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Hi all, probably don't belong on these forums any more.

Been to my GI today, and he literally kept me in his office for no more than 5 minutes. The second I sat down, he told me he was discharging me because my flexible sigmoid came back completely normal. He has chosen not to do any more investigation with me and has said it is 'irritable bowel', and just to basically go away and get on with it.

He made one suggestion, and that was the low-FODMAP diet. Again. I did tell him I had an inkling that I think this may all be an intolerance, but half way through saying I want the breath test etc., he told me there was no reliable test and just to trial and error it all with diet.

I also told him I was passing blood and *a lot* of mucus today. He just brushed it off as a fissure, without even looking. In all honesty, I think it is a fissure that has been bleeding, but he honestly can't tell me to eat more fibre, drink more or exercise more because I'm militant about it anyway.

Not happy with it, but I suppose that's what I have got to do. Still don't like the IBS diagnosis, but probably, or most definitely, don't belong in these forums any more because I have started to disbelieve the whole IBD theory, but I refuse the IBS diagnosis.
 
Sorry Kellen, not just undiagnosed but now relegated to the THB , that's right the too hard bin. If you can't diagnose it reflect the heat back on the patient and make it their fault. I was lucky , lucky?, I developed a colon cancer that they just could not claim was my imagination. Eighteen years later they treat everything I get as a NEW problem and couldn't possibly b related to cancer and cancer treatment. During the 18 years one truth that has become evident. The only difference between a gp and a specialist is how much they charge to bull**** to you. Hugs Ron.
 
Sorry to hear that, Ron. It's not fair they haven't done any more scans as they will not check my small intestine for any more disease. Because the first part of my colon was fine, apparently all of the rest will be fine. I am just going to have to trial and error everything myself and see what makes me ill, and what doesn't.

I agree with that Ron. My GP and now my GI both fobbed me off. Funnily enough, I actually liked my GI, he's quite a nice man. Just a shame he refuses to do anything else for me. But he did say he'd still be there if I still have issues and he'd be happy to see me again.
 
I used to like my GI , then one day I was in hospital prepping for a colonoscopy and my GI sent a nurse up to give me my wafrin dose. I have never taken wafrin and I sent a note back telling her I don't intend to start now. A short time later I got a note telling me not to take the wafrin and a curt apology. Trust me we have to be our own strongest advocate. Our health starts and ends with us. hugs Ron.
 
Kelleh, I will never kick anyone out of the Undiagnosed Club. Even if you feel it's not IBD, you're still having similar issues and are free to post in here as long as you like. :) We do not exclude people here because it might not be IBD after all. You're suffering and need support and we're here for you!

Speaking of suffering, I thought I was doing better yesterday. But then I had SO much pain using the bathroom last night. I thought it was a new hemmie but now I'm thinking it's a fissure on top of an existing hemmie? It feels like a super painful fissure and is only bleeding a little bit like a fissure normally does for me. Even just passing gas is terribly painful though. I guess the positive side is, I'm barely bleeding at all anymore. And I am feeling more up to eating (although I'm not overdoing it because I don't want even more pain). Like, I actually ate lunch today and I'm planning on eating dinner as well. Hope I don't regret that!

Do you guys buy yourself presents when you're feeling really unwell? I seem to do that, and the worse I feel, the more things I buy. This has been a particularly bad week, so I got a new cute workout top and online I ordered myself a cute coin purse and some new gloves and a little belt thing for holding my keys and ID when I'm exercising. Not that I'm feeling up for exercise anytime soon, but I like buying exercise clothes and gear almost as much as I enjoy exercising (which is a lot). Oh, I got myself a new watch too. I don't even wear a watch normally but it was cute and I wanted it and it made me feel happy during an otherwise crappy time. So yeah, I bought myself some stuff to make myself feel better about the fact that my body is horrible to me. That's how I cope. It's not a great system because I don't actually have a lot of money to blow, but sometimes it feels like the only way that I can cope and keep going is to buy myself things. "I feel horrible and I'm in pain, but look! My new coin purse has cute owls on it! Yay, a reason to be happy!" And yes, it's a very temporary happiness, which is why I have to *keep* buying myself things. Like I said, not a great system, but I haven't figured out a better system just yet.
 
Yes Cat I have my own private movie library. The local dvd shop has a special four movies for $50.00. whenever I am unwell I get another four movies. I don't think I have seen many off them . Whenever I put one on I wake up two hours later with a wet left shoulder( I tend to drool a lot when asleep upright). I think it is the only time I get quality sleep. Ron
 
Cat I'm glad the bleeding is decreasing and hope everything else improves…

I was similarly quite ambitious yesterday and today with food, because I had a decent appetite! Ate a full dinner last night and a sandwich for lunch today…huge mistake! Horrible diarrhea, and it was undigested…have you all experienced that? It's a bit discomfiting…took some immodium and now I get to battle the dehydration all night…

To answer your question, I don't usually treat myself to gifts (in the past I would get a yummy snack, but now…) Maybe I'll look into some presents this weekend ;)
 
It's bizarre how he just told me I was fine and waved me away. He refused to do anything else, so I'm going to do this FODMAP diet again and see if it is an intolerance. If not, I'm going back to the doctors. I have had bad pain again last few days, but I have been stuffing my face with foods I potentially can't eat for months/ever again without it causing pain. It's all in my lower right now, and in the night last night was one of the worst. We shall see. I start the elimination process tomorrow. I've planned everything out, and I'll eventually add a food group back, probably lactose first. Just fed up with this. If I do get worse, I will be admitting myself to A&E. It's almost been a year now, where it just progresses. I'm passing so much mucus, I pass a lot a day, it's just horrid.

I buy myself presents when I'm ill too. Especially something fluffy and cute. There's a cute heat bag in the form of a fluffy, happy dinosaur that I have my eyes on at the moment. January is just a hard month in terms of money for almost everybody in the UK, unless you are really strict or clever!

