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I am having some d but not horrible. The big thing, my right lower abdomen is really puffy and VERY tender. I accidentally leaned against the kitchen counter and oh my. I don't want to have crohns but I feel I already do. So, I hope this pain means the new doc finds something in a week. It is so tender today.
 
Cat - so glad the cipro is working :)

Quirky - I suffer with the LRQ of my abdomen too.. do you have a GI appointment next week? Like you say.. you dont want crohns.. but they will only really find something when you are having a flare or something.
I noticed the right side of my abdomen was a bit puffy yesterday too.. and I kept getting sharp stabbing pains.. that were really making me wince :( normally I have a dull pain. But his was very sharp.
Thankfull it has stopped now though...
 
Hey guys just checking in

Glad to see you're feeling better Cat! Any idea where the suspected food poisoning came from? I share your frustration about your doctor coming in sick, I'm in healthcare myself and I'm on the other side of the coin with that one. Patients will quite often come in to see me and want to have invasive procedures done with diarrhoea or vomiting. Often I have to convince them not to go ahead because I don't want to be projectile vomited on!! It's so bizarre, when I feel unwell the last thing I want to do is attend a non urgent dental procedure. I would be SO MAD if my doc came in with a tummy bug. Quite often I'll have to go to work with a cold though, if I didn't I would have had the sack by now. I think in healthcare it's really frowned upon to take time off for your own health. Certainly I've not had good experiences that way!

I am astonished at how well the pancreatic enzymes are working for me. Yesterday it was a lovely sunny day so we all walked about 30 minutes into town and had some food (and I had quite a bit to eat, I find I no longer have to ration my food or choose 'safe' things) then WALKED back!! Normally after a meal out I am crippled. It was lovely but I'm quite sunburned haha. I have also gone from daily d to basically none. I don't want to get too excited though, if I could maintain this quality of life on enzymes and not have to go near immunosuppressants I would be VERY happy!!

How are you today quirkysoul?
 
lsgs, I had a suspicion that I picked up a bacteria from eating quail eggs. They're supposedly healthier than chicken eggs (chickens have been so messed with hormonally & with antibiotics etc, but quails haven't been). But I got them at an Asian market and I don't think they were pasteurized. I've eaten them before with no issues - I ate them one day before coming down with this bacterial/food poisoning thing though, so I suspected that was the source. However, I told hubby I was going to toss the rest of the quail eggs or he could eat them if he was feeling brave - he's got guts of steel and he ate them all and is fine. So maybe that wasn't the cause, I don't know. The last time we had food poisoning (from improperly thawed turkey), I was sick for days and hubby felt iffy for like a few hours. :p It takes a LOT to get him sick. So maybe the quail eggs were the cause but hubby's guts just powered through it. I'm jealous of his digestive fortitude. :p

That's great that the enzymes are doing such good things for you! I'm the same, right after eating a meal (whether at home or out), I cannot walk around after eating, particularly on a warm day. I cramp up terribly if I try!
 
Just wishing everyone a happy Memorial Day

It's been pretty awful for me. Nausea, constipation and just plain tired. Hoping tomorrow is better.

Take care,
C
 
Aw Cassy, I'm sorry to hear it. For what it's worth, I'm having a miserable time too. I'm just getting over the bacterial infection thing that made me crap blood, and now somehow I hurt my foot badly. I'm not sure what I did, I was literally sitting on the couch and my foot started hurting and it got bad quick. It's elevated with ice on it and I took some Tylenol, but it's still awful and I can't put weight on it. I don't want to end up in the ER but I don't know how I'll sleep like this, plus I can't walk. I don't know if it's a stress fracture or what but it sucks!
 
Ugh. The hurt foot is on my left. My bad hip is on the right - meaning, since I can't put weight on the left, I'm putting all my weight on my right leg and using my cane as a crutch when I do have to move (I just had to pee, I wouldn't have moved if it weren't necessary!). Not good to do that to my bad hip. I'm going to try to ride this out tonight, but if the foot is still this painful tomorrow, I'm going to the ER (or urgent care if they're open).
 
Isgs, i am happy you had a great walk. Personally, I think all crohnies should use pancreatic enzymes. They have been a life saver at times for me. They really help celiac too. The problem, they are soooooo expensive. My script is over $800/month. I can only get them when I hit my deductible and they're 100% covered. I just have to ration them for the year.

Cassy, How are you doing today?

I am so tired. I am dog-sitting and the mom comes home today. I am already exhausted by thinking of the chores I have waiting for me when I get home is making me ever so tired. I need to change the sheets, mop the kitchen floor, do laundry for the week, go to the grocery store, cook for the next couple days...then off to dog-sit for another friend. I may just wait and do the big laundry for later in the week. I will likely just get gluten free bread and lunch meat and shop once I get to the other house. Just make it easy on myself the next couple days. I also need to buy dirt and start a bed for the flowers I bought this weekend.

I started the day off with d. I am just so tired. I will likely get some red meat to try and get some b-12. It always perks me up. I just hope my tummy tolerates it.
 
Meg, thanks for asking. :) The foot is somewhat better. I can limp around using my cane as a crutch and I can put partial weight on the foot - couldn't put any weight on it yesterday. I'm resting up today and trying not to walk. It's yet another "in pajamas all day" kind of a day. Playing video games and crocheting a blanket, and wishing I could exercise. :( It's been a week now that I haven't been to the gym.
 
That is insane, I can't believe how expensive enzymes are. I am so grateful to have free prescriptions here. We are so sheltered from the actual cost of our care with the NHS. I have to be honest I forgot to take mine with lunch and I'm up tonight with pain, don't think this can be a coincidence!

Cat glad your foot is feeling better! I've put my back out again with a sneeze (I've got the cold) looks like I wasn't fully healed after the nj tube fiasco. What video games were you playing? I'm a games nut :p
 
lsgs, we're re-playing the first Kingdom Hearts. :) An oldie but a goodie. Hubby and I are taking turns playing. It's been something like a decade since we've played this game, but it has held up well - the graphics still look pretty good, and the gameplay is still really fun.

And yeah, prescriptions can cost a ton here in the US, especially if your insurance won't cover it. For name-brand meds, it can cost thousands sometimes. I know that Entocort easily costs over $1000 a month without insurance, and stuff like Asacol/Delzicol can cost over $500 a month. I have pretty good insurance so I "only" pay $75 a month for meds like that, which still isn't cheap, but at least it's within the realm of possibility.
 
Lsgs.. im so glad the enzymes are working for you!! :) are you on a trial course? Or are the doctors satisfied to continue this as successful treatment?

Cat - I know we have talked about medicine costs before. But I still cant get over it. Lsgs is correct when she says that we are sheltered in terms of the actual costs of things. But as I have seen bills for private treatment.. even this isnt as costly as some things I have read for american care..

What frustrates me though.. is that there are tonnes of people in the UK who take the NHS for granted, and they expect to get things instantly and slag the NHS off if that doesnt happen.

I will always think - if you dont get treatment or investigation asap... then it is because it isnt life threatening.. and that is a good thing!! (Dont get me wrong.. I hate waiting.. but what is the alternative?)

