My story, just to share!

Hi everyone,
I've been reading people's comments on here for a whole but this is my first post. I haven't been diagnosed with ibd but I think that is the gi drs preliminary idea. I suppose I'm on her to share my symptoms and see what you hunk, and partly just to share my frustration and worry!!

I have been having the symptoms over the past year and a half, they come and go but have been getting progressively worse.

My main problem is stomach pain and vomiting. Last week i vomited every day, but it has subsided this week thankfully. The pain happens every day and will come in waves, i am guaranteed to have pain when i get up in the morning and at least 10 times a day the pain is so bad that I need to stop and sit. It usually passes after 5 minutes or even less. I would have been someone who would have had diarrhoea quite a lot but now I find I am constipated more (which I much prefer!!). Ultrasound and barium swallow showed hint of inflammation in small intestine, and ruled out gallbladder cause. Blood tests have consistently evidenced inflammation and I have deficiencies in b12 and folate.

The symptoms that make me question whether it is ibd is the fact that I find the pain is aggravated by walking, especially up stairs. I find I need to sit down and let the pain pass, if I don't stop I will vomit and my bowel will sometimes go into spasm, leading to a bm. sometimes when I stop i be sick anyway. I have had my heart checked and it is not related to it.

At this stage I'm just so frustrated, I had been quite good at hiding it but it is getting in the way of my work now. My wedding is this summer and I don't want to pause going up the aisle to throw up!!

I have the pill cam capsule endoscopy this Tuesday and was drawn back to this site for advice on how to prepare for it all, thanks so much to everyone who shares on here! Its a wealth of knowledge! I sympathise wih those people who have to pay for treatment, luckily I have the nhs and although they are slow and over burdened, I couldn't imagine adding the stress of financial strain to an illness like this!

Wow that was a longer post than I had intended, sorry!!

Mia x

Oops that makes me sound like the cookie monster!! Not sure y that happened hehee!!

No worries I have edited them out for you.

Sorry to hear you've been having problems and hope the Pill Cam leads somewhere. You are lucky to be getting one on the NHS, they are very expensive and restricted in many areas- sadly my PCT is one of them that won't fund it easily!

Good luck!

I also had an increase in pain when walking, and I have a dx of Crohn's. I think it is because of the stomach muscles moving and aggravating the intestines.

Good luck with the pill cam, may it bring you some answers!

Hi and sorry to hear of all your problems, when you are walking where are you feeling the pain? When I was bad I used to get pain in my right lower quadrant right hip bone and occasionally right thigh I would also feel pain in my belly when going over bumps in the road. Does your tummy feel hard? Did you have your inflammatory markers checked yet? Good luck with the pc and congratulations for your wedding I hope you cam get sorted soon as the added stress of the wedding etc can flare your symptoms.

Thanks!

Thanks everyone!!

Stargirrrl thanks for editing out the cookies!

Archie and Rebecca it's nice to hear that the connection to moving is something other people are experiencing. The pain is unspecific and seems to span across upper abdomen, but at other times the pain is on right upper abdomen, to the right above my belly button, below my ribs and sometimes round to my back.

I'm really looking forward to the results of my pill cam, I will keep everyone updated
X

Oh yes, thanks for reminding me Archie, I also used to get pain going over bumps. There was one road in particular near my house, I learned to hold on to my tummy to steady it as we went over a certain bump, otherwise it was excruciating!

it's the wee things like that that sometimes you don't make a connection with but I live in the town which is full of 'lazy policemen' (speed bumps!!) and they used to always hurt but now im fine i don't feel a thing!!! Mia my pain originated in the upper abdomen and with endoscope it showed duodenitis and thickening of the duodenum wall and a hiatus hernia the pain then migrated to my belly button and right lower abdomen with the crohns. I've since had surgery to remove the damaged bowel but I still would suffer duodenitis from time to time. Pain from a hiatus hernia can refer round to the back, however when my crohns was very severe I got awful pain in between the shoulder blades. Has you gall bladder been checked as it's on the right upper abdomen?

Yes Archie, I think gallbladder was their first port of call considering the site of the pain but it is apparently all clear! I noticed in another thread u mentioned u were in ni, me too! Any tips on good drs in the west?
I'm currently in the middle of my pill cam so hopefully I'll not have to wait too long for results. If anyone's interested in how the capsule endoscopy equipment looks I can post a photo, I cant imagine being able to go to work wearing it!

