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Crohn's Disease Forum

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Lenatilde, how did the GI appointment go? And as for the hip pain, are you sure it's fibro? I ask because arthritis is pretty common with things like Crohn's - I have arthritis in both hips myself. You might want to ask your doctor to x-ray your hips to see if there are any signs of arthritis - if they catch it early, you may be able to treat it with things like physical therapy. I went through PT and that kept my hips feeling good for about 2 years, although things are getting worse lately so I have to figure something else out now.

Bluebird, I hope things are going okay today with the ultrasound and the scope! Please update us when you are able to. I'm sorry to hear the prep didn't go so well, it is definitely the worst part so hopefully you're doing better today.

Cindy, what kind of fiber pills is he having you take? I take 1 tablespoon of psyllium husks (soluble fiber) every day, and that has done a lot of good for me. Not all fiber supplements are created equal though, some have a lot of fillers/additives which can cause cramping or upset. If the fiber pills don't do good things for you, I'd say try some organic psyllium husks (apparently the non-organic has a lot of pesticides). I get mine at Whole Foods, it's something like $11 for a big container that lasts me quite awhile.

Meg, poor thing, I haven't had shingles but I've heard it's very painful! :( As for the Gatorade/Miralax prep, I've done that one twice myself. It is easy to get down, but it always seems to make me too dehydrated and I ended up on IV fluids both times. I will say, drink a flavor of Gatorade that you don't particularly like - because you aren't going to want to drink it again anyway! :p My mind associates yellow Gatorade with prep now, so I'm glad I didn't drink my favorite flavor during prep (rain berry - the light purple one).

How's everyone else? I'm doing better, no more bleeding and I'm pretty sure I won't bleed as long as I stay off my bike. So I'm lifting weights and doing yoga more instead. Hubby's birthday was yesterday and I let him pick where we went to dinner. I actually dared to try a small salad with dinner - yikes! I had one episode of D last night which I'm sure the salad triggered, but only the one episode, so I know it could have been worse.
 
Hi Cat! He told me to get some FiberCon, so I picked up a bottle and take two a day. So far, with the docusate sodium, I'm actually going every day! wow! And it's more normal! lol what a thing to be excited about. It looks a bit grainy from the fiber tabs but I seem to be tolerating them well so far. If I start to have problems I'll look into the psyllium husks for sure.
 
McCindy thanks and that pizza sounds so bloody good! Can't wait to eat later!!

Thanks Quirky :)) I wish they would invent something easier to swallow :(

Thanks Cat! I ended up drinking most of it and probs left a quarter because I began almost blacking out and vomiting plus my stomach did not like it at all :( it was agony!!!
I went to have my ultra sounds but the nurse could only do my abdomen because my bladder wasn't propyl full and this was due to the fact I have a colonoscopy at 1pm and was not allowed to drink loads 4 hours before -___- so now I have to go back Tues to get my pelvis redone.
She didn't tell me when I would get my results though :/

I'm hoping I'm cleared out enough, it's just yellowy water I've been passing for hours. Fingers crossed!!
 
bluebird, it does seem odd that they had you do both the same day when you can't drink water before the colonoscopy. Silly doctors. I'm sorry to hear you have to go back but at least it's the easier test you have to repeat. good luck good luck good luck with the colonoscopy!
 
Bluebird - how did your colonoscopy go?

Meg - sending you hugs... shingles does not sound fun :( do you only get it if you havent had chicken pox already?

Cat - its a shame you are having to stay off your bike :( but hopefully no more bleeding...

I got a letter this morning from my GPs office saying " the Rheumatologists have found that your vitamin B12 and folate levels are slightly low and have asked us to treat you for this"
Jeez louise.. just so fed up lol.
 
Bozzy, I know you know that low folate and B12 can indicate IBD. I know you're focusing on your chiari and the surgery right now so the guts are on the backburner, but I'm worried about you. Everything you've said says IBD to me - the fact that pred worked especially. I just don't want you to let it go too long and develop scar tissue or anything like that.

Bluebird, I hope the scope went well! Please update us when you are able to.

Cindy, when is your scope? I hope the prep isn't too awful this time around.

How's everyone else? I'm going to be a little risky tonight. Alcohol isn't my friend but I can get away with a small glass of white wine on occasion. As some of you may know, I'm mildly obsessed with South Korean culture (I'm trying to learn Korean, it's such a cool language, and I adore K-pop and K-dramas). I was watching a K-drama recently where one of the characters kept drinking Soju - apparently it's a type of alcohol that's very popular in Korea. Hubby and I went grocery shopping this morning, and in the liquor department, I found some soju! I'm going to try it tonight. Won't drink much, but then again it doesn't take much to make me silly/sick. :p So wish me luck, hopefully tomorrow won't be too bad. I'm not a big drinker at all and I won't overdo it, but I don't know how this type of alcohol will affect me so that's the big question mark in the equation.
 
Thought I should update. Liam has now had a month on 40 mg p/day PPI & 30 mg p/day of Motileum. On this combo he is gaining weight but still has bad bouts of upper stomach pain each week.

We saw a new pediatric GI earlier this week who we liked. We went in simply expecting him to review where we we're at and issue new prescriptions for medications however he really wasn't comfortable with Liam's ongoing symptoms.

He has ordered prometheus testing for indicators of IBD and UC but said he has seriously doubts this is a gastric issue.

He was concered that Liam was still having severe heartburn at this medication level and said that he is concerned that this isn't reflux. He talked about needing to check out other organs more carefully.

We gave him a summary of Liam's history to date and he asked us to come back next week when he's had time to absorb the information and consider what the next steps should be.
 
@ cat - this is why im fed up. Because I kept thinking "its manageable on my own without medication" .. and that I was fine with IBS diagnosis (as I am clearly not as ill as others with IBD). But then something like this happens.. and it makes me question whether I do in fact have IBD.
Im pretty sure that after im fit and well after chiari surgery.. that I am going to seek a 2nd opinion about this whole gastro stuff.

I have always had IBS for as long as I remember. But only since the birth of my daughter have things changed. I now get a sharp stabbing pain in my LRQ (whereas it used to be dull pain) I pass a lot more mucous with blood entwined. I sweat really easily now too.. I get ulcers inside my nose!! And my first mri of the brain showed inflammation in the paranasal sinuses. My joints started hurting for the 1st time ever when my "appendicitis" occurred.. and they flare up frequently ever since. (Obviously no joint pain since being on sulfasalazine) . They found inflammation in my colon..! Which was unspecified inflammation. And then they found the bleeding too...grrr...

I think if I do have IBD.. then it is VERY mild.

Good luck with the soju later! Hope it tastes nice and is easy on the stomach xx

@Maree - sounds like a good guy. . This new paediatrician :) seems like he going to really think about it and not quickly jump on the "fobbing off bandwagon" like other doctors lol. Best of luck xx
 
Cat-a-Tonic said:
I don't do a ton of cycling, but there are a lot of really nice bike paths in my city, and I enjoy riding around on them. When I first started exercising in earnest, I was mostly lifting weights (my favorite type of exercise, which I can fortunately still do). But I knew I needed to do cardio too, so I tried jogging. That went terribly - I have arthritis in both hips, and they cannot handle jogging, too much pain. So I tried riding the stationary bike instead, and that went well.

So last year I bought myself a cruiser-style bike for riding around in the city, although we had a super hot summer last year so I only got out on my bike maybe 3 times last year. I rode the stationary bike all winter to get myself in better shape, and I was so happy recently when the weather finally got nice enough to ride outside. I have a TV in the room where my stationary bike is, but it's still so boring to just sit there and basically pretend to ride a bike for an hour. :p So when spring came along, I started doing short rides (like 5-6 miles) and that went fine. It wasn't until more recently, when I started doing 10-15 miles rides, that the issues started happening. So I can probably still get away with riding 5 miles without bleeding, but it's frustrating because I know I'm in shape enough to do more than that, and I hate holding myself back. I guess I'd rather just not ride at all right now. I'm not even sure what I'm going to do for cardio now - I'm going to stick with weights and yoga on alternating days for now and will hop on the stationary bike when there's something I want to watch on TV I guess. There's nothing like getting outside for a nice long bike ride though, and I hate my body even more than usual for it taking that away from me.

Yes, I think you've mentioned in the past that you used to be an avid cyclist. I am so sorry that you aren't able to ride your bike anymore either. I was similar with my kayak - once I got sick, it sat in my basement for about 3 years collecting dust. I finally was brave enough to take it out last year, and fortunately that went well. It was terrifying though, all the "what ifs". What if I am out on the water and need a bathroom, what if my guts cramp up and I can't continue paddling, what if I push myself too hard and set off a flare, etc. I didn't have as many what ifs about riding my bike - riding in the city, I know there's always going to be a bathroom relatively nearby, and if I can't continue riding for whatever reason, I knew I could call my hubby and have him come pick me up in the car. But yes, I totally relate to having that fear, I avoided my kayak for years because of it.

You mentioned taking a long walk recently, right? And you've mentioned feeling quite a bit better due to pancreatic enzymes? I hope you're able to continue being at least somewhat active once you get over the food poisoning. Is it your Sjogren's that's flaring up now? I see in your sig possible Lupus, that's a new one - goodness, you have so many illnesses to contend with! :( It's just not fair. I know I complain a lot, but I "only" have IBD, GERD and arthritis, so I shouldn't complain too much. This not being able to ride my bike thing has gotten me really down, but I'm trying to look at the positives (at least I can still lift weights!! I think I would die if I wasn't able to do that anymore!). Anyway, I'm totally rambling on again. I hope you feel better soon, sounds like a really nasty food poisoning. Have you been to the doctor? As for your job, do you have any programs like Family Medical Leave (FMLA) there? FMLA is something we have in the US, basically it says you can't be fired due to taking extra sick days if you have a serious, chronic medical condition. I would be out of a job without FMLA! I hope there's some kind of protection there you can apply for. Hang in there, hun.

I'm not going to be on much for the next few days - my hubby's birthday is tomorrow so I'm taking a couple days off of work and we're going to try to do something fun. Fingers crossed, if I'm feeling well enough and if the weather is nice enough, I'm hoping we can take the kayak out! :)
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I am generally able to walk the dog and go for nice long walks which I love but I'd love to get back on the bike. It's an anxiety thing I think, because I remember how painful it was and I worry about not being able to continue, how would I get home. Also I'm so unfit now I probably can't cycle the length of myself :p The thought of working myself up to be that fit again seems like an insurmountable task.

I also couldn't handle jogging due to my joints that's why I took up cycling. Luckily my disease doesn't damage my joints like you, it just makes them hurt like hell. It's weird, one joint can be painful for months then the pain will just disappear as if nothing ever happened. AI diseases are weird!

I'm unfortunately self employed so I have very little protection - I don't even get sick pay! Every day I'm off I don't get paid! My boss has been super understanding compared to previous ones and the staff have been so so so supportive throughout this. I just hope I don't get to the point where I piss my boss off and I get fired. Although he did hire me knowing I had health issues as I was late in starting due to being in hospital!