Rant over haha!
I wish I could send meds over to you all in the states at NHS prescription costs
 
I haven't been to a Hard Rock cafe in years, but I think the last time I was at one, I had a tuna sandwich? It wasn't fried (I never did well with fried foods even before I got sick). Hopefully there's something you can have that won't make things worse. But hey, if you do get sick, aim for your mother-in-law. :p At least then she'll know that your health is really bad and she shouldn't push you to do so much or eat at so many restaurants!

Lmao!!!

Last few days have been bad with my tummy but I have found that soy milk doesn't make me ill and if you go to Starbucks try the strawberry smoothies with soy milk instead they are so good!!
I had chicken at the HardRock btw not fried, seemed okay for me.

Problem with my mother in law is (or one of them lol) she thinks its like a normal tummy ache so she's like "have some benadictine and hot water" -__- she keeps commenting on how little I eat but I'm still finding out what I can eat so when I am in severe pain (as I'm sure you all are the same) the last thing i want to do is to put more food in me.

Interesting thing I found out the other week, I have a skin problem (or did) so I was given a medication called Accutane (as a last attempt to cure it) I had explained to my dermatologist about how I felt and she said it may be my medication that has caused it. So I googled it and even though their is no solid proof many people using the same meds I took ended up with Crohns or another IBD issue.

My husband is coming with me when I get my biopsy results on the 6th of June because like I said that the Dr doesn't take me seriously.
 
Bluebird - I can understand how frustrating it can be to have someone in your life who doesn't understand what's going on with you. I don't even tell a lot of the family what's going on, I just bring my own food to family events and try to eat without drawing attention to the fact that I'm eating something different. Your mother-in-law, it almost sounds like she is deliberately trying to sabotage you rather than being understanding. Making you go to restaurants - that can be so frustrating because it's very difficult to find foods on the menu that won't trigger symptoms. It seems like unless it's white rice and chicken, or shrimp, I can't even find foods to eat half the time. I hope you get some answers on the 6th.
 
Hi bluebird! Thats great that hubby is going with you for support.. I have been to appointments and ended up crying.. because I felt they didnt believe me. Then I doubt myself.. so it is good when my other half is there to ground my thoughts and back me up.

I think I read before (so correct me if im wrong) are these biopsies from an upper endoscopy/gastroscopy? Have they any plans to do a colonoscopy?
Sorry to hear that your mother in law doesn't really get what your illness is doing to you.
But it is often hard to understand if you haven't been through it yourself... I used to get annoyed when my friend backed out of commitments due to being tired from anaemia.. but then since I started suffering fatigue 2yrs ago.. I understood how she must have felt.. and I felt so guilty.

Thats interesting about the skin condition medication.. just out of interest.. what was the skin problem? As there are a few skin issues related to IBD.

Good luck on the 6th! :) xx
 
Cindy - yeah it is frustrating but in some ways I can deal with it but its the constant commentary I get when I can't eat something that frustrates me more ya know? It's like I absolutely love food so if I could eat it then I defiantly would.
My mother in law just thinks its "strange"
I went to a Italian yesterday and had shrimp, chicken, tomato and mushrooms with white pasta and that didn't seem too bad.


Bozzy- that's exactly how it made me feel when my Dr was looking at me whilst I was trying to explain, she had a look of "yeah right" and It made me feel like I was telling lies :(

My DR did a upper endoscopy I think, she hasn't said about a colonoscopy but I would imagine that may be next if the biopsy comes back "normal"

Yeah I'm thinking I may now also be lactose intolorent because I can drink milk, cream and I can't eat cheese??

I had Cystic Acne which is supposedly the worst acne and its pretty painful and unsightly, it's also can be hard to get rid of so I was recommended as a last option (more or less) to take Acutane. I've been off it about 6 weeks. Who knows but I will bring it up with my dr even though I have her a list of meds I'm on *rolls eyes*

Quirky: poor you :(

I'm glad I have you guys to talk to, made me feel better to know I have such inderstanding people who knows how it feels to speak too. Thank you. X
 
My migraine has finally subsided. I got the pill in quick enough, and used the Aleve to boost the potency. My doc told me to do that. I get a nasty side effect where the vessels in my neck and down my arms feel like they're seizing up. They get painfully tight. I hate that. Sometimes it's worse than the migraine. I have been nauseous all day, but forced myself to eat a sandwich at lunch. My tummy is really sore today. I asked my witchy friends Sunday to do a spell that whatever is there right now stay until Monday. So, I have asked for pain. I accepted the karma of that choice. I guess the migraine was part of that.

I am feeling overwhelmed. I don't know how to get healthy. I have figured out all that is wrong with me, and it is scary. Crohns, diabetes, asthma, osteoarthritis, possible interstitial cystitis, celiac, chronic pancreatitis...and the big issue is I can't eat the veggies I need to eat healthy. I can eat lettuce, carrots, celery, and root veggies. I guess that's enough, but I need to be able to eat more to eat a diabetic diet. I can eat so little foods, I don't know if I will ever be able to eat the way I need to heal myself with food. I am feeling overwhelmed. I guess that is also karma. I am getting more and more anxious about the colonoscopy Monday. I just want whatever is in my terminal ileum to manifest itself for the new doc. I don't want to be told the test is normal again. I don't know how much longer I can take this.

Oh, and don't worry, not suicidal. Just frustrated, tired and at my wit's end.
 
Quirky,
have you tried juicing? I haven't tried it yet but I do know some people find success with it, getting the nutrients without the fiber issues from the whole veggies. It does suck to have multiple medical issues; I can relate to that, especially as I've just added another and of course it had to be a major one. I hope that your belly issue stays put for your doc to see on Monday!
 
:( that is a rather large list of medical issues you have there.. I be you could set up your own pharmacy with all the medicines you must need!

Mccindy, how are you? I read your other post earlier.. was it today that you got your MRI results?
 
Meg, I concur with Cindy, juicing might be the way to go. I juice regularly as it's pretty much the only way I can get my fruits & veggies these days. A salad would shred me but juice is always easy on me. Juicers aren't cheap, but you can probably find a decent used one for a good price. My first juicer was $10 at a garage sale and it lasted for a year or two. It broke not long ago so I bought a refurb Breville juicer on Amazon for about $100. I have had a good experience with both my juicers, and I particularly like my new one, it seems to be very good quality. I juice everything - spinach, kale, cucumber, peppers, ginger, carrots, apples, pears, oranges, strawberries, etc. I would recommend not overdoing it on the fruits, because they're full of natural sugar. We once juiced only fruits, and holy cow was that sweet! Normally I'll juice a bunch of veggies, then add a few pears/apples/oranges for sweetness. That usually works quite well.
 
bozzy - I'm still in limbo regarding everything! The belly stuff, I see the GI doc on the 12th. The abdominal MRI I had looked normal, apparently. The brain tumor, I see the neuro oncologist tomorrow to find out the type, grade, and treatment I guess, and prognosis. I don't really know anything about it yet other than that it's there and not in a good spot to remove.
 
Thanks quirky! It's a new diagnosis. I had posted it in a new thread but probably just mentioned it here. totally scary right? And I thought the belly stuff was a big deal. It's all about perspective, I guess~
 
Mccindy - im not surprised that it will take a while to digest. Sending big hugs and well wishes for tomorrow. Xxx

Little bear - is type 3 the hypermobility type? I cant remember if im honest.. I know there is a vascular type too.. im fine though. Just found out today that my decompression surgery is provisionally booked for 5th july so im really scared about that at the moment..
 
