Looking for support

[Raine]

Hi
Am new to all this , especially as this is the first ever forum I have joined.

Well am 45yrs old and the last few months I developed a gastric bug causing really horrendous diarrhoea and abdo pain causing me to have a trip to hospital with a possible bowel obstruction. It was really painful and I thought i was going to faint with the pain. My stomach blew up and I looked heavily pregnant!

Apparently my xray showed my caecum was close to bursting, thank god it didn't.
Anyway, since then have seen specialist and had colonoscopy, gastroscopy.
I havve gastritis and on losec 40mg for this.
My colon was clear but I have ulcers in the terminal ileum, but biopsies have come back negative.
Still having on and off pain in Right lower abdo.

Have had a faecal calprotectin test this week and that was 96 , which am told am in grey area , although not normal and so now I need capsule endoscopy.
I was hoping it was negative and so be more irritable bowel thing but now all up in the air again as am still in limbo.
At what point do they get a diagnosis?
Not sure how much this capsule endo will cost or do I wait 6months through public. I know its the waiting that gets to me.

Am trying probiotics and aloe vera just to see if that makes a difference as specialist suggested. Have been doing this a week so far and been told to see how that goes for 6 wk.
I stumbled on this forum so am glad there are people out there in similar situations.
Thanks for listening.

 

[vanilla_chai]

Good morning (on this side of the world ), I'm afraid I don't have anything earth shattering but just wanted to say hang in there. I hate the waiting too. It took me a while as well to get a definite answer. Hope its sooner rather than later for you

 

[David]

Hi there and welcome to the community

I'm not sure I understand the wisdom of a capsule endoscopy if they already saw ulceration in your terminal ileum. It's not like they can take an additional biopsy with it and all they might see is more ulceration and like structural changes. But I'm not GI doctor.

I will say that IBS does NOT cause structural changes in the bowel so those ulcers are NOT IBS. Make sure they find what the cause is. Maybe it's Crohn's, maybe not. There's other potential causes of TI ulceration including a "bug" like you say. For example, yersinia can do that.

Anyway, again, welcome to the community I hope they get you figured out soon!

 

[Raine]

Thanks David. I suppose the capsule thing has been suggested to see if there's anymore in my small bowel I think.
Hope to find out soon one way or another whats going on.
BTW great to have found this site!

 

[Beach bum]

Hello and welcome, sorry you are having such a rough time.

I hope it does turn out to be a temporary ailment like a bug, but if it is crohns, don't worry it doesn't have to be the end of the world, there is no end of help , treatment and support out there.
I am so lucky to live in the Uk and never have to weigh up the cost of treatment or tests, but I would say if it is possible for you to get the test done sooner rather than later I would go for it, you cant put a price on health. Plus not knowing can only cause stress which is not good for anyone with our kind of troubles.

Good luck

 

[prplkow]

Hi Raine, Sorry you do not have any answers. I am also 45 and was just diagnosed with Crohn's two months ago. I do have it in the cecum and I understand that LRQ pain. My biopsies did come back positive, but the GI also ran blood tests for certain blood markers for Crohn's as well as the fecal tests. I just had the capsule endoscopy two weeks ago. The GI recommended the pillcam because he wanted to make sure the small intestines were not involved. If they were, then he was going to treat my Crohn's more aggressively with Budesonide since he said my Crohn's was relatively mild in the cecum. Currently I am only on Asacol, but have a follow up appt in two weeks to go over all my tests since my original dx. I hope you feel better soon.

 

[Raine]

Hi Thanks for the support. Interesting to read the link about stress. I have had a lot of stress with work plus trying my best to manage a teen with type 1 diabetes ( it so hard at times) and plus have just lived through 2 years of earthquakes. I live in christchurch, NZ.
One lady I work with has crohns and said it can trigger it. I see I am going to have to read about that in depth.
Still waiitng to hear from the gastro nurse to arrange the capsule endo. I think to get it over with and at least know if there's any ulcers there or not.
On thing I 've been wondering thou is. I have always had mouth ulcers since my teens, early twenties. I've read a bit about this. Its always when I get 'rundown'.
Thanks again.

 

[Naturelover]

Sorry to hear of what you're going through. I hope it all gets sorted out soon. I was dx with IBS after high school. I'm in my late fourties. I had never had and endoscopy until recently. Waiting for the biopsy results. I know how difficult it is to have to play the waiting game. Hang in there. Keep us updated.

Blessings, NL

 

[darga33]

Hi there Raine,

I just signed up right now so that I could reply to your post. I wanted to let you know what route I went when I found out that I had crohn's. Hopefully it will help you and anyone else that reads this too.

Some people don't like talking about God but this is very important so I am going to go against the norm here. Immediately I prayed and asked God what he wanted me to do, if there was a way that I could get better. When I got up from talking to God, I all of a sudden got the idea that I should fast and then after fasting switch to a vegetarian diet (not a junk food vegetarian diet like a lot of people eat when they become vegetarians - but a real - nutritious vegetarian diet - ofcourse not eating the hard to digest vegetarian foods like nuts and seeds.) It made sense to me because fasting gives our intestines rest (time to heal) because if you think about it, from the time we are born, we have never been without food in our intestines.

You can kind of look at it like this. Our intestines are highways and the food that passes through are cars. When the highway is damaged, the repair crew can repair the highway much easier when there aren't any cars passing through the highway. So I fasted for 3 days. I bought a huge 25lb bag of the Organic carrots (Publix for $15) and drank the juice throughout the day (started out slow - no more than 6-8 oz 3 times a day. And the first day that you do it, you should only take 2 oz the 1st time, 4 the 2nd and 3rd time to give your body some time to adjust to the pure carrot juice. If you are not used to drinking natural juices. By the way, when you go to the bathroom, it will be orange because of the beta carotien in the carrots. It is also extremely important that you get Organic (even though it is more expensive.)

Believe it or not at the end of my 3 days, all the blood in my stool was gone and my intestinal pain was gone too. Depending on your condition, you might need to go an additional 1 or 2 days It was enough time to heal up the inside of the intestine wherever it was bleeding. After doing the fast, and switching to a vegetarian diet all my pain was gone and it has not returned (4 yrs ago!!). I was told by the doctor that having crohn's is very serious and that I must take medication for the rest of my life. To this day, I have still not taken medication.

Before you do what I did, if you choose to go that route, the absolute first thing we must do even if it is the first time we ever do it is talk to our creator. Tell him our problems, and our struggles, and all about our life (even though he already knows our life), but it is like talking to a friend, he is our best friend. And he will comfort you with his angels. Thankfully, we are only here temporarily!

There is one thing you can probably do immediately that will help alieviate your intestines, (as long as you are not diabetic), and that is take 2 bananas and some refridgerated water and blend it up in a blender really good - if it is not cold enough, add a couple ice cubes.

Instead of fasting 3 days with just liquids, just do a fast by having that 3 times per day – (the bananas will litterally become liquid). Keep it in your mouth for a few seconds, so you can enjoy it, and your saliva can begin the digestion process. Have it for breakfast, lunch and dinner. You will be surprised how good you will feel after. But absolutely make sure that you get EXTREMELY ripe bananas. The bananas must have spots. The reason why is because they will already be partially predigested for you. I wish you the absolute best!

 

[Raine]

Thanks for your posts.
Just an update............found out the pillcam is so expensive and I am not able to use health insurance for this, so will have to wait on public. I have so many questions that am waiting for the GI specialist to phone me.
Feeling better past few days, no pain.