Maree - What do you mean they're looking at his organs??? What are they looking for?
 
When I said look at, I mean't investigate.

GI talked about heart and kidneys in particular as things that needed more scrutiny.
In particular expressed concern that what we've been calling reflux might be angina.

Not sure what tests he's going to order next or where he will send us next.
 
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Lsgs - thats good that your boss is being understanding about your situation. But it sucks being self employed and not getting sick pay. Where are you at with testing? (I havent been round much to keep up to date with everyone lol)

Maree - sounds like a good idea to investigate other causes to your son's pain and symptoms. Maybe they contribute to his bowel problems??
 
Liam doesn't really have any bowel symptoms, just frequent moderate to very severe abdominal pain, (with two focal point, one in centre of his stomach around the belly button and another high up under his breast bone), indigestion (which has been labelled reflux) and failure to gain weight. He's had two colonoscopies which looked really good.

There is a family history of Crohns & UC and he had a high calprotectin result (691). His symptoms have been very similar to those my niece had in the lead up to her diagnosis with small bowel Crohns.

I'm happy too to have other possibilities explored, would be awful if we we're missing something serious because everyone was so focused on the IBD possibility.
 
It makes sense that it would be IBD if there is family history..
But I suppose a lot of auto immune problems can be linked. Has he been tested for other AI problems?

Although I dont think anything other than IBD can cause pain around the belly button and the high faecal calprotectin test (dont know how to spell it)
Unless issues with blood vessels or connective tissue disease?
 
To date the focus has been on IBD.

GI was concerned though that most of Liam's severe pain and all the bouts of extreme pain (ones where we've taken him to hospital or 24 hour GP following we're triggered by exercise). Felt this mean't we needed to explore rarer possibilities.

I'm not sure he really understood what possibilites, he asked us to come back in a few days, once he'd had time to absorb the information we'd given him and think about it for a while.
 
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bozzylozzy said:
Lsgs - thats good that your boss is being understanding about your situation. But it sucks being self employed and not getting sick pay. Where are you at with testing? (I havent been round much to keep up to date with everyone lol)

Maree - sounds like a good idea to investigate other causes to your son's pain and symptoms. Maybe they contribute to his bowel problems??
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Tbh I'm completely confused where I'm at with testing. I just had an MRI to look at my blood vessels as they think there might be a touch of mesenteric vasculitis so I get the results on Wednesday. Then I've had a phone call from my GI saying you might have lupus serositis/lupus vasculitis. Considering the lupus word had never been mentioned before I'm thoroughly confused. Then they want a small bowel MRI to rule out or in crohn's. I've put that off as I can't face it at the moment, and they didn't give me nearly enough notice to cancel my patients.

I'm at 5mg prednisolone though and still reasonably well :D so I'm a happy girl in that respect. See my new GI again on Wednesday so hopefully some more input there. I'm feeling pretty well on the pancreatic enzymes, very little pain and much less nausea but I'm still bleeding and having fevers and stuff so I'm not convinced it's the full picture.

When's your surgery btw?

Maree are they looking at vasculitis? That would cause abdo pain after food and exercise.
 
That is confusing! But least theyre looking at many options.. dont want to have to repeat tests just to look for different diagnosis' separately, you know?

My surgery is 5th July. . Eek.! So less than 3 weeks to go now.
I have my immunology appointment on tuesday and my pre-op tests on thursday.
 
Just a quick update from me - I had some soju last night (it wasn't great on its own so I mixed it with fresh orange juice from my juicer) and I feel fine today. Guts are maybe a teeny tad grumbly but nothing bad at all, I don't feel hung over or anything (I had 2ish strong drinks, although I am a total lightweight so kind of a lot of alcohol for me!). Guts are feeling well enough that we're going to take the kayak out in a little bit! :) Which means I have a lot of prep work to do right now (make picnics, check supplies, get the kayak secured on top of the car, etc) so gotta make this a short post. Hi everybody, bye everybody, I'll write more when I get back from kayaking! :)
 
Cat, how was the kayaking? :)

I went to my GPs today.. so I am starting the B12 injections next monday. I have them every monday, wednesday and friday for 2 weeks. To build up my stores.. just in time for surgery (I will have my 6th injection at the hospital just before surgery) then I will have them every 3months.
It says my level is 156?

Plus - cat you will be happy to know that this GP offered another referral to a gastro doc! I didnt even ask for it lol. But I will probably go private for it.. and go in a couple of months to get over my surgery
 
Bozzy, the kayaking was great. :) Beautiful weather, no trouble at all, and I feel good today too (so it didn't affect me the way that riding my bike affects me). Sometimes, at times like this, I can almost fool myself into thinking I'm healthy & normal. I drank alcohol, then the next day I did hours of fairly intense exercise that requires me to use my core muscles a lot - and I didn't pay for any of that? But on the flip side, if I ate coconut and then rode my bike for an hour, I'd be in a world of horribleness. :p It's so weird what my body will and will not tolerate. Nearly 4 years into my illness and I'm *still* learning what I can & cannot get away with.

I'm glad you're finally going to see a new GI! I don't know a whole lot about B12 but I saw that you posted about it in the B12 thread, so hopefully someone in there can help you out. I presume they'll re-test your B12 once you've had some injections? Hopefully then you can establish a pattern and also will feel better as your B12 goes up. I honestly can't remember the last time I've had my B12 tested, but I see my GI again in August so I'll make a note to ask him about it then.
 
Yeah I think they will test it in a few months. Hopefully I wont need them for long.. I dont like injections.
Cant remember if I told you that when I got my brain MRi.. they sent me all my radiological images ive ever had!.. my bone scan, my CT scan when had my appendicitis (1st flare?).. the CT scan of my chest after my c section... the list goes on. But I dont know what im looking at! Haha

I have my immunology appointment today.. not sure what to expect.

Its good you can go kayaking, how far do you have to travel to do that?

How is everyone else doing? This board has gone a bit quiet :p
 
I'm so pleased you got to go kayaking and have a positive experience Cat!

Bozzy B12 injections can make a huge difference, you might find you feel a lot better after them. My gran, for example, after an operation could not get out of bed for months. She was diagnosed with depression and sectioned! After being sectioned into a psychiatric hospital they ran blood tests and found she had low B12 (caused by the surgery) and started her on injections and she never had a problem again! :)

What are you seeing an immunologist for? Seems like your list of specialists is growing rapidly :O

I've flared up a bit but to be fair my diet has been bad, lots of meals out and supposed to be going out again tonight. Been feeling fine all day then at 10pm having terrible pain and night sweats. Hope it calms down soon, and I'm seeing the new gastro again tomorrow for my MRI results. Tbh I can't wait to see the NICE guidelines for faecal calprotectin in October. Might help me out a bit. I'm supposed to be tapering down my pred but I'm quite hesitant since I've flared but I'm just so desperate to get off it! lol.
 
Yeah.. thats what my friend said about the b12 injections. Hoping I do feel better.. I love how one of the symptoms is "mood changes" which couldnt be more 'me' if it tried haha!! Im fed up of not knowing how my mood will handle situations.. I get so teary at times and so angry I could trash the room! (And I hate that I get like that)

I think I have seen practically all the specialists available.. I think I should have shares in the NHS by now ;) this appointment is for the itchy skin/rash that I get. I have been on hydroxyzine hydrochloride antihistamines, which have been great. But the minute I stop taking it, it comes straight back

Good luck with your MRI results tomorrow! Ill keep fingers and toes crossed for you (the perks of being hypermobile) and hope you get some answers.
I dont think ive ever had a faecal calprotectin test done.. but when I was in hospital.. they take samples and test things and dont tell you anything lol xx
 
Cat - looks like I'm going to have to postpone the scope. I went to Mayo yesterday and had a long visit with both a neuro oncologist and a neurosurgeon. Both deal spefically with brain tumors. They both feel that once brain tumors start causing symptoms like the seizure I had and the memory problems I've had since, it is better to take them out. Plus the long-term prognosis is better with resection. So, on July 11th, I will be having a craniotomy with tumor resection. Probably an awake surgery, so they can talk to me and test me to make sure they aren't damaging any normal brain function while removing the tumor. They will also be able to biopsy the tumor to determine exactly what kind it is and what the grade is. I am pretty terrified about the surgery but I am still glad I went, because the prognosis is much better with resection than without. Survival rates with the tumor left intact are only about 5 years, but resection can extend that out quite a ways, especially if it doesn't grow back. So I will have to postpone the colonoscopy, at least until the docs feel it would be okay for me to have one, and seeing how my recovery goes. Probably August I would guess.

I also tried a white bun yesterday, to see if I still have the gluten issues. Not much for pain but I did get bloated last night so there is still something going on there.
 
Mccindy - so sorry you need to have the surgery... but maybe you will feel better knowing that its no longer there? So I guess me and you are both having head surgery at nearly the same time! (Obviously not comparing my situation to yours) but I really really hope this works out for you! Im sending you lots of well wishes and hugs over the internet :hug:

My friend is currently doing her doctorate to be a clinical psychologist.. during her studying - she was able to speak to a patient during their awake craniotomy. Because the brain doesn't feel pain.. its amazing what surgeons can do xxx
 
Thanks bozzy! My son is working toward his Master's in cognitive neuroscience, so he's been a pretty good resource for me during this too. Your friend must have found that experience quite fascinating! I know I need to meet with a speech pathologist prior to my surgery, since one will have to be in there to talk to me during the surgery. It's so freaky!
 
She did find it fascinating - her job was just to talk to the patient asking how she was feeling etc..
Thats good that your son can help talk through some things with you :)
I just cant get over that you would be awake while they "tweak things" haha.. whoever thought to wake patients up? But it does make sense, its a very delicate and important area!
Did they say how long you would be in hospital for?
 
It sounds like at least 5 days and maybe up to 7. The neurosurgeon felt it really depends on how much weakness/damage I have after the surgery. I think the idea that I will be awake is really freaking me out!:eek: Even though I know there are no nerves in the brain and I won't feel anything; one thing that's always been good about surgery is you go to sleep, and when you wake up it's all over. But I guess that won't happen this time!:yfaint:
 
You will be fine im sure :)
I think the speech person will be sat talking to you a the time, so you can just keep your thoughts on that and not the surgery. 5-7 days doesnt sound too bad. Fingers crossed you dont stay in long.. there's nothing better than your own bed :)
 
Cindy, I'm glad to hear that the surgery will make your prognosis better! That's definitely a big positive out of this whole situation! But yeah, the thought of being awake during surgery definitely is scary. I am glad there will be someone there talking with you the whole time, hopefully they'll be very good at distracting you from whatever the surgeon is doing.

lsgs, it sounds like you're over the food poisoning then? Do you think the food poisoning triggered this flare? Good luck with the GI appointment and the MRI results. Do you like your new GI? I remember you having some pretty awful complaints about your previous GIs.

