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Crohn's Disease Forum » Your Story » Surprise! I have Crohn's, and confusion.


03-05-2014, 11:18 AM   #1
ccerulean
 
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Surprise! I have Crohn's, and confusion.

Hello, I'm feeling very confused. I'm hoping I can get some support/advice from this forum. I'm a 32-year-old woman with no history of health problems, GI or otherwise, until now.

Here's my story:

On Dec. 31, 2013, I awoke at 5:00 am to what I thought was a very bad gas pain in my low abdomen. I went to the bathroom, passed gas, had a normal BM, but the pain was fairly intense, leading me to even lie on the floor for several minutes. I took a Gas-X, went back to bed, and the pain must have let up enough that I fell back asleep. When I woke again, my entire abdomen was sore and achy, but not unbearable. I thought it was muscle pain. Stayed in bed most of the day. The pain let up gradually, and the next day (Happy New Year!) I felt even better. But started running a fever which prompted me to go to the hospital, who ran a CT (inconclusive, possible appendicitis?) and sent me home on Cipro and Flagyl.

Throughout the month I still had a vague ache in my lower right quadrant. Some days were better than others. Mostly the antibiotics made me feel terrible. Doctors take "wait and see" approach. Fast forward to February 7: I had another attack of similar (less intense than the first time) pain. Went to the hospital for 3 nights where they pumped me full of more antibiotics and fluids. A second CT came back the same, inflammation of appendix-region and terminal ileum, but not clearly visualized. The doctors were pretty convinced I had a ruptured appendix at this point, since I've never had stomach troubles or issues with D before.

On my follow-up, the doctor ordered a colonoscopy and endoscopy to rule out Crohn's before doing a revision appendectomy. At the colonoscopy, ulcerations were found in the terminal ileum, and I was diagnosed with Crohn's. The biopsies have not yet come back, and I was told I would discuss those was a PA at my next follow-up in 3 weeks. In the meantime, I've been put on budesonide and pentasa.

The meds have upped my energy considerably and I think I'm starting to finally feel better, although I'm not sure if I'm just getting used to the dull ache on my right side. I've been on a low-residue diet since Feb 7 (doctor's orders), and as a person who craves fresh vegetables when they feel ill, it's been difficult for me.

I'm finding it hard to accept my diagnosis with no prior history, although as my doctor says, "it has to start somewhere." I try not to research the disease too much because I have an over-active imagination which leads to anxiety. Add to this a touch of hypochondria, and it's not a healthy situation for me. On top of this, I LOVE food and variety of food. I've never had any bad reactions to any foods. Thinking I may have to permanently alter the way I eat is devastating.

The only thing that makes sense to me is the Crohn's-Vitamin D connection, I've always had chronically low vitamin D levels and take supplements. I had previously chalked this up to living in cold and dark Upstate NY after being tested for thyroid, Celiac's, etc.

Any advice you can offer would be appreciated. Thanks in advance.

tl;dr - Normally healthy 32-yr-old gets diagnosed with Crohn's after two incidents of abdominal pain. No previous GI issues. Freaking out commences.

Last edited by ccerulean; 03-05-2014 at 02:03 PM.
03-05-2014, 01:55 PM   #2
SarahBear
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Welcome to the forum!

It's great news that you're already starting to feel better. Your condition was caught early, and that always makes things easier.

You may not need to permanently alter your diet. If the foods you're eating aren't causing you pain or other symptoms, there's no need to avoid them - especially things like veggies, that are good for you. I eat the same way I did before, I just limit raw vegetables as they do cause me pain if I eat very much of them. Why did you go on a low-residue diet if you weren't having issues with foods?

Just to be sure foods aren't causing you symptoms, you might want to keep a food journal for a little while. Make note of everything you eat and drink and all of your symptoms - the more detailed you are, the easier it is to make connections. You might consider adding foods back into your diet one at a time, as well, as that would also make it easier.

Your life doesn't have to be completely changed by this. Most people with Crohn's live normal lives - we just may need to take a few more breaks than others.
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03-05-2014, 03:45 PM   #3
Axelfl3333
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Sarah,s correct your diet may not have to change much at all especially if you doing well,I,m keen on veggies and salad myself. I,ve become an expert with homemade soup tasty nuitriticous and healthy,salad stuff I,ve found spring onions are truly horrific for me,but maybe not with you,listen to your body.all the best good luck
03-05-2014, 10:18 PM   #4
pink&green
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Hello and glad you found this forum there is lots of information and advice on here so don't hesitate to ask.
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Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
03-08-2014, 03:24 AM   #5
DeniseE
 
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I'm finding it hard to accept my diagnosis with no prior history, although as my doctor says, "it has to start somewhere." I try not to research the disease too much because I have an over-active imagination which leads to anxiety.
I can totally relate to this! I'm 46 and considered myself to be pretty healthy and fit. I was diagnosed with Crohn's in November last year after I ended up at the Emergency Department of my local hospital with what I thought was a bad gastro bug.

I'd been seeing my GP for over a week and she had finally decided it was time to get some tests done - she'd arranged for ultrasounds and also an appointment with a GI about a week later. She'd also told me that if I did get worse that I should head for the hospital.

I ended up there the next day and I guess I was really sick as I was seen by a doctor within 10 minutes of walking in the door. My inflammation markers were at 250. I was seen by the GI team and they decided to admit me and put me on IV antibiotics. They scheduled a colonoscopy for the next day and didn't get that far because of severe ulceration - this lead to the diagnosis of Crohn's. I was put on prednisone and had some response to it but not as much as my GI wanted so he suggested Remicade (which I've been on ever since). This has stopped my symptoms and enabled me to get back into exercise.