Hi Mia another one from down the road!!! sorry I don't know anyone in the west but I do know some good ones in belfast, ru nhs or private? Theres a few on here from NI so someone might be able to help out, good luck with the pillcam I never had one of those.

Mia Eire said:

Oops that makes me sound like the cookie monster!! Not sure y that happened hehee!!

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I wanted to welcome you and say "nom, nom nom, nom, cookies!"

If I have a spell where I vomit, I also have a BM eventually toward the end of the spell. Ever climb a ladder and clear all the wet leaves from a gutter that's full of water? Yuk. Well, anyway, it's like that for me sometimes too. :hug:

Congrats on your upcoming wedding! Don't worry, it'll be great!

SOOOOO!
its been 2.5 weeks since i posted to say I was in the middle of the capsule endoscopy (pillcam) and A LOT has happened since!

the night of the capsule endoscopy i began to experience the worst pain i have experienced in my life, severe abdominal pain and uncontrollable vomiting. I went to a&e and was faced with blank stares from most of the staff when i described the capsule endoscopy (they kept assuming I was getting it wrong and it had been a normal endoscopy, duH! as if i'd not remember swallowing a camera!) they believed me when they did the xray. i then sat in hospital for 9 days not eating much, getting daily xrays and a ct scan to see if the capsule had moved. apparently it liked my terminal ileum! i was started on steriods (prednisolone), antibiotics, pentasa and all of the associated supplements (calcichew, folic acid, omeprazole).
finally the surgeon and gi doctor spoke and once they looked at past ultrasounds, ct scan, capsule endoscopy footage and barium swallow they decided i had a narrowing of my small intestine approx 30 cm. I had surgery to remove 30 cm small intestine, including terminal ileum, Ileocecal valve, appendix and part of colon over a week ago.

interestingly, the night before the operation i was asked to drink these 100% carb supplements apparently everyone gets to help their body have energy following surgery. these completely ran through me and the pain for the night i attended a& e resturned. they had stopped monitoring my 'output' as they didnt think the capsule was moving, but it turned out i passed the capsule some time in the morning before the surgery.. the surgeon laughed the next day and said he had a sleepless night waiting for the xray results cos he couldnt find the capsule when he went in there. he thought it had went exploring somewhere outside my bowel!! they even brought in an xray machine into the operating room but as it is less sensitive than the other xray machine they couldnt be sure.

i cant believe how much has happened in the past 2 weeks, i finally have a diagnosis (crohns) and explanation for why i have been in so much pain for the past year (narrowing). apparently my intestines were stuck together a lot and the part they removed was very scarred, it also had signs of a perforation at some stage so i am now looking forward to asking the surgeon at the 4 wk review whether the perforation looked recent or old.

I am a week post surgery, still sore and tired and am now trying to adjust to life without my Ileocecal valve. i have been to the bathroom 5 times a day since my bowels started working again and it is all liquid! they still have recommended a low residue diet until things firm up. im hoping they are right that it'll settle itself. im still on prednisolone but am reducing it, and I am on pentasa now.

so theres my story. i can now move it out of undiagnosed!...

Hiya again and wow what a story hope your feeling a bit better now, that's the exact same surgery I had for the exact same reasons of narrowing and perforation I even had (well supposed to have) the high cal drinks before hand. I was on a low res diet for 6 weeks and yes things did firm up a bit too much for my liking sometimes. I had my surgery in the royal where did u have yours?

I am convinced these pill cam things are dangerous! why would any doc believe, when crohns exists, that they will just by pass the stricture?!! bizarre! Welcome to the club, Mia. Hope you have a good recovery. was it keyhole? or are you posting from hospital bed. was in for two weeks each surgery (open).

Generally shortly before a Pill Cam is done they perform a Barium x-ray to check for any narrowing to prevent exactly that happening- given it was 30cm I think they would have picked it up and and possibly dx'ed you through that there and then.

Sounds like you were put through a whole lot of trauma unceccessarily!

Thanks everyone!

When I swallowed it the dr did say that there is a chance it could get stuck because of the vomiting I had been having. My barium X-ray was months ago but I'd imagine the narrowing would have been there then.. I suppose stargirrrl he thought that if it gets stuck they'd have to go in there and take out the narrowing anyway?!

