Crohn's Disease Forum » Support Forum » Undiagnosed Club » First post - just looking for advice


04-07-2018, 12:14 PM   #1
Bewse25
 
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First post - just looking for advice

Hi all! My name's Ben, I'm from the UK and I'm as yet undiagnosed - but firmly fed up with my current situation.

It's a long(ish) and sort of boring story but here goes:

Just over a year ago I began a summer job on a farm, in between university terms. About a month in, approx. The 3rd of July, I came down with what I thought was stomach flu - pretty severe diarrhoea upto 7 ish times a day. After a week of this I went to the docs, to be told that it was probably just a bad bug and to wait a bit longer. 2 weeks passed, and then a month, and then 2 months.. etc. During this period I went back to the docs multiple times only to be told to treat it with loperamide (immodium).

I have now had diarrhoea between 4 and 8 times a day, 7 days a week, non-stop for over 9 months. Occasionally I have mild, dull pain in my lower abdomen, depending on what I eat. I also experience moderate pain in the lower left quarter if I move any faster than walking pace, like a bad stitch (this may be a British term).

I had a colonoscopy in December which showed mild inflammation on the right side of my colon and around my terminal ileum. They took 6 samples, 1 from the very end of my small intestine, none of which showed 'any signs of Crohn's', whatever that means?! They did show lymphoid hyperplasia - but I was told this isn't something that usually gets followed up.

I have had a small bowel MRI scan as well as an abdominal CT scan, neither of which showed anything of interest.

Not long ago I had a capsule endoscopy and was told to wait 4 weeks for the results. After 2 weeks I received a letter stating that the pill didn't leave my stomach for the entire 8 hour recording period, hence no pictures of my small intestine were taken. Has anyone else experienced this??

I'm at the end of my tether. At the beginning of last year I was a happy, healthy 22 year old who enjoyed hiking and mountaineering, with plans to travel the world with my Mrs and to make a wonderful life together. 9 months of diarrhoea later and I'm a miserable shell of a human, standing 6 foot 5 inches tall and weighing a monstrous 69kg. I can't go anywhere that doesn't have a toilet, nor do I have the energy to do so.

I have cut back to gluten free everything, no wholegrain, low fibre, no legumes, almost no red meat, very limited onions etc. And also drink 'goats kefir' (probiotic). If I'm EXTREMELY careful I can limit myself to 4 watery bathroom visits/ day. If I try and eat a varied diet - forget it, 6 times/ day minimum, very watery.

The doctors are STUMPED. They seem to have a flat out refusal to try me on any sort of medication and seem to have no issue with making me wait months at a time for an appointment. I've had a thousand blood tests and fecal calprotectin, none of which have showed anything at all.

Apologies for the massive post - it's been quite a journey from my perspective so far - and I guess I'm hoping that someone could share their perspective on my situation. At the very least; it feels good to finally lay it all out and clear my mind!

Ben
04-07-2018, 12:23 PM   #2
ronroush7
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Hi,Ben. I am truly sorry for everything you have gone through. Can you seek out a second opinion? I think there are others here on the forum who have had the capsule get stuck. Keep at the doctor until you get answers. Please let us know how you are.
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04-07-2018, 12:24 PM   #3
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By the way, no apologies nčeded for the long post
04-07-2018, 01:16 PM   #4
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Hi Ben welcome,
You will find great support here ☺ My thoughts are that You need a diagnosis of what it is that is causing this. I would keep going back to your GP keep on to them (i have learned from years of neglect from medical staff that a noisy patient get seen a lot quicker) go back and forth to your GP 3 times a week if you have to-request a dietitian appointment as your weight and nutritional status needs addressing asap.
I had 2 initial thoughts when reading through what you wrote 1 was- is this something that you have become infected with from working on the farm? (did you inform the hospital/GP that you were in contact with animals-sounds ridiculously obvious but it's surprising how many people forget) An animal there? 2 some type of IBD. I have to add i am not medically trained but have loads of experience with crohns disease though. I am from the uk also but others are from different time zones maybe they can help when thier time zone allows it.
I suggest keeping a food and symptom diary going so that any triggers dietry wise will show up. Keep going with this and it will be useful to show your GP/Hospital when you see them next.
You will get answers, keep strong and post here if you need any further support.
04-09-2018, 01:35 AM   #5
Lynda Lynda
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Sending you my support.
04-12-2018, 04:38 PM   #6
Bewse25
 
