Finally - a diagnosis, now what?

Hey Everyone! My name is Jen and I am new to this forum. I've been struggling with digestive issues for about 15 years and up until now all I could get out of the various doctors I visited was a diagnosis of IBS. Over the past year I've been getting a lot worse so I decided to try another GI and he immediately put me through all the blood work, a colonoscopy and an upper GI in which they found advanced inflammation and ulceration of the terminal ileum, the diagnosis - Crohn's. I'm now taking 11 pills a day for the next 3 months until my follow up in August. I'm searching high and low for answers about this disease and what I can do to get better. I am not a pill popper, up until now I rarely even took tylenol so my goal is to do whatever I can to minimize the amount of medication I need to be on. I have to admit that some of the things I'm reading about are scaring me (cancer, surgery to remove the colon, etc.) but I'm trying not to let it take over me.

The first thing I asked my doctor is what can I do about my diet and he said that the medication should take care of everything and I shouldn't have to worry about that. I strongly disagree with this, although I do respect him, he's the best I've found so far. I can't for the life of me understand why a disease of the digestive system wouldn't be affected by the diet. I know by my own experiences that certain foods are triggers for me. He did say that I can certainly eliminate foods that are triggers, etc.

It's just all so confusing and overwhelming and I'm just having a difficult time adjusting to it all, especially the 11 pills a day... I'm glad I found this forum, I've read through a few threads and it's great. Thanks in advance for your help and support, I know I'll be visiting here often!!

Hi Jen,

Welcome!!

Your problems for 15yrs prior to diagnosis are not rare here so you will find plenty to chat about and ask too. It can be such a relief to know your "gut" instinct was right all along and you arent crackers ;-) even though the diagnosis can be overwhelming and a blow in some respects. Your crohns is in the same place mine was seen on colonoscopy and its a place where your fat soluble vitamins and bile salts are absorbed.

Just about everyone here recognises the need to look at crohns from several aspects and diet, meds and yes surgery (occasionally) do come into that. Not everyone needs surgery and its certainly not a cure as crohns is an autoimmune disease but remission is possible. You are very right to try and do what you can for YOU.

I have several health issues which they have discovered are linked to my crohns and diet is a huge aspect for me as an individual. You will see on the foods threads many different things folk try from elemental diet to cutting out specific foods as you mention. Most find foods that create acid or high fat and high fibre to be culprits so may give you "food" for thought.

Keep asking and keep popping in. We try very hard to support each other here and its a great place to let off steam or rave about a great day too as we all understand no matter what level of IBD we have.

Glad you found us! Take care.

Hey another American (not that others aren't welcome, not at all, just seems more rare for new US Crohnnies)....

I have had Crohns nearly 2 years (diagnosis wise) and still fear the cancer and surgery looming in the realm of possibility, all I (we) can do is to battle this disease the best we can to deter it's more severe reprucussions. Let fate (what have you) decide what happens from there, as we can't control anything but the "battle" and hope for the best.

Your GI seems to truly mean that diet does have impact if he says to avoid any trigger foods, it's odd he is trying to beef up the meds to the point of making what you eat insignificant though on the other hand. Sounds slightly conflicting, but I am betting he's doing it to make you have optimum faith in the new meds, maybe he knows about your reluctance to ingest pills, as you say? I don't know.

Welcome, at first reading so much about other experiences about this disease was too daunting a few months ago, but it's eased the "impact" some since then, it's an outlet of sorts. It's like a club......a club that nobody chooses to join, albeit.

hi Jen & welcome

i would agree with Jan and Benson in that diet is a serious consideration with regard to feeling the best you can with Crohns.

as you've already identified some trigger foods for you, i would suggest you start from there.. figure out what categories those foods fall into, and maybe cut out similar from your diet. i strongly believe, when we're starting out into the world of Crohns-friendly foods, in taking things back to the beginning, and increasing from there. meaning, try to get onto a simple, easy to digest, low residue diet.. let your body settle into that for a few days, then introduce other foods you regularly have, one at a time, and see what effect if any they have on you. a food diary is a great help at this time. if you read through some of the threads here, you'll find really good descriptions of what people can and cannot tolerate, and the various dietary tips they follow, but remember that one food can be fine for one Crohns sufferer, but not another.

Hi Jen.. My personal belief is that diet is important. You discoverd for yourself the triggers that affected you.. Tho there is no overwhelming scientific evidence one way or other, I figure it is best to err on the side of caution. I do however believe that a modified diet won't control this illness. (by itself). A very stringent one like SCD might. I think what a good, general IBD diet will do is minimize the stress on the GI tract, and perhaps extend the life of your tract.