Just had my appointment with my new GI. He thinks IBS, doesn't have an explanation for blood and bloody mucus. Will send me for an MRI to check out for a Meckle's Diverticulum, but thinks it'll show nothing. Also sent me for bloodwork.

Funny though. I knew already that the small bowel followthrough didn't image the terminal ileum properly. This GI mentioned that the same comment was made for the CT scan I'd had. This also happens to be where I'm having my problem. Go figure. But the colonoscopy saw the terminal ileum and said it wa clear.

At the same time I was feeling decent when the colonoscopy happened.

I dunno. Hopefully I'll know more later.

Nathan
 
Nathan, sorry you didn't get any better answers. Hang in there.

McCindy, you doing okay? I've been thinking about you today and sent out some good juju.
 
Thanks quirky! I appreciate all the positive thoughts, I know that they are helping me. I posted a new update regarding yesterday's appointment and info under the Your Story tab. :)
 
Hey guys!

I have my MRI on thursday so hoping that'll show something up in my small bowel to end this CD speculation!! my stool calprotectin came back high (I looked over the drs should and cannot remember if the number was 72 or 720 lol, either way apparently it was high!) So i had to have a colonoscopy, but this didnt really show anything at all, so the dr just took a couple of biopsies. this was a month or so ago and I havent heard back so I assume there was nothing there- though... this IS the NHS so it might be 3 months before i hear anything (sigh)- ive been sick since june last year and as a redult had to take a year out of my university course (which was 5 years long so long enough already without an extra year grrr) it taking so long...

It started with Nausea and horrendus diarrhoea, literally nothing I ate stayed in my body for more than 10 mins, very painful cramps and immediate diarrhoea. Things progresses from there to constipation and diarrhoea swinging from one to the other, constant nausea, sort of wierd feeling of being fluey (like... inwardly shakey and weak... its hard to explain), lak of energy and enthusiasm, stomach pains in the upper left and right quradrents, dark stools with black flecks in them, a lot of mucous.....

I just feel like crap all day every day, and Im only 21!

So yeah, MRI on thursday, praying for some quick answers and then some treatment to feel normal again!!

How long did it take for you to get results from your MRIs?

x
 
Cindy, you poor thing. I am glad it is likely benign. That sucks that you can't drive. I hope that isn't too much of an inconvenience. I also hope it doesn't get any bigger. Hugs!
 
I am on my prep day for my colonoscopy. I don't start the Miralax and Dulcolax until 2. I am enjoying the calm before the storm. I do wish I could have something to chew. But, I know I need this test. My right side is hurting a lot and it is always a couple degrees warmer to the touch. I am so tired. D has been less, but the pain has been higher. I just hope whatever has been hidden in the past shows itself. I wasn't flaring at my last scope, so maybe this time the doc will see something.
 
Charlottevet, I normally get test results at my next clinic visit. Normally I have a return appointment arranged or the consultant sends one out. I'm in the same position as you, and I'm quite stressed about the scan. Can you let me know how you get on?

Quirky good luck with the prep. Don't know how far through you are now but how are you getting on?

I am currently on holiday but I nearly never made it. On the morning we had to go I woke up (3am, early flight) and right away I had pretty awful nausea and diarrhoea but the fever was the worst. I mean I get fevers and night sweats but nothing like this. It's certainly brought back a lot of anxiety about my symptoms. My husband was great and took it bit by bit with me, saying we'll just get to the airport and we will see if we can go tomorrow if you're still not well. Of course in a couple of hours it passed and I felt better. It was an awful experience. I hate whatever disease this is, seriously. I'm even madder at the docs at the moment for their attitude towards me. But anyway, things have calmed down and I'm doing better. Hope it continues as I am now on my lowest dose of pred for 11 months. Thank goodness too since seeing myself in holiday photos has been absolutely brutal.
 
Isgs, good luck! I am glad you're on holiday. And I am glad the travel morning sickness didn't ruin your holiday. Try and have fun.
 
I just started the miralax part of the prep. It makes gatorade really thick, but it is much easier than other preps I have done in the past. I thought I had to drink 32 ozs in 10-20 minutes, so I chugged nearly 16 in 3-5 minutes. Nope, I have 2 hours. So, I am ahead of the curve and can rest a bit. I can do this.

I had severe nausea after taking dulcolax. I almost puked. I can do this. But, I am so nauseated I can't even drink broth. Looks like between bathroom trips I will be sleeping, I am so tired.
 
Meg, can you take anything for the nausea? I have done the Gatorade & Miralax prep twice myself and they said I could take Zofran with it. The first time, I took no Zofran and I puked in the bathtub. The 2nd time I did that prep, I took a bunch of Zofran and did not vomit. Anyway, good luck with the prep and especially good luck tomorrow! Got my fingers crossed for you, you need some answers and I hope you get them!

Charlottevet, good luck with the MRI. I haven't had an MRI of my intestines, but I did have one a few years ago of my liver (I have some "nodules" on my liver that they wanted to get a better look at). I was told that the results are basically ready immediately, but the techs couldn't tell me what they saw - a doctor has to look at the images. I got my results back maybe a week later? Of course I'm in the US, where things seem to move a bit faster than in the UK (the trade-off is that even with insurance, we have to pay a ton of money for medical stuff). So, if you can get ahold of your doctor quickly and have them look at the results, you might be able to get the results quickly.

lsgs, I hope you can have a good holiday! I am glad to hear your husband is being accommodating, I know you've vented in the past about him being not very supportive. I hope things stay calm and you're able to have a fun/relaxing time.

Nathan, is the MRI going to look at your small intestine? I hope it finds something worthwhile. Good luck and keep us posted!

McCindy, how are you doing? Are the memory & language issues getting better?

As for me, I'm doing okay. The bad hip has been acting up but otherwise I feel pretty well. I've recovered from whatever was causing me to pass blood so that's good, and whatever I did to injure my foot seems to have passed as well. I've started going back to the gym after a week away and that always feels great. :)
 
I don't have any nausea meds. This is a relatively new thing, well in the amount that I have been having. Just the last few weeks have I had this nausea. I will talk to the new doc about it tomorrow.

I am doing pretty good. Just want to eat something.

Cat! You got to the gym. Yay! I am happy about that. Sorry to hear your hip has still been hurting. But, I am really glad the bloody stools are gone!
 
My memory was a lot better over the weekend and I didn't have the speech/verbal problems I was having last week, so the double dose seems to be helping a lot. I did notice that occasionally I get this weird "clenchy" feeling in the left side of my head, feel a little foggy and then it will pass. I also twice suddenly felt very angry for no reason at all. I'm assuming it's all adjusmtent to the new level of medication and that hopefully it means the seizures I would have had are being prevented. I have the EEG tomorrow, so hopefully it won't take too long to hear about those results. Then the PET scan is next week, and I finally see the GI!
 
Ugh. I woke up nauseous today, not sure why. For some reason my hubby decided to eat some leftover spaghetti for breakfast, and the spaghetti smell nearly made me puke. Fortunately the Zofran has kicked in and I'm feeling somewhat better. I took some Tylenol PM last night in an effort to sleep well and get the arthritis pain feeling better. But it didn't work, the pain is worse if anything, and I feel groggy and fatigued. Blah, not a good day.

