luq pain. backache , malobsorbtion. IBS
Posted , 12 users are following.
Hi all. So ive been trawling the internet looking for answers to my worrying symptoms.. only to find I'm now worrying even more.
In Sept I attended my GP practice about a long standing issue..
I bleed a lot from the anus. This in itself isn't to worrying but an ache in my back luq which has always annoyed me when driving long distances was starting to become more uncomfortable when driving and I had also been having very loose stools for over two months. .
I had also developed a stabbing sensation some times bulging like under my left rib cage. Draw a line down from my left nipple and stop just before the bottom rib and the pain was just there.
My doc referred me to a gast specialist.
I had good blood test which looked for all sorts of disorders and came back good. I then had poo samples analyst and all came back good.
Then came camera from both directions. . Some mild redness in gut. . Gastris and some biopsys taken. All back clear.
Treated with buscapan and ppi. .
No change.
Returned to consultant. By this time I'm Very depressed. Told doc I was worried that I have a serious problem with pancreas as Google suggested and she agreed to an mri. She said only for my peace of mind as she's convinced its ibs. ,
Pancreas mri shows nothing remarkable.
So I'm still struggling. All pains still there.my back between shoulder is agony.I don't digest my food well fluctuating between flat poo and lose watery poo and I'm still worried. Sehcat scan next. Could this be the notorious IBS? Comments welcome.
3 likes, 62 replies
looloo43 busabasher
Posted
Like Gem, I too have been following your progress. I have colitis (not active at present my consultant says) & she thinks my main problem at the moment is either chronic IBS, fructose malabsorption or bile acid malabsorption which I am waitng to have tests for. (one of the tests being a sehcat scan like you, so will keep an eye out for your results). I have had to eliminate almost all fruit & veg as they come out of me looking the same as they went in (undigested) which worries me health & diet wise. I have asked why but am not really given any real answers or solution. Everything happens for a reason! I just wondered when you mention your faecal elastase test showing insufficient pancreatic enzymes, did you have this problem with fruit & veg not digesting/causing diarhhea? I can totally understand your relief at now knowing what is wrong as you can move forward with treatment/resolve symptoms. It is so frustrating with the time it takes, tests, getting explanations/answers.
Gem1384 looloo43
Posted
In regards to your undigested vegtables, that is exactly the same as me! Peas, carrots and sweetcorn are my main offenders! I have to admit I eat fast (I have 3 kids!) and sometimes I might not chew very well. I have also read that's its quite normal to see sweetcorn but I'm not sure about the other two (sorry too much info).
I started myself on digestive enzymes (very low dose in comparison to the prescribed ones) seen no progress yet! I have also started to take symprove (saw it on the IBS forums) to see if that will help my guts. I started a week ago and still no improvements yet.
I have been test for malabsorption and my fecal elastase test was normal!
I hope we can start getting some answers soon!
All the best!
Gem
busabasher looloo43
Posted
Things like peppers, mushrooms, Sun dried tomatoes and raw veg I struggle to digest. Have to steam them so they are soft but then I'm still not sure if my body has absorbed all the good stuff.
Any fruit with skins is a joke.
Will hopefully get some help with my diet.
Good luck.
busabasher
Posted
Wife rang me at work to say I had another letter from consultant.
Turns out it's a carbon copy of the other but this one has a prescription for pancreatic enzyme supplements. I think the consultant should have sent that out with the previous letter.
Sadly wife can't find a pharmacy who stocks them. Just my luck. Once I finally get them I'll let you know how the effect the symptoms.
2nd sehcat scan on Monday next week. And will get bloods done then as well hopefully.
I sense an end to the chapter is coming.
