And this is where I get nervous...

[SaltRose]

Hi all!

I'm new to the forum and I'm still in the diagnostic phase but my GI feels certain I have Crohn's. I've felt pretty calm and ok with this ongoing process of diagnosis until recently when I realized the toll its taking on my kids. They are such troopers but our days of daily runs to playgrounds and swimming and exploring have been cut short and the frustration building in them is breaking my heart. I'm so just tired and when the pain is there, even though its mild right now, it feels like a weight sucking the strength out of me.

It began about 3 weeks ago when I woke up in the middle of the night with the worst pain I have ever felt. It was a rolling, wave-like contraction that started at the base of my sternum and rolled down. It felt like labor pains from when I had my kids, but higher. At least with my labor pains, there was a pause between contractions for me to breath and rest, with this the flood of nausea would hit when the pain would subside and then the pain would hit again. After dry heaving because the pain was so intense I decided 'maybe this isn't just indigestion' and went to Urgent Care. I'm never sick so my initial reaction was 'this isn't happening, I'm being melodramatic' but when I began to get scared to move for fear of another wave of pain I knew it was time to put my stubbornness aside.

The Doc thought I had appendicitis after seeing an off the charts white blood cell count so a quick visit to radiology and a CT scan later showed 'diffuse bowel wall thickening involving minimally dilated loops of ileum' and the radiologist said he didn't think it was an infection, but looked to him like IBD. The urgent care doc said I needed to see a GI, sent me home with flagyl and cipro and that's when the testing really began. So long story short (I'm sure you all know how it goes, blood test after blood test, stool test after stool test), my GI tried a colonoscopy, but couldn't get into my ileum. They had me scheduled for a double balloon enteroscopy (both oral and rectal... good times), but the doctor who would have performed that cancelled after he saw my CT scans. He was worried about reaching the ileum in full, particularly with all the strictures. I thought the DBE could work out the strictures and could also reach the full length of the small intestines... but this doctor who is very nice and a colleague of my AMAZING GI, wants to err to the side of caution, I'm happy that he is concerned for my well being and how this will play out for me. Anyhow I'm getting nervous now. They won't do the capsule endoscopy because they are afraid it will get lodged, but as far as I knew those cameras were TEENY. When that was said I realized the full extent of how dilated my small intestines just may be. I thought minimal was good, but apparently minimally dilated means minimally open (you think after having 2 kids I would know what dilation meant...). Has anyone had to have exploratory surgery on the small intestines? I don't know if that is what they are thinking but what else coud be left? The call that was supposed to come today telling me the plan never came (of course) and I'm laying in bed wondering what happens next as so many of you have done yourselves.

So I'm hoping some of you have some insight on what to expect and what you've gone through. I'm not even diagnosed yet so I'm not sure if I should even post here but I figured many of you have been up an down and through the tracks with your illnesses and can maybe give me a little perspective.

Thanks!

Annie

 

[JDTM]

Annie, first off I'm sorry about what you're going through! It sounds like you're getting proper medical care, so things will be looking up soon, I'm sure of it.

I just wanted to chime in and mention something about the capsule endoscopy: There is a pill that doctors can use (I think it's called a patency capsule) in order to test to see if a camera capsule will get stuck or get lodged somewhere. The pill will dissolve after a set amount of time if it cannot be passed. This may have already been brought to your attention, but you might bring it up if there's any doubt about whether or not a capsule endoscopy will work for you. If your doctor is confident that sections of your intestines are already too narrow for it to pass, then that's understandable. Just thought you'd want to know.

Waiting for answers can be agonizing, I know. Just hang in there and keep us posted on your progress!!

And don't worry about not having an official diagnosis yet. There's an entire subforum dedicated to those who have not been diagnosed yet, so you're not alone in that. Wishing you luck, and keep asking questions!

 

[LauraGrace]

I'm sorry you are having to go through all of that. It's never easy having to do all the tests, and it's especially hard in the beginning when you don't know what to expect at all.

Being sick is so hard on you, but it is also really hard on our families too. I know that I'm not always the best mom I could be for my kids. It's hard to be patient when you are in pain, and it's hard to go out and do things with them when you are in pain too. But just do the best that you can.

Good luck!

 

[SaltRose]

Hey Jesse- Thanks for the info! I will definitely ask my dr. I'm sure he has his reasons but he's so good about taking my questions and explaining to me fully his reasoning for his treatment. I'd love to do the capsule just to see what's going on in there!

Thanks Laura! It's good to hear others who struggled with mothering and guilt (I guess this is probably more common than not for all mothers, ill or healthy!). How long did it take to get your diagnosis?

Lastly, any advice on diet? I find my appetite is on and off. Yesterday nothing was working for me and today I had a whole sandwich and haven't wanted to die from nausea yet (although it's early... feels like it takes a few hours post eating for the nausea to kick in).
My sister mentioned me trying a modified paleo diet. I'm wary of anything too restrictive (I'm too rebellious... if you tell me I can't have something then good God I must have it). Has anyone tried paleo or SCD and found it made a difference?

 

[JDTM]

If your guts are narrowing at the moment, I would suggest trying to supplement with some sort of liquid nutrition -- something like Ensure or Boost would work. I personally like Orgain, which you can get at Rite-Aid; it's a lot like the other supplement drinks, but no HFCS, less sweet, might be a little better for you... anyways, any of those are likely to be easier on your guts than any sort of vegetable roughage, at least while you are currently experiencing inflammation. There are people on the forum who have found success with the paleo diet or SCD, but I'm not sure if they started off when they were doing sort of OK (vs. being in a flare). I personally drank Orgain when I was in pretty bad shape -- it gave me some sort of caloric intake, as well as some vitamins and nutrients that I wasn't going to get otherwise. However, I also don't have much of a dairy sensitivity, which made a difference, as some people find dairy to be aggravating to the gut. Let us know how you end up doing as time goes on!

 

[Amy2]

I am the third generation of moms to be sick in my family. My grandmother who died when my mother was a child spent her last years in the hospital. My mother got sick when I was 11 and I've been sick since my youngest was a baby.

I can see the dysfunction our illnesses caused in each family. I blame my illness for not catching my son's Crohn's disease earlier (among other things).

Stronger my a$$. In my view, what doesn't kill you, hurts you and everyone who needs you.

Hopefully, you have a wonderful extended family and great friends who will be able to step in where you (through no fault of your own) fall short!