Meg, best of luck on the scope! I hope you can eat something nice and comforting after you're all done. Nausea sucks so I really feel for you. There are a few anti-nausea meds out there to try, so I would definitely ask the doctor about it. I tried Compazine, which did not work for my nausea (it made me dizzy and it also gave me an allergic reaction? and I felt like I couldn't breathe). Zofran works great for my nausea and I don't notice any side effects except for sometimes mild constipation if I take too much. I tend to get nauseous pretty easily so Zofran has been wonderful, I do not leave home without it. :) Just my two cents.

Cindy, glad to hear things are improving somewhat. Best of luck tomorrow and next week! That's a bit scary though about feeling suddenly so angry. I hope it's just a side effect that passes quickly. Fingers crossed that these upcoming tests will shed more light on things for you! Hang in there and good luck!
 
Hiya girls, just popping in to send big hugs and hoping you're all ok xxx

Cat, are you feeling any better now xxx
 
Thank you Joan, it's always good to hear from you. I'm feeling a little better than I was this morning, but not great. I ate a little bit more and went out in the sunshine and that perked me up a bit. Sometimes Sunday nights/Mondays are just awful for me, I don't know if it's the stress of the upcoming work week or if my sleep pattern changes over the weekend and has to change back or what. I don't think it's a flare or anything, I'll probably be fine by tomorrow. Thanks for checking in on me. :)
 
Thanks Cat! I called the doc's office today, just to clarify a few things. His assistant said basically they can't tell me anything about the grade or if it's benign or malignant until they do the measurement MRI in July. which is what I figured but you know, never hurts to ask! At least I'll have the other tests to get some info from. I never thought the GI stuff would seem so much less significant. Except when I am hungry and trying to figure out what to eat!
 
Hi everyone, I feel really bad that im not around often enough to keep up with everyone's posts/stories.
But I hope you are well?

@cat - thats gross, your hubby eating left over spaghetti!! Haha.. made me nauseous just thinking about it. How are you feeling now?

@mccindy - its awful that you have to wait to know for sure.. when do u see your GI?

Im starting to get really nervous about my surgery.. especially now we are in june.. so its pretty much a month to go. I will be hospital, for mum, my hubby and my sister's birthdays :( I also think this is affecting my "IBS" - I am getting sharp stabbing pains in abdomen - to the right side of my belly button
Humph...
 
McCindy, that's so scary that you still don't know for sure if it's benign or malignant. I hope time goes by quickly so you can get that follow-up MRI and confirm what it is for sure (and of course I hope it's benign!). I had something sorta similar happen, although maybe not quite as scary. When I first got sick, they did a general abdominal CT scan. My guts looked fine (they always look fine even when they're not, ugh!) but they found "nodules" on my liver. My GI said, don't worry, it's "probably" not cancer. They scheduled an MRI to get a better look... but they couldn't fit me in until 6 months later! I had to try not to think about liver cancer for 6 months. Fortunately the nodules are benign, but how horrible it is to have to wait like that when words like "malignant" are being thrown around. And I'm sorry to even bring up the subject, I'm sure you're trying your hardest not to think about it too. But I just wanted to say that I can relate to what that feels like, and it sucks. Sending you a big hug!

Bozzy, yeah, my hubby will eat almost anything. I like spaghetti but not at 7 AM! Ew! I can't stomach much of anything at that time of morning, and the smell was atrocious. The worst part was, he ate it cold! He didn't even heat it up! So gross. :p He just plopped down on the couch next to me and started shoving it in his face, and I smelled it and my guts went "urp!" and I had to run to the bathroom. Fortunately I didn't puke, but I stayed in there until I was sure he was done eating. Yuck!

Bozzy, how long are you going to be in the hospital for your surgery? That's a shame that you'll have to miss so many birthdays, but hopefully for all the birthdays afterwards you'll be feeling much better. And I'm not surprised the worry is upsetting things, my guts would be in knots too! I know it's all easier said than done, but try to take it easy for now. Eat safe foods and rest up when you can. Hang in there!
 
Cold!?! He is a "crazy cat"!! Lol..

Doctor says I will be in intensive care for at least 1 day, and around 10 days in total. From what ive seen online.. some people are only in for a week.
I laugh.. but one of the complications that can arise is "brain sag" .. literally the brain sags and you have be laid completely flat until it settles back into place. Just the name sounds funny.. but the reality is not
 
I guess no Crohns. I was given a lot of meds, so I don't remember much of anything. He did an upper scope as well. He called in a script, but I don't know what it is. I will pick it up tomorrow. I think the report said all was normal. I am so sad. I really need something to explain all this pain and diarrhea.

The surgeon may likely want to do exploratory surgery now since I am still having pain and this didn't explain it. And why am I so tender at my ileum if there isn't any crohns?

Not a happy girl. And so tired. I am up to feed the pups I am caring for and then back to sleep.
 
Im so sorry you dont have any answers yet, Quirky.
I had exploratory surgery when I had my first really bad flare. But I had been on prednisolone for 3mths prior to the surgery.. and I hadnt even had a colonoscopy! It found lots of scar tissue from repeated inflammation.. but wasnt inflamed when they were in there. And it was all because of my appendix apparently.

Sending you big hugs :hug: xx
 
Bozzy - I see the GI next week Wednesday (finally!). It's interesting, I've noticed that since I've been sticking to the elimination diet pretty carefully, I feel pretty good most of the time (in the belly, anyway....). it's only when I eat a trigger food that I notice much pain, otherwise there's just discomfort. Of course, with this whole tumor thing, my mind is diverted elsewhere!

Cat - don't worry about bringing it up. It's on my mind all the time, it seems like! It does suck to have to wait. At least it's only a month and not six months like you had, that would be so hard! I'm glad you got good news out of it anyway. I'm just hoping so hard that it turns out be benign, and I can get more information. I'm kind of freaked out though because even when the tumors are benign, medical sources say average life expectancy can be 5-7 years.

That hubby of yours... ew! I have a hard time eating in the morning too, and just the idea of cold spaghetti is nauseating.

quirky - I'm so sorry to hear you're not getting any answers yet. I hope that you find out something soon and get some relief.
 
How is everyone?

Bozzy: Sounds harsh, but hopefully it'll sort out some of the problems. Best of luck. Too bad the stress is acting up your guts.

Quirky: Maybe something will show on the biopsies. Have they done any imaging of your terminal ileum yet? Colonoscopy/SBFT?

Cat-: I'm the same as your husband. I will eat just about anything. Lucky me most stuff doesn't bother my guts.

As for me, I went for the GI's recommendation of upping my fibre intake. He said oh, you've gotta get used to the added fibre, that's the only reason fibre is irritating you.

Hell no. I was damn right. I was doing half decent last week, low grade ignorable pain all day, but no blood or sharp pains. This week, first day after I started taking more fibre, I had horrible cramps and then a fair amount of blood in my stool. Second day, more horrible cramps. Third day, decently bad cramps and diarrheah. Today, decent cramps again.

Whatever though. I'll keep pushing on with it until I get blood again, then I'll call and complain.

Oh my, wish I knew what was on the go.

