Newly Diagnosed, Confused, HELP

I was recently diagnosed with Crohn's Disease however, I think I may have had it for years.  My medical history is starting to make sense to me. 

In December 07, I got sick for a week with diarrhea, fever, vomiting and thought I had the flu.  For the next 4 months I had rectal bleeding with mucous and blood clots.  It was very severe at first which prompted me to call my GI.  I went in immediately for a colonoscopy and he thought I had bacterial colitis.  All the biopsies came back negative for bacteria and he diagnosed me with ulcerative colitis.  Over the next few months my symptoms varied.  I had severe abdominal pain on the right side, mouth ulcers, pencil stools, bloating and bleeding. My GI ran more tests and concluded 2 weeks ago that I have Crohn's Disease.  I just had a small bowel follow thru with the barium Friday and the doctor said everything looked normal!   How come I don't feel normal then?  And if it is normal, do I have Crohn's?

I am currently on prednisone and dipentum and nothing seems to be helping.  I am bloated, feel like I have to go to the bathroom only to have pellets or blood and mucous come out. (Sorry for the graphic description).  I am so confused.  I don't know what to eat.  I don't know if I should go on a liquid diet.  I did the Maker's Diet for 40 days with no change, I have gone on a bland diet with nothing but starchy, easy to digest foods with little change, and now I don't know what to do. 

This is all so new to me.  I have been researching the disease and reading a lot of posts here on this forum.  It has been really helpful.  It is comforting to know there are others out there dealing with the same issues.  Some of you seem like you are old pros at this.  Please if you can shed some light for me or have any helpful advice, I would greatly appreciate it. 

 

Hello Lady, welcome to the forum but sorry you have a reason to be here. At least you've found it early on compared to some.

Best resource I can recommend is the book Listen to Your Gut and you can find it under the crohn's books section of the resource directory here. In it, and her other book the IBD Remission Diet you'll learn about using an elemental diet to help get your symptoms under control, which, ideally will eventually allow you to be able to be comfortable with weaning off the drugs and their side effects. Aside from a fistula it's worked for me and lots of others you'll find at the author's forum.

What you've described is nothing new to many here and don't ever feel the need to apologies for being graphic in your description. You can relax and be comfortable asking any Crohn's related question here. I think anyone who's been on this forum for any amount of time at all has read just about anything imaginable. Ask away and before you know it you'll start getting answers or at least bits and pieces that you'll put together to be your own personal health solution since it's so individualized.

Hi LAdy C and welcome to HW. I'm sorry you need to be here, but glad that you've found the support.

You will hear from many who have been told by their Docs that everything seems to look normal on the tests, yet we are still suffering. Crohn's has a unique way of hiding itself from the Docs. I was sick with all kinds of gut and joint problems for close to 25 years before finally getting a diagnosis and now, 5 years later, I am "undiagnosed" again, because the DD (darn disease) is hiding once again. Luckily, my GI is still willing to give me the Pentasa, which seems to help a little and my Rheumy has been treating my joint problems with pred and Humira, so I'm covered all the way around.

The symptoms you've described, most especially the bleeding indicate that you're disease is NOT in remission and is in fact active. If the medications that you are taking are not controlling your symptoms, you need to talk to your Doc and demand that he address it. If he does not, you should consider a second opinion. There is no rule that says we can't see another Doc. Just tell your current GI that you'd like copies of your test results for your Primary Care Doc and then you'll have them for whoever you see.

Actually, many of us have binders with copies of everything. Often, we need to see a long list of specialists to deal with the complications that CD throws our way. I've been mostly lucky, but I do have arthritis which is related to the Crohn's and so my Rheumy needed my records. I shuffle reports back and forth between the Rheumy, my GI, my Primary and my Pain Mgmt Doc. It's easier to carry my reports than it is to get most Doc's to communicate directly with one another. Sigh.

HealingWell is a wonderful resource, especially for those newly diagnosed. You'll meet many wonderful people here and perhaps make some lifelong friends. I know that I have.

