2 and a half years of pain and still don't know???

[Clare]

Hello, thank you for registering me on this forum, I am in some need for advice?
I have been suffering from alot of pain for the past 2 and a half years, when I first went to my doctor he was determined it must be crohn's, then after all the tests and biopsies he concluded I had severe ibs, what a relief! However none of my symptoms have gone away and no treatment seems to work. I have constant d, and daily crippling pain. I take alot of codiene for the pain and d, but still it doesn't always touch it or stop it. so, after this 2 and a half years, I recently went back to my doctor and he said well, the only results we have had is from the biopsies of a colonscopy which showed lympocites. At the time he thought they were no very significant despite the biopsy report recommending another colonoscopy. So he prescribed entocort which I took 3 for 2 weeks daily then 2 for 2 weeks daily then 1 and now I'm off them. they helped with the d, but not with the pain. So, now my doctor is rather fed up with me and says he doesn't know what I have, whether it is crohns or not and that he may not be able to find a solution for me. So, now I am really confused and distressed. what a rollercoaster of emotions, at first yes I must have crohn's then no i don't then yes I do and then no I don't. Also, why do doctors love the phrase, "we don 't have a magic pill!", well of course they don't, if they did they should have given it me a long time ago. In any case, its the pain that I can't stand, I can handle the d, thats just inconvenient. The pain is just intolerable alot of the time, I take a lot of painkillers, sometimes 6 or 8 x 30/500 codeine and paracetamal daily and sometimes even that doesn't touch the pain. My doctor's latest suggestion was that I take some antibiotics which I said I was hesitant to do because they make me feel like death, I have had a gum infection for around 2 years which at first I took 6 courses of antibiotics for and it didn't go away, I decided not to do anymore because it made me so ill, now its a dead tooth, my point is that that is how hesitant I am to take them. I also only have a boarder line bacteria overgrowth and it seems unlikely to me that a overgrowth would be causing this pain for such a long time? I am loosing weight again now and having to take time off work frequently. The other day the cramping was so bad that I couldn't even stand up and again my painkillers didn't work. I am 34 years old and single and have now way of getting out into the world the way I should be. I can't allow my doctor to give up on me and I won't live the rest of my life like this, but I don't know what to do?? Does it sounds like I do have crohn's or just severe ibs? Its doesn't make sense to me that it is just ibs, I also get fevers when I its really bad and can sometimes sleep up to 16hours in one day. I need my life back?? Any advise would so incredibly welcome?
Many thanks!

 

[Rossy]

Hi Clare, many people go undiagnosed for years. If the docs are not 100% sure then they will not be able to give you a definitive diagnosis.
Are you still to have a second colonoscopy and is it in the large colon that you have pain? Do you lose blood? Have they ever checked the small intestine and have you had an endoscopy, tube down the throat!
These are just some thoughts.
Personally i would'nt have thought losing weight, fevers and constant D would be due to IBS, more like IBD.

 

[StarGirrrrl]

You didn't say if it was a GP or GI that you've been seeing, if it's a GP then ask for a GI referral and if it is a GI then see another one, you are fully entitled to a second opinoin and you need someone who will help you.

Always remeber that the docs have the degree and experience but you are the patient who is having the symptoms and knows when something is wrong, it's a case of making them listen and understand this when they are not being helpful.

I too was told (with minimum testing) in 2007 that I had severe IBS. Since I got worse from Sep '09 it's now been confirmed as IBD all along, just waiting to find out which type. The fatigue and pain you describe seems not to fit with IBS.