Nathan
 
Nathan, what type of fiber have you been taking? I find that there's a very big difference for me in terms of soluble vs. insoluble fiber. Insoluble fiber causes awful symptoms & pain, but soluble actually seems to help. I take a tablespoon of psyllium husks (soluble fiber) daily, and that's been doing me a lot of good. There's a really long but informative thread about psyllium here:
http://www.crohnsforum.com/showthread.php?t=13856

Meg, I'm so sorry to hear you still don't have answers. I wonder if you might have what Allie ended up being diagnosed with - Behcet's. I think you and I might have discussed this already but I can't remember for sure. Allie hasn't been on the forum in awhile but she posts on FB fairly regularly so I can put you in touch with her if you want. She wrote a long post here awhile back about her Behcet's diagnosis. With what you've described with the abdominal distension and everything, it sounds somewhat similar to Allie's symptoms (her colonoscopies were always totally normal too). Here's her thread:
http://www.crohnsforum.com/showthread.php?t=44354

How's everyone else? I'm doing a lot better today. I hit the gym last night but it was really tough, I had no energy and had to push really hard to get through my workout. After the gym, I went home, had Ensure for dinner, and went to bed early. Woke up this morning feeling significantly improved, no more nausea, the arthritis pain is a bit better, and I have much more energy than yesterday. (And hubby didn't eat cold spaghetti this morning, ha ha!)
 
I picked up some raisin bran :lol2:. I'm not too bothered with helping it or not. I figure if I've got IBS it won't be too bothered regardless of the fibre type, and the alternative is that I will get closer to a diagnosis if I am bothered.

Sure I'm in more pain than is strictly necessary, but at the end of the day I figure that if simply eating regularly causes pain then whatever is there remains there. If I can build up some evidence that something is going on, I might finally get taken seriously.

Thanks for the advice
Nathan
 
Hi all. I have read many of these posts and I just want to make sure that all of you got biopsies during your colonoscopies and endoscopies because many of you have the symptoms of microscopic colitis. It can only be detested under a microscope.

Also, when it comes to relapsing after you stop steriod drugs...Food intolerances are triggered when the gene for CD or MC is also triggered. If you don't address the foods you are eating that is causing the inflammation, then you will relapse every time
 
Nathan, I'd be more wary of the raisins than the bran! Dried fruit just does not seem to break down, so you're risking obstruction by eating that stuff. I wouldn't do well with the bran part of it either, but raisins are evil. :p

Hi Leah, welcome to the forum. Yes, I've had many biopsies taken over the years and my GI suspects either Crohn's or Microscopic colitis for me, but so far all of my biopsies have come back normal.
 
So IRRITATED! I had another colonoscopy last week. I was awake for it this time and I saw the typical red bloody spots that could be Endometriosis or several other things. He didn't take a picture and even though he talked to me about it afterwards (in case I was asleep while I was talking) he didn't put it into the report!! I'm so angry I could drive down to wenatchee and throttle him. Supposably he took biopsies but I doubt it! I need a new GI doctor. Does anyone know anyone in Seattle/ Spokane... or anywhere in Washington pretty much. UGH:ymad:
 
Not to be depressing but in all 176 pages have any of us made it OFF the undiagnosed list? That would make me feel better to keep a list of those who finally got a diagnosis
 
Omaklackey, yes, a few people have "graduated" from our little club. Allieinwonder got a diagnosis of Behcet's. SunshineSmile has gotten a few different diagnoses, I think right now it's looking like Crohn's, RA and drug-induced Lupus for her. I'm kinda sorta diagnosed, nothing is official but they think IBD and are treating me as if it's IBD, and as a result I'm in remission and doing pretty well for the most part. A couple people have been diagnosed with Crohn's based on the fact that they have/had fistulas, and I believe both of those people were put on Remicade and are doing better. Oh, and ShanBanana was diagnosed with Meniere's. Those are the diagnosed people I can think of just off the top of my head - I'm sure there are more I'm forgetting. So yes, a lot of people from the club have been diagnosed with various things, and many of them turned out to have something besides IBD. Don't lose hope, just because this thread is really long doesn't mean it's hopeless. :)
 
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I would concur with Cat, Omaklackey. While IBD may be difficult to diagnose, it does happen for some of us. I'm a strange case in that I was previously diagnosed but my current doc doesn't think the diagnosis was accurate. So I'm seeing a new GI next week to find out for sure what's going on. I feel pretty good most of the time as long as I stick strictly to the elimination diet. Food triggers pain for me. I don't have diarrhea though.
Cat- I'm glad you made it through another workout and didn't have to suffer through another morning of cold spaghetti! :D
Stay strong, I know working out makes you feel better. I was SO tired and had a bad headache when I went home yesterday, but I got on the elliptical and it did seem to help some. I have called my neuro doc and left a message about the headache because I've had it for about 16 hours now. Made it through my morning workout too though!
 
Oh yuck, I hate working out with a headache. I hope your headache goes away soon, Cindy! Did your doc call you back? Is the headache gone now? Yes, like you said, even when I'm feeling quite bad, if I can manage a workout then I almost always feel a lot better afterwards, so I'm glad to hear you're still hitting the elliptical. What do you do for entertainment when you're on the elliptical? Do you listen to music or watch movies/TV? I usually watch music videos when I'm on my exercise bike - that way I get music plus something visual to get me through my workout. But even so, I started to get really bored just riding the exercise bike indoors all winter. I'm so, so happy that it's finally warm enough out to ride my real bike and get a change of scenery and some fresh air. I hope you're able to stay entertained and not get cabin fever on the elliptical.
 
I usually either watch a movie or read my Kindle when I'm on the elliptical. I do still have the headache. The nurse did finally call me back, and said I can take a Vicoden for the headache. She's also going to talk to the doc about the headache and the vertigo I've been experiencing, and call me back about that. I"m also feeling exhausted today so I think I'm going to skip the afternoon workout. Plus my son and his wife are arriving tonight from Arizona! I'm pretty excited about that, we haven't seen them since December. We'll have them for the next two days and then they are coming back in July for a few more days.
 
Hello all.

I read through all your posts and feel like I know you all already. I don't usually do this sort of forum thing for my health stuff, so please do bear with me.

I have been off work for almost a month now (and I'm one of those rare folk who loves work...) and have lost almost 19kg (40ish pounds). When I tried to give my doctor a high five when I'd realized just how much I'd lost (have been trying to lose weight for literally years) he wasn't keen for it... bless. I have had years of fun digestive situations, in combo with fibromyalgia and the whatnot, and nothing has come of it until now. My GP is awesome.

I am booked in for a flexible sigmoidoscopy next Friday afternoon, and I'm freaked out. Totally. CRP was raised in initial blood tests - my GP talked to the gastro registrar at the hospital given my weird weight loss and pain increase, and she said she would try to get me in as soon as they could but no guarantees... And recommended I shell out for a faecal calprotectin test if I wanted to get in a bit earlier, cos if it was raised, it would bode well for needing to have a quicker look-see. I bit the bullet and paid for it - it was raised (308 I think it was). GP called registrar again, and they put me on some asacol in the meantime with my appt booked for next week.

I am existing on miso paste, ginger and udon noodles at the moment, which is delicious and does give me some much needed calories... But it's not really ideal.

