Diagnosed with Crohns 2 weeks ago

[BayAreaChronie]

Hey forum,

Been lurking on this forum since the diagnosis and figured I might as well type up an intro since I will be using this much more now.

I am 25 years old. I have had persistent lower abdominal pain for 2 weeks or so where it felt like a non stop cramp. I eventually made my way over to get checked and was told to wait a bit to see if the pain goes away. I waited another 2 weeks but at that point instead of going to Internal Medicine, I went to the ER. I was not able to walk at all or lift my right leg for that matter.

At the ER they ran me through a CT scan twice and a colonoscopy. They kept me there for 4 days to monitor how I was doing with the Cipro and Flagyl by IV and then gave me 40 of Prednisone.

They brought in a GI to inform me that most likely I had Crohns and that I was so inflamed they couldn't even see much using the colonoscopy screening. Not yet sure what most likely means reading into IBD it seems it is hard to diagnose many times if its regional or not. And since the scans showed up super inflamed, they are going with Crohns.

At this point they want me to taper off of Prednisone by Friday to 30 and then less each week. They also prescribed me Lialda last thursday. I have just finished my Flagyl prescription and have 3 days left of the Cipro.

My problem is I have never had to take pills before and being told to take these 4 massive pills is still a struggle for me. I have been staring at them since last thursday trying to convince myself to take these. Hopefully will be able to do so soon since reading on this forum and other sites that Lialda works better than those that I would be able to possibly crush - due to the coating of the pill. Though the issue of not taking any Lialda for the time being is also frightening considering all I have been reading about Crohns.

Anyways, that I hope to overcome real soon.

The one thing I noticed is that this is a IBD yet my current symptoms are more abdominal pain than bowel based. Maybe this will get worse once I start the tapering of the prednisone.

I noticed that percentages aren't that great for Crohns either in terms of silent remission - 75 percent require a form of surgery that simply scales it back for some time. Longest remission seems to be in averages of 5 year periods. Also, diets seem to be all over the place to ease bowel movements from Paleo to SCD to Gluten Free to refined white starch and low carb/low fiber.

Seems this could be one long ride ahead and one you learn to live with and accept. And being a 25 year old that never had to swallow pills before this is quite the blow to be told of all these what if scenarios and lifelong medication.

Don't want to be in denial and don't want to simplify the disease so just trying to grasp it all at once as much as possible with the help of this forum.

I hope to be able by tomorrow take the 4 horse lialda pills haha. I have also just bought some other things I picked up from this forum

Centrum chewable vitamins
Vitamin D3 800iu
Calcium 600iu
Krill Oil

Not sure if the quantities of the vitamins will really do that much as they seem pretty low compared to other amounts being mentioned here but don't want to overwhelm when I haven't been told about anything regarding nutritional deficiency from the GI doctor yet. Not sure if it is a separate test all together to gather what might be deficient or if I am ok (guess that is something I will need to bring up). Also, seems my GI doctor is on the side of a diet not helping out at all. I actually was a very picky eater till, well, now being 25. But I figured many have noticed benefits to a diet change, and so I will take this up on myself to follow = trying the gluten free route and a few starch items such as potatoes and rice products that are low fiber. Maybe change more from there.

Some questions I do have is with Crohns are regarding the lifelong battle. How often do most get colonoscopy's, needing to change medications to determine what works. And how do you determine when you might have a fistula or other issues where surgery comes in play. Is it an onset of increased pain? Are further complications fairly common or is the 75 percent surgery more so for removing inflammation? Also, the weight loss aspect - is this from the lack of nutrients being absorbed or loss of appetite? And when you first were diagnosed, what was the timeline before you noticed things getting either worse or hopefully better - such as average time before you may have been hospitalized again, had surgery, remission, etc. Seems many noticed an increase in symptoms coming off the Pred or at the 15-20 mark with Pred.

Now that I am done with this almost college like essay here...just need to double space and adjust font size...thanks for all the help/info and really like the ease of the layout of this forum to further educate and network with others out there who are also diagnosed. Wish you all the best.