How has your exercising been anyway?
 
Ugh, sorry for the double post. Awful feeling this morning. Had a bad stomach ache all weekend, probably because I was eating as much crap as I could in anticipation for this stupid diet. This morning I woke up groggy, and stomach hurts again. I had sore bits where I pressed on my stomach, and I just feel rubbish! Hoping this helps me, but I'm worried I'm going to be sensitive to everything! Just want to get down to the bottom of it. :(
 
Soooo I got to be well for about a week and now I have another virus. Terrible cough, can't sleep, the works.

My immune system is just not on top recently.
 
Sorry to hear that, Izzie. Your immune system sounds compromised, but this could also be down to stress. Just get some rest and catch up with some sleep. Hope you feel better soon.
 
Ugh. Today needs to end. Bleeding again. May be from a fissure again (but I'm not entirely sure if there is one), but it was there before anything passed. It passed blood. I'm stupidly constipated again. Going to try the steroid cream again, but this is getting absolutely ridiculous. Blood, so much mucus and the pain is driving me mad. Day 2 of this diet, and I just wish it'd work already. I'm so impatient.
 
Kelleh, sounds like a really rough time for you lately! :( It sounds like a good plan, though, to try the diet and then go to A&E if things continue to worsen. Bleeding is obviously never a good thing - is your GP keeping an eye on your bloodwork? Things like anemia and iron deficiency can really sneak up on you fast if you're bleeding fairly regularly. Good luck with the diet, I hope it helps you feel at least somewhat better.

Izzie, I hope you feel better soon too! I can relate, I've had at least 4 colds this fall/winter so far. My immune system is basically just garbage at this point. But, I *think* that's actually a good thing in a way. The first year that I was sick, when I was just flaring and flaring, I didn't catch one single cold. I was ill all the time of course but not due to anything contagious that whole year. It was like, at that time, my immune system was on all the time and attacking my digestive tract constantly, and it was so revved up that no viruses could get through. Or something like that. When I'm in remission is when my immune system is quiet because it isn't attacking me, so that's when I catch every cold and virus around. And I have felt for a little while that I might actually be back in remission - the bleeding issues are due to hemorrhoids, so if I could just get that under control, I'd actually be doing pretty well I think. I'd rather have multiple colds than multiple flares! So I just have to get this stupid bleeding under control.

On that note, only 1 month to go until I see the colorectal surgeon. I also see my GI next month. I really hope one of them can help me, because I go to Japan at the end of March! I've already decided, I'm just going to put myself on the steroid suppositories for the entirety of my Japan trip. I'd rather be safe than sorry, and the suppositories do help somewhat. I'd rather take a few weeks of steroids unnecessarily, than ruin the trip of a lifetime by spending it in the bathroom pooping blood. I'm also going to eat more lightly and simply, which shouldn't be too difficult to do in Japan (I'm trying to eat more simply before my trip as well). Since diarrhea seems to be the trigger for me that forms a new hemmie and sets off a new bleeding episode, I just need to be really kind to my guts. In Japan, I know I can eat a lot of things like rice & noodles, and that should be very easy on me. I read somewhere that rice balls are a common breakfast item in Japan and that they are sold pre-packaged in most convenience stores, so I plan to have that for breakfast every day I'm there. I might even stock up on rice balls and snack on them throughout the day.

So yeah, Kelleh, I'm not following a strict diet like you are, but I'm with you on starting to eat in a way that is kinder to my guts and hopefully helps me feel better. Speaking of Japan, how was your friend's trip there? I'm getting really excited, it's just a little more than 2 months until I go!

Oh, and I'm with you on buying myself presents that are fluffy and cute! Last time I was at the pharmacy to refill some prescriptions, they has all their xmas leftover stuff at 70% off clearance. They had a cute teddy bear who was marked at $10 but was only $3 with the clearance sale. Of course I had to buy that bear for myself!

As for going to the gym - I haven't been for over a week because of the bleeding. I am finally mostly healed - there's still a bit of anal pain when I use the bathroom, but no bleeding for a few days. I think there's still a hemmie there but it's shrinking/healing (I'm still on the steroid suppositories and will keep myself on them until the pain is totally gone). I'm thinking that I'm going back to the gym today, in fact. My joints have been really achey - the weather has been so cold (as cold as -30 F with the wind chill which is horrendously cold) and it really affects my joints when it's this cold. Exercise helps my joints feel better, so I'm going to go to the gym today although I'll take it a bit easy since it's my first workout in a little while. I want to lift some weights and stretch out all of my joints really well. If that goes okay then I'll take it from there. It's supposed to be in the 20s F the rest of this week, so I might go ice skating outdoors soon! My local outdoor ice rink is open and it's free, so I just need to grab my skates and go. That's always a fun workout. :) How have you been doing lately gym-wise?
 
Hi Cat, not seen you around for a bit these last few days! Nobody is keeping an eye on me, I was passed onto my GI and now he has discharged me. I feel absolutely rubbish right now. I'm meant to be going out tonight, but I'm fatigued, my stomach hurts and just general rubbish. I can't even explain myself properly.

My friends trip to Japan went well! But I didn't get many more details than that. He said he'll fill me in when he's in town again, which is in a couple of weeks time, so I'll get all the details then! I know he did a journal while he was out there, so hoping he brings that with him! I am betting you are really going to enjoy it though!

My gym was great for the last 2 weeks. Haven't been this week yet, as yesterday I felt awful, and today I'm meant to be going out. I've just taken some ibuprofen (probably not the best of choices), so hoping the pain stops, at least for a little while, and especially when I'm a music gig! Hopefully you'll get yourself back there soon, but don't push when you're bleeding or you could make yourself very ill!

Really sorry to hear about your hemmie! I know the pain of those, all too well! Ice skating sounds awesome! I just can't ice skate to save my life. I really wish I could. Hopefully it'll warm up a bit for you though.
 
