren't enough on their own. I think his prescription for Entocort was the right move as it is a steroid that targets the TI, but causing much less side effects than prednisone. However, you won't stay on this forever. You'll need a maintenance drug such as Lialda to keep the inflammation away. Again, Lialda releases at the end of the small intestine targeting the TI.

I used to take Lialda, and I think it worked for me; all my tests were pretty normal after being on the drug. However, it did cause me to have some side effects that almost mimic IBD - loose stools, ab pain, etc. Most tolerate this drug well, so I wouldn't worry if I were you. And there are hardly any long term side effects. It's a fairly safe drug. I think by taking Lialda you are going to have a better shot at preventing your disease from progressing and needing the "big guns" down the line. I do think you are putting yourself at risk by not taking any treatment at all. Of course, if you are concerned about the treatment options, seek another opinion. Perhaps, another perspective will help make the decision easier.

 

[Interactiv]

After doing more research and talking with a friend who has CD, I've decided to try and follow the meds. Thankfully Entocort and Lialda seem pretty light on side effects compared with others... only problem is they cost $1000/$300 respectively and current insurance doesn't help much.

Oh, and I would get an endoscopy to check out your throat symptoms. If you have CD in your esophagus, you definitely need to get that under control.

I'm keeping my fingers crossed that you get the answers you need!

I had an upper endoscopy a bit over a year ago -- tissue seemed healthy but my lower esophageal sphincter doesn't always work right.

I really appreciate all the help from everyone! Hoping I can find a way to afford the medication. I hear there's a loyalty program or something for Lialda that can help with costs. Hopefully there's something similar for Entocort...

 

[SnowDay]

After doing more research and talking with a friend who has CD, I've decided to try and follow the meds. Thankfully Entocort and Lialda seem pretty light on side effects compared with others... only problem is they cost $1000/$300 respectively and current insurance doesn't help much.



I had an upper endoscopy a bit over a year ago -- tissue seemed healthy but my lower esophageal sphincter doesn't always work right.

I've heard very positive feedback about Entocort from friends, it dissolves in the gut and is supposed to be a lot less invasive than Pred. etc.

When you say that they cost $1k/300, for what amount? A months/years supply?

 

[David]

Greetings and welcome

• Folic Acid 1mg daily
• Caltrate-D 600mg 3 times a day
• Zinc sulfate 220mg twice a day
• B-12 shots every 3 months
• Fish Oil 4g daily

First off, I get the same feeling as Jill, I like your GI already and I don't say that very often around here. We've been working on a vitamin and mineral deficiency list but aren't done yet. Let me elaborate on what you have a little:

1. People with Crohn's Disease are commonly deficient in a variety of vitamins and minerals for a variety of reasons.

2. Folic acid is one of those commonly deficient vitamins.

3. Caltrate D. I love it. Did you have your vitamin D levels checked? If so, what are they? If not, get them checked as a higher dose may be in order. Vitamin D is very important for people with Crohn's Disease.

4. Zinc. *shrug* Won't hurt. Will it increase your appetite? I'm not familiar with that affect but that doesn't mean it's not true.

5. B12 - Crohnies are VERY OFTEN deficient in this bad boy and it's a BAD ONE to be deficient in. Did you have your levels checked? If so, what were they? If not, GET THEM CHECKED as you may need much more frequent doses.

6. Fish oil - lots of potential benefits including anti-inflammatory properties. You may want to look into krill oil for all the benefits of fish oil but reduced heavy metal exposure.

With all that said, yes, Entocort is expensive. It's made by Astra Zeneca which does have patient assistance programs. Click here to see if you might qualify.

Good luck and keep us updated!

 

[SnowDay]

Really informative David, thanks.

 

[Interactiv]

Sorry for the late reply -- I need to setup email notifications.

I've heard very positive feedback about Entocort from friends, it dissolves in the gut and is supposed to be a lot less invasive than Pred. etc.

When you say that they cost $1k/300, for what amount? A months/years supply?

For a month's supply (before my insurance, Entocort is about $1,200 for 90 pills -- $1,086 after insurance...). But since then we've tweaked it to more Lialda and less Entocort (1 pill/day instead of 3). If in another 2 months I'm not noticing significant changes he wants me to replace the Entocort with Imuran (I hope that's cheaper..).

 

[bozzylozzy]

i cant believe how expensive meds are. is this common for you guys in the US?

 

[Angrybird]

I must agree I am stunned at the cost of these meds. I know the NHS is far from perfect but cost is something I have never had to think about. I feel really bad for you guys, not only do you have to worry about this disgusting illness but you have the added issue of wondering if you can afford (literally) to be better!! I really hope that things improve for you soon and please keep us updated :hug:

 

[Interactiv]

Greetings and welcome
First off, I get the same feeling as Jill, I like your GI already and I don't say that very often around here. We've been working on a vitamin and mineral deficiency list but aren't done yet. Let me elaborate on what you have a little:

1. People with Crohn's Disease are commonly deficient in a variety of vitamins and minerals for a variety of reasons.

2. Folic acid is one of those commonly deficient vitamins.

3. Caltrate D. I love it. Did you have your vitamin D levels checked? If so, what are they? If not, get them checked as a higher dose may be in order. Vitamin D is very important for people with Crohn's Disease.

4. Zinc. *shrug* Won't hurt. Will it increase your appetite? I'm not familiar with that affect but that doesn't mean it's not true.

5. B12 - Crohnies are VERY OFTEN deficient in this bad boy and it's a BAD ONE to be deficient in. Did you have your levels checked? If so, what were they? If not, GET THEM CHECKED as you may need much more frequent doses.

6. Fish oil - lots of potential benefits including anti-inflammatory properties. You may want to look into krill oil for all the benefits of fish oil but reduced heavy metal exposure.

With all that said, yes, Entocort is expensive. It's made by Astra Zeneca which does have patient assistance programs. Click here to see if you might qualify.

Good luck and keep us updated!

I really appreciate all the info! I'm due for another B12 injection -- need to learn how to give it to myself so I don't need to make extra trips to Dr. Is there a guide to buying quality vitamins? Is the CVS brand equivalent?

 

[Interactiv]

i cant believe how expensive meds are. is this common for you guys in the US?

I must agree I am stunned at the cost of these meds. I know the NHS is far from perfect but cost is something I have never had to think about. I feel really bad for you guys, not only do you have to worry about this disgusting illness but you have the added issue of wondering if you can afford (literally) to be better!! I really hope that things improve for you soon and please keep us updated :hug:

Yeah, I've never been a fan of our healthcare system -- I've always advocated UHC and other measures. But now it's personal.

 

[bozzylozzy]

i kinda feel ive rubbed salt in the wound with my comment lol.
but it does baffle me, when i hear about some politicians who are against systems like our NHS.
hopefully, like you said that your symptoms are not too severe.. you can manage with vitamins and diet majority of the time