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Hi all, thanks for the kind words!

bobbet - I would love to be able to see my GP 3 times a week! I currently have to wait at least 3 weeks each time for a 'normal' appointment - and it isn't usually with the same dr as before either. I'm curious - do you happen to know if GP's can prescribe drugs specifically targeted at Crohn's/ IBD's without the advice of a specialist? Not that I WANT to be on drugs - but I'm absolutely desperate for help at this stage!

I have told absolutely every medical professional that I've spoken to about my time working on the farm/ with animals. I've had to give about 10 stool samples as well as having many blood tests. I also did a 2 week course of antibiotics. So far no progress made down this avenue.

I last saw a consultant, on the NHS, at the beginning of Jan. In her own words - 'I'm a medical mystery' - and so she was unwilling to diagnose anything, nor to prescribe anything. She told me that I'd see her again in a few months and that she'd put me in contact with a nutritionist, but I haven't heard back on either count.

I am concerned about my nutrition (not only because of my horrendous weight loss) - I now find myself constantly cold and tired and lately have been getting sores in the corner of my mouth - all things that I guess are a result of not getting the nutrients my body needs for nearly 10 months!

TL/DR: 1) I usually have to wait weeks for a dr's appt. - any advice?
2) Can GP's prescribe IBD targeting steroids/ immunosuppresants?
3) Is it even possible to be prescribed medication without a diagnosis?
4) I have told everyone about the farm - nothing found so far

Thanks again to anyone who reads/ responds!
Ben
04-12-2018, 05:51 PM   #7
Tommy21bn
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Hi Ben, I'm sorry to hear of your difficulties. They remind me of similar problems I had when I was first suffering from IBD symptoms at age 11.

Right, some quick advice: Your GP has already referred you to a Gastro. It's unlikely they will prescribe IBD medication without the advice of the Gastro. Having had an appointment with someone with specialist knowledge your job is to simply keep contacting them until you receive a diagnosis or they pass you on to someone who specialises in difficult to diagnose cases such as yours. The NHS is a very hierarchical organisation. The further you climb the ladder the more likely you are to get a diagnosis and receive reasonably prompt treatment.

Your first port of call is to contact your consultants secretary, explain that you're not well and not getting better and need an urgent appointment. They will pass this to your Consultant. If you have received nothing within 10-14 days, call again. Mention the need for a nutritional support as well. Once you meet a nutritionist they may choose to place you on supplements that will stabilise your weight loss. In addition you can ask your Nutritionist to write a letter to the Consultant detailing their concerns about your continued weight loss. Your GP can also do this but the Nutritionist is more likely to work closely with the Consultant.

Remember, if the worst comes to the worst you can go into A&E with pain or sickness. Both of these will get you a Gastro Consult.

Really it's all about keeping yourself on the Gastro teams radar, that way they are more likely to get you the help you need. It is not that they do not want to help you it's simply a case of numbers. They already have a vast caseload so you must make yourself stick out from the crowd.

I hope that is if some use. In the meantime try not to be too despondent and keep contacting people. It will eventually yield results!

All the best

Tom

Last edited by Tommy21bn; 04-12-2018 at 09:27 PM.
04-12-2018, 08:37 PM   #8
ronroush7
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Hi all, thanks for the kind words!

bobbet - I would love to be able to see my GP 3 times a week! I currently have to wait at least 3 weeks each time for a 'normal' appointment - and it isn't usually with the same dr as before either. I'm curious - do you happen to know if GP's can prescribe drugs specifically targeted at Crohn's/ IBD's without the advice of a specialist? Not that I WANT to be on drugs - but I'm absolutely desperate for help at this stage!