Bozzy, I get crazy mood changes when I flare too. Mostly I cry at everything - I've literally cried at TV commercials ("There are sad-looking puppies on TV... sob!") and I've cried at just the thought of calling my mom or calling the doctor. And for the first like year and a half, I cried every single time I had a doctor appointment (my GI knows to keep tissues handy when I have an appointment!) My hubby absolutely cannot understand it (I know it's irrational) because he feels like crying is worthless and that I should get angry instead "because at least anger is a productive emotion" according to him. (How is anger productive? I still don't understand that one.)

How's everyone else today? I've been trying something new, I'm trying to cut out carrageenan from my diet after reading a few threads on here talking about how awful it is (apparently it's a "natural" additive that's in a lot of things, but it has caused UC in lab rats and is probably terrible for humans too). I switched brands of almond milk, that was an easy one. But I had been drinking Ensure or Slim Fast for breakfast, and those both have carrageenan. There are very few supplement drinks that don't contain carrageenan, as it turns out. I tried some "south beach diet" supp drink this morning, but it has whey protein in it which I was leary of. Most of us with digestive issues don't seem to tolerate whey protein very well for some reason, at least based on anecdotal evidence from the diet & fitness forum. So anyway, I drank that new drink this morning, and I've been to the bathroom with looser stools about 6 times since then. I need to find something else. I think I will try Ensure Clear next, as that also has no carrageenan, although I've heard the taste is horrible. It's kind of expensive too. Hmph.
 
Cat, I am with you on the husband thing. My hubs doesn't understand why tears are necessary, but he certainly thinks it's fine to get mad! This anti-seizure medication makes me more emotional and he is really having fun trying to keep up now. Sometimes he doesn't know how to deal!
 
Yeah, honestly I wonder if my hubby has gotten anger confused with other things. Like, when he started working out with me, I told him all about my reasons behind working out - that I'm determined to fight the battle going on in my body, and working out is the closest feeling I get to physically fighting my illnesses, and I'm not going to let a bad day stop me, I'm going to keep going, etc. And hubby was like, "Yeah, that's what I've been saying all along! Get mad, it's productive!" I was like, "No, I'm not so much mad - I'm determined and strong and stubborn and tough. Not really angry though..." It's like that quote from the Princess Bride: "You keep using that word. I do not think it means what you think it means." :p
 
Hi all

Mccindy - sending hugs to you; it sounds like you're in good hands with your medical team.
Bozzylozzy - I'm hyper mobile, too! High five! I hope the b12 injections work.

Cat - you're so wonderful and caring. Thank you so much for checking in. It's been a continuing nightmare... You were right; of course they couldn't see anything on a sigmoidoscopy - i did query when told, but was told "thats how we do it here with folk your age". Even the surgeon said as soon as I was prepped and ready "why aren't we doing a colonoscopy?". Turns out, they didn't have my faecal calprotectin results and didn't even know I'd had it.

We've figured out they're probably running parallel processes with me - I am two people at the moment! One has just had an unnecessary sigmoid, and while that was taking place they were sending a letter to the other me telling me they've booked me in for an urgent appt with a gastro... Assumingly because they got my $&@# faecal calprotectin results. It is all paper-based and an administrative nightmare. My husband (who is a health services researcher) was furious. I feel like I'm back at square one. They took a number of biopsies and thought there might have been some inflammation, but think it might have been due to bowel prep... And referred me for a colonoscopy. I'm seeing my awesome GP tomorrow and will ask him to sort it out - make me one person again and join up my blimmin records.

Re my hips, I did have dislocated hips when I was born and have weirdness in how they 'sit'. I had an X-ray relatively recently and they looked ok from an arthritis point of view. Phew!

Back at work this week - have been in for two days. Going in late today, waiting for my pain meds to kick in. It's good to feel a bit useful.

Love to all you wonderful people.
xLT
 
Aw, Lenatilde, that sounds awful. I hope you can get everything straightened out soon. Keep us posted as to what happens with the GP tomorrow. Good luck! Will you get your calprotectin and biopsy results tomorrow too?

I'm a bit hypermobile too, mostly just my elbows and knees as far as I can tell. It seems to me like hypermobility and digestive issues often go hand in hand, lucky us. :p My hips aren't hypermobile as far as I know, they do have confirmed arthritis - not sure what type though, so I'm going to a rheumatologist (finally - after a 4 month wait) in July. I'm glad to hear you don't have arthritis.
 
Maree-- Have they check for porphyrias when your son is having extreme pain? It's one of those really rare diagnoses, but it can cause attacks of severe abdominal pain.

Bozzy-- I have Chiari Malformation too. :) (Well, I'm not smiling that we have it-- which is a bummer-- but it's nice to know that someone else understands.)
 
Cat-a-Tonic said:
Aw, Lenatilde, that sounds awful. I hope you can get everything straightened out soon. Keep us posted as to what happens with the GP tomorrow. Good luck! Will you get your calprotectin and biopsy results tomorrow too?

I'm a bit hypermobile too, mostly just my elbows and knees as far as I can tell. It seems to me like hypermobility and digestive issues often go hand in hand, lucky us. :p My hips aren't hypermobile as far as I know, they do have confirmed arthritis - not sure what type though, so I'm going to a rheumatologist (finally - after a 4 month wait) in July. I'm glad to hear you don't have arthritis.
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I blimmin better get things sorted soon - I'm wasting away! Not :) but I'm almost overweight rather than morbidly obese! Huzzah!

My GP rang and let me know my calprotectin was 308 - so, not massive but definitely raised. I most likely won't get my biopsy results for another week or so. Darn.

It is pretty interesting about hypermobility and digestive stuff... I wonder if there have been any good studies into the link? I am unfortunately officially a 'dioxin exposed person' in the Ministry of Health's records here - I grew up in an area where agent orange was produced and apparently most likely ate a bunch of dioxin over my childhood. I'm pushing for folk to try to look further into whether this has caused my health stuff - my little sister is pretty unwell often, too.

Yay for getting you into a rheumatologist, Cat - not long now! do make sure you let me know how it goes. :hug:

xLT
 
How's everyone feeling today?

Well my dr said my colonoscopy looked normal but she's taken some biopsies. My abdominal ultrasound came back normal. I had my pelvis ultrasound yesterday which was terrible because I had to consume so much fluid my pain was so bad I was crying :(

I dunno why but I get so frustrated when people say "oh that's good" when I get a negative result back, it's like well yes but when your still in agony, losing weight and not been able to eat certain foods its kinda still sucks.

I've been ordered to go have a scan of my gallbladder a week Friday.

Makes you think it's all in your bloody head when everything seems to come back as "normal"
 
Lenatilde said:
I blimmin better get things sorted soon - I'm wasting away! Not :) but I'm almost overweight rather than morbidly obese! Huzzah!

My GP rang and let me know my calprotectin was 308 - so, not massive but definitely raised. I most likely won't get my biopsy results for another week or so. Darn.

It is pretty interesting about hypermobility and digestive stuff... I wonder if there have been any good studies into the link? I am unfortunately officially a 'dioxin exposed person' in the Ministry of Health's records here - I grew up in an area where agent orange was produced and apparently most likely ate a bunch of dioxin over my childhood. I'm pushing for folk to try to look further into whether this has caused my health stuff - my little sister is pretty unwell often, too.

Yay for getting you into a rheumatologist, Cat - not long now! do make sure you let me know how it goes. :hug:

xLT
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This is really interesting to read. I have ehler-danlos syndrome type III (hypermobility) where genetically our collagen is made rubbish. The digestive tract is basically mostly collagen so often hypermobile patients suffer functional digestive problems (IBS, weak pelvic floor etc) but I put the query of crohns and EDS to the dr answers section on here because my eds an suspected crohns both come from the German side of my family.
 
BluebirdInLove said:
How's everyone feeling today?

Well my dr said my colonoscopy looked normal but she's taken some biopsies. My abdominal ultrasound came back normal. I had my pelvis ultrasound yesterday which was terrible because I had to consume so much fluid my pain was so bad I was crying :(

I dunno why but I get so frustrated when people say "oh that's good" when I get a negative result back, it's like well yes but when your still in agony, losing weight and not been able to eat certain foods its kinda still sucks.

I've been ordered to go have a scan of my gallbladder a week Friday.

Makes you think it's all in your bloody head when everything seems to come back as "normal"
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I feel the same. I've been in hospital since Friday night through the pain & finally getting a colonoscopy this Friday (calprotectin 220, bloods normal, CT normal) and all I can think is "they're not going to find it" it's far more scary than anything medical they could do to me. I DESPERATELY want them to find it - not because I want to be ill but because I AM ill so just give it a name & start helping me manage it. At least the gastro said if the colonoscopy comes back with no help then he will run more scans. I'm terrified they'll find nothing, tell me I'm fine and ill be abandoned despite all the hideous symptoms. It's so reassuring reading the posts here, reassuring and upsetting in equal measure. Just as long as they don't give up on us all :)
 
Cat-a-Tonic said:
Cindy, I'm glad to hear that the surgery will make your prognosis better! That's definitely a big positive out of this whole situation! But yeah, the thought of being awake during surgery definitely is scary. I am glad there will be someone there talking with you the whole time, hopefully they'll be very good at distracting you from whatever the surgeon is doing.

lsgs, it sounds like you're over the food poisoning then? Do you think the food poisoning triggered this flare? Good luck with the GI appointment and the MRI results. Do you like your new GI? I remember you having some pretty awful complaints about your previous GIs.

Bozzy, I get crazy mood changes when I flare too. Mostly I cry at everything - I've literally cried at TV commercials ("There are sad-looking puppies on TV... sob!") and I've cried at just the thought of calling my mom or calling the doctor. And for the first like year and a half, I cried every single time I had a doctor appointment (my GI knows to keep tissues handy when I have an appointment!) My hubby absolutely cannot understand it (I know it's irrational) because he feels like crying is worthless and that I should get angry instead "because at least anger is a productive emotion" according to him. (How is anger productive? I still don't understand that one.)

How's everyone else today? I've been trying something new, I'm trying to cut out carrageenan from my diet after reading a few threads on here talking about how awful it is (apparently it's a "natural" additive that's in a lot of things, but it has caused UC in lab rats and is probably terrible for humans too). I switched brands of almond milk, that was an easy one. But I had been drinking Ensure or Slim Fast for breakfast, and those both have carrageenan. There are very few supplement drinks that don't contain carrageenan, as it turns out. I tried some "south beach diet" supp drink this morning, but it has whey protein in it which I was leary of. Most of us with digestive issues don't seem to tolerate whey protein very well for some reason, at least based on anecdotal evidence from the diet & fitness forum. So anyway, I drank that new drink this morning, and I've been to the bathroom with looser stools about 6 times since then. I need to find something else. I think I will try Ensure Clear next, as that also has no carrageenan, although I've heard the taste is horrible. It's kind of expensive too. Hmph.
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Whey protein = that'll be because it's milk protein. Try whey isolate, which is lactose free :) myprotein.com is where we get it x
 
Little Bear and Bluebird, I can relate completely - I've been there with the negative test results, it just seems so wrong when the tests all say you're fine but you absolutely know you're not fine! I haven't had a test show anything yet, going on 4 years into my illness now. The key is, be persistent - don't let them tell you it's IBS or it's all in your head or anything like that. Find a doctor who takes you seriously if you don't already have one. My GI and I have had some ups and downs, but I know he takes me pretty seriously - he once said to me, "I know your pain is real, I know your illness is real, we are just having a lot of trouble finding it." Basically, I pushed him for every test possible, and along the way we ruled out a lot of other stuff (RA, Addison's, Lupus, etc) so right now I have a pseudo-diagnosis of IBD based on the fact that we've ruled most everything else out and also the fact that I respond to IBD meds. I had begged to try IBD meds (starting with prednisone) and it worked, so my GI tried some other IBD meds on me (Entocort, Asacol, Delzicol) and those all worked too and I'm in remission because of them. So long story short, I didn't give up and I fought really hard on my own behalf, and because of that I'm getting proper treatment and am in remission. I still don't have solid answers but I have a good idea of what I have. So, even without a proper diagnosis, it doesn't mean you have to suffer. Keep fighting ladies, you can do this! Normal test results do NOT mean you're not sick, so keep up the fight!