Kelleh, is your GP any good? If so, I think you need to go back to them and have them at least do some basic monitoring of you (blood work, stool tests) and also ask for a new GI referral. It sounds like your current GI is done with you and I think you should be done with him as well!

I'll be really interested to hear more details about your friend's trip! Especially if he has any recommendations for things to do or see in Tokyo, Kyoto, Nara, or the Mt Fuji area (that's where I'll be). I think I'm going to have a wonderful time, I just desperately want my health to play nice with me for those 3 weeks!

I definitely won't push myself too much in the gym today. I'm slightly dizzy and I know not to overdo things. I'm going to focus more on stretching than on weights I think. Just to get my joints feeling okay. I'm not great at ice skating by any means - I used to be really good when I was in my teens, but then I didn't skate at all in my 20s or early 30s, so I've just been getting back into it the past couple of years. I used to be able to skate backwards and go fast and do front & back crossovers, but I can't do any of that now. I'd just like to feel comfortable and somewhat confident on the ice again, so that's the goal these days. Like, these days when I get on the ice, I have the baby deer legs feeling for the first 5-10 minutes and then after that I feel okay. When I was a teenager, I would skate for 2 hours and not feel tired. These days I'm lucky if I can muster 30-40 mins on the ice. So yeah, I'm not great by any means, but I enjoy it and I'd be fine if I can just get myself back up to being okay at skating.
 
Not really, no. They tend to gossip and think I'm making it up, especially with my mental health issues. They tend to blame it on those. Because my bloods came back normal both times, they're not concerned about me. Gary (my boyfriend) explained to me that they probably discharged me because they can't see anything immediately wrong, and it'd be too expensive to the NHS for them to do anything other, until there is some hard proof, such as bloods or me basically me near my death bed with some horrific blockage or stricture.

The thing is, my GI was nice. He was straight to the point, and I understand he was doing his job. I did ask him what to do if it got worse, and he said he'd be seeing me again, and he'd look forward to that point. But I did feel rushed, and explaining anything else to him just seemed absolutely pointless.

I will ask him straight away! I hope your health suits you fine too, especially with the yummy delicacies you can get your hands on!

Definitely don't do that. Maybe do a half an hour walk on a treadmill, that'll be kind to your joints and your tummy.

Woah, you were insane at skating! I'd just like to skate forward, please. :lol: At least you can do it and for a period of time! I look forward to hearing how you get on when you get to back on the ice!
 
Ha ha, at this point I'd just like to skate forward as well. :p Now that I'm older and arthritic and all that, I don't need to do anything fancy. I'd just like to have fun and have confidence on the ice. Not falling is my # 1 goal when I'm skating. It's a bit challenging when I skate outdoors - in an indoor rink, the ice is very flat and uniform. The free outdoor rinks, the ice is exposed to the elements so sometimes it's fairly warped or bumpy depending on what the weather's been like, and at those times it's a real challenge just to stay upright! But, I love being outdoors and I love exercising outdoors, so I'd still rather skate on the outdoor rink. I'll let you know when I do hit the ice - hopefully later this week or this coming weekend!

Ugh, my guts are giving me strong signals that I shouldn't go to the gym today. So I have changed plans, going to play it safe and not work out. I'm going to do some gentle stretches tonight because my joints need it, but otherwise I'm resting. Not super happy about that but I know I have to listen to my body, and it's telling me not to go to the gym. Bleh.

Feeling rushed with your GI is not a good thing, even if he was competent otherwise. A good doctor will listen to their patient, and it doesn't sound like he listened to you. Just because you're not actively dying doesn't mean you aren't suffering. I still think you should consider finding a new GI and getting a second opinion. I guess first things first, though - try the diet and see if it helps. That's basically where I'm at myself! Trying to be better about diet and see if I can avoid further bad bleeding episodes.
 
I went ahead and had blood work drawn last Friday because I still wasn't feeling up to par, and turned in stool samples on Saturday.

GI clinic called yesterday and said bloods all look "normal" (but they aren't posted online yet, which is driving me nuts, I'm one who likes to *see* them LOL!) so I guess that's good. Stool takes longer.

I ate poorly today and am paying for it :( nausea, D, etc. no fun
 
I have a feeling that I'm either arthritic, or the cold is just getting to my joints. I'll have a little google around to see what I can do to make them better. However, you probably saw on Facebook, I fell up the same set of stairs 3 TIMES within 10 seconds (according to my colleague), so that definitely didn't help my knees! They hurt already! Gosh, I'd keep falling on my bum at least during ice skating! I do wish I did ice skating in Sweden, that would have been fun. Obviously, here in the UK, we don't really have many outdoor ice rinks! Especially not natural ones!

Good on you! At least you know when not to do something. I'm going to try and go tonight, but we shall see. So far, my stomach has been quieter than it had been, but think I am going to have to run to the toilet in a bit! Eek.

I get free private medical healthcare with my new job if I pass my probationary period, so that may be something that could be looked at, if the NHS fails me again.

@Wildmtnhoney - sorry to hear that hun. :-( I know the pain of clear blood tests. Nobody seems to listen to you once that happens! Stool tests seem to take forever to come back.

Sorry to hear you're not feeling well. I wish I could eat rubbish, but I am going to stick to this stupid diet, as best as I can! :)

Good luck with your results. I literally know one person that got diagnosed quickly, and that was my boyfriend, and only because he left it until he was bleeding a LOT to see somebody, as he passed it off as haemorrhoids!!
 
Kelleh - My joints are killing me at the moment too! My physio suggested turmeric as it is good for reducing inflammation. Started taking it tonight. Also gentle stretching and heat or ice depending on what feels best.
 
Ugh. My stomach feels rough today. I'm exhausted and I feel like I'm more pale than usual. Last week's bleeding seems to be hitting me full force this week. Guess I'll be skipping the gym again.