I have told absolutely every medical professional that I've spoken to about my time working on the farm/ with animals. I've had to give about 10 stool samples as well as having many blood tests. I also did a 2 week course of antibiotics. So far no progress made down this avenue.

I last saw a consultant, on the NHS, at the beginning of Jan. In her own words - 'I'm a medical mystery' - and so she was unwilling to diagnose anything, nor to prescribe anything. She told me that I'd see her again in a few months and that she'd put me in contact with a nutritionist, but I haven't heard back on either count.

I am concerned about my nutrition (not only because of my horrendous weight loss) - I now find myself constantly cold and tired and lately have been getting sores in the corner of my mouth - all things that I guess are a result of not getting the nutrients my body needs for nearly 10 months!

TL/DR: 1) I usually have to wait weeks for a dr's appt. - any advice?
2) Can GP's prescribe IBD targeting steroids/ immunosuppresants?
3) Is it even possible to be prescribed medication without a diagnosis?
4) I have told everyone about the farm - nothing found so far

Thanks again to anyone who reads/ responds!
Ben
I used to get cold easily. That was because my thyroid was off. I don't know if that is the case with you or not.
04-13-2018, 10:08 AM   #9
Scipio
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Since your colonoscopy, MRI, and blood tests all can't find any signs on IBD, I'd be a little hesitant to give you IBD medicines too if I were your doc. Most IBD drugs are pretty powerful (and often very expensive) and are not normally prescribed without a diagnosis.

But you clearly have something wrong. Have you been specifically tested for C.diff infection? How about Giardia? (Do they even have Giardia in Britain or is that just a North American problem?) If you haven't been specifically tested for these and other diarrhea bugs, it might be worthwhile to chase down whether this is a chronic gastrointestinal infection. And if you were going to try shot-in-the-dark medication without a clear diagnosis, I think I might first go for a blast of antibiotics to try to knock out some unknown bad bug rather than try IBD drugs.

And to answer your question, in the US GPs can legally prescribe IBD and other powerful drugs but most don't. They would likely send you to a specialist. I don't know whether the rules are the same in the UK.
04-13-2018, 10:49 AM   #10
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Sounds like stellar advice Tommy, thank you very much. I phoned the secretary for my Gastro this morning and was told that all secretarial staff are on annual leave!? I've phoned the docs and although they are too busy to see me, a GP is going to phone me later today for a chat.

I really don't suffer from much pain at all and so I feel like too much of a fraud to head into A+E and make a fuss.

Ron - it's interesting you mentioned your thyroid - I also struggle to sleep and my father (or grandfather, can't remember) has an overactive thyroid. For this reason the consultant checked that specific marker in my bloods but apparently it was completely normal. I may ask for them to do it again when I get the chance.

Hi Scipio. I really do understand your position and the position of the doctors to not prescribe me expensive, potentially damaging medicine. But.. having the runs upto 8 times a day every day for over 9 months has been so damaging not only to my body but also to my mental state, my relationships with my partner and friends and especially my university studies - I just can't continue as I am.

I'm not sure if I've been tested for C.diff or Giardia. I haven't been given a list of things that have been tested other than 'bacterial infections' and fecal calprotectin. Honestly - I really don't feel like any of the GP's I've spoken to care about my case at all. I'd be VERY surprised if any of them could tell me exactly what I've been tested for. However, to repeat, I have done a 2 week course of antibiotics with no effects at all.

Appreciate the responses, thanks all!