Little Bear, that's interesting about how your EDS and IBD genetics all come from German ancestry. I'm mainly of German descent too, my grandmother is I think 100% German in ancestry, and it was her father who had ulcerative colitis. He's the only person I know of in my family with IBD, so I am fairly sure I get those genetics from him. The hypermobility, though, I have no idea. I seem to be the only hypermobile person in my family. I'm the only chronically ill one too, I'm not really sure how that happened.

Lenatilde, oh my goodness, agent orange??? I've only heard of that, I don't even know exactly what it is except that it's like legendarily bad. Wow, I would imagine that would cause some trouble for you! Poor thing, that's just awful.

Little Bear, that's interesting about whey protein vs. whey isolate. I picked up some "Ensure Clear" yesterday as it is carrageenan free - it says it contains "whey protein isolate". So far it hasn't upset my guts, although I only drank about 1/3rd of the bottle because it tastes pretty awful. :p It's expensive, but if I only drink 1/3rd of a bottle a day, I'll save money in the long run! Ha ha. I think I need to start making my own drinks in the morning, either juicing more or making smoothies.
 
Chickadee - wowzers! Where are you at with your chiari?

Lenatilde - I have heard that this whole agent orange stuff is related to chiari (though I havent heard of agent orange in the uk) and chiari with EDS hypermobility type are commonly related. Weird huh? I am hypermobile - but not been diagnosed as EDS.

Bluebird - like cat says.. totally get where you're coming from in regards to test results coming back negative. Its hard when biopsies/tests dont match your symptoms. When you get a diagnosis its like validation about how you feel.. and that its not in your head

Little bear and cat - so weird about the german ancestry! I have it in mine too.. down my mothers side. And its my mums brother who has ulcerative colitis. However.. down my dads side is where my hypermobility and joint issues come from. But I guess both america and the UK are very mixed roots anyway :)

I cant wait for you to see the rheumy cat! You will be a human pin cushion though for all the bloods they take haha..
 
Bozzy, yeah, I'm definitely very mixed roots! Mostly German, but some English, Spanish, Irish, Scottish, Czech, French, probably other stuff I'm forgetting. I'm your standard American mutt of varying European ancestry. :)

I hope they don't take too much of my blood at the rheumy appt. When I first got sick, they took like 6 or 8 vials of blood. Maybe it's because I was so sick already, but I nearly passed out from losing that amount of blood! I need all my blood, I don't do so well without it. :p July 10th is the rheumy appt so I will keep you guys posted. I hope the rheumy is good - I googled his name and didn't come up with much, so we shall see.
 
Oh dear, maybe because you are quite settled they might not take much?
But they deal with most auto immune problems. So they do lots of blood tests to check a variety of things. Every time I go its at least 4 vials...
 
Ps: starting to worry. My stomach pains are becoming more regular.. I have a few ulcers.. plus an ulcer in my nose. And my shoulder and knees have started doing the "heavy aching pain" too. Bleurgh
 
Are you on a lower dose of sulfasalazine now, Bozzy? I'm going by memory here, but I believe sulfasalazine is basically sulfa plus mesalamine/mesalazine? And I also believe I've read some on the forum say that they have issues with or even allergies to sulfa, but do fine with mesalamine. I don't know if you want to switch meds this close to your surgery (probably not), but after the surgery, you might want to ask about changing to one of the mesalamine formulations like Pentasa, Asacol/Delzicol, Lialda, etc. Although then again, you said the sulfasalazine is helping your joints, right? I don't think mesalamine would help your joints - it doesn't help mine. But it keeps the guts quiet for the most part. Hmmm. It's difficult to know what to do with multiple different illnesses going on - I guess all I can say is, I'm glad you're being referred to a new GI!
 
Yeah im on a lower dose.. and I came off them for a few days to see they were affecting my bowels.. and it made no difference. So I went back on them.. but I think the 5 day break has upset my joints and now all the ulcers have appeared and stomach is worse.
I will ring the rheumy nurse to see if I can up the dosage.

I really dont know.. with taking the propranolol aswell.. I dont know whats going on. Just fed up.
I dont know about other meds. Technically im not on any bowel meds.. just joints and headaches. But I'd hoped it would help my bowels too...
 
Arrrgh my GI appointment lasted about 3 minutes last night. That's the problem with being the 6:40pm last appointment of the day! The doc wants to get home! Went something like this.

Your MRI is normal
Good
How are the pancreatic enzymes working?
They're working well but I'm still having bleeding/diarrhoea/some pain even though it's less
Good. Now go back to see your other GI
What do you think about having 3/4 high calprotectins?
I don't know what to think about that, bye!

That is the extent of conversation I had with him and he thought he was seeing me for second opinion not to actually switch GIs. So I don't know what to do now. I know which GI I want to stick with (and after discussion with my husband he agrees) but I'm not sure if it's possible to do that now, and I don't want to look like I'm just seeing different doctors for funsies. lol.
 
Oh no! Sorry to hear that :(
Hopefully your original GI bucks his ideas up..
When do you next see him?

I had my pre-op tests this morning. Fingers crossed all tests are fine for me to go ahead with the surgery. Getting very scared now :/
 
Isgs - I find it so frustrating when docs don't give you the time you deserve during an appointment! As much as they charge and as important as your health is they should be giving you every moment you need and all the answers you want. Meh! I hope you find a good one.

Bozzy, my fingers are crossed for you. I'm thinking good thoughts!
 
Bozzy-- I'm not doing anything to treat the Chiari right now. I'm not sure what symptoms are caused by Chiari and what symptoms are caused by other things. I do have migraines though. Also, I have always walked on my toes, and I think that's a Chiari symptom. It's definitely a neurological sign. What symptoms have you had from Chiari? What is going to be done in your surgery?
 
Little bear:
Well we are all here for each other whatever the outcome. It's comforting to know we aren't alone but its still annoying.

Cat:
Bloody hell :( 4 years?
My GI seems to be taken it seriously and she's concerned about me.
 
Thanks lenatilde, mccindy for your support :)

Chickadee - I know what you mean about the symptoms.. they are so vague - I dont know which symptom relates to which illness! Im having the decompression surgery purely based on my val salva headaches. I was offered the surgery a year ago.. so I have been deciding for a long time. But the val salva pains are so bad now. Sometimes I only have to move my head slightly and I get the severe head pain. Also my latest MRI showed a pre syrinx (central spinal fluid had increased at T1/T2) which has developed in just 10mths!! So the surgery is also a preventative.. as dont want to develop an actual syrinx :(
 
Bluebird, yes, well going on 4 years. It'll be 4 years in October so I guess it's closer to 3.5 years at this point. I read a statistic once that said it takes an average of about 10 years for illnesses like this to be diagnosed. So I guess I'm not in any rush! My aunt (related by marriage) had symptoms since she can remember, 30 years at least, and she just got diagnosed with Crohn's recently. Sometimes they just can't find any sign of it until scar tissue develops, I believe that's what happened with my aunt. It sucks, and I hope nobody here has to wait that long because that's just insane.

Chickadee, interesting about the toe walking. I believe some autistic people toe walk as well? I have suspected for awhile that I might have Asperger's, and I typically curl my toes up when I walk and I think those two things are related. I do a lot of other weird things too. But like you said with Chiari, I'm not sure if possible Asperger's is causing some of my weirdness, or if it's OCD. There's a lot of OCD in my dad's side of the family (dad and grandma are hoarders, grandma is also a hand-washer) and I'm pretty sure I have that too. So I don't know. Let me know if you find out what's causing the toe-walking, I'd be interested to hear.

lsgs, what a crappy appointment! I swear, you have the worst luck with GIs, you've been through 3? 4? and they all sound pretty bad. What are you going to do now?

Bozzy, did you get your pre-op test results back yet? Also, what is a syrinx? You may have explained it before (my memory isn't great these days) but it sounds bad, so hopefully the surgery lets you avoid it. How are you feeling today?

As for me, I just don't know what to do or think right now. I'm supposed to be in remission - but yesterday, for the 3rd time in a month, I passed blood in my stool. I am not normally a bleeder so this is really odd and worrisome. It's never a huge amount, and yesterday it was hardly any, it's always bright red, but it's not from a fissure or a hemmie (I went to the doctor when it started, and they ruled out hemmies & fissures, and did stool tests which ruled out bacterial infection). So I just don't know. The first 2 times it happened was right after a bike ride, so I stopped riding my bike. But yesterday it happened again, and I haven't been on a bike ride nor have I ridden my stationary bike recently. I'm so confused. Is it something I'm eating? Is it because I'm pushing myself too hard with exercise (even though I stopped riding my bike)? Is it a side effect of medication? Is it a flare, a fistula, cancer, something else? My GI feels like I either have Crohn's or microscopic colitis - so is that in remission but I developed UC on top of it? I have no idea! It's so confusing and I hate it. I see my GI in August and I'm sure that if this is still going on then, that he's going to want to order more tests. And I'm just exhausted, I don't want more tests. I just hate every part of this. Thanks for letting me vent and for coming to my pity party, I know you guys understand! :) Big hugs to all. I hope everybody has a good weekend.
 
Yo Cat,
Long time no speak.

Sorry you are feeling fed up and worried. If your GI thinks it is Crohn's, it could still be that but affecting your lower colon/sigmoid. It couldn't be from microscopic colitis because by definition the damage is microscopic so there should be no bleeding. Is the blood mixed in with the stool? is it just when you wipe? is it painful when you pass a BM?
It may be worth getting your GP to check your bloods and also get a faecal calprotectin- these are non invasive and can give lots of information. If it continues perhaps ask for an earlier GI review to get some answers.
I know how you feel about tests and I certainly am VERY bad at avoiding them, but maybe getting the tests done when there is active bleeding is the best time to do them?
 
I think I will only find out my pre-op results if there is something wrong.
A syrinx I a pocket of fluid/cyst in your spinal cord.. which does damage from the inside of your cord and could end up paralysed.