I'm actually scared - I don't scare easily. It's bowel cancer awareness week here and there are heaps of adverts and news stories about bowel cancer - all of them outlining my symptoms. Timing is a bit carp, in truth. I know it's probably not that, but... You know.

Anyway... I just had to share with folk who I know understand.

Big health to you all, you lovely, interestingly-digesting people!
x LT
 
It might be odd to say so but I hope for your sake it's Crohn's or something like that and not colon cancer! I'm sure the rapid weight loss is a huge concern. That is an awful lot of weight for only one month. I've lost ten pounds or so in a month and I thought that was a lot. Keeping fingers crossed for you that everything turns out okay.
 
Hi Lenatilde, welcome to the forum and the club. :) Is there a reason they're only doing a flexi-sig and not a colonoscopy? The flexi-sig can only see the rectum and part of the colon, it doesn't get anywhere near seeing the terminal ileum (the last part of the small intestine). And the terminal ileum is the spot where the majority of Crohn's is diagnosed, so it's a bit concerning that they're not going to look at that area yet. Long story short, if they flexi-sig doesn't see anything, push for more tests. Don't let them say you're fine or that it's IBS and send you on your way when they haven't had one glance at your small intestine.

Is the Asacol helping at all? It's a very mild medication, and it's used more for maintenance of remission than it is for getting a flare up under control.

Your diet doesn't sound horrible to me. I know that I susbist pretty much on plain white rice when I'm in a bad flare. The ginger in your diet is particularly good - ginger is great for quelling nausea, so it may be helping you feel better.

And I don't blame your GP for not high-fiving you back, that amount of weight loss is definitely concerning (but not necessarily cancer - you can lose a lot of weight with Crohn's/colitis too!). My doctor gets worried if I lose even 5 lbs unintentionally, so 40 lbs means something is definitely not right. I hope you get some answers soon. Keep us posted and good luck!
 
Hey guys,

Just a little update.

In less than 2 weeks due to pain and now not being able to eat much I've lost 8.5 lbs.
A week Friday I'm having a ultra sound of my abdomen and pelvis and then I'm getting a colonoscopy.
If those tests fail in finding what's causing me problems then they will do a CT scan.

X
 
Hi Bluebird, I'm sorry to hear you're still feeling so unwell. :( It's good that you're having tests done, I really hope you get some answers out of all this. It's interesting that they're doing an ultrasound first - ultrasound was one of the last tests I had done, and honestly it seemed kind of worthless to me. I was having a bad gastritis attack at the time of my ultrasound, but since my pain was high up in my abdomen, they wanted to make sure it wasn't my gallbladder or liver or pancreas causing the pain. Apparently those organs were fine, my stomach was quite inflamed - but the ultrasound couldn't see the stomach inflammation, the gastritis diagnosis was basically a diagnosis of exclusion because they couldn't find anything obviously causing the pain. So maybe I just had a bad experience, but I feel like there are more worthwhile tests out there than ultrasound.

The good news is, colonoscopy is a worthwhile test - make sure they take lots of biopsies! As you may already know, some things (such as microscopic colitis) can only be found on biopsy - and to complicate matters, it has a "skip pattern" meaning the inflammation is patchy, so they basically have to luck into biopsying the right areas to find it. So, more biopsies means a better chance of getting a diagnosis. Lots of luck with the colonoscopy, and let us know if you have questions. You may have already heard this too, but the prep is the worst part. The scope itself, you'll basically be asleep and won't remember a thing, in my experience it was like a nice nap. :)

And if it comes down to having a CT, that's an easy test too. They might make you drink some stuff beforehand, but it's not nearly as vile as colonoscopy prep is. The scan itself takes about 1 minute, super quick and easy. So, good luck with all these tests, got my fingers crossed for you that you'll get some answers! Please keep us posted on how it all goes. And feel better soon!
 
Thank you so much cat and mccindy :)

Cat - I understand they're starting with the flexible sigmoidoscopy because of my age; apparently they can see a lot with it in 'younger' people (such a spring chicken at 36!). The way they do it here is do that first on someone under 40, as it is relatively uninvasive and apparently can see pretty darned high up on us youngsters, and then if they don't find anything they'll do a colonoscopy. I certainly won't be giving up, and neither will my GP.

I don't feel like the asacol is doing anything other than stopping me up a bit... However. I am loving my diet (was pretty excited to find something that I feel like I can eat) - ginger has always made me feel better.

New symptoms yesterday, which worried my husband a bit - very dark (almost black), sticky stool. I know this is likely blood up higher in the ole system... It's hard to judge the pains I'm getting as I have a very high tolerance. Ah well. Today is hugging the heater and watching bad tv :)

Thanks again for the lovely welcome - it means a lot.

Bluebird - I know what you're going through; the waiting, and not eating while losing weight, is the worst. Big hugs heading your way.

xLT
 
My Dr wanted to do the ultra sound on my pelvis incase maybe it's my reproductive organs giving me some grief because I'm young *shrugs* I dunno really all I can do is just do as she says and I best do because she seems like a rather stern woman lol
On the upside I did get called skinny for the first time in my life lol which I'm not. Wish the weight loss was for good reasons though.
I'm glad I'm a sleep for a colonoscopy because I was a bit worried I would run out of small talk and bad jokes :/

On Sunday I'm going to a BBQ so I'm going to take my own food, I have told my friend who's hosting it. Lot easier than saying no to everything that's offered.

My friend is also having issues and whilst doing a colonoscopy they found a mass :( so today she will find out if its pre cancer or cancer, makes me incredibly worried.

Awww Lenatilde :( poor you! You seem to be having a rough time too so I will have to also give you a big hug :)

A hug for Cat too for always being so helpful xxxxx
 
Bluebird, I usually take my own food too, when going to gatherings where food is provided. I've found that usually I can't eat whatever is there. Lots of questions of course, I'm a pretty thin person so I usually get some criticism about why I would be dieting when I'm already thin and there's such good food available. It get irritating trying to explain over and over again! Ugh. But at least when you bring your own food you don't get tempted to just "try" a little of what's there, knowing what will happen. Good luck and hopes for your friend.
 
Lenatilde, definitely let your doctor know about the dark tarry stools. You're correct, it likely is blood and it's likely coming from higher up in your digestive tract (so my guess is the flexi-sig probably won't find the source of the bleeding). Generally speaking, bright red blood usually comes from the lower digestive tract (colon/rectum/anus) and can be caused by things like hemorrhoids or anal fissures - so bright red blood usually isn't particularly worrisome as there's often a pretty benign cause for it. Darker blood tends to be more worrisome as it's likely not coming from a hemmie/fissure, so do definitely let your doctor know about it right away.