On the plus side, I got new hemmie cream and it seems to be working at least for the external hemmies, so that's good. They stopped making my favorite hemmie cream (Tucks) and the only kind you can really get here now is Preparation H (which sucks and does nothing for me) so I ordered a hemmie cream from the UK. I think it's called Anusol? It got good reviews so I decided to give it a try. So far so good, it seems comparable to Tucks.

Kelleh, I did see that on FB about you tripping up stairs multiple times! Are you just very clumsy? I am as well, I am always walking into things or tripping over things, I always have bruises. I remember once at the gym, I walked right into a machine and gave myself a big bruise on my leg. Then, the following week, I was walking towards that same machine, and I told myself to make sure not to walk into it. Well, of course, I somehow still managed to walk into it again in the exact same way! In the same spot, I got a new bruise on top of my old bruise. :p It was ridiculous. Anyway, I hope your knees feel better! I agree with ice or heat and gentle stretching. Also, you could try a TENS unit if you have one, those can help with pain. I just got one myself, it basically sends electrical pulses into the muscle to block the pain signals. (Or something like that, it's something to do with electricity!)

Wildmtn, hope you're doing better today! I'm another one with "normal" bloodwork. My inflammatory markers are almost always normal (my CRP was slightly elevated one time). My CBC is always fine, my sodium is sometimes low but of course then I just get told to eat more salty foods. On the whole, if you look at my bloodwork over the years, you'd think I'm almost perfectly healthy. In reality of course, not so much. So I totally understand your frustration!
 
Lorikeetie said:
Kelleh - My joints are killing me at the moment too! My physio suggested turmeric as it is good for reducing inflammation. Started taking it tonight. Also gentle stretching and heat or ice depending on what feels best.
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I had turmeric on my chicken, nearly every day this week! It's odd, but at least it tastes nice on chicken!

@Cat - I was trying to put my drivers license away back in my purse, but kept messing up my footing. :p I haven't been *that* clumsy for quite some time now. However, generally I am.

Urgh. Stupid dry poop. Fissure definitely there, but I just keep passing orange mucus. Lots of it. It's weird. I just wish this constipation/frequent trip thing would be over and just stop. :boring: On the plus side, no blood today.
 
Real world belly issues: having so many trips to the bathroom that you aren't sure you'll make the 40 minute trip the dr's office to talk about your trips to the bathroom. (it's my mind-body therapist appt today, in an hour and 45 minutes).
 
Ugh so I got a cold again. With a really bad cough, like bad enough that I've coughed until I've puked for hours every day until today. My reflux/belching seems to have gotten way worse. I hope my hernia hasn't gotten bigger...

Would very much like to not be sick for a while...
 
Izzie, that sounds horrible! Have you gotten it checked out? It could be something like bronchitis or pneumonia, or even whooping cough/pertussis. Better safe than sorry, get it checked out because that sounds like more than just a cold! I hope you feel better soon, and can stay feeling reasonably well for a good stretch of time. You've been through so much lately!

Wildmtn, did you make it to your appointment? There's no shame in wearing a pad or diaper when you're not confident that you'll make it somewhere without soiling yourself. I've worn pads plenty of times, particularly when I've been bleeding. One day recently when the bleeding was bad, I don't even know what I was thinking but I wore khaki pants to work. Khaki! As in, light tan, as in, blood will show up on the butt of those pants if there's even so much as half a drop of it. Fortunately I keep a stash of pads in my desk at work, so I wore a pad on my butt the entire day. Anyway, I'm rambling, but I hope you were able to get to your appointment uneventfully.

Kelleh, this may be just me, but when I'm passing orange mucus, for me it always seems to mean that there's active inflammation. Orange can also be undigested fat - particularly if it looks oily or floats on the top of the toilet water. I still would suspect IBD for you (certainly it's got to be more than IBS). Your level of constipation sounds pretty extreme as well. There's got to be more than IBS going on with all of your symptoms. Definitely do see a new doctor privately if you can, or with a different doctor on the NHS. In the meantime, I hope your guts calm down and that you feel better!

As for me, I was having a rough day, but then I had my performance review at work and I got a glowing review. That felt really good and has boosted my mood tremendously. For awhile I've felt like my health has been affecting my job performance, but apparently not. It's nice to know that I'm not failing in at least one aspect of my life!
 
Well, called my GI office tonight after noticing blood in stool for the first time…it's been about a day of this…not bright red or black, so it seems to be somewhere from in the "middle" of my intestines…

The dr. suggested I go to the ER because of my low blood pressure, so it looks like I'm in for my first ER trip with this illness…of course the night before I have a paper due… haha!

I hope you guys are doing well. Winter is rough.
 
Izzie - I'm so sorry you're so ill!

Cat, hooray for a good review!!

I did make it! I wore thin pad, just in case, but things were ok. Then of course after being home I had to go have a bloody stool :(. Called the GI just because this had a LOT of blood to it, and my fissure before hasn't in the past. They think it's still the fissure, though. Makes sense - more going is what got it upset last time, too.
 
Melanie610 said:
I am new as of today....greetings all! :sign0144:

I didn't think it was appropriate to tell my story yet, and I'm glad I found this thread. I have not been diagnosed, and my first appointment with the GI is tomorrow. However in a nutshell, I have dealt with IBS for years, I don't have my gallbladder, I have been violently ill for two months, my primary care suspected Crohn's, and my symptoms mirror gastroduodenual CD from what I have been reading. I don't know what to expect really as I only know one person with Crohn's but she lives about 1,500 miles from me. Because of my issues with my gallbladder, I read about other things like PCS and sphincter of oddi dysfunction but it's just not what I'm experiencing.

Oh, I saw someone said something about costochondritis. Why would one get it, say, in their chest/rib cage? I'm curious now!
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I just googled it and it said an inflammation of the cartilage that connects a rib to the breastbone.
 