Im glad you are only bleeding small amounts.. but its is worrisome if it isnt normal for you.. can you not be seen earlier than august? Could be good to have a colonoscopy while you are having the bleeding xx
 
LittleMissH!! I've missed you, how are you? I know you weren't doing very well for quite awhile, are you any better now?

I did already have a GP check my bloods, everything was normal (well, sodium was slightly low and potassium was borderline, but that's typical for me so I consider that to be my normal). They did stool tests but I don't think they checked calprotectin; they did look for bacterial infection (salmonella, campylobacter, etc) and found none.

The blood is mixed in with the stool. I've had fissures in the past and with those, the blood was only on the TP. This is not like that so not a fissure. It's not painful when I pass a BM. The only other symptoms I really get are, a bit of dizziness (presumably from the blood loss), a very general unsettled feeling in my lower abdomen, and sometimes nausea accompanies the bleeding episodes. But I'm not getting any of my typical flare symptoms - no LRQ-specific pain, no joint pains aside from the usual arthritis pain, no night sweats, no chills. My stools are looser but not usually diarrhea with these episodes. So I don't think it's a flare - I feel fine most of the time, but every couple of weeks I seem to be getting these bleeding episodes all of a sudden. It's very odd and definitely new for me which is why I'm a bit worried. It started in late May so just about a month ago.

I did start taking Delzicol recently, that's the only thing I can think of that's really changed (I was on Asacol, but it was discontinued here in the US so I had to switch). I probably started on Delzicol in late March or early April, so about 2 months prior to when the bleeding started. I am just not sure if I could suddenly get a bleeding side effect 2 months after starting a new med? I know rectal bleeding is listed as one of the potential side effects of Delzicol, but for it to happen after I've been on it for awhile? That doesn't really make sense to me so I don't think that's it.

Bozzy, I seem to recall that my GI was going to be out of town for most of July, which is why I can't get in until August. He usually can bump me up to a sooner appointment if need be, but I think he's going to be away. I could always see my GP if need be, but honestly I think I'm fine waiting it out until August. I'm in no rush to have another scope - and if the bleeding magically stops before Aug 7th (the wonderful power of denial, ha ha) then it'll be a non-issue. The bleeding usually only happens like 1 or 2 days every couple of weeks anyway so I don't know if I could manage to schedule a scope on a bleeding day.

Plus, and I know this is stupid, but I haven't met my insurance deductible for the year yet, so a scope is going to cost me some money. I'm already in medical debt, I'd really love to be out of medical debt, and I'm not in a big hurry to rack up more debt. My hubby had some warts removed at the GP recently and our insurance decided not to cover it, so there's $250 I'll never see again! You Brits are so lucky with the NHS, you'll never go bankrupt or become homeless because of medical debt. That's one of my biggest fears, living in this country. Even with Obamacare, things will be a little better, but still not great. Anyway, rant over. Long story short, I can't really afford a scope right now.
 
Hi Cat, If the blood is mixed in with the stool then it is much less likely a fissure particularly if no anal pain with BM. Now would be a really good time to do tests as they will hopefully be able to see a bleeding point. You should email your GI and ask for his advice and earlier appointment-and explain about you insurance issues-perhaps he can advise you of alternatives...it's a sorry state of affairs when you can't get the right help because of insurance. we are very lucky to have the NHS despite what some may say.

I haven't had the best time so not been on here for a while, as it can get a bit depressing for people when you never have good news. Been in hospital several times in the last 6 months for either septicaemia from the immununosupression or crohns flare due to having to temporarily stop humira/azathioprine because of sepsis.
I got out a couple of weeks ago after trying to exsanguinate from my small bowel and needed 7 units of blood in a 24hour period...ended up being transferred to St Marks in London and was in hospital for ages. Very scary experience really, particularly for my family.
But I saw an eminent IBD consultant and am on high dose treatment now. I just need to avoid anyone with infection. I really hope I can now manage to stay out of hospital for at least 3 months!!

But back to you, I would try and get hold of your GI.

Hope everyone else on here has a good weekend

LMH
 
Thank you, LittleMissH. I do trust your opinion so I just emailed my GI. Like I said in my earlier post, I'm not sure if he's even around, I think he's going to be gone for about a month. But I just went to the gym and had a pretty awful workout. Anytime I tried to do anything involving my abdominal muscles (even the triceps machine), my body sent me a very strong signal saying I should stop! I remember when I first hit remission, my body was practically screaming at me to eat and to exercise, so I did both, and I felt great. Today in the gym, my body was practically screaming at me to rest. I hate this. So I'll let you guys know if my GI responds. If he's not there, one of his nurses usually responds to his messages.

I did have one more thought while I was in the gym - I have severe GERD and I have to take anywhere between 6 and 10 Tums (antacids) whenever I work out. I also take 300 mg Ranitidine before a workout, and another 300 mg Ranitidine before bed. And on top of that, I take 40 mg Nexium first thing in the morning. That amount is necessary to keep my symptoms at bay and so that I can exercise. And I exercise almost every day. But maybe all those reflux meds are causing me to bleed? I did a quick google search of "Tums and rectal bleeding" and came up with a few hits. So maybe that's the culprit? If so, though, that's a problem. I cannot work out without taking a bunch of antacids - I will literally puke within a matter of minutes if I go into the gym without Tums in my system. And if I can't work out, I am going to get really depressed. I can't not exercise. Ugh, no matter what is causing this, I don't like it.

Wow, that was fast! As I was typing this, I got a voicemail - apparently my GI's clinic already saw my email and are calling me for more info. I'm going to return their call in a little bit - once I pull my emotions together. Crap like this makes me cry so easily, it's ridiculous.

Edited to add: Pulled myself together & called my GI's office, the nurse wasn't available when I called so I'm waiting for a call back. It's nearly 4 PM on a Friday so I'm not sure if I'll even get a call back today or if I'll have to wait till Monday.
 
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Tums and antacids don't cause bleeding. They can cause diarrhoea but not bleeding.

Don't fret too much, its highly unlikely to be anything sinister and more likely IBD related. Or non painful internal haemorrhoids. You may even end up with a proper diagnosis...
I hope you get a call back before the weekend as otherwise you will fret until next week.
Don't worry about crying, a natural response to anxiety, it proves you are human and not a psychopath ;-))
 
The doctor that I saw last month ruled out internal hemorrhoids (she did a rectal exam with her finger and also stuck a scope in just a little bit - did not see nor feel any hemmies, did not see any cause of bleeding). So I know it's not that. I honestly kind of think it's not IBD either - I've been in remission for about 2 years now and I am not having any flare symptoms. I never bleed in a flare anyway, and I'm not having my typical flare symptoms (night sweats, chills, etc). If it is IBD causing this, it's behaving very differently than it ever has before. I know that IBD is capable of doing weird things and causing new symptoms, but this just doesn't feel like a flare to me. IBD may be a contributing factor in all this, but I don't think it's the main cause of the bleeding.

It's about 4:20 PM now and no call back yet. I did get a call - but it was hubby just asking how I'm feeling and what do I want for dinner. No call from the nurse yet.

Edited to add: It's 4:45 now and I just talked to the nurse. She took all my information in detail and said she'll give it to my GI and ask him what he wants to do as far as bumping up my appointment etc. But she also said, he's not in the clinic today so I definitely won't hear back until at least Monday. Oh well, it's out of my hands now, the ball is in my GI's court. He has called me from his home at odd hours before so it's possible he'll call me himself before Monday.
 
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Cat-a-Tonic said:
Bluebird, yes, well going on 4 years. It'll be 4 years in October so I guess it's closer to 3.5 years at this point. I read a statistic once that said it takes an average of about 10 years for illnesses like this to be diagnosed. So I guess I'm not in any rush! My aunt (related by marriage) had symptoms since she can remember, 30 years at least, and she just got diagnosed with Crohn's recently. Sometimes they just can't find any sign of it until scar tissue develops, I believe that's what happened with my aunt. It sucks, and I hope nobody here has to wait that long because that's just insane.
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Oh good lord :( that's just crazy , poor you and poor auntie, god bless her. I have heard it is hard to diagnose but I didn't realise that it could be that long. I've lost like 13 lbs and counting. I mean what I can eat is healthy but its noway to live when your restricted.
Shame we don't all have a wand that we could use to magic are issues away.

It's all about playing the waiting game I guess xxx
 
Bluebird, funny you should mention the waiting game! My GI just called me. He said I should continue to watch my symptoms for 2 more weeks, and if I have any more bleeding then he'll do a flexi-sig on me to try to find the cause (no bowel prep required though, so yay for that). He also told me not to lift anything heavy for a couple of weeks - no weight lifting, argh, no! I think I might have to defy doctor's orders on that one. I can't not exercise, it's the only thing keeping me human. I guess there might be a LOT of yoga in my future since apparently I am not allowed to do any other type of exercise now...

I'm sorry you're playing the waiting game too. What's next for you, are you waiting for test results or are there more tests coming up? That amount of weight loss isn't good - I lost a lot of weight too when I was really ill, about 20 lbs over the course of a year (I was thin to begin with so I couldn't afford to lose that amount, it got scary!). At my worst, I was eating piles of potato chips to try to gain weight, but I just kept slowly losing more weight. At first it's almost fun, it's like, oh, I can lose weight without even trying? But the novelty wears off quickly and nobody wants to lose weight like that. I know the feeling and it's awful. I hope you can get things figured out soon and stop losing weight. Hang in there! Big hugs.
 
You guys are talking about weight loss. When I first became ill in the spring of 2008, I lost 35 lbs in about four months. I was down to 89 lbs! Thankfully, I've gained about 10 lbs since then (and am not losing more), but I'm still underweight.

Bozzy-- I really hope your surgery helps with the headaches and that it prevents future problems!

Cat-- Toe-walking is a very common symptom with autism (and like I said, other neurological problems). I'm definitely not on the autism spectrum, but I used to work with children with autism and other disabilities. My co-workers would sometimes tease me about my toe-walking (that I walked just like our kids). I'm sorry you're having GI bleeding. :( That's what prompted my most recent colonoscopy, but no specific cause was found. :( I hope yours resolves quickly or that it is diagnosed.
 
Cat, Thats great news that he rang you. He seems like a really good GI- not many will ring you at home at all hours. I think you and I are both lucky with our GI's.
Yay for no prep, and siggy will be cheaper....though hoping that you don't have any further bleeding and no Ix are necessary.
 
I feel horrible today. I'm starting to wonder if I am flaring. My symptoms are all so different from my typical flares, though. I usually never pass blood. I got 9 hours of good, uninterrupted sleep last night - but woke up feeling SO fatigued and exhausted. I usually get fatigued in a flare, but that's because I am usually up all night going to the bathroom. I didn't get up even once last night, so why am I so freaking wiped out? And this is weird, my lips seem to have some sort of involvement too. For the past few days they've been super dry to the point that I'm losing feeling in my top lip. That's just weird. And I'm nauseous, which is the only symptom typical of my flares. My usual flares involve night sweats, chills, joint aches, many many bathroom trips. This so far has none of that. Very weird. I'm wondering if I should push my GI for a proper colonoscopy rather than flexi-sig. I guess I have a couple weeks to think about that.