Hopefully there's no more surprises and only progress ahead. We'll see.
looloo43 busabasher
Posted
I have had trouble before getting certain meds from chemists; I found in the end larger boots pharmacies were very helpful, they got on the computer, found the drug & who makes it, made phone call, then ordered it for me, so you could ask the pharmacist of a larger boots branch if you continue to have trouble getting hold of your prescription. Also my sehcat scan appointment letter says something about asking the nuclear medicine department before you have any blood tests done as the mild radioactivity you are subjected to during sehcat visits can affect blood test results. Glad you are getting somewhere, and I will look out for your sehcat results with interest. I have asked my consultant if a faecal elastase test(you mentioned before) might be useful for me to have done too relating to my incomplete digestion of most veg & fruit. Thanks for previous info & good luck with your progress.
busabasher
Posted
The pain on the other hand is getting worse. .
Don't know if it's anything to do with the enzyme replacement drugs or the qty I'm taking but back pain is more focused in upper middle area. I now have regular stabbing pains in middle of belly just above naval. And in the usual place ULQ under ribs. The pain seems to be pulsing some times. It's a constant 6 but I have moments of quiet severe pain when I'm stopped in my tracks. Had a bad day today lots of driving and feel nauseous and in plenty of back pain.
I'm still taking the amitriptyline. Not touching pain but do help me get to sleep.
I have an appointment with a gastrointestinal dietition next Thursday evening. Should have had all the results back from the blood and sehcat scan by then as well.
Cheers all.
Gem1384 busabasher
Posted
Firstly great news the enzymes are working! Not so good that the pain is up!
Through my reading on the Internet, I did read that the enzymes can cause pain. Something with having to get the dosing right so the pancreas doesn't have to do any work. Might be you need the dose increasing slightly. Or it could be related to something different? Stomach maybe? Or your body might need to get used to working correctly again.
But I can sympathise with the pain, it's not nice
I hope they manage to help you sort it out.
Good luck for next Tuesday
Take care
Gem
busabasher Gem1384
Posted
Thanks for the post.
I've upped the pills when I eat. Looks like you might have been right about the levels. Although the pain is still there it's reduced somewhat when I increase the levels of creon. I have the types.10000 25000 and 40000.
The 10k if been using for breakfast and light snacks but it seems they might be a little weak. So I'm using 25k as a base case and supplementing them with a 10k for lunch. The 40k is good for most big meals unless I push my luck and indulge in a big meal and dessert. Do I've concluded ill lower my food amounts and try and have little meals and occasionally treat myself to a desert. Had a good day today. Went for a walk in the hills and for an hour or two completely forgot about the pain.
Havnt done that in a while.....
looloo43 busabasher
Posted
Good to hear you got your creon - presume thats your enzyme supplements. Did you try a bigger boots branch in the end? Positive your bm's are changing for the better, not so good you are in more pain. Maybe it'll be a bit of trial & error with dosage of the enzymes to balance away the pain, but still improve & maintain bm's. Had part 1 of my sehcat scan today, & my consultant has agreed to my request for a faecal elastase test, so thanks again for the info in your previous posts. I've been on the amitryptiline for almost 2mths, only last couple of weeks on 30mg & it is now helping a bit with the sharp pain around the sides of my colon area, but not eliminating it. I still get almost constant tummy ache & bloating, some low/mid back pain, some LUQ pain especially after eating, dreadful rectal pain & soreness not helped by an anal fissure caused by symptoms of bm frequency/urgency/spasm. Along with daily diarrhea & feeling generally knackered all the time, I'm grateful that the amitryptilline does help me sleep uninterrupted by pain fidgeting. I got told you have to give it at least a couple of months at the right dose level to help with pain, & sometimes it can slow down gut motility too; that would be great! Don't you get so fed up with the sequence of a better day, then bad days on end, then a better day followed by more bad days? In a strange way, I hope the sehcat or faecal elastase or fructose malabsorption tests show something functionally wrong,as at least there will be a more defined treatment path to bring symptoms under control. Will keep an eye out for your results/progress. good luck
busabasher looloo43
Posted
Yeah it was actually a bigger boots that got them for me. Had to pay the full amount for then as I had a private prescription. Called my GP and she said she could do me a NHS prescription next time.that will save me about £110.
I hope you get result from the docs after your test. Have faith in the docs. It's so frustrating some times when they keep drawing blanks. But each time they do that they tick another problem off the list and work you another step closer to a diagnosis.