Ben
04-13-2018, 11:00 AM   #11
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There are a few things you can do on your own regardless of the diagnosis:
Probiotics - Saccharomyces Boulardii is good for some GI troubles, lots of other probiotics are available too

Diets:
1. FODMAPs diet - helpful for hypersensitive IBS type of problems (restricts onions, apples and a long list of high FODMAP foods)
2. Specific Carbohydrate Diet or similar low starch, low sugar diet that is supposed to help starve off unhealthy microbes in your GI system
3. Eliminate common immune-reactive foods (gluten, casein (dairy), soy, eggs, etc)
4. Histamine problems - remove mast cell triggers (alcohol, caffeine, etc) and restrict high histamine foods (leftovers, certain processed meats, etc)

In general, removing wheat, dairy, artificial sweeteners, alcohol, caffeine is a place to start.

Sores in the corner of you mouth - supplements - maybe sublingual B vitamins and Google it, I think there are some minerals you might try (Magnesium or zinc or something).
04-13-2018, 11:58 AM   #12
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· Stoma
Having been on a farm together with your symptoms you should ask your doctor about being tested for Lyme's Disease caused by ticks.
04-13-2018, 01:00 PM   #13
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As its very name suggests, IBD is an inflammatory condition. Right now all your tests and procedures are not finding any sign of inflammation. But if you are determined to try an IBD drug on the off chance that it might work, I suggest you ask your doc for a strong course of prednisone. It's the strongest anti-inflammatory drug that is normally used in IBD. It almost always brings the IBD quickly under control. And it's cheap. So if it relieves your symptoms that would not prove you have IBD, but it would be a strong indication that you have some sort of inflammation and possibly IBD.

You can't stay on prednisone long term. Its side effects are too great for that. But if it worked it would provide at least a temporary respite from your suffering and perhaps point your docs toward looking harder for the source of the inflammation.
04-14-2018, 09:06 AM   #14
Bewse25
 
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Hi SN8888 - I'll have to look into Saccharomyces Boulardii, thank you. I'm currently just taking Acidophilus twice a day and drinking fermented goat's milk (kefir). I've been gluten free since about October and my only dairy intake is the kefir and a small amount of butter to cook with every now and then. I no longer drink any alcohol. I've restricted onions and other foods high in FODMAPS. My diet mainly consists of GF bread (+toast), eggs, chicken, fish, GF white pasta, rice, brocolli (well cooked), bananas, broth/soup. To have such a limited diet and still be suffering as much as I am seems ridiculous to me!

Hi Bufford - I guess I should bring Lyme's disease up with a GP just to cover all bases, although having done some reading I don't really have any classic Lyme's disease symptoms. Believe me when I say - I've spoken in great detail about my time on the farm with many medical professionals. Each time they ask for stool samples and a blood test and each time the results are that I'm free of infection/ parasites/ etc. Of course I will continue to pursue this avenue, in the hope that it isn't an IBD.

Thanks again for your input Scipio - I feel I should clear some things up. I do strongly believe that this episode began with a bacteria/ infection/ parasite as I wasn't the only person on the farm to become ill. HOWEVER - the other workers shook it off after a day or two and were fine. I wonder if I've had a progressing IBD for a while and that the mystery infection was the final push over the edge..
I am suspicious of an IBD for a couple of reasons: 1) I had been losing weight (albeit quite slowly) for the last two or so years. 2) A few times over the last few years I suffered from bouts of unexplained constipation - which I put down to very mild IBS (my sister suffers too). 3) There are definitely certain foods now which cause me a LOT more trouble than others. Tough things like peppers and even very mild spice (think salami heat). I don't know that a bacterial infection would make me more sensitive to certain food groups, although I'd be more than happy to be disproved here.


So if it relieves your symptoms that would not prove you have IBD, but it would be a strong indication that you have some sort of inflammation and possibly IBD.
These are my thoughts exactly. Again I'd like to stress - I do not WANT to be on Prednisone and I have thought long and hard about taking this direction, but I feel like at least it would give my 'treatment' more of a direction, whether it worked or not.