LittleMissH, yes, my GI is pretty good most of the time. I'm glad he called me yesterday so we could figure out a plan of action. If I'm flaring, though, this is going to be a miserable 2 week wait. If things get worse, I'm not going to wait 2 weeks to call him back, I'm going to be on his case sooner than that. I was in remission for 2 years and I'm eager to get right back into remission!
 
Oh cat :( so sorry you are not feeling very well..
I know how you feel with the fatigue.. but as we mentioned before - it will be worthwhile getting your B12 checked. As I think that is why I get so fatigued.. will see if the injections help.

My doctors said the bleeding was a "tangle of arteries" that had ruptured. But that was a lot of blood initially.. followed by small amounts mixed in with the mucus and stuff. And they fixed that with just a flexi sigmoidoscopy.. as it was located very low down. So maybe this is what he is thinking? Xx
 
Cat personally every time I have a 'flare' my symptoms do change a bit, I might have slightly more nausea, more tired etc. For me each flare feels different, even if the symptoms are roughly the same. It might be IBD but you're just flaring in a different way. I'm kind of glad you're seeing the rheumatologist soon since s/he'll rule out causes for what you're experiencing too. I tend to feel stupidly tired a lot of the time and sleep never helps, but I do have an autoimmune disease so it's to be expected really.

And in answer to your question I have NO IDEA what to do next. GI 1 is the guy I don't want to see anymore who I keep getting bounced back to, GI 2 is the best of a bad bunch and GI 3 is the one I just saw. He got me on the enzymes but he's got no time or empathy. I'd like to make a permanent switch to GI 2 but you risk looking like a nutter who's doctor hopping.

I met with a friend who I haven't seen in about 10 months (yay for getting a shred of a social life again) and she told me, despite us knowing each other for 8 years through uni and everything, that this is the worst she has ever seen me look :( she said I looked really unhealthy and 'someone has to do something about it'. Bit bummed :(
 
Thanks guys. Bozzy, the bleeding is so sporadic, it's hard to say what could be causing it. I'll bleed for like 3 BMs in a row and then nothing for a week. Then I'll bleed for a day and nothing for 2 weeks. It's really odd. I'm not sure what would cause bleeding like that?

lsgs, usually exercise helps my energy levels and I feel more energetic after a workout. But particularly this week, I haven't really been able to do a full proper workout - maybe that's why I'm so fatigued? I don't know. I'm sorry to hear your friend thinks you look awful. :( During my first year of illness, I lost a bunch of weight and was so pale. When I hit remission, I gained my weight back and got the color back in my face. Nobody had said to me that I looked terrible when I was flaring, but once I was in remission, multiple people commented that I looked so much better. So hopefully everyone will say how great you look once you get everything figured out and under control!

On that topic, I haven't lost any weight at all during the last month, in spite of the bleeding my weight has remained steady. The color in my face is still good too. So I don't look like I'm flaring. My mom and brother came to visit me today, and I was able to completely hide my symptoms from them and act normal. Unfortunately my brother acted normal too, which for him means he was stoned and a huge jerk. He picked a fight with my mom and I can tell the stress of that is affecting my guts a bit. But I feel a little better than I did this morning. So I'm just not sure if I'm flaring or what is going on.
 
I would think that it's possible that the bleeding could be due to hemorrhoids or a fissure, even though your doctor didn't see/feel this a month ago, as these could have developed more recently. Of course, it could also be some type of ulceration or a polyp. It's so hard to know....
 
Hello All

so sorry its been a long time since I have been on, we have just had so much going on with family stuff

but I have had a diagnoses............................ I have early onset of Crohns of the duodenum and stomach
so a rare one by all accounts ?? lots of other GI want to study me as they can see the damage and but hard to find the main point of origin, all the blood and stool samples have come back with all the markers for Crohns but the MRI and Colonoscopy show nothing they have now realized that its because I have early onset further up the system, so therefore they have caught it quicker enough to get me stabilised quicker I am having shorter flare ups now as the last one lasted 9 months I am now only have a 2/3 bad days every few weeks so all in all not to bad

I hope your all ok

sending lots of love
Stacey
aka the stranger lol
xxx
 
Hi Stacey, welcome back, and I'm glad to hear you've finally gotten some answers! I believe LittleMissH actually also has Crohn's higher up in the digestive tract, in a similar area as yours (please correct me if I'm wrong LMH!) so she might be able to give you some information and advice. My understanding is yes, it's not very common for Crohn's to manifest primarily in that area. I'm glad lots of doctors are suddenly paying attention to you, I hope this gets you some really good treatment & relief. What treatment are you on so far?

Chickadee, I really don't think it's a fissure or hemmies - I'm having random stabby pains all over my abdomen including the upper abdomen. It doesn't feel like the rectal area is even really involved! I haven't passed any more blood just yet, but I have gone from soft-solid stools to having some d. Something is definitely up and it's more than hemmies/fissure.

I've done some thinking over the weekend - my rheumy appt is July 10th, so I'm just going to try to concentrate on that for now, and if things are still bad guts-wise, I'll call my GI after the 10th and request a colonoscopy. I don't know if a flexi-sig would see the source of the bleeding, plus it's been over 3 years since my last c-scope, so I think it's time for another one. Not looking forward to the prep nor the cost, but I think it's something that has to be done.
 
I hate colonoscopies, but I almost feel like flex-sigs are not all that helpful because even if it's normal, you don't really know about the rest of your colon. Of course, if it's abnormal, then you would have some answers and skip the colonoscopy. Still, I think you're probably wise to consider a full colonoscopy if things haven't improved.

I have rheum. appointment on July 12. It's my first time seeing any rheum., but I'm being sent to evaluate/treat my low bone density. I have osteopenia and am almost at osteoporosis....which isn't great when I'm 35. I'm hoping that this will be a good rheum., and maybe she'll have some thoughts on my whole health situation. I don't know what she's going to do about the bone density thing because it's so tied to everything else. Are you going for joint pain or just for everything in general?
 
Chickadee, it'll be my first time at a rheumy too. I'm seeing a rheumy because my primary care doc diagnosed me via x-rays as having mild arthritis in both hips (he says both are mild, but the right hip causes me way more problems than the left). I got diagnosed with arthritis a few years ago, and I saw an orthopedic surgeon back then who was clueless. Then I went to physical therapy and that helped a lot, so I didn't pursue anything further for awhile. But over this past winter, things got a lot more painful, so I finally got referred to a rheumy. I don't know much at all about my arthritis - what caused it, what type of arthritis is it, etc. I know IBD and arthritis often go hand in hand but it's so difficult to know anything when both my IBD and my arthritis aren't fully diagnosed. So I'm hoping the rheumy can give me some kind of answers there at least as far as the arthritis goes. I'm 33 so I can completely relate to being too young for this kind of thing! I hope you can get some answers on the 12th, good luck!
 
Hi Stacey, Cat is quite right. I have gastroduodenal crohn's. Also of the small bowel.
I have been told I am unique in having such severe upper GI Crohn's as it is very rare in caucasians and even more rare to be as severe....I don't like being unique.
Generally it can be controlled with drugs called proton pump inhibitors (PPI's) and occasionally other immunomodulators such as azathioprine/6MP.
Typically in my case despite 80mg of omeprazole (a PPI -usual dose 20mg) the ulcers were becoming deeper, azathioprine helped a bit, though eventually I was put on Humira which has worked well for the GD Crohn's.
It is very uncommon to require biologics though. Hopefully you will settle with medication. What have they started you on? If you have any questions, feel free to ask.

As for me, Just seen gastro today and he has now added in methotrexate on top of double humira (for small bowel) because my HB was creeping down again, so a bit fed up about that. But I had put 1 kg over the last 3 weeks which is great as my weight had dropped a lot in my recent hospital admission. So the double Humira is helping. Hopefully adding methotrexate will finally bring remission.
 
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LittleMissH, thank you for the info. I knew you were unique for having Crohn's higher up in the digestive tract, but I didn't realize that it's rare for it to be so severe. I'm so sorry to hear it, and I hope the methotrexate works well and gets you feeling a lot better. That's great news about the Humira working and about the weight gain! :)
 
Hi all

I've been quietly freaking out and watching everyone's posts. Am working from home today - I needed to be close to a comfortable bathroom... And had to get more blood tests done (bruising easily) and pick up some disgusting powdered food my GP prescribed, as well as more codeine.

Next GI appt on Monday. From there, probably colonoscopy and endoscopy to check out why when I eat it feels like food is stuck in my throat. Got so frustrated on Sunday - went to a movie with my husband and drank rather a lot of red wine... Followed by a whopper from BK. Yup. Man. A bad idea after eating only my miso/udon soup for weeks :( I don't even like BK. self-sabotage ahoy. It's been an unpleasant couple of days.

Just have to get through the week.

Love and thoughts to you all.:ghug:
xLT
 
@ StaceyC96 - im so glad you have some answer, but sorry to hear it is Crohn's :( but at least you can have some treatment now to help with your symptoms :hug:

@ cat - that makes sense to wait and see the rheumy first - and i agree with chickadee, flexi sigs are good to treat something quickly if they think it is lower colon/rectum. but just like mine - they found the bleed (fixed it) then i still had to have a colonoscopy to see if there more issues further around lol!

@ littlemissh - good luck with the methotrexate!

@ lenatilde - sorry to hear you have had a rough few days :( good luck with your GI appointment next week. have you had colonoscopy and gastroscopy before?

as for me, i saw a different GP this morning. and the appointment went really well. He has booked me in for a double appointment next tuesday, and he is going to look at my full history beforehand.
He said the inside of my nose is inflamed (i have no blockage, runny nose, sneezing... just very very sore) and he doesnt want to "faff about" by prescribing things.. wants to have a good think and let me know next week.

i just cried and said - im fed up. im fed up of spending the last 2 and a half years of having one thing after another go wrong. i am not "acutely" ill.. in other words - i am coping and not in a desperate need of medical attention. so i feel guilty that i am always going to the doctors and they dont find anything wrong - like im wasting their time.

it isnt the doctor's fault - i dont have classic signs of anything. my bloods dont show anything. so i cant expect doctors to know immediately what is wrong. and they have always tested me for things and investigated it. but yet there is something going on, in my body - something inflammatory. but who knows what lol!?
The GP said it makes sense for me to feel this way. and he said it would be nice if i presented illnesses normally. ie: when i had appendicitis, it took 2 months before they diagnosed and removed it. because i was walking around, pain wasnt classic. and i was still eating! so i cant blame doctors for the reason it is taking a long time.

i am just fed up with my silly body playing silly games on me! haha!
rant over. just glad he listened to me.. and i need to accept this is how i am.. and not feel guilty for seeing doctors so frequently.
 