 

[Astra]

Hi Clare
and welcome

This isn't IBS, IBS is a functional disorder and wouldn't have you in agony like this! Oh, and you don't lose weight with IBS or have fevers.
Ok, so the Entocort didn't work, has your doc mentioned Prednisolone. Pred would defo get the inflammation under control. This is 'the magic pill'
Are you still on anti biotics? Some of these can strip the lining from your guts, exacerbating any inflammation already present.
Time to go back to the doc, get a referral to see a gastro and get a scope. You need to be persistant and insistant and get them to listen to you.
Document everything, symptoms, dates, diets etc
I wish you luck, I was dx for 15 years with IBS, which stands for 'It's Bull Shit'!!
lotsa luv
Joan xxx

 

[Clare]

Hi, thank you for your replies!
I don't know if its in my small or large intestine, how can you tell??
I have had 2 years of tests with my gastro doc including colonoscopy, gastroendoscopy, i swallowed a camera capsule, ultrasounds, barium meal (which took just 20mins, I was told the average is 4hours! the technician was laughing, early lunch for him!), bile malabsorbtion, tested for parasites (blastostcysistis especially), lots of blood tests, I haven't had anymore tests for the last 6months at least. I have tried the fodmap diet for a solid 3months, cbt, acupuncture, chinese medicine, homeopothy, hypnotism (which is actually great but not enough to shut out the pain, though I would recommend to anyone here who suffers from stress, who doesn't?), I have also tried serepeptase (a digestive enzyme that is supposed to dissolve scar tissue, but that made be bleed), I also take amitriptyline (for the pain at night and that does mostly help me sleep through to the morning, but I still wake in pain). My gastro doc is referring me to a senior colleague of his, but I think thats mostly because he wants me off his books. The only positive results I have ever had were for lymphocites from the colonoscopy, that was 2 years ago. My gastro doc said in december that I would need to have another, but then the other day he didn't mention it, only that he might not be able to help me?? I think he was having a bad day, though might not book a late afternoon app with him again. I thought that we had gotten to a good level in our relationship and he knew I would be willing to do anything to solve this.

 

[Clare]

yes, my gastro doc has mentioned prednisolone, but also that he was no that happy to prescribe it without another colonoscopy, I have also heard it is a very strong drug with alot of bad side effects?

 

[Rossy]

Clare, they are obviously still assessing you and if i were you i would see it as positive that a more a senior GI will be handling your case.
The pain or where its coming from is of course a useful indicator as to what organ or location is inflamed, ie is it tender to touch your lower right abdomen, the area above your belly button, is your rectum sore etc. Blood tests by the way are notoriously unreliabe, they don't always show what is going on.
Get an another colonoscope and continue to press for answers.

 

[carrollco]

I was 32 when all this started. They ran a barium enema and a bunch of other stuff, but never checked the small intestine. For years I had clay stools and pain.

Irritable bowel was diagnosed.

Then after a rough bout they took out my gall bladder. I still had yellow diarrhea and pain, and they said it was bile related diarrhea so they put me on this powder stuff. After my triglycerides went to 1200 they took me off the powder stuff. Then I turned 50 and it was time for a colonoscopy. Everything was fine except for some polyps which they took out and the biopsy came back fine.

Soon the pain and the diarrhea just made me nuts. I hated getting up in the morning and suffered from vomiting and anxiety. I was so freakin sick. So, they scheduled another colonoscopy.

The ulcers extended all through my colon into my small intestine and after tons of blood work and biopsys it came back as Crohns.

Sometimes it takes years to diagnose especially if you have a colonoscopy during a non flare. Part of the problem was mine because I didn't push harder. I'm just not a 'pusher' and that made my health worse. So hang in there and keep pushing them toward a solution. Although I have to say, what does a diagnosis do? You might feel a little better knowing you're not nuts, but the treatment is the same.

You are in my thoughts and prayers.

 

[lorraine]

I disagree that, "the treatment is the same" without a diagnosis. I've had an inaccurate IBS dx for almost 3 years. In that time, I've only been treated with fiber, probiotics, hyoscyamine, and a low dose of antidepressants. Not exactly in line with IBD treatment.

 

[Clare]

I could ask to be put on prednisolone? Do you all find it really helps? The matter of diagnosis, my hope is that when I do finally get one that we can stick to, then I will get some good medication that actually deals with the problem??

 

[carrollco]

Lorraine: I spoke without thinking. You are correct. My apologies. The treatment is not the same as my life is a testament to that.