Thanks again all!
Ben
04-14-2018, 04:21 PM   #15
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There are some reports of steroids helping IBS, supporting the idea that there’s some (lower) level of inflammation there. Your story could support a diagnosis of post infectious IBS, too. That is thought to have a molecular mimicry type of mechanism, where antibodies against a GI bug cross react with (maybe) vinculin, a protein on GI neurons.

Your diet has a lot of starch...that would be trouble for me (GF bread, pasta, rice, etc). It doesnt immediately cause any trouble, just supports bad bacteria or yeasts or something in your gut, if you believe in the SCD. Definitely trouble for me.

Some people with microscopic colitis do well with 4-6 weeks of taking something like 8 chewable Pepto Bismol every day (you have to give it up for a few months after that to avoid it building up in your system).
04-14-2018, 04:50 PM   #16
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So sorry you have had such poor care Ben.
Your gp can prescribe things like steroids if your diagnosed but i don't think they can if not. Also i have read that crohns/IBD can be triggered by enviromental factors reacting with your genes. This is just not good enough care from the health syatem. I would now go down the complaints route. My only other suggestion apart from what others have said is to write to your local MP explaining your situation and that you are in desperate for help and are receiving so little from anyone and can they please help you. Also keep on to the nutritionalist as your body seems to be showing effects of malnurishment.
Keep strong Ben.
04-16-2018, 05:52 PM   #17
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SN8888 - Initially all of the GP's that I saw were convinced that it was post infectious IBS, which I did think was fair enough at the time, and that it would improve over time. However, realistically I'm no better than I was 9 months ago. In fact I feel worse now that my body is depleted of all of it's good stuff.

Thank you for pointing out the starch issue. It isn't my intention to eat lots of starch particularly, I had just thought that carbs would be the best way to 'keep me going', so to speak. I'm interested by the SCD and am going to make an effort to give it a go (although I don't have much free time to focus on meal prep right now due to exams). Out of curiousity, and I hope you don't think I'm being rude, would you be willing to give me a brief example of your daily food habits/ meals? I'm struggling for ideas!

bobbet - it's ok, it certainly isn't your fault! I keep giving the doctors and specialists the benefit of the doubt re time between appointments etc as I know that there's a bit of a crisis and they're having a hard time. But I guess I need to be a bit more pushy to get through. I've been considering the complaints route for a while but again, I currently am a bit short on time. It's definitely something I'll be looking into so thank you! Yes, I am desperate to see a nutritionist or dietician or someone, my body is crying out for help.

Thanks both!
Ben
04-16-2018, 06:39 PM   #18
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I have been able to move away from the strict diet I had years ago. I initially followed the "Yeast Connection" type of diet which is similar to SCD. SCD allows some dairy which is a definite problem for me.

If I remember correctly, I ate a lot of eggs and meat and some well-cooked veggies. Keeping it very low carb gave me a headache so I added in some carbs when I started to feel better. I can usually tolerate Fritos or some other corn or tortilla chips, especially if I have them between meals (assuming that the carbs can be digested and absorbed better if not part of a big meal??). A little high fructose corn syrup (ie most sweetened soft drinks) doesn't bother me either- it's mostly monosaccharides which are rapidly absorbed and can provide calories if you're trying not to lose weight. Some people have issues with fructose and that would be a problem for them.

If I have a few bad days now, I don't eat much, just take big doses of Pepto for a couple of days, then ease back into eating and make sure I take S. Boulardii. That's me, it might not work for most people here. I have to be careful with supplements, some probiotics can send you running to the bathroom, so can Vitamin C, magnesium and some other vitamins and supplements if you're not careful.
04-19-2018, 12:41 PM   #19
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Hi again SN8888. Thank you for your response, I'm going to shift my diet over to more meat and a wider variety of (very well cooked) vegetables and see what happens.

To be honest, it's hard for me to tell what food types/ groups/ specifics cause me more trouble than others because in reality there hasn't been a single day or series of days in which I've felt even close to normal. My digestive system seems to hate most things equally, with the exception of spice and tough veggies - which it hates even more!