I did have it checked out and probably it's just that since I had the flu a few weeks ago my lungs are extra sensitive to infection? Though if it doesn't get better I'll have to go back in, never had a cough this bad in my life. I did get coughing syrup with kodeine or something in it, so that has actually helped. No longer cough until I puke.

I mean it's so bad that when I was in the hospital waiting for test results, other doctors came out of their offices completely unprompted to ask if I was okay and check if I needed oxygen haha. At least with the kodeine cough syrup I can sleep. Hopefully it'll pass until I go back to uni next week.

Which is something I'm also really nervous about actually. I kind of quit school in favor of work this fall/winter, and last spring I honetly hardly did anything because I was so sick so I've been away for almost a year.

So I'm trying to go back to full time studies AND working about 15-30 hours a week. Which will be fine as long as I'm somewhat healthy, but if I'm not I honestly don't know which thing I need to drop. I really like my job but I also want to finish a degree at some point. At least I don't have to commute anymore :)

Cat - congrats on being awesome at work!

Wildmthoney - Sorry you're not feeling well, I know how super stressful it can be to have bleeding and not feel like it's under control or that you know exactly what it is.
 
Izzie said:
I did have it checked out and probably it's just that since I had the flu a few weeks ago my lungs are extra sensitive to infection? Though if it doesn't get better I'll have to go back in, never had a cough this bad in my life. I did get coughing syrup with kodeine or something in it, so that has actually helped. No longer cough until I puke.

I mean it's so bad that when I was in the hospital waiting for test results, other doctors came out of their offices completely unprompted to ask if I was okay and check if I needed oxygen haha. At least with the kodeine cough syrup I can sleep. Hopefully it'll pass until I go back to uni next week.

Which is something I'm also really nervous about actually. I kind of quit school in favor of work this fall/winter, and last spring I honetly hardly did anything because I was so sick so I've been away for almost a year.

So I'm trying to go back to full time studies AND working about 15-30 hours a week. Which will be fine as long as I'm somewhat healthy, but if I'm not I honestly don't know which thing I need to drop. I really like my job but I also want to finish a degree at some point. At least I don't have to commute anymore :)

Cat - congrats on being awesome at work!

Wildmthoney - Sorry you're not feeling well, I know how super stressful it can be to have bleeding and not feel like it's under control or that you know exactly what it is.
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The best to you.
 
Discharged from hospital with some vague talk about haemorrhoids and otherwise treated like I was crazy. Then they gave me my discharge packet with urgent instructions to see my GI within 3 days!! Way to be contradictory -_- ! As if I would be able to see my GI in the next 3 days…with his schedule? Yeah right. Ugh.

It's nights like this I become extremely disillusioned with the medical system. So sick of this and ready to just give up. When one Dr tells me to go to the ER and the others treat me like I'm not worth their time…I'd rather just deal with this on my own, if it weren't for my constant weight loss :(
 
Adadzio said:
Discharged from hospital with some vague talk about haemorrhoids and otherwise treated like I was crazy. Then they gave me my discharge packet with urgent instructions to see my GI within 3 days!! Way to be contradictory -_- ! As if I would be able to see my GI in the next 3 days…with his schedule? Yeah right. Ugh.

It's nights like this I become extremely disillusioned with the medical system. So sick of this and ready to just give up. When one Dr tells me to go to the ER and the others treat me like I'm not worth their time…I'd rather just deal with this on my own, if it weren't for my constant weight loss :(
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I am sorry you are getting treated like this.
 
Cat, I remember you telling me about the orange mucus being a sign of inflammation for you. I have an inkling this may be the same with me.

I was in excruciating pain while eating my dinner last night (all I had was carrots, spinach, chicken and a small baked potato), like actually while I was eating. It was horrendous.

As for the constipation side, I'm starting to be concerned by the fact I have a fissure in a place that is not 'normal', I think I'm prolapsing, the stool is so hard, and it just breaks apart into pebbles, or sometimes just teeny-tiny little strands, a bit like a slightly larger rice grain. I go so often in the day, but I think I'm going to try and leave it until the urge to go to the toilet is so desperate, and I'm also going to try and cut down on the coffee today.

Taken ibuprofen today because my joints seem to be extremely stiff and achy. That's what my doctor told me last time, and it's pointless calling him up and asking him to get the same advice again. It could just be the weather, but this is the second time I've 'flared up' stomach wise and the joints have just decided to do the same thing at the same time. I was so ill last night. Stomach isn't much better this morning, getting some pain, just above my navel, a little to the left. Last night it was there and also on my right side.

I shouldn't have looked online, but I am starting to believe if I do have CD, it's PCD (perianal), as fissures I get are in odd positions, I have the purple-bluish skin tags (like elephant ears somebody described it! :-() and that's probably why they didn't see it in the sigmoidoscopy. I think they should have done a full colonoscopy. Potential of a stricture in the anal canal. I'm going to give this until the weekend and then see where to go from here. I've been very careful with this diet, but just seems to be making me worse right now. I'm textbook trying to keep the constipation out, but not helping.
 
Adadzio, I hope things went okay at the ER! Let us know how you're doing today. You're right that blood that isn't bright red is likely from higher up in the digestive tract, so it's likely from something other than a hemorrhoid or a fissure and should absolutely be investigated. I hope they were able to get you some answers in the ER!

Wildmtn, I'm glad you were able to make it to your appointment! That sucks about the blood, though. If you think it is a fissure, you can always check. This isn't the most pleasant thing to do, but you can sort of squat over a mirror to get a look at what's going on in the anal region. With a large amount of blood like you described, it's probably a fairly large fissure so you should be able to see it reasonably easily. If you don't see any fissure (or if you see a large fissure), I think you should call the doctor back and ask them to investigate and treat it - something like a steroid cream could help. Good luck! I hope the bleeding stops soon!