Bluebird, I hope your friend is okay! Yes, they'll give you good sedation meds for the colonoscopy. It's called "twilight sedation" which they say means you're mostly asleep but can still respond to commands (like if they need you to move a certain way, etc). And the twilight sedation temporarily removes your short-term memory too. I've had 3 scopes in the past few years (2 upper and 1 colonoscopy) and I don't remember a thing from any of them. The fun part is waking up later, you don't remember things from one minute to the next. :p I vaguely remember, after my first colonoscopy, I asked my husband what time it was. He just smiled and said that was the 4th time I asked him that. And after my first upper endoscopy, I got home and told my hubby that I was mad that my doctor didn't even come out and talk to me afterwards. Hubby said, "He did talk to you! For like 10 minutes. You seemed coherent. How can you not remember that?" But I have no recollection of that conversation whatsoever. Whenever I have another scope, I'm tempted to sneak in a tape recorder so will know what's been said! :p

Oh, and yes, I also bring my own food with me when I'm not sure if there will be safe food or not. Pretty much everyone I know already knows that I have a "stomach illness" (I try not to give them the gory details) so people don't question it if I just sit in the corner and drink an ensure. Fortunately I don't get invited to many things (how sad is it that I'm happy about that!) so it doesn't come up much anyway. Honestly sometimes people are TOO helpful - I went to a get-together with co-workers about a month ago, and we went to a bar. All my co-workers know I have health issues and they were like, "What can you drink? Can you have beer? No? Soda? No? Lemonade? Hey, she can drink lemonade, somebody go get her a lemonade!" :p It was nice if a little silly, but I do appreciate that they cared enough to do that.
 
Cat- I have a friend like that too. He's always bringing me gluten-free, dairy-free and nut-free cookies, chips and stuff. He says he feels like he has to buy me something now and then because I deserve a treat and he knows I can't just have anything. He's very supportive! Now with this brain tumor thing he just keeps telling me he knows I'm going to be okay, he can just feel it. It's very nice to have such a good friend and to know he's thinking of me! Enjoy those lemonades!
 
I dont usually take food with me.. but I tend something beforehand to get me through.. but dont eat a lot in case there is something I like thats safe and I want to eat that! Haha.

My haemorrhoids are back (never really disappear) but they are hurting lots after all the big D im having lately. Feel like im going to vomit with just the pain from passing the stools.

I genuinely think its the sulfasalazine thats started it off. Ever since I got to the top dose it has brought on the big d. So we lowered the dose slightly.. and its not stopping.. and sharp pains kicked in the LRQ.
The rheumy nurse told me to stop the meds. Which I did. And the big d slowed down.
But.. you guessed it.. my joints started hurting.. (so I went back on the meds without telling my nurse/doc) and now the hemmies are back. Lol
We cant win can we? Lol... vent over.

How is everyone? This board has been quiet lately...
 
I got my biopsy results yesterday. I have a call into the doctors office. My endoscopy showed inflammation. Mild, but it is finally something other than normal that might explain this saga. The notes were to follow up with the nurse practitioner in the office in a month. Not sure what this all means. Home sick today. Migraine and feel slightly feverish.
 
quirky, I'll bet you were glad at least that there is inflammation showing, so there's something to see! I hope you get some answers soon.

I see the GI tomorrow, finally. Of course now my belly has settled down quite a bit and I haven't had much discomfort lately. If he wants me to have a colonoscopy I wonder if I should eat some food triggers right before? I don't want there to be nothing to see. All my current docs keep saying they "doubt" my previous diagnosis of Crohns.
 
Bozzy, I'm sorry to hear that - it sounds like either way, you've got some symptoms going on, how frustrating! Is there another med you could try that would work for both the joints and the guts? I think Humira is approved for both IBD and arthritis, although something like that probably shouldn't be started until you've recovered from your surgery (you don't want to suppress your immune system and then have surgery!).

Meg, I'm excited for you that they finally found something to go on in a test result! I hope this gets you somewhere. Hang in there, I know migraines suck. Do you get migraines regularly? I never ever got migraines until IBD came along, then I started getting them regularly. Fortunately Amitriptyline works quite well for me and prevents most migraines, so I only get maybe 1 or 2 a year now instead of 1 a month. I get the auras with my migraines too, which is possibly the worst part. Freaks me out so bad when suddenly my vision gets all weird, and the auras are always different for me so it's always something new and frightening. Anyway, feel better soon and let us know what your doc says about the inflammation!

Cindy, in my experience and from anecdotal evidence from the forum, it seems to me that it's usually not worth it to eat a trigger food before a GI visit. So many of us on here have tried eating trigger foods just before a big test or appointment, but it rarely seems to actually pay off. So don't make yourself miserable on purpose. Good luck tomorrow! I hope it's a worthwhile appointment!

How's everyone else? It sounds like Bozzy and Meg aren't doing so well. Add me to the list of people suffering today. I wrote a much longer post about this in my exercise thread, but I feel awful today and am passing blood again. The good news is, I think I figured out the cause (see other thread for the long theory/explanation). But I'm depressed about it and I always freak out when I pass blood - I'm not a bleeder! So I'm feeling bad tummy-wise and just depressed about the situation too. Blah.
 
@quirky - hopefully the inflammation gives some answers. Even if it dosnt technically show IBD in the biopsies.. there is proof of inflammation. Inflammation is painful (as we all know) and its proof of your pain at the very least :)

@mccindy - good luck with your appointment tomorrow! Keep us updated xx

@cat - I went back to my GP today regarding the above.. and she has changed my propranolol slightly. At the moment I take 2x40mg tablets morning and night (so 160mg p/day) .. she has kept me on the same dosage.. but has given 1x80mg tablet twice a day that are slow release. She is hoping this would lessen the impact on my bowels. And will see me in 4wks to compare.
To be honest I didnt think about the propranolol.. just presumed it would be the sulfasalazine causing me pain lol. So fingers crossed!!
Im sorry you are not doing too good either :( :hug:
 
Good luck, Bozzy. Slow-release capsules/tablets sometimes work really great so I hope that's the case for you. I was on Prilosec awhile back which apparently isn't slow release? My GI explained it and I don't remember precisely but it was something like that, it's supposed to work over 24 hours but isn't slow-release which makes no sense to me. Anyway, he switched me to Nexium which is basically the same medication but is slow-release, and it works so much better for me. So hopefully that's the case for you too.

I'm feeling slightly better this afternoon - I had 3 bloody bowel movements earlier today, but haven't passed any blood since this morning. I hit the gym to lift weights because I'm stubborn ;) although I avoided any abdominals exercises and I took it easier than usual, and that went well. That made me feel somewhat better. Things are still definitely somewhat "off" so I'm going to take things as easy as I can for the next day or two. Going to bed nice & early tonight because I am feeling wiped out! Looking forward to a hot bath too.
 
Quirky it's good there is something to explain your pain. Inflammation even though non specific is, as bozzy said, painful and goes some way to explain what is happening. Its up to the docs to figure out the nature of the inflammation and how to treat you.

Mccindy how did your GI visit go?

Cat what do you think is causing the blood? A resurgeonce of your ibd or do you think it's related to your food poisoning episode?

I'm out with what I think is food poisoning. We had a family event on Saturday and me, dad, husband, sister and one of my dads employees all became unwell the next day. My cousins were reheating the food and I knew when I was eating it it was risky due to the way they were handling it, so mad at myself. Everyone else has recovered but my husband and I still feel lousy. I'm still having fevers and passing blood again and undigested food (sorry for tmi) 5 days later. No one had symptoms as bad as me so I am hoping it's not causing me to flare especially at such a low pred dose. So annoying as my holiday after my initial blip was the best I've ever felt in my life.

On a happy note I am finally losing my pred hairy moon face! Yayyyyy!