Although there's still a way to go getting to the bottom of mine they have cleared so many other things off the list.
I will say thought I took two amatrypoline last night. Wow woke up a bit of a zombie. Won't be doing that if I need to get up in the morning.
Take care. Let me know how you get on.
looloo43 busabasher
Posted
Can you tell me were you instructed to do your faecal elastase sample at a particular time of day, ie; 1st bm of the day, or didnt it matter? I have been sent the form by my consultant & have the sample container, but just wondered if it mattered when you do the sample.
I understand what you say about doc's eliminating things as they test you/try meds etc, but it all takes sooooo long, I am fed up being off work, & worried about the future of my job. There is just nothing I can do to speed things up to a conclusion or a sustained period of relief of symptoms.
With the amitryptilline, I gradually got to 30mg by starting off at 5mg(split a 10mg with a pill splitter you can buy from vets or boots) & increasing each week to10mg, then 15, then 20, then 25, to 30mg which is the dose my consultant wanted to get me upto. It did make me feel like a zombie for 1st 3wks, but wore off as my gp said it would, so stick with it if you can; the next day fog does go.
Look forward to hearing about the results of your tests when you see the gastro dietician soon & if you can answer my query about when to do the faecal elastase. take care.
busabasher looloo43
Posted
There was no stipulation about time only that I returned it for processing the same day.
Struggling to give a toss in work after two pills lol. But will keep on taking the pills as they say.
Good luck with test.
busabasher
Posted
bloods for ca19-9 negative.
IGg4 levels normal
So that's ruled out autoimmune pancreatitis.
Sehcat scan positive for bile salt malabsorption.
This is being treated with binding granules which name escapes me for the moment as I've left prescription with chemist.
So looks like I have come to the end of the road with tests for the moment.
My consultant says I'll now be on these drugs for the rest of my life which I've been assured won't be shortened by these issues.
I'm told due to my age I'm unlucky to have these two symptoms and would be really unlucky to have something else other than these causing the pain.
So it's severe pancreatic insufficiency and bile salt malabsorption.
No known reason but that's that.
The pain is still there and sometimes worse than ever. The consultant says the enzymes and bile salt granules should help release the pain eventually once I have the balance sorted.
So I will give it a few months and see how the pain is before taking on the pain issue.
Ultimately this is the end of the road unless I develop other symptoms.
I'll keep an eye on this forum and update it when ever anything significant is worth mentioning.
So thanks everybody for your very helpful comments and concerns. I really have found this forum a source of comfort knowing there's people out there going through similar problems. And the fact you've taken the time to help me get through this difficult and confusing time is very humbling.
I wish all my friends on here a speedy diagnosis and a rapid return to full health or as damn close to full as possible.
Stay positive and good luck to you all.
Dean
Gem1384 busabasher
Posted
That's great that your finally getting sorted!
Hopefully once you get the balances right of the medication you will start feeling a bit more back to normal.
Keep your eye on the forums, if I get any questions I'll be heading them your way! Lol!
I hope you can carry on enjoying life now you know what's wrong with you.
Thank you for sharing your experience, results and knowledge with me.
All the best for the future
Take care,
Gem
busabasher
Posted
Just thought I'd update.
So been on creon now for nearly a month. And cholestyramine for a couple of weeks.
My bowel movements have changed a lot. In texture and frequency. And dare I say it normal looking. Still a chemical smell but much better. I can tell when I get the doses wrong.
The pain though hasn't improved.worse actually.
Middle and left upper quadrant front and back. Starting to feel it deeper and much longer periods.
Stopped taking the anti depressants. Made me too drowsy and don't touch the pain at all.
I have a meeting with consultant to review the big picture and talk about the pain in a couple of weeks.
Started to exercise a lot more as I have much more energy and enthusiasm.
Lost a bit of weight and feeling better for it. Not liking bining my old clothes lol. But a lot of exercise makes the pain worse particularly upper middle. Need to keep straining to a minimum so cycling seems to be the way.
Take care guys.