Kelleh, I'm planning on going ice skating today! I'm still not feeling great, but I think I'm okay to do a half hour of skating on my lunch break today, so I brought my skates with me to work and I'm going to go to a nearby ice rink on my lunch hour. The weather looks ideal - low/no wind, and a high temp of upper 20s F. So it's not super cold, but also not warm enough to melt the ice - perfect! I'm excited! I'll let you know how it goes.

Edit: I apparently missed seeing all of the posts on the most recent page. :p Adadzio, that sucks that they didn't help you more. I've had lots and lots of bleeding from hemorrhoids, and it's always bright red. When do you see your GI? Hopefully soon. Perhaps if you call him, he can get you in sooner? My GI always has a wait list of 3 to 4 months long for regular appointments, but if I'm doing very poorly and need urgent help, he can usually shuffle things around and fit me in within a few days. So do call your GI even if you don't think it'll help - at the very least, they should be able to put you on the cancellation list and get you in sooner if someone else cancels.

Kelleh, the ibuprofen probably isn't helping your digestive symptoms at all! That stuff is really rough on the digestive tract. I actually suspect it played a part in me developing IBD - I was kayaking a lot in the summer of 2009, and I took a lot of ibuprofen to deal with the muscle aches. Then I got sick in October 2009. Maybe a coincidence, but at any rate, I have never taken ibuprofen since then and will never take it again. Not worth the risk. The food you mentioned eating also sounds iffy - did the potato have the skin on it? I can't digest potato skins at all. Veggies can be iffy as well - spinach just turns my stool green, it's obviously not breaking down right. I agree that a full colonoscopy is a good idea for you - hopefully your GI (or a new GI) will be on board with that idea! Especially if things continue this way for you. Hang in there!
 
kellehbeans said:
Cat, I remember you telling me about the orange mucus being a sign of inflammation for you. I have an inkling this may be the same with me.

I was in excruciating pain while eating my dinner last night (all I had was carrots, spinach, chicken and a small baked potato), like actually while I was eating. It was horrendous.

As for the constipation side, I'm starting to be concerned by the fact I have a fissure in a place that is not 'normal', I think I'm prolapsing, the stool is so hard, and it just breaks apart into pebbles, or sometimes just teeny-tiny little strands, a bit like a slightly larger rice grain. I go so often in the day, but I think I'm going to try and leave it until the urge to go to the toilet is so desperate, and I'm also going to try and cut down on the coffee today.

Taken ibuprofen today because my joints seem to be extremely stiff and achy. That's what my doctor told me last time, and it's pointless calling him up and asking him to get the same advice again. It could just be the weather, but this is the second time I've 'flared up' stomach wise and the joints have just decided to do the same thing at the same time. I was so ill last night. Stomach isn't much better this morning, getting some pain, just above my navel, a little to the left. Last night it was there and also on my right side.

I shouldn't have looked online, but I am starting to believe if I do have CD, it's PCD (perianal), as fissures I get are in odd positions, I have the purple-bluish skin tags (like elephant ears somebody described it! :-() and that's probably why they didn't see it in the sigmoidoscopy. I think they should have done a full colonoscopy. Potential of a stricture in the anal canal. I'm going to give this until the weekend and then see where to go from here. I've been very careful with this diet, but just seems to be making me worse right now. I'm textbook trying to keep the constipation out, but not helping.
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Hoping the best for you.
 
Cat-a-Tonic said:
Edit: I apparently missed seeing all of the posts on the most recent page. :p Adadzio, that sucks that they didn't help you more. I've had lots and lots of bleeding from hemorrhoids, and it's always bright red. When do you see your GI? Hopefully soon. Perhaps if you call him, he can get you in sooner? My GI always has a wait list of 3 to 4 months long for regular appointments, but if I'm doing very poorly and need urgent help, he can usually shuffle things around and fit me in within a few days. So do call your GI even if you don't think it'll help - at the very least, they should be able to put you on the cancellation list and get you in sooner if someone else cancels.
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Yeah, I think the ER physician heard that I was constipated and immediately dismissed it as nothing. Which is fine…I knew there was nothing to be done until I get my scopes through the GI…but the office told me to go to the ER to check my blood levels. At least (according to hospital, thought they wouldn't even give me details) I'm not severely anaemic or anything. I was pretty dehydrated but they refused to even give me water while I was waiting for my bloods!! I don't know why! I was stunned. Waste of time and money :(

I have scopes scheduled for Feb 22. But the office GI on call said he would talk to my GI today and try to get it moved up. So, we'll see what they say. I don't know. I know you all can relate, after so many years of going through this…when some doctors look at you with that look, you start to feel crazy, like it's all in your head after all… the only thing keeping me positive is my main GI who keeps saying my weight loss is absolutely indicative of a problem. So, looking on the bright side, I have hope that he will continue to advocate for me...
 
Cat, I know ibuprofen is rough and probably is not helping me in the slightest, but I have to give it a chance in terms of the aches, as the doctors will just tell me to do it, which is annoying. The food I have is generally okay, but yeah the skins may not be the best of things to have eaten - but it's fibre, it should be helping. But I literally have poop stuck in my rectum, and I guess it's struggling to get out. I can't keep straining, I'll make, what seems like a prolapse, worse. The mucus is horrendous, but I think everything is mixed with blood at the moment. I'll keep an eye on it.

Good luck ice skating! I'm going to head to the gym today, and maybe just do 45 mins of light cardio, just to make me feel that little bit better. I don't feel so drained at the moment, and I feel like I could go to the gym. :) Just don't want to upset my stomach.

Thanks Ronroush7.

Good luck Adadzio, sorry to hear the problems you are having. I think most of us on this forum know it all too well, unfortunately. Supporting you from afar!
 
Adadzio, they wouldn't even give you water?? That's absurd. I try to avoid the emergency room as it's so expensive, but I've been to urgent care many times for dehydration and they always give me IV fluids (even as they're muttering that I just have IBS). For next time, is there a different ER or walk in clinic that you can go to instead? Some hospitals are just bad and some doctors are just bad. I'm so sorry you had such a bad experience. I hope you can see your GI and have the scope done sooner.