I spoke to a GP today - I was informed that they are unwilling to prescribe anything other than loperamide (imodium) whilst 'investigations are ongoing', due to side effects and other things. I can see where they're coming from but I struggle to see how the side effects of one course of a strong steroid could be worse for my health than 9+ months of untreated diarhhoea.. but hey ho, such is life. She said she would chase up the specialist and nutritionist. I've been booked in for more blood tests, and will chase up the bacterial/ non IBD side of things when I can.

Got lots of university exams coming up and it seems another summer is about to pass me by, whilst my friends enjoy themselves and my partner gets more and more fed up with having a sickly spouse. All in all I'm feeling pretty miserable!
04-19-2018, 12:51 PM   #20
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Hi again SN8888. Thank you for your response, I'm going to shift my diet over to more meat and a wider variety of (very well cooked) vegetables and see what happens.

To be honest, it's hard for me to tell what food types/ groups/ specifics cause me more trouble than others because in reality there hasn't been a single day or series of days in which I've felt even close to normal. My digestive system seems to hate most things equally, with the exception of spice and tough veggies - which it hates even more!

I spoke to a GP today - I was informed that they are unwilling to prescribe anything other than loperamide (imodium) whilst 'investigations are ongoing', due to side effects and other things. I can see where they're coming from but I struggle to see how the side effects of one course of a strong steroid could be worse for my health than 9+ months of untreated diarhhoea.. but hey ho, such is life. She said she would chase up the specialist and nutritionist. I've been booked in for more blood tests, and will chase up the bacterial/ non IBD side of things when I can.

Got lots of university exams coming up and it seems another summer is about to pass me by, whilst my friends enjoy themselves and my partner gets more and more fed up with having a sickly spouse. All in all I'm feeling pretty miserable!
Sorry you are feeling bad. Hope you feel better soon. I can't eat any vegetables unless they are fully cooked


04-19-2018, 02:37 PM   #21
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You can check out what they say about Pepto B and other medicines on the Microscopic Colitis foundation website (below). You might get some ideas on what you can try.

http://www.microscopiccolitisfoundat...dications.html
04-20-2018, 04:32 PM   #22
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So your first colonoscopy showed mild inflammation but the biopsies did not contain granulomas (many GIs won’t diagnose crohn’s unless the pathologist sees granulomas, but they are present in only @30% of crohn’s sufferers). Other tests found everything normal, I think you said. To me, the most immediate problems are your weight and possible nutritional deficiencies. The sores in the corners of your mouth sound like angular chelitis, which is a sign of anemia. Has your GP done any testing of your vitamin levels (simple blood work). They can get very specific. Severe anemia will make you unable to walk far or fast and can make you dizzy if you stand up quickly. Have you been tested for celiac disease? You’ve already cut out gluten so it might be hard to detect and going gluten-free should have made a difference in your symptoms. As far as your doctors go, you’ll have to be extremely persistent, unfortunately, and that’s hard to do when you’re not feeling well. I hope you get some answers soon.
04-20-2018, 08:39 PM   #23
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Thanks again for your input Scipio - I feel I should clear some things up. I do strongly believe that this episode began with a bacteria/ infection/ parasite as I wasn't the only person on the farm to become ill. HOWEVER - the other workers shook it off after a day or two and were fine. I wonder if I've had a progressing IBD for a while and that the mystery infection was the final push over the edge..
I am suspicious of an IBD for a couple of reasons: 1) I had been losing weight (albeit quite slowly) for the last two or so years. 2) A few times over the last few years I suffered from bouts of unexplained constipation - which I put down to very mild IBS (my sister suffers too). 3) There are definitely certain foods now which cause me a LOT more trouble than others. Tough things like peppers and even very mild spice (think salami heat). I don't know that a bacterial infection would make me more sensitive to certain food groups, although I'd be more than happy to be disproved here.
None of this necessarily points to IBD actually. The weight loss could be a sign of IBD, but it could be a sign of other issues too (for example, if you have a parasite or an infection that hasn't gone away, that could have caused weight loss).
Unexplained constipation could be IBS or just life...most healthy people experience constipation every now and again.
Being sensitive to mild spices again does not mean anything specific.