The hardest part for me too has been accepting what I've got and wondering how it will affect me in the future. It took me over a month to start to be able to read into the disease and join the forums - and it's only now that I've started posting. I'm sure you'll get to the stage where the research does help and help you come to terms with where you're at!

I've found that I haven't had to change my diet. I was very cautious at first but have found the only thing I need to do is eat smaller meals - I still don't have much tolerance for being too full! Good luck!!
03-08-2014, 06:44 AM   #6
Nancye50
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Same boat here! I'm 38 and was just diagnosed after being admitted for a bowel perforation. Same type of ongoing cramp/ache turning acute pain but no typical GI complaints before (diarrhea all the time, etc).

The hardest thing for me to accept right now is going on Imuran forever. I'm really dreading it and wish there was a less toxic option.

I'm staying fairly low fiber but I only crave veggies out of obligation . So I bought a good juicer. I know when I've really tried to "get healthy" and eat tons of raw veggies & salad in the past, I end up feeling worse.

I'm glad to have found a couple of people in similar situations!


03-08-2014, 07:12 AM   #7
dave13
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Welcome Nancye50,I was diagnosed in 11-13.I was freaked out as well because I felt food was now my enemy.I've since calmed down and realized I have to listen to my body.Trial and error.We do have to be careful.Once we find our triggers there is no reason to not enjoy what we can eat.I've slowly re-introduced foods and am getting a pretty good picture of what I can and can't eat.We are all different,when it comes to food, and that can be confusing.No definitive list of yes or no.

Despite CD I feel my diet I follow now,along with regular exercise,helps me feel pretty good most days.I'm just more imaginative and willing to try new things when it comes to meals.It does take more time to eat properly.I really have to plan ahead and consider prep time.I feel it is worth it.Hope you do well!
03-08-2014, 05:50 PM   #8
ccerulean
 
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So. I just got my pathology report back, and it states that I have colitis! How does this differ from Crohn's? It's my understanding it only affects the inner layers of the colon, but are they two distinct diseases, or is one a version of the other?
03-25-2014, 08:34 AM   #9
ccerulean
 
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Ok, I take it back. The Dr says I have Crohn's, despite the pathology saying colitis..? He couldn't explain clearly to me why the pathology was "incorrect." I am more confused than ever.
03-25-2014, 08:51 AM   #10
Kero
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From what I understand, colitis affects the top layer whereas Crohn's can be throughout all the layers of the intestine. Someone correct me if I am wrong, but I don't think colitis will affect the terminal ilieum. I do believe there is also a type of colitis that is associated with Crohn's
03-25-2014, 10:11 AM   #11
Nancye50
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Oh how confusing! I hope you're feeling okay, regardless of diagnosis!
03-25-2014, 10:30 AM   #12
valleysangel92
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Hi, im sorry I've not seen this before, I hope things are starting to become clearer now.

Regarding the colitis/crohns confusion -

It depends if the report meant Ulcerative colitis or simply Colitis.

Ulcerative colitis is inflammation in the lining of the colon, it only effects the surface layers and does not penetrate the lining deeply like crohns does and it only affects the colon.

The word Colitis itself simply means inflammation in the colon,which can be a result of a number of conditions including crohns disease. The same can be said for things like ileitis which is inflammation in the ileum. So in putting the word 'colitis' the pathologist could simply of meant that you have inflammation in your colon.

I hope this makes sense.
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coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
03-25-2014, 10:46 AM   #13
ccerulean
 
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I guess my question is, is the terminal ileum part of the colon? If not, shouldn't the pathologist have written "ileitis?"
03-25-2014, 11:01 AM   #14
valleysangel92
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The terminal ileum is where the small bowel and large bowel (colon) meet, so the inflammation could be at the end of the colon, hence colitis.
03-25-2014, 03:49 PM   #15
guest13
 
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read up on it and ensure you do not take it lightly, and do not let it defeat you.
03-25-2014, 06:02 PM   #16
Pink
 
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Welcome to the forum! This is the best place to become informed and empowered so that you can face your disease while knowing you are not alone. Learning you have a chronic illness brings a great sense of loss and fear. Over time you will adjust....
Good luck to you!!
03-25-2014, 07:55 PM   #17
dave13
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I guess my question is, is the terminal ileum part of the colon? If not, shouldn't the pathologist have written "ileitis?"
I would ask your Dr. to explain,in a way you can understand,what is exactly going on.Dealing with Dr.'s can be frustrating.Just keep asking for answers.Perhaps you can make an appointment and have him/her explain face to face.

Knowing as much as you can helps with the 'freaking out' part.Knowledge can be a tool,puts things in perspective so we can deal with what we re going through.

03-25-2014, 08:36 PM   #18
blackli
 
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I have what they term as 'crohns colitis' which I understand to mean I have Crohn's disease in the large bowel only. It doesn't affect the small bowel area and so I believe doesn't affect absorption of nutrients etc from food. I've never suffered from some of the weight loss issues that many crohns patients deal with (although sometimes I kinda wish for that, but just for about 20 lbs or so!) I do tend to drop about 10 lbs with each flare up, but put it back on and then some with each prednisone round. I have learned to avoid dairy, and spicy foods all the time, and fresh fruit and veggies when I'm flaring. Trial and error is the only way, but those are some of the most common triggers. Best of luck to you, hopefully you will have a milder case. So many people here have a really tough time, but they are so helpful to us all.
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