 

[Twinkle]

Hi Clare,

Sorry to hear you're having a rough time. Keep on at the doctors - you clearly do not have IBS!

With regards to your question about prednisolone, I'm sure everyone could offer a different opinon on that! For me, pred is simultaneously an angel and a devil. It worked really quickly on reducong my symptoms and bought the crohns under control (the differencw between my first colonoscopy before diagnosis and my second after 3 months on pred was unbeleivable - the stricture pretty much disappeared). Unfortunately though, it can have some pretty nasty side effects, and is by no means a long term solution. I suffered from depression and confusion, lack of concentration and short term memory loss on my first few weeks of pred (my family used to tease that I was going senile!) but these symptoms all passed once my body got used to the drug. I also put on a lot of weight whilst on pred, and my face because extremely pale and bloated - although I think these are a small price to pay in return for the releif you get, and after a month off the pred I'd managed to lose a bit of the excess weight and my face regained it's usual shape/colour, so they're only temporary! The other bad experience I had with pred is that it doesn't just mask your crohns symptoms. I ended up with a 5cm abscess but absolutely no symptoms because the pred was carrying me through. I'm now back in hospital with another possible abscess, and this time I'm not on the pred and DEFINITELY feeling those symptoms! ANywas, I thought it might help you to make a more informed decision if you knew about my experiences with pred - although everyone is different!

If I were you I would ask the dr for the colonoscopy first and foremost. If you decide to try pred and your doctor thinks it's the right step to take, insist that it should only be a short-term measure and that you need to look into more long-term alternatives.

Hope you find a solution soon!

 

[David in Seattle]

Clare - I'm sorry you're having so much difficulty. Your symptoms do sound more like IBD than IBS to me. As others have said, it is not unusual to go years before getting a firm diagnosis, and with many physicians you really do need to be an informed patient and PUSH to get any kind of results. With regard to your use of pain relievers, I would caution you about the amount of paracetamol/acetaminophen you seem to be consuming. This drug can be quite hard on the liver, and is probably only providing you minimal relief, given your level of discomfort. As a result of this toxicity, in the US, the FDA recently came out with new guidelines concerning the amount of acetaminophen narcotic pain medication should contain, suggesting an absolute maximum daily dose of 4,000 mg. Here's a link to the FDA site describing the issue http://www.fda.gov/Drugs/DrugSafety/ucm239821.htm To be clear, the issue here is the paracetamol, not the codeine. There are other options, such as codeine alone, or drugs like Tramadol, which do not contain paracetamol. I'm not that familiar with the British pharmacopoeia, but you may also be able to get oxycodone/oxymorphone, hydrocodone/hydromorphone, etc. w/o the paracetamol, and you may find these provide superior pain relief as well. I would urge you to discuss this with your doctor.

Good luck & welcome to the forum!

 

[Clare]

Hi, thank you all for your very nice advice. It is truly relieving, and I am in awe of how cooly you all deal with this disgusting disease!? I have asked my gp if there was another drug I could use for my pain, I didn't really want anything heavier but more something more effective, he said there wasn't much else but to offer morphine! I thought no, that is just going too far. I will ask him about the drugs you mentioned David from Seattle! And yes, my Mum keeps going on about the amount of paracetamol I am taking.
In regard to the other medication, Twinkle, thank you! the effects of pred are certainly something I wish to avoid. The entocort caused enough issues, mild in comparison but my fingure tips went numb and tingly and one day the middle section of one of my fingures went completely blue, like a dark denim blue. I also have quite bad lower back pain now. I have essential tremor to start with and the entocort made my tremor much much worse. I can deal with these but things you are talking about are totally outside of my expectations - I know I may be delusional here?!? Has anyone tried Boswelia? My mother keeps harking on about how boswelie (a herb) helps alot of people with crohn's? Has anyone tried it? I was also thinking I might ask my gastro doc if perhaps I should try a longer course of entocort, maybe 2 weeks on 3 pills a day was not enough? what do you think?