@ bozzylozzy - never before have I had a colonoscopy or gastroscopy... Recently had a flexi sigmoidoscopy, which was bad enough. Thank you for your kind thoughts :hug:

I hear you about the frustration! I had my appendix out almost 13 years ago - there was apparently nothing wrong with it, but they took it out anyway. And no-one ever figured out why I was in so much pain... As soon as I was false diagnosed with rheumatoid arthritis, which got changed 6 years-ish later to fibromyalgia, every complaint I make tends to be "oh yeah... That's yer fibro..." - until my current GP. it sounds like you have a good'un there with your GP :) keep on talking to him as honestly as you have been!

home again, working... My bathroom is really rather cold :ywow:

xLT
 
Hi everyone
As you all know some of my story I have just got a letter from my GI saying I have elevated levels of calprotectin does this mean I have a diagnosis!? Does this mean its IBD not IBS!!??
 
Hi Gabi, my understanding is that high fecal calprotectin means there's some inflammation going on in your digestive tract. It doesn't necessarily mean you have IBD, and most doctors won't diagnose based purely on calprotectin results. But, it is probable that you have IBD since there aren't many things that can cause a raised calprotectin, and at the very least it should cause your doctors to narrow their focus when looking at possible diagnoses. Have you talked to your doctor yet about this? Hopefully they can give you more information and let you know what the next step is in your journey.

Lenatilde, that's interesting your diagnosis changed from RA to fibro, that's quite a jump! As I'm sure you know, IBD and arthritis often go hand in hand, and arthritis is sometimes misdiagnosed as fibro, so it seems odd to me that they changed the diagnosis to fibro. Once you get your digestive issues figured out, I would have your doctors take another look at the fibro/arthritis. How were you diagnosed with RA in the first place - did you have a positive ANA on a blood test? Did they see any signs of arthritis on an x-ray?

Bozzy, poor thing, I'm glad you found a good GP. But I can relate to so much of what you wrote. As you probably already know, I may or may not be in a flare right now myself. I really have no idea. One day my guts are awful and I'm nauseous and dizzy and passing blood, and then a couple days later I'm fine. But I'm not a bleeder and this doesn't feel like a typical flare, but obviously things aren't normal either. My hair started falling out again and my lips are red and peeling, lots of little weird stuff like that which isn't normal for me either (my hair only fell out when I was on Entocort, never because of a flare by itself). And my GI did just what your GP did - he said I should wait 2 weeks and then call him back. Hmph. He also said not to lift anything heavy for these 2 weeks - well, you know me and how I love to work out. I haven't lifted weights since Friday and I'm so anxious to get back to the gym. There's no way I'll make it 2 weeks, my muscles are begging to be put to use. I think I'm going to try to last 1 week and will go back to the gym on Friday - if that somehow causes me to bleed again then at least I'll have the weekend to try to recover. Anyway, I'm rambling again. But yeah, my point was, I totally know the feeling and am going through something similar right now. It's confusing and it sucks! Big hugs to you!

Getting anxious for my rheumy appointment too. They sent me some paperwork yesterday to fill out for my appointment, but it's seriously a lot of work! There are like 6 pages, front and back, tiny font, a million questions to answer! It's like being in school again and having a ton of homework! I also just re-applied for FMLA (I'm not taking any chances in case this is a flare and/or gets worse) so that was another 6 pages of paperwork to fill out. I swear, the sicker I get, the more paperwork there is to do, and the less I feel like doing paperwork. :p
 
@ cat - it was ANA based primarily, and RF on bloods. On that and my history they diagnosed the RA, chucked me in prednisone (which did nothing), left me for a lifetime of pred and pain - and eventually I found a rheumy who was convinced it was fibro rather than RA. since then I've had another rheumy who has backed that diagnosis, and the hypermobility. No x-rays were done to prove initial RA diagnoses. It was rather a palaver, in truth.

Wish I could fill your paperwork in for you - I love paperwork! :)

Gave in and am not even working from home today... Accepted leave without pay and the fact I'm a bit useless. Big pain, to the touch too, in my upper right under my ribs, left under my ribs, and right of belly button. Nauseas, which is ramping up and unusual. Diarrhea back and bad - bright yellow and undigested food (can see my meager lunch from yesterday - ginger root and all!). Codeine, clonazepam, sleeping if I can. Emergency department if I get much worse. Frustration and tears plus plus.

Thanks for listening, lovelies.

Y'all keep being beautiful and strong. Cat - super good luck with the rheumy :hug:
xLT
 
Lenatilde, that's interesting that pred did nothing for your fibro/arthritis. Were you on pred before the bowel issues began? Pred does wonderful things for my guts, I love the stuff! It's like magic, it makes my symptoms disappear and it makes me feel like a million bucks. I'm the opposite though, I haven't taken pred since before I developed arthritis, so I don't know if it'd help my joints or not.

It sounds like you're in an awful flare, and I'm glad you're going to head to the emergency room if it gets worse. Yellow d usually means inflammation - I get yellow d in a bad flare too (haven't had any yet myself in this maybe-flare, knock on wood). Undigested food can be problematic as it can cause a blockage - if you get any symptoms like projectile vomiting, or pain so bad you can't straighten your legs, those are signs of a blockage (so I've heard, haven't had a blockage myself either - again, knock on wood!) - so if anything like that happens, definitely get to the emergency room right away. Hang in there and I hope you feel better really soon! Please keep us posted, worried about you. Sending you a big hug from the other side of the world.
 
I love prednisolone too! Well.. I love the fact it works. . I dont love the side effects haha.
It worked great on my knees.. as did the steroid injection and thats how they diagnosed inflammatory arthritis.

How are you all today? I still feel bleurgh but im going to a hotel spa with my friends tomorrow in london. So im looking forward to that :)
 
So all my scans and tests have come back normal so far. I had a HIDA scan today so will have to wait for those.
I'm still in pain, still can't eat the same things, still having diarrhea or not going at all but I have no bleeding.
I am so frustrated and peed off, ended up breaking down in tears to my hubby before because I'm so fed up.
I know I'm not the only one but its just the tests felt useless even though I know they aren't and people around me have all a sudden turned into Doctors or food police and making comments of "that's weird" -___-

I'm just thinking if they don't find anything in my gallbladder and nothing in the CT scan which my Dr said she will do then what? How are you all coping? Do any of you sometime feel like crying or screaming?

Just tried milk again and nope that hurts but I just wanted to see if I was right.

On a side note I went to the gyno just because I thought I should and turns out I have an abnormal thyroid so have to have that checked out on Monday, I don't think it's related.


X
 
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Bozzy, a spa day sounds amazing, have fun! I hope you are feeling okay to enjoy it and that it's really relaxing and wonderful.

Bluebird, I don't know much about thyroid stuff, but when I first got sick, they did some bloodwork to check my thyroid, as they said that sometimes an out-of-whack thyroid can cause diarrhea and other gastro-type symptoms. My thyroid checked out fine so they ruled that out as the cause for me. I'm not sure exactly what kind of symptoms or what severity of symptoms can be caused by an abnormal thyroid - but it is possible it's causing at least some of your symptoms. Good luck, hopefully they can treat it and it'll get you at least some relief!

As for how to cope with normal test result after normal test result, oh hun, I have been there and it sucks. Pretty much all my test results are normal, on paper I'm the picture of health. :p At one point I pretty much snapped, I couldn't deal with it anymore. I was in a terrible flare, felt just miserable, and couldn't get into my GI or my GP that day, so I saw a different GP in the same clinic. This doctor was horrible - he walked into the exam room, glanced at my chart for all of 2 seconds, and then pronounced "You have IBS. And you look depressed, would you like some Zoloft?" His flippant know-it-all attitude and obvious quackery (who diagnoses someone with depression based on how they look???) just pissed me off so hard. I told him, I think I have IBD, it's not IBS, I want to try prednisone, end of story. I put my foot down and basically demanded pred. He hemmed and hawed and then said, "Well, I think that's a reasonable request to do a trial of prednisone. But first I want you to try these IBS medications. I think these will work for you, and I don't think you have IBD so I don't think the pred will do anything, but I'm willing to let you try it and see for yourself that it does nothing." He was so smug, I wanted to punch him! But he gave me pred and that was the key. I tried the IBS meds like he asked, and they of course did nothing. Then I tried pred, and it was magical. My symptoms went away in 24 hours and I felt so incredible, like superwoman! :p

So yeah, I never saw that doctor again, and would never want to as he was a total jerk, but he was the turning point in my illness. I *still* haven't had anything definitive show up on a test result, but because pred worked so great for me, suddenly my GI had something to go on and he could narrow his focus. A few more normal test results later and he decided to put me on treatment long-term, to get me into remission. I was on Entocort (a corticosteroid similar to pred) for 7 months and it worked - I was in remission for just over 2 years thanks to it. :) I might be flaring now, not sure - I don't feel terrible, but I have been passing blood lately so who knows. At any rate, I'm rambling on again, but it took me basically demanding medication to get somewhere, because the test results were getting me nowhere. Prednisone is an interesting medication because it only works on inflammatory conditions (so it works on IBD, but not IBS - it works on other inflammatory illnesses too like Lupus, Behcet's, Addison's, etc). So knowing that I had such a great reaction to pred, at least we could then narrow down the list of potential suspects and have some idea of how to treat me. We then ruled out Lupus & Addison's, and I don't fit the symptoms of Behcet's, we ruled out RA, etc. So now I basically have a pseudo-diagnosis of IBD based primarily on my positive response to pred and the fact that most everything else has been ruled out.

Those feelings of frustration you mentioned, though, I still have them all the time too. Like lately, I have no idea what's going on. Sometimes my stomach is really riled up and I'm passing blood, my hair sometimes falls out and my lips are red and peeling - but for the most part I feel okay, so is this a flare? I've never had a flare with symptoms like this, so is this something new? It just never seems to really end. I had a nice 2 year break and now right back into the world of medical tests and endless questions that nobody seems to be able to answer. It's exhausting, it's frustrating, it's endless. Just gotta keep fighting though, that's all we can do! So hang in there, even if you don't always feel strong - you are! Big hugs.
 
Bluebird-- I'm so sorry you're going through the "tests are fine but you're not" trauma. I am in the same boat, and I know it's awful. :( As far as thyroid, though, thyroid problems can affect the intestines. Hyperthyroidism can cause diarrhea, and hypothryoidism can cause constipation. I have had both hyper and hypo. Even treated for thyroid problems, I still have separate intestinal issues, but the diarrhea and weight loss were worse when I had hyperthyroidism.

Cat-a-tonic-- I've asked for pred too and been refused. Maybe I need to be more demanding?
 
I have read thyroid stuff can affect your tummy but would it effect what food I ate? I cant eat fat,nuts,randomly popcorn :/, dairy and i cant drink Apple juice,caffine,soda and alcohol consumtion is limited.
I just don't think it's that and you would of thought my GI would of recommended me getting that done in the first place however as long as i can get better then i dont mind. I swear if it turns out its a thyroid issue I will hi5 my GI in the face with a colonoscopy pipe lol
 
Bluebird-- It's probably not JUST thyroid issues, but the thyroid issues might be making your intestinal problems worse. When my hyperthyroidism improved, I still had (and have) tons of GI issues, but I stopped losing crazy amounts of weight. It's unlikely that fixing your thyroid problems will cure your GI symptoms (though that would be awesome if it happens), but maybe it will help a little bit.
 