Kelleh, the possible prolapse sounds really awful and I think you should see a doctor right away for that! I haven't ever had a prolapse, but it's my understanding that it's the sort of thing that needs to be treated and not just left alone. I realize this doesn't sound like the most fun thing ever, particularly with Adadzio's bad experience, but can you go to the emergency department? Do you guys have anything like urgent care or walk-in clinics there in the UK? I think the prolapse really needs to be addressed by a doctor, like now-ish.
 
I didn't even ask for IV fluids (thought I probably should have had some..) and nope, they wouldn't even give me a glass of water...it was so strange. I've heard of fasting before blood tests before but this wasn't anything like that…they took a full rainbow draw (6 or 7 vials) and I was already feeling bad from low blood pressure etc (below 90/50). The nurses kind of threw me in a back room and the doctor came in to check my rectum but other than that I was left alone for an hour or so. I finally asked my friend to find me some water (there was no call button in the room!) or ask if a nurse could bring me some water as I was dehydrated and dizzy. They told her I wasn't allowed water until my blood results came back?! I've honestly never heard of that… it was just a weird and uncomfortable experience and I felt like they had no interest in helping me.

The weird thing is it's a nice hospital and right down the street from my university…it's within my medical network so they had me and my GI in the system and everything. I don't know. I've always avoided ER/medical places because of this type of experience. My stool is still bloody and I feel awful today. But unless I am vomiting blood nonstop or passing out left and right, I'd rather never have another ER visit!
 
Adadzio, that's nuts. I've never heard of denying someone water in the ER, either. Unless they were thinking of doing other tests where you have to have nil by mouth for a certain time beforehand, but it doesn't sound like that was being considered. Very odd!

As for the bleeding, just keep an eye on things - if you get very pale or dizzy or light-headed, that's a warning sign that you should go to the hospital. Pale gums is another warning sign, from what my GI told me. When I told him at my last appointment about how bad my bleeding was at that time, right away he asked to look at my gums. I know you don't want to go back to the ER, but if you have any of those symptoms, please do go back (or go to a different ER, or urgent care, just go see a doctor).

Any idea what blood tests they ran on you? Have you gotten any of those results back? Also, you said the doctor examined your rectum - was it just with his finger, or did he do an anuscope? (It's a little clear plastic thing that just lets them see the inside of the anus & rectum.) If it was hemorrhoids, and if they did an anuscope, they should have been able to see the hemorrhoids. You haven't mentioned hemmies, so I'm presuming that's not the cause of your bleeding (and it's probably why they said to see your GI right away, because they couldn't ascertain the source of the bleeding). Anyway, I'm rambling, but I really do hope you see your GI soon. Have you called him?
 
Oh, I forgot to say - Kelleh, I went ice skating! And I'm SO COLD now! :p But I feel good. I started out with the baby deer legs feeling, so shaky and just struggling to stay upright. To make matters worse, there was a lady at the ice rink with her kid, and this lady was so good at skating. She hopped right onto the ice and immediately started skating backwards, doing spins, etc. I was like, ugh, show-off! (Also I was super jealous.) Fortunately though, her kid was terrible and he kept falling, I think he was just on the ice to appease his mom. He was trying to play hockey but he did more falling than hockey-playing. The kid's terribleness on the ice made me feel better about my mediocre skating (is that horrible of me?).

Whenever I work out on my lunch break, I get an hour lunch and my workout usually ends up being about 8 songs long. I have a workout playlist and I just hit shuffle on it, and it usually ends up being 8 songs which is about 35-40 mins (I also need time to change clothes, when I'm going to the gym, so including changing into and out of my workout clothes, that eats up the full hour). Today, I didn't have to change clothes (I'm wearing fleece leggings and a sweater dress which is fine for skating in), but I had to drive 5 mins to the ice rink and put on my skates, so it still worked out to be about 8 songs' worth of time. It was colder than I expected out and I was in some pain in my abdomen and anal area, so I told myself to just make it through 5 songs and then I could quit if I was miserable. Well, I did much better! I got through 6 songs, checked the time, saw that I still had some time, and ended up getting through 9 songs no problem! And as the time went on, I got more confident and relaxed on the ice and could actually skate a bit fast, I even felt like I could do more than 9 songs but I was out of time at that point. So I skated a solid 40-45 minutes today. My legs are super tired now and I'm very cold still, but I feel good. I think my abdomen and anus feel better now than they did before skating! Although my knees are definitely achey now, my joints don't like the cold so much. Still, I feel good overall. I'm so glad I went. I want to go skating again soon!
 
Cat-a-Tonic said:
Adadzio, that's nuts. I've never heard of denying someone water in the ER, either. Unless they were thinking of doing other tests where you have to have nil by mouth for a certain time beforehand, but it doesn't sound like that was being considered. Very odd!

As for the bleeding, just keep an eye on things - if you get very pale or dizzy or light-headed, that's a warning sign that you should go to the hospital. Pale gums is another warning sign, from what my GI told me. When I told him at my last appointment about how bad my bleeding was at that time, right away he asked to look at my gums. I know you don't want to go back to the ER, but if you have any of those symptoms, please do go back (or go to a different ER, or urgent care, just go see a doctor).

Any idea what blood tests they ran on you? Have you gotten any of those results back? Also, you said the doctor examined your rectum - was it just with his finger, or did he do an anuscope? (It's a little clear plastic thing that just lets them see the inside of the anus & rectum.) If it was hemorrhoids, and if they did an anuscope, they should have been able to see the hemorrhoids. You haven't mentioned hemmies, so I'm presuming that's not the cause of your bleeding (and it's probably why they said to see your GI right away, because they couldn't ascertain the source of the bleeding). Anyway, I'm rambling, but I really do hope you see your GI soon. Have you called him?
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That's a good point about the water—I think that must be it, that they were prepping in case I needed further testing. I knew there had to be SOME reason…
I'm not too sure if it was an anuscope. He stuck something into my butt and told me to push like I was going poop, then showed me some little paper and said it didn't turn blue so there was no bleeding in my rectum (I could have told him that, because it's only mixed into my stool, not coming from my butt…). But he still chalked it up to haemorrhoids, even though my blood is very dark red. He admitted I need to get my tests to find the exact cause though.

