New, confused, and hurting.

[AmyNS]

This is sort of long, but I didn't want to leave anything out.
I’ve had issues with alternating from constipation to diarrhea for a while, in the past few years, I would pass blood every 3 to 6 months. Sometimes small amounts stuck to my stool, other times it would make the toilet water red. I never mentioned any of this to my doctor till May 2012, he thought it might be crohn’s. June 20th, I had a colonoscopy, I got through the prep ok, the anesthesia didn’t work, and it was somewhat a painful procedure. I was informed there was no special diet for after the scope, and continued eating as I did before. That didn’t go as planned. I had bad diarrhea for about 10days after, then it was back to the norm, switching back and forth, C&D, but with a lot of gas and bloating (way more than I’ve ever had before). Nausea, which I never had before, (I have vomited 3 times in 20 years!!) And of course, I had some pain. I got in Aug 1 with my GP to get my results, he informed me that they found and biopsied an ulcer in my terminal ileum, it was healing and could have been the cause of the blood in May. I waited, and he wasn’t saying anything else. I told him that I’m losing muscle tone and have trouble to walk up two flights of stairs, and can’t carry 10lbs, and my back is killing me. So he sent me for blood work, (shouldn’t it have been done in May?). Everything was within normal ranges. He didn’t call me, I went in and got the results and read them myself.
My GP told me to eat totally plain yogurt to get my post-scope problems fixed, wish he would have told me sooner. He told me to take benefiber twice a day, every day to help regulate things, and take stool softeners and kaopectate when I need them. Seriously?
The evening of Aug 22 I was nauseous, and had sudden severe diarrhea, on the 23rd i went 6 times starting at 2am (watery style with food pieces, first for me). The 24th just once at 7am, and it stopped. By 8pm I was in pain and at 9:30 I was hospital bound. 6hours in emerg, one shot of morphine/gravol, a blood test revealing nothing, and the doc says, “it must be ibs”. Seriously?
I’ve been reading posts on here since May when my gp said the dreadful ‘C’ word, and I never wanted to sign up, so many of you suffer so much, I felt like I was being a cry baby. But then i realised that you all know more about IBD then most of the doctors. If this really is IBS, ok, but where do I go from here? They don’t even suggest any diet changes or a dietitian, nutritionist, nothing. Help.

Amy

 

[David]

Hi Amy and welcome to the community! I'm really glad you joined and shared your story with us. I'm so sorry you're having a tough time though

First off, any doctor that says IBS without doing the testing to make sure it isn't something else gets zero respect from me. Don't put up with that mumbo jumbo. And considering the ulcer in your terminal ileum, that rules out IBS being the cause of all your symptoms as IBS does NOT cause structural changes to the bowel.

What did the biopsy results of the colonoscopy say? Have they done a CT or even better, CTE or MRE of your abdomen? Are you only working with your GP or have you been referred to a gastroenterologist as well? If you haven't been referred to a GI, that's definitely the next step.

What specific blood tests have they done so far?

We're here for you!

 

[kllyeve]

A good diet for IBS is the FODMAP diet - it is what my GI recommends. Ibs can cause pain, diahrea, gas bloating etc but as David says it won't cause ulcers in the terminal ileum. Ulcers there just scream IBD. So don't settle for the IBS label until you have more testing done.

You don't know how many cases show up here saying they thought they had IBS for 10+ years and turns out it was Crohn's all along and now they are at a mod to severe stage and need surgery or very strong drugs when if it had been diagnosed earlier they could have been treated and avoided all the pain and damage. BTDT.

Good Luck and hang in here!!!

 

[AmyNS]

Thank you so much for your replies, I’m glad to be reassured that its wrong for them to say ibs so quick and easy. Kllyeve, I’ve been reading up on alot of diets, thats a new one for me to check out, thanks!
My GP sent me to a gastroenterologist for the colonoscopy, he talked to me for 10 minutes, pushed on my belly till I had tears in my eyes, and said it’s not crohn’s. He agreed to do the scope anyway, but “just to check for hemroids” he was so sure of himself, it made me uncomfortable. He sent the scope results back to my gp. They said the ulcer was healing and was only on the mucosa layer. Gp didn’t send me for anything else, just told me I tested negative for crohn’s.
Blood test #1 the Gastro sent me for and seemed less then amused that the gp didn’t already do it. It was just for my blood count and to check for inflammation, I think. I didn’t get those results. Blood test #2 was a cbc and my thyroid, B12, lytes everything was normal. Blood test #3 at the Emerg was another cbc, the ESR range said 0-7mm/hr, I was at 15, but I found more info online, and it doesn’t seem like a big deal, (please correct me if I’m wrong). The ER doc told me that because things are passing through the system so fast, there are enzymes that make it to the terminal ileum, and burn the surface causing these ulcers. By 5am, after so many hours and the shot of morphine, I questioned alot, but wasn't my sharpest. This forum is amazing, I've learned so much. I'm going to read more about the tests you mentioned.

 

[David]

Ah, the good old abdominal palpation. The time tested gold standard for determining if someone has Crohn's or not. /sarcasm

What was the specific number your B12 level came back at?

I think checking further up in your small intestine may be warranted thus my question about the CTE/MRE. Capsule endoscopy is also a great way.

 

[AmyNS]

My B12 came back at 204, on the lower end of the scale, but still within the range given on my results sheet. I'm going to have to do alot of homework on this, in order to convince my doctor to send me for a cte/mre.

 

[David]

If that is 204 pg/ml then I'll bet any amount of money you're deficient in B12. As this paper showcases, the current scale is absolutely terrible as they have found that 50% of people with a level between 200 and 400 pg/ml are in fact deficient. With a level that low, your doctor either needs to test your methylmalonic acid level or supplement you. I personally feel everyone should strive to get their B12 level well above 500 pg/ml.

Now, this alone could cause many of your symptoms, especially the fatigue. But B12 deficiency also makes a Crohn's diagnosis more likely as it is rampant in people with Crohn's. With that low of a B12 level, I'd definitely want to see higher up in your small intestine.

If it was me and my B12 came back like that and I had symptoms like you, I would also ask them to test me for Celiac disease and small intestine bacterial overgrowth.

 

[AmyNS]

Thanks so much for helping me with this. its wrote as 204 pmol/L. is that different then how you listed it?

 

[David]

It is different. If converted to pg/ml that is 276 pg/ml. So my argument still stands. I wouldn't bet as much that you were deficient, but I'd definitely still bet that you were.

 

[AmyNS]

Is there a way to up my B12 intake without resorting to shots?

When I told my doc about losing my strength over the past 6months, he mentioned the B12, but didn't follow up about it. He's done this before, send me for one test, and try to fix an issue with a "band aid" remedy.

 

[David]

HIGH dose oral forms are absorbed at a rate of 1-2% if you're not absorbing B12 normally but it can be hard to get into optimal ranges. There are also nasal sprays and patches but I don't know how well they work. Shots are the best method if it's an absorption problem as they let you get your B12 well within optimal ranges. It's very important to get retested regularly to make sure whatever dose and delivery method are doing the trick for you. In pmol, you want to get your level to 369 or higher in my opinion.

 

[AmyNS]

Thanks so much David. at this point I'm debating going back to my GP at all. My husband is going to try get me in with his, and I'm asking around for a respected GI in Halifax.