Archie, I wonder the fact we had exact same proceedure means there's a 'dummies guide to narrowed bowel' in NI and surgeons just follow it and take out what it says lol my surgery was in the west.

Spooky i am at home now, got home 5 days after op! They cut a 2 inch incision at my bellybutton and then there are 2 keyhole incisions that are tiny. Very neat work, I'm sure there's somewhere on this forum to share photos of it!?!

Mia Eire said:

Thanks everyone!

When I swallowed it the dr did say that there is a chance it could get stuck because of the vomiting I had been having. My barium X-ray was months ago but I'd imagine the narrowing would have been there then.. I suppose stargirrrl he thought that if it gets stuck they'd have to go in there and take out the narrowing anyway?!

Archie, I wonder the fact we had exact same proceedure means there's a 'dummies guide to narrowed bowel' in NI and surgeons just follow it and take out what it says lol my surgery was in Altnagelvin.

Spooky i am at home now, got home 5 days after op! They cut a 2 inch incision at my bellybutton and then there are 2 keyhole incisions that are tiny. Very neat work, I'm sure there's somewhere on this forum to share photos of it!?!

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Well, I suppose as long as the risks and mentioned and discussed with you I suppose that is ok. But vomiting is a warning sign of a blockage so I am at a loss as to why they went ahead and did the Pill Cam without another Barium. Personally I would be making official complaints and asking for explanations. I've no idea what your Dr was thinking but I would be finding out that's for sure.

Surgery is a big deal and to me it seems like you were put through it uneccessarily. I've no idea if the narrowing was on your previous scan, but as the Pill Cam was a planned procedure there is no reason why you were not asked to do another Barium so they could be sure it wouldn't get stuck- especially with the warning sign of vomiting. "months ago" doesn't sound recent or good enough to me!

Stargirrrl, if there's a narrowing is there any alternative to surgery? The way the drs explained it to me was that it was the only option. They discussed a balloon procedure but thought it wouldn't work as the narrowed section was too long.

I do wonder why all of this took so long, looking back my life was so restricted. I must have a look again at how long ago that barium was, and why they didn't see the narrowing there. I'm sure the answers I want won't be forthcoming! The gi said my next appointment with him won't be for several months, the next person I'm due to see is the surgeon at a 4wk follow up appointment.

Mia Eire said:

Stargirrrl, if there's a narrowing is there any alternative to surgery? The way the drs explained it to me was that it was the only option. They discussed a balloon procedure but thought it wouldn't work as the narrowed section was too long.

I do wonder why all of this took so long, looking back my life was so restricted. I must have a look again at how long ago that barium was, and why they didn't see the narrowing there. I'm sure the answers I want won't be forthcoming! The gi said my next appointment with him won't be for several months, the next person I'm due to see is the surgeon at a 4wk follow up appointment.

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In the meantime while you are waiting to see Surgeon or GI you can contact the Complaints Department at your Hospital with your concerns and issues.

I'm not a Dr but I do believe narrowing can only be fixed by surgery. But they gave you the Pill Cam without doing another barium to check that it wouldn't get caught- and as you said you had vomiting which is a warning sign- and the Dr seemed to think it acceptable taking the risk as he warned you it might get stuck- which I don't find good enough, but of course it is your feelings that matter.

I suppose the question is did you have to have the Pill Cam, when from your words they looked at all of you other tests as well as the Pill Cam to decide you had a narrowing, and was enough done for you before you had it.

Of course the upside is the Pill Cam getting stuck is that you got your diagnosis. But could that have been reached without all the pain you went through with the test, 9 day Hospital stay etc.

If it was me (which of course it isn't!) I would be asking for an entire review of what happened because it seems to me mistakes were made, and as a result you had to go through an awful lot for a resolution. Maybe if they had given you a Barium before Pill Cam (normal procedure and you had vomiting which is a warning sign) the narrowing would have been found, no Pill CaM needed, and you'd have had surgery and be on the road to recovery- basically you may have gotten there quicker and with less pain and stress!

And also I find it odd that they didn't give you a proper x-ray just before your op, so they could be sure of the position of the Pill Cam or to check it hadn't come out- I know you said they tried a portable machine during surgery but that obviously wasn't good enough to satisfy them if the Surgeon had a sleepless night despite using the portable. I know too they'd have had to give you surgery anyway because of the narrowing- but it's things like this that may me think they have not treated you all that well! If you feel satisfied then of course that is what matters and you can tell me to buzz off