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I'm starting a collection

Hi Everyone,

I'm currently in the stages of trying to get my intestinal condition diagnosed. I tried that about 8 years ago, but to no avail. It settled down and then flared up, settled, flared and you get the picture.

When I said I was starting a collection in my title, I meant of disorders/diseases. I have Epilepsy and have had it since I was 8, but diagnosed at 9-years-old. I'm now 36.

I had Ovarian Cancer at 27 and spent my 28th birthday still recovering from surgery, but it was a total success and didn't require radiation etc. However, I did wonder if taking the omentum off my bowel stirred up what I've been dealing with for several years as a week later after my surgery, I was back in the hospital as I was experiencing terrible stomach contractions - like someone was squeezing the stomach organ every minute or so. I determined I had become sensitive to carrots. Odd, as that may seem.

In 2008, I saw a specialist and had a scope up each end and they couldn't find the cause to my gnawing, raw and shooting pains in my stomach and intestines that would cause me to ditch food for liquid meal replacements and shy away from eating much at all during work hours. I was scared it was cancer, but if it was, I probably wouldn't be here today.

Anyway, I moved countries (originally from New Zealand) and now reside in the US and these past several months, I've noticed an increase in frequency in my pain. It's happening ever 2-3 weeks and lasts between 3-4 days, during which time I shy away from food and liquid. Finally, I got to the point I couldn't do this anymore. My job is quite demanding physically and if I can't eat for fear of pain, I will at some point pass out on the street, so I got a CT which indicated inflammation in my small intestine, thickening about midway down my abdomen (intestine) and intussusception (I hate that word and often misspell it). Anyway, they're going to give me a pill cam, but due to the thickening in the mid portion of my small intestine, they're going to give me another capsule first to ensure that passes and they can actually perform the real test.

I asked the specialist what he initially thought, without being able to 'see' what's going on and he suspects Crohn's, which I do too. I'm not scared of the diagnosis. To me, a diagnosis that isn't just 'syndrome' (which I treat as an umbrella term for "we know there's something wrong, but we don't know what it is, or what causes it), is the beginning of a journey to helping oneself. If diagnosed with Crohn's, I want to try and manage it as naturally as possible. I am already medicated for epilepsy and that is fully controlled with meds, but I wouldn't take them if I still had seizures. I'm a bit stubborn like that.

In the meantime, I've started on a regime of digestive enzymes to see if that helps and will probably try Swedish Bitters in a few days for the first time. I think I have poor digestion and I've had a slow bowel since I was born. I'm not sure if anyone else uses either of these things, but if you do, feel free to chime in on if you think it helps. What works for one person, doesn't necessarily work for someone else.
 
I think I have poor digestion and I've had a slow bowel since I was born. I'm not sure if anyone else uses either of these things, but if you do, feel free to chime in on if you think it helps. What works for one person, doesn't necessarily work for someone else.
Sorry no experience with either of those things but you have certainly hit the nail on the head with what works for one person doesn't necessarily work for someone else. My son has crohn's in the small bowel in addition to the TI and duodenum. When he is flaring he shies away from food as well we generally will give him nutritional drinks similar to Ensure/Boost but has been further broken down making it easier to digest.
Most people unfortunately need meds to get to and hopefully maintain remission. We've tried many diets: SCD, Paleo but have found clean eating seems to work best for us. Have a look through the Diet section if you have not already. Ask tons of questions there is generally someone on here that has been there and done that, usually more than one who are happy to provide their experience and insight.
Good luck with the dummy cam and pill cam and hope they give you some solid answers and you are able to put a plan together for treatment.
 
Thanks for your response.

I'm still waiting for a call to say they have the 'dummy pill' available. It's been over a week, I'm wondering if they only get them in bulk quantities. I just want to know what's going on and get to the proverbial bottom of the issue as much as possible. I've nausea the last few days and have had to resort to Ondansetron (8mg) which was prescribed. At the time it was prescribed, I really didn't know why they'd given it to me, but it's been helpful. I hadn't really been getting nausea, but I guess that's a new development. I only take it when the nausea won't go away.

I had diarrhea this morning and wondering if maybe that's from the digestive enzymes I started taking. Unlike the 'classical' symptoms, that one has been lacking from my pre-diagnosis symptoms.
 
My son never really has diarrhea either typically not a symptom of small bowel from my understanding as large bowel still works to pull out the liquid. Nausea can also be a symptom of small bowl especially if there is narrowing.
Totally understand on the wait I'm awful just want answers and a plan so I can move on
 
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