Yeah I know what your saying, funny enough before my tummy problem or whatever problems started I always struggled to lose weight.
I have been constantly tired for month and months and also I suffer from depression so that would probably explain that for sure.

I'm just so tired when friends and fam keep making comments like "how weird" at least you all understand me, my mum actually compared her finding a new apartment to my pain and health saying she gets how stressed I am -___-

If only I could wish all our issues away :)
I know for now I have to put up with it and having people like you guys to come to makes it easier to get back up and dust myself off. Xxx
 
Man, I'm nearly off prednisolone (3mg yay) after almost a year and I now realise how much it was affecting my energy and mood. My fatigue has lifted (a LOT) and my mood is so much better. I actually feel happy. So weird. I thought it would be the other way about!! Shame my weights not coming off though :(
 
lsgs, I had gained 25ish lbs when I was on Entocort and it all came back as fat in my midsection! Eek! I've been exercising regularly since then and have turned most of the flab into muscle - my weight is about the same but I'm definitely more toned. But, I still have some of that stubborn Entocort flab around my tummy area. It's really tough to lose the steroid flab. Possible, but really difficult! It sounds like you're doing better though and that's great. :) Try not to worry too much about the weight - if you're able to, maybe try to do some gentle exercise, don't push yourself too hard at first of course. I'm really liking yoga lately, I can do it at home where nobody can see me and I'm near my bathroom, and it's not too strenuous but you do definitely feel it in your muscles the next day.

Bluebird, have you tried showing The Spoon Theory to your friends & family? If they still don't "get it", well you know we're always here for you! Most of my friends & family don't really get it either. My hubby absolutely did not get it at first, then he got kidney stones and got a little taste of what it's like to be in pain and sick all the time (he vomited a lot when he had kidney stones). Now he understands much better. I don't think my mom or brother get it at all though. But my dad read the Spoon Theory and he almost cried, which surprised me, so I do think it's worthwhile to ask your loved ones to read it. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
 
I have been suffering from severe upper/lower abdominal pain for 15+ years. I have had numerous tests multiple times - endoscopies, colonoscopies, barium swallows, MRIs, ultrasounds, etc... I've been told i have IBS, GERD, and Gastritis. Half the time I'm sure people were convinced i was crazy! After all, how could I have so much pain when all the tests seem so 'normal'?

Recently, the pain (upper pain above the stomach) linked to lower abdominal pain which occurs at the same time - usually during digestion - immediately after eating & the entire time through until exit (lasts 24+ hours on and off) began to cause severe weight loss (30 lbs in 6 months). I also have an underactive thyroid, so that is huge for me. Also, I didn't have 30 lbs to lose.

I'm sure i am leaving a lot out, but my new Gastroentologist just discovered that I have :cool: 'Celiac Artery Compression Syndrome' :cool: - the Celiac Artery feeds the gut with blood supply etc, - crucial to a healthy/working gut. I have not yet seen a vascular surgeon, so I do not know the extent of damage or compression, but I wanted to share this diagnosis with everyone in this forum. It took almost 20 years for someone to find this rare disorder for me and if I can help even 1 person chop a few years off of relentless testing and severe suffering by posting this that would be awesome. :cheerleader:

I have read a lot of posts and symptoms with questions very similar to my own throughout this entire forum... Hoping this will help someone! Please let me know if u have any questions.

I'm not a Doctor or an Expert, just a fellow sufferer... :poo:

~peace~
 
Cat-a-Tonic said:
lsgs, I had gained 25ish lbs when I was on Entocort and it all came back as fat in my midsection! Eek! I've been exercising regularly since then and have turned most of the flab into muscle - my weight is about the same but I'm definitely more toned. But, I still have some of that stubborn Entocort flab around my tummy area. It's really tough to lose the steroid flab. Possible, but really difficult! It sounds like you're doing better though and that's great. :) Try not to worry too much about the weight - if you're able to, maybe try to do some gentle exercise, don't push yourself too hard at first of course. I'm really liking yoga lately, I can do it at home where nobody can see me and I'm near my bathroom, and it's not too strenuous but you do definitely feel it in your muscles the next day.

Bluebird, have you tried showing The Spoon Theory to your friends & family? If they still don't "get it", well you know we're always here for you! Most of my friends & family don't really get it either. My hubby absolutely did not get it at first, then he got kidney stones and got a little taste of what it's like to be in pain and sick all the time (he vomited a lot when he had kidney stones). Now he understands much better. I don't think my mom or brother get it at all though. But my dad read the Spoon Theory and he almost cried, which surprised me, so I do think it's worthwhile to ask your loved ones to read it. Here's the link:
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
Click to expand...


No I haven't but I think I will try that, such a good idea.
Thank you gorgeous!! *massive hugs* it's like having another family here :)
 
Jayed75 said:
I have been suffering from severe upper/lower abdominal pain for 15+ years. I have had numerous tests multiple times - endoscopies, colonoscopies, barium swallows, MRIs, ultrasounds, etc... I've been told i have IBS, GERD, and Gastritis. Half the time I'm sure people were convinced i was crazy! After all, how could I have so much pain when all the tests seem so 'normal'?

Recently, the pain (upper pain above the stomach) linked to lower abdominal pain which occurs at the same time - usually during digestion - immediately after eating & the entire time through until exit (lasts 24+ hours on and off) began to cause severe weight loss (30 lbs in 6 months). I also have an underactive thyroid, so that is huge for me. Also, I didn't have 30 lbs to lose.

I'm sure i am leaving a lot out, but my new Gastroentologist just discovered that I have :cool: 'Celiac Artery Compression Syndrome' :cool: - the Celiac Artery feeds the gut with blood supply etc, - crucial to a healthy/working gut. I have not yet seen a vascular surgeon, so I do not know the extent of damage or compression, but I wanted to share this diagnosis with everyone in this forum. It took almost 20 years for someone to find this rare disorder for me and if I can help even 1 person chop a few years off of relentless testing and severe suffering by posting this that would be awesome. :cheerleader:

I have read a lot of posts and symptoms with questions very similar to my own throughout this entire forum... Hoping this will help someone! Please let me know if u have any questions.

I'm not a Doctor or an Expert, just a fellow sufferer... :poo:

~peace~
Click to expand...

What a fascinating story! What were your symptoms and how were you diagnosed?
 
Bluebird, big hugs hun. We are like a family here, if you could choose your family then I would definitely choose my forum family! :)

Hi Jayed75, welcome to the forum. I've never heard of that, can I ask how you got diagnosed with it? Can they see it on a scan? What's the treatment for it, are you getting some relief now that you're diagnosed?
 
Jayed75-- Thanks for sharing about your diagnosis. I think I saw an episode of Mystery Diagnosis that featued 'Celiac Artery Compression Syndrome. The treatment is surgical, right?
 
Celiac Artery Compression Syndrome

Cat-a-Tonic said:
Bluebird, big hugs hun. We are like a family here, if you could choose your family then I would definitely choose my forum family! :)

Hi Jayed75, welcome to the forum. I've never heard of that, can I ask how you got diagnosed with it? Can they see it on a scan? What's the treatment for it, are you getting some relief now that you're diagnosed?
Click to expand...

And

lsgs said:
What a fascinating story! What were your symptoms and how were you diagnosed?
Click to expand...


Hi, Thank you for the warm welcome! :rosette2:

I will add more later about symptoms etc, but I wanted to respond. :)

The diagnosis of Celiac Artery Compression Syndrome is a diagnosis of exclusion due to the 'experts' not agreeing on this or that - so basically I had to have the endoscopy (normal except Gastritis) then the colonoscopy (normal), then a special ultrasound - the ultrasound (plus my pain symptoms and weight loss) is what confirmed the disorder. So, they can see this syndrome using an Ultrasound - they use the visual aide plus measure inspiration and expiration flow rates of the Celiac Artery ... something along those lines... :thumright:

Ultimately, if left only to blood work (which mine checks normal in most areas routinly checked) and the basic endoscopy/colonoscopy procedures, on paper, I appear a picture of health.

It's hard to briefly describe my symptoms because i am, at the same time, seeing an Endocrinologist and haven't yet had a 1st appointment (hypothyroidism). (Possible: Addison's Disease.)

But aside from that, my symptoms would be coal-like burning above the stomach (intense sweat dripping, blood pressure/pulse raising pain) coupled with a similar pain throughout my small intestine - either directly before and/or during the 'center chest' pain above my stomach. Usually, I noticed some relief after a successful bowel movement. :poo:

But the pains do not completely disappear - only become less intense and bearable. (There are certain bras/shirts i cannot ware because any mid-chest pressure will spike the intensity during these lower-intense times.)

Sometimes these intense episodes happen after eating, but sometimes they happen after stressful circumstances (i.e. standing for over 30 mins, being up too late, waking up in morning, working, digesting, etc.). However, it does always revolve around eating in some way whether same day or next morning/afternoon... And I am always dizzy with low blood pressure throughout the entire 'episode.' With a more intense dizziness before a successful bowel movement.

I also have Severe fatigue, and either diarrhea or constipation - and severe swelling inside the guts and on the outside - my fingers, veins, calves - calls for immediate lay down. (I wouldn't wait to have all these symptoms to suggest checking for this syndrome with Dr. as I'm not sure if some are exclusive to me??)

The treatment is, if I choose, surgery. I have not yet spoken to a vascular surgeon to discuss treatment because I am so early in diagnosis, but I will most likely choose laparoscopic surgery if I can. The success rate and relief rate seem high, so I am optimistic; however bitter-sweet it feels...

Right now, the only relief of symptoms i can get is from not eating solids and only drinking non-dairy, non-soy, non-glutton supplement shakes with non-dairy, non-soy, non-glutton Almond Milk 3 to 4 times daily.

My emotions are greatly relieved to have a diagnosis - after so many years, i began to question myself! :dusty:

Thank you for listening :)

~peace~
 
Last edited:
Chickadee said:
Jayed75-- Thanks for sharing about your diagnosis. I think I saw an episode of Mystery Diagnosis that featued 'Celiac Artery Compression Syndrome. The treatment is surgical, right?
Click to expand...

Hi Chickadee,

Yes, the treatment as I understand is surgical and seems to have a high success rate. I have not yet spoken with or even committed to a vascular surgeon, but that is my next step. I should have more info after my next GI appointment this Tuesday. I can keep u updated if u would like? :thumleft:

Thank u for caring :)

~peace~
 
Aw Jayed I'm sorry you are in pain luv, keep us updated as we all care and their are some very helpful people on this forum! I always feel bad because I don't know how to help because I've only been suffering a short time compared to these lovely people but I guess as long as we are all here for each other then that's all that matters :)

Big hugs Hun x
 

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