Hi Jen and welcome to the forum. It's a really great place with a ton of information. I was never a pill popper either, but once I felt better taking certain medications, I quickly got over that. I found that feeling better was way more important to me than anything else.
Don't let anything with this disease scare you. We become so strong having Crohn's. You can handle anything that comes your way.
Good luck and feel better!

My Butt Hurts said:

Don't let anything with this disease scare you. We become so strong having Crohn's. You can handle anything that comes your way.

Click to expand...

quoted for the truth!


welcome Jen!

Welcome Jen. I think I posted something to you earlier and never welcomed you. I know what you mean about the pill popping but it's just something to get used to. For a while I was taking one and a half pills a day, then no pills but remicade, and now I'm taking between 12 and 20 pills a day depending on how much tylenol I need to get through my backpain along with prednisone, flagyl, levaquin, and hopefully tomorrow something that will allow me to sleep at night. I'm also taking melatonin and may be trying other things of that nature to help my digestion and stuff like that. Just make sure to keep taking your drugs and seek out answers for everything. Whenever a doctor prescribes you something question him. Ask why he is giving it to you? Side affects and such.

I would look into changing your diet if you can. Just don't be so strict that you can't pull through with the diet. That's the problem with them. They are all so strict that the temptations keep piling up and eventually you splurge. Also look into doing some exercise when you can. Start really slow and work your way up. Best of luck

Thanks everyone!! I definitely will take all of your suggestions, I really appreciate it. I have started a food journal, I already exercise regularly and I know that helps a lot, and I'm just generally trying to relax and not let the stress of it create more issues. I'm just really glad to have found this forum. Right now I'm on Pentasa (8 per day) and Entocort (3 per day). I'm feeling better already and keeping a positive attitude. My doctor did give me conflicting statements about diet, but the way he said it sounded like a required statement of some kind "there is no scientific evidence that diet affects this disease" but then in the same breath telling me it's ok to modify my diet as I see fit. Anyway, I know for sure that for me it's huge so I will continue to work on that as well as keeping up with the meds as the doctor orders. I'm getting used to swallowing those giant, plastic, horse pills. Blech.

Hi Jen. I just started taking Pentasa (8 per day also) and am very pleased with the results (thus far,) I was taking Asacol but they were not working. You are right they are huge but worth it - once you get into a rythm it all falls into place. I hope they work well for you also!!

Is there really much of a difference in Asacol and Pentasa, I thought that was like Coke and Pepsi, Hunts Catsup and Heinz Ketchup...

Haha I don't know, I've never taken Asacol, but the Pentasa seems to be working, and I have found a good method of swallowing them too without feeling like I'm going to choke. I'm also now gluten and lactose free which also has helped tremedously I think. The rash cleared itself up within a day or two without using any of the prescription cream that I've been using for years. That's huge for me and I'm feeling really good!

Welcome to the forum and glad you are feeling better. GL with the pentasa and endecort. Way less side effects then if they started you on prednisone. While I never saw much with the pentasa, I am on it as a maintenance drug for now.

Def diet plays an issue IMO - I am stil lworking on that as well but lactose free tends to helps many of us...certainly I.

Hope you continue to feel better!

Keara07 is right about diet. If I drink milk it's always skim and I try to eat fat-free everything. Prednisone is tough to say the least. As for Asacol and Pentasa: Asacol is designed to travel through the stomach and dissolve directly in the intestines, whereas Pentasa dissolves fully in the stomach. I like the Pentasa better but that's just me. Here's to staying strong and keeping a sense of humor!

Well, I thought skim milk has less lactose in it than 2% or whole milk, but I read on this forum (tho it could have been a linked story) that the less fat in a milk, the more lactose is in it. So skim has more. There are lactose reduced or lactose free milk.. I don't know if you are sensitive to lactose, or what about lactose hits those of us with IBD and lactose intolerance soooo hard, but even the smallest amounts mess me up...

Hi - the diet issue varies tremendously from person to person. Some CD sufferers swear that x,y and z will make things worse whilst others have no relief from avoiding foods.

Personally I cannot tolerate fibre but the only food regime that ever worked for me was the elemental diet - i.e no food at all !!

Having said that though when my flares are really bad just drinking water causes Diarhoea.

It is definatley worth keeping a food diary to remove the worst offenders and it alo makes you feel more in control.

Regarding medication I am currently taking 30 tablets a day and hate it - I refused point blank at the start of my flare up to take anything as I have bone loss from steroids use but after a week I was begging for a script.

My GP says that uncontrolled Crohn's does more damage to your body than the worst drug side effects ever could.

There is a diet called LOFFLEX (not sure if it is available in US?) - basically you take the elemental diet for 2 weeks and then reintroduce food groups one at a time for 3 days and document any effects.

This was a useful way of seeing what cause problems.

I follow a low residue diet which really helps.