You DO have some signs of IBD though - the inflammation in your colon and terminal ileum. Unfortunately, it sounds like biopsies did not show enough for a diagnosis.

I'm surprised no one has mentioned this, but has anyone considered Gastroparesis? The fact that the pillcam (capsule endoscopy) sat in your stomach for EIGHT hours suggests your stomach is emptying very slowly. Delayed gastric emptying is called Gastroparesis and cause nausea, vomiting, stomach pain, fullness after eating only a little and weight loss.

It does NOT cause diarrhea though. But I do have some thoughts:
One of the causes of delayed gastric emptying is inflammation. It could be that you do not have idiopathic Gastroparesis, but have delayed gastric emptying due to inflammation. Did they do an upper endoscopy with your colonoscopy to examine your stomach duodenum?

Also, it sounds like the capsule endoscopy did NOT get any pictures of your small bowel because it just sat in your stomach. An MRE or CT didn't show anything, but they don't get "pictures" of the mucosa. Instead of swallowing the pillcam, another option would be to place the capsule into your duodenum during a scope - they do that a lot for little kids who are unable to swallow it. That way it bypasses your stomach and they will get a look at your small bowel. IBD can sometimes "hide" in the small bowel which makes it very difficult to diagnose.

My daughter has Gastroparesis and in her case the pillcam sat in her stomach for almost 4 hours. After that it did move to her small bowel, so we were able to get some pictures. For Gastroparesis, they do a gastric emptying scan to see if you have it. You eat a small meal (in the US it's eggs and toast usually) which has a radioactive tracer in it. Then they take images at intervals for 4 hours to see if the food has left your stomach. If more than 10% of the meal is left after 4 hours, Gastroparesis is diagnosed. Generally, medications are used to speed up motility and that takes care of symptoms. However, it sounds like you don't have typical Gastroparesis symptoms - since it's slow motility usually constipation is a problem, not diarrhea. And nausea or vomiting after eating, pain after eating and weight loss. Does any of that sound familiar, beside the weight loss?

I wonder if it would be worth repeating the colonoscopy since they have been unable to find a cause for the diarrhea. It is really unlikely a GP will prescribe a strong immunosuppressant without a diagnosis.

I don't have a whole lot of advice except to ask if you have tried IBS medications? People do have IBS with diarrhea for months at a time. It's not unheard of at all. And there are some GIs that think people with IBS do have very low grade inflammation though that is still a theory and nothing more. There are IBS medications used to control diarrhea. With IBS, there is no real way to treat the cause - you just have to find your triggers and manage the symptoms. I have IBS and have found that keeping stress levels low and avoiding certain foods prevents diarrhea for me. But there have been times in my life where I had diarrhea for over a year at a time, many times a day,

It's possible you have IBD but to have negative blood work, normal fecal calprotectin and a normal MRE and CT makes it seem less likely...the only thing that points to it was the first colonoscopy, but it sounds like they found non-specific inflammation.

Also, Giardia is a parasite that is hard to get rid of and sometimes does not show up on tests (it can require multiple tests to diagnose). I would make sure you have been tested for that because that can cause diarrhea and would require an anti-parasitic to get rid of it. Sometimes they use an antibiotic in conjunction, sometimes they do not.

You say you are gluten free - have you ever been tested for Celiac disease? To be tested you need to be eating gluten regularly or your test results will be inaccurate. I wonder if it could be Celiac and you are still getting gluten from somewhere - you would be amazed where it can hide.

I wish I had more/better advice - have you looked at the Undiagnosed Club thread? Everyone there is in the same boat and they may have some ideas for you.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-22-2018, 12:01 AM   #24
cmack
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