 

[David]

Hi BAC (hope you don't mind me calling you that)! Welcome to the forum, I'm glad you joined and shared your story after lurking for awhile. Let's see if I can answer some of your questions (I'm sure others will have some great input later on) and make some comments as well.

1. Ask your GI why, if diet doesn't matter, does enteral nutrition have about the same remission induction rates as Prednisone when stuck with.

2. Yes, weight loss comes from malabsorption and subsequent malnutrition as well as changes in eating habits. Chronic diarrhea can play a role as well and I'm sure there's some minor variables I'm not thinking of.

3. I'm not sure what the average duration for colonoscopy's is. I'm sure others can chime in with their personal experiences there. I know I'm due for another one (I have a different form of IBD than you) but that $7,000 deductible I have doesn't really lend well for getting one anytime soon.

4. There are a variety of types of fistula. Some might simply go between bowel loops, be asymptomatic, and never need surgery. Others might go into an organ such as the bladder and cause lots of problems. Others still might go from the bowel to the skin. They'll almost always try non-surgical intervention first to see if they can get them to close on their own. If they can't, then surgery starts to become an option. Does that answer your question as I'm not sure I am interpreting it correctly?

5. You are correct that those vitamins probably won't help much if you are indeed deficient. Make sure that your doctor, at the very least, checks for vitamin B12, vitamin D, and folate deficiency. The more they're willing to check, the better. But these do not come with the standard battery of blood tests and you may very well need to request them.

6. Start collecting the results from all of your tests. Trust me, you're going to want these over time, especially if you start to educate yourself so that you can become your own advocate (a VERY good idea).

7. Were they able to take any biopsies when they did your colonoscopy? If so, did those biopsies come back consistent with Crohn's Disease?

8. According to the CT, was there active disease in your small intestine or just your large intestine?

I think I'll stop there for now.

Again, welcome to the community!

 

[BayAreaChronie]

Thanks for the detailed reply.
Fistulas seem to be very prominent with Crohns. Do you notice this by simply more pain and then get checked with a x-ray/ct/etc. How do you realize you might have one?


As for the surgeries most common, are they for the most part to remove inflammation then? Playing the percentages game of 75 percent, though hopefull, I wonder if the majority of that is to remove inflammation or if its because medication/diet and other factors were of no help after a certain point in healing further complications due to Crohns.

They were able to do a biopsy and thats when they diagnosed it as terminal ileum - crohns. As I really am into learning as much as possible about Crohns and the medical word really, I will try to catch up with the GI to learn about the biopsy. Wasn't told much else besides the diagnosis which she gave me only after asking about family records - so not sure if its cloudy on the Crohns and was diagnosed to be put on medication or if the biopsy really show all they need to distinguish crohns from UC, IBD, infection, etc.

As for the blood work, good to know. I will definitely ask to have a nutrient blood check. I dont know if my GI didn't want to overwhelm me since I only met her once since the diagnosis, or is she is very much a medication will resolve it all approach and see what happens overtime.

Again thank you so much for the help and will be on this forum as a user now as opposed to a lurker.

 

[Angrybird]

Hello and :welcome: to the forum. With regards to crohns and surgery this would not be used to remove inflammation on it's but would come into play if scarring has developed in the bowel and has caused a narrowing/obstruction that needs to be removed (when this happens inflammation can be also sometimes be found but this is not the primary reason for the surgery) or as part of treatment for fistulas/abscesses. I have not had either of these - and feel very fortunate about this - so could not advise on what to look out for with these.

With regards to the pills you have it may help to cut them in half so they are not so big to try and swallow?

AB
xx

 

[David]

BAC, regarding fistulas, you may want to ask other members in our fistula support forum how they knew they were getting one. I can tell you what i've read, but personal anecdotes might serve you better.

My problem with you getting Lialda when you have Crohn's Disease of the terminal ileum is Lialda is specifically formulated in a manner where it targets inflammation in the colon (don't break the capsule by the way). It is not formulated to treat Crohn's Disease of the terminal ileum. It would be like you having a sunburn on your arm and the doctor telling you to put lotion on your leg. You may want to ask your GI about that as having the proper treatment regimen is of utmost importance.