Just remember, there are all sorts of levels of disease and just because some people have a complication, don't overly worry that it will happen to you. Crohn's seems to be very different for each of us. As I've said, I've been sick for almost 30 years now, but I've never had a fistula, abscess or resection. Although my symptoms can occasionally make me miserable, the actual disease activity seems to be low. So low that it's often hard to even find. Feel free to ask any questions that you come up with. There's almost always someone around who has the answer or who has shared a similar experience.

best wishes.

Lady Cordelia,
Welcome to Healing Well. I'm glad you found a place to talk with others who understand what you're going through, because we've been there.

I was diagnosed with Crohn's in 1999 in my large intestine and rectum. It has never shown up in my small intestine, so that can happen to some people. I had a really severe case that was resistant to medicine and diet, so surgery was the best option for me. I've been in remission and medicine free since my surgery two years ago, so I'm very pleased with the results.

I recommend that you schedule an appointment with your GI to talk about the different treatments available, because Prednisone has too many long term side effects for it to be the main treatment option. Plus, it sounds like it's not controlling your symptoms anyway. There are medicines in pill form, ie. Azapriothine (Imuran) and injections, ie. Remicade and Humira, that have helped many people achieve short and long term remission.

Please keep us posted on how you're doing.
Cecilia

A "normal" small bowel follow through does not mean you do or do not have Crohn's. Some people with Crohn's only have inflammation in their colon. The radiologist who reads the SBFT is also important. My SBFT was interpreted as "normal" but a CT enterograph and colonoscopy showed otherwise.

Regarding diet, the only things I have seen general agreement on are (1) never eat popcorn, and (2) raw fibrous foods (veggies, salad, etc.) or  hard foods (nuts, seeds) can be troublesome. Apart from that, you need to discover for yourself. Chew your food well, drink A LOT of water, and I highly recommend keeping a diary. I do so, and write down what I eat, what the BM's are like, and how I feel. I bought a cheap daily planner to do this. By keeping a detailed diary you can trace back what foods trigger worse symptoms. 

Some people do benefit from a liquid diet. I myself have done it long-term using meal replacement drinks, and right now I do a mix of food and cans, or just cans if I'm having a bad day. The only caution is that liquid diets like Ensure contain a lot of sugar and can make the bloating worse. Look for a meal replacement drink that has a higher percentage of calories from fat. Ensure Plus is one example.

Best of luck.

Keeping you in my thoughts and prayers Lady C....hope things start improving soon. Welcome to HW. This is a wonderful support "family". Please come to us often....let us know how you are doing and ask away...we are all here for you.
Mary

Thanks for the info on the SCD diet.  I am going to look into it.

I saw my GI today.  He changed my meds.  He increased my prednisone and switched me from Dipentum to Lialda.  I'm scheduled to see him in 2 weeks.  Hopefully this gets the flare under control.  This disease is very frustrating!!!

Thanks to all of you for your support and encouragement.  It helps a lot!

Many of the medications we're forced to deal with have unpleasant side effects like that. Some are bearable, others will disrupt your life more than you find acceptable, in which case you should ask your doctor about finding different medication. Unless you have an extremely serious reaction, I'd suggest you give it some time and see how you do. If you're still getting these bad side effects, it might be best if you try to find a better medication.

As far as graphic descriptions go, within reason I doubt you'll get any objections from anyone here. Crohn's is not a disease for the weak of stomach, and accurately describing your poo can go a long way toward providing insight into your flavor of Crohn's. Thats another thing you should know- each person gets a slightly different flavor. Everyone has different symptoms, and each person will respond differently to each treatment.

As far as people not understanding goes... well, I'm not sure how to deal with that. My friend once implied I was faking a flare, and I punched him on the shoulder very very hard, and then ranted for like 15 minutes. Obviously that's not always the best course of action, but it worked. Typically, though, I've found most people to be understanding, or at least nod and pretend they do. If you're frustrated about it and need to rant, thats one of the many reasons this forum exists.