Also, I had my MRI of my blood vessels on the 22nd of May. My GI said I would get an appointment after the MRI and I've heard nothing, when would you guys start chasing??
 
lsgs, I've noticed that the blood only happens the day after I've had a long bike ride. I think it's happening because, when I ride my bike, I need to keep my abdominal muscles tight and engaged for balance and steering and all that. If I do that for an hour or more, the guts seem to get really unhappy. I'm not sure exactly how that is causing bleeding, but that's the correlation that I've noticed. So I'm going to not ride my bike for awhile and see if the bleeding stops. I'm kind of depressed about it as I really like to exercise and I hate to have a form of exercise taken away from me due to my crappy health. So feeling pretty down in the dumps and mourning the loss of being able to ride my bike.

Of course I can always ride my stationary bike - it's recumbent, and I don't need to balance or steer and I can just sit back and let my legs do the work - but it's sooooo boring to sit on a bike that doesn't go anywhere. I was so happy for nice weather and being able to ride my bike, but I guess that's just not in the cards for me.

As for your MRI, I would definitely call the doc and start asking about those results. When I had an MRI of my liver, I was told the results were in the computer and basically ready immediately - but the doctor had to review the images first before I could be told anything. So if you don't have the results yet, it means your doctor hasn't looked at them or hasn't gotten back to you yet - so I would say definitely call the doctor and ask.

I hope you feel better - didn't you have food poisoning a few months ago too? Poor thing, hang in there. And nothing is ever TMI on here so don't worry about that. Undigested food seems to be part and parcel of having an illness like this, I think most if not all of us have experienced passing undigested food. I know I have - I swear I've eaten strawberries that I chewed well, but they somehow re-constituted themselves in my digestive tract and came out the other end looking whole again. :p
 
lsgs, I've noticed that the blood only happens the day after I've had a long bike ride. I think it's happening because, when I ride my bike, I need to keep my abdominal muscles tight and engaged for balance and steering and all that. If I do that for an hour or more, the guts seem to get really unhappy. I'm not sure exactly how that is causing bleeding, but that's the correlation that I've noticed. So I'm going to not ride my bike for awhile and see if the bleeding stops. I'm kind of depressed about it as I really like to exercise and I hate to have a form of exercise taken away from me due to my crappy health. So feeling pretty down in the dumps and mourning the loss of being able to ride my bike.

Of course I can always ride my stationary bike - it's recumbent, and I don't need to balance or steer and I can just sit back and let my legs do the work - but it's sooooo boring to sit on a bike that doesn't go anywhere. I was so happy for nice weather and being able to ride my bike, but I guess that's just not in the cards for me.

As for your MRI, I would definitely call the doc and start asking about those results. When I had an MRI of my liver, I was told the results were in the computer and basically ready immediately - but the doctor had to review the images first before I could be told anything. So if you don't have the results yet, it means your doctor hasn't looked at them or hasn't gotten back to you yet - so I would say definitely call the doctor and ask.

I hope you feel better - didn't you have food poisoning a few months ago too? Poor thing, hang in there. And nothing is ever TMI on here so don't worry about that. Undigested food seems to be part and parcel of having an illness like this, I think most if not all of us have experienced passing undigested food. I know I have - I swear I've eaten strawberries that I chewed well, but they somehow re-constituted themselves in my digestive tract and came out the other end looking whole again. :p

Ohhh Cat I totally get it. What sort of cycling do you do? I don't know if I've said before I used to be a keen road cyclist and one of the hardest parts of this illness has been giving that up. Recently I was clearing out my wardrobe and I couldn't believe the size of my cycling clothes compared to my prednisolone-fueled size now. They were like kids clothes! I miss those days. My road bike is currently gathering dust in the spare bedroom, I'm too scared to go out on it again. There is nothing better than getting out in the nice weather and going for a 3 hour cruise on the road bike. Where I moved to now there's a canal towpath that goes right across the country and I haven't been able to use it yet either, it was one of the reasons I bought the place too.

I ate out of date meat a few months ago and it gave me really bad nausea but nothing like this! Even still I'm having sweats, feel weak. It's just awful. My husband is the same. Even so it's kicked off a flare of my autoimmune disease, my joints are achy and stuff. I'm so so so mad at myself for eating it!

I am so worried I'm going to get sacked for being off sick :O
 
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! :)
 
Hi all
I'm sorry I haven't been as supportive of you all as much as I would have liked - and sorry it's all about me, me, me right now... I feel so self-centered.

But I also feel awful in myself. I have my GI appointment tomorrow afternoon, and very awesomely just got my lady-time joyness. I don't fare well with periods, with very bad pains - including headaches, which mean I can't read/interweb/watch things on tv very well. Because my hips play up when I'm run down (fibro fun), I can't comfortably go for a walk. I have to take a bunch of codeine for the pain, as I cant take my tramadol at the moment, and this makes driving not too good - I love to drive. All of this, in turn, means I sit and freak out about my pains etc etc... And what if they don't find anything?? And what if they do??

I'm scared and sad and frustrated - and I hate the pressure I'm putting on my beautiful, loving husband :(

I feel so useless :(

I'm so sorry - I dont have anyone I feel I can say this stuff too... Thanks for listening.
XxLT
 
isgs - my appointment went pretty well. The GI is really nice, very good at listening. Asked a lot of questions too. He says about half of my symptoms and trigger foods are very indicative of Crohn's, but the other half are not so he's not entirely sure what's going on. He wants to do a colonscopy (my I-told-you-so moment, I knew he would). I have to schedule that when they call today or tomorrow, not sure when to schedule it as I see the Mayo Neuro Oncologist Monday and don't know what she's going to want to do yet. So I do have a colonoscopy in my future and then a repeat visit in about a month. He asked me what I've been doing about the constipation and I said "nothing", as I wasn't sure if taking anything would cause me more problems. So he told me to start taking 2 fiber tablets a day plus Dulcolax stool softener before bed, plus started me on a probiotic tablet as well. He did a lot of poking me in the belly so that hurt for a while after! All in all I have a good feeling about him though, so I guess I will just have to wait for the colonoscopy and see what that says. I'm still doing pretty well with low pain levels as long as I stick to my safe foods.
 
Hey,

So it's the night before the ultra sounds and colonoscopy and I've drank one bottle of that terrible drink they give you :( dear god I have a full other and I don't know if I can do it and I know I have no choice but its terrible.
I can't even pee because my arse feels like razor blades lol really hurts.
Can't wait to just get it over with.
I'm also wanting food and I could kill for subway or pizza (can't eat pizza even if I was allowed)
So far I've lost about 9.5 lbs, which i can stand to lose but it's not the point.

Aww McCindy I hope your okay :(


Hope your hubby had a fantastic birthday Cat! :)
 
bluebird, good luck with your tests! I hope the rest of the prep went all right. That stuff is terrible, I usually start throwing up somewhere about halfway through drinking it. Not looking forward to doing that in the near future!
I know what you mean about the pizza. My husband makes me a pizza when I'm craving it, with gluten-free crust, gluten-free sauce, rice shreds "cheese", chicken sausage and turkey pepperoni. It's pretty darn good. Not of course the same as the real thing but still a nice treat!
 
I was told to do a dulcolax miralax prep this time. It wasn't too bad. Still disgusting, but nothing like the magnesium citrate days. See if your doc will allow that Cindy. And don't use green Gatorade to do it, unless you love green Gatorade. : )
 

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