Good news, my GI just called to push up my scopes to next Friday! I guess something good came out of that annoying ER visit after all...:rolleyes:
 
It's good to hear that your scopes have been moved up! Hopefully they'll find the source of the bleeding. Make sure they take lots of biopsies. And let us know if you have any questions about the scopes or the prep (the prep is admittedly not a fun time but the scopes are a breeze because of the sedation). What prep are they having you do?
 
Another anniversary for me. I had my colon cancer removed on this day in 1998. It was stage3 into six lymph nodes,I was not expected to survive beyond three years, today ends year 18 start year 19. Amazing how long you can go with a broken exhaust. Ron .Hugs to all.
 
Cat-a-Tonic said:
It's good to hear that your scopes have been moved up! Hopefully they'll find the source of the bleeding. Make sure they take lots of biopsies. And let us know if you have any questions about the scopes or the prep (the prep is admittedly not a fun time but the scopes are a breeze because of the sedation). What prep are they having you do?
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Yes, it says I am scheduled for:
ESOPHAGOGASTRODUODENOSCOPY, COLONOSCOPY, POSSIBLE BIOPSY, POSSIBLE POLYPECTOMY

So hopefully they will find something…
I am quite nervous for the prep, especially as I have work and class the day before…will let you know if I have questions next week! I believe I am doing Golytley? I will have to check my prescription...
 
Cat, I probably should. Read that it can cause bleeding etc. so it may be the cause. But last night, I went to the toilet and at one point I just produced some watery stuff, I don't think it was quite mucus, I don't know. All the mucus is orange. Everything is orange. It's hideous. I know poop isn't beautiful, but this is just worrying. The fissure has got worse, and I am using some steroid cream, it just needs to go away! This morning I was desperate to go for the loo. I went, but it was just loads of pebbles. Nothing pretty solid. Last night I had a desperate urge to go and I just passed mucus. Urgh. Horrible.

Woo for the ice skating! Poor kid is as probably as good as me, or probably even better! Bit scary really! I want to go ice skating now though, I may have a look in to it over the next few weeks and see if some of my friends would like to come along. Definitely couldn't go on my own, I'd look like an absolute doughnut!

WOW Adadzio, you are scheduled for a lot of tests! Good luck! I wish I could have that many, but I just get fobbed off! Just fingers crossed for you. Keep us updated.

The scopes are definitely not fun as Cat said, but I only had a sigmoidoscopy, and I was awake the whole time. It wasn't pleasant, and it only hurt a bit. I think the worst part is where they have to get past a certain bit of the colon that is a bit thicker and they have to push it a bit harder. When I got up after and walked across the ward back to bed afterwards, I blacked out! According to my GI, this is a 'parasympathetic response' where they could have hit a nerve that caused it to happen!

It's my last day at my job today for the last 5 years. Bit scary, but I have a wonderful card from the guys!
 
Adadzio, make sure they know that instead of "possibly" taking biopsies, they need to absolutely be taking multiple biopsies. Some things, such as microscopic colitis, can ONLY be found on biopsy. And if it's Crohn's, some doctors will only diagnose when they see definitive evidence on biopsy (such as Crohn's granulomas). So yes, make sure that before they do the scopes, that they're absolutely clear that they must take biopsies! Be insistent about that!

You work and have classes the day of your prep? Hopefully you start the prep after work and school! Because you're seriously not going to be leaving the house, and at times you won't be leaving the bathroom, once the prep kicks in. You might want to call in sick and skip class if you'll be away from your home/bathroom at the time that you have to start drinking the prep. Seriously, the prep kicks up the diarrhea and the urgency to insane levels. If you absolutely must go to class/work while prepping, wear a diaper and stay near a bathroom. And maybe bring some emergency supplies, like spare pants and wet wipes.

And yeah, as Kelleh said, the scopes themselves aren't too bad. I was actually awake for my flexible sigmoidoscopy as well although that wasn't intentional - they gave me the sedative, but for some reason it failed me and I was awake and talking, although very loopy and I don't remember much. The good news is, even though the sedation essentially failed me that time, there was no pain and no discomfort at all (they give you good pain meds with the sedation - in the past I've always gotten fentanyl for pain and versed for sedation). The only thing I really remember about being awake for that scope was, I wasn't wearing my glasses (I had given them to my husband for safekeeping during the scope), but I was trying to look at the video monitor to see what was happening on the scope, but I couldn't see without my glasses. So from what I recall, I kept whining, "I can't seeeeeeeeeeeee!" in a weird drunken way. :p So yeah, even when the sedation fails, it's still not a bad experience. It was kind of funny actually! And for all of my other scopes, the sedation worked great and I felt like I had just had a nice nap. Long story short, the scopes are a total breeze. It's just that the prep isn't so pleasant (it seems wrong to drink a ton of laxative when you're already having constant diarrhea!).

Kelleh, I agree that it's worrying - with the possible prolapse, blood, orange, mucus - all of it together sounds like something that really needs to be looked at by a doctor ASAP. I hope you can see a doctor soon, whether it's your GP or GI or going to the emergency room. And honestly, this is probably your best chance at getting a diagnosis - if you see a doctor when things are at their absolute worst, you've got a better chance of them finding the cause. So go see a doctor!

Ice skating is fun, but yeah, particularly when you're learning, it's going to be challenging! You think that you must have strong legs because you work out a lot, but as soon as you get on the ice it's like, nope! I am so shaky and my shins are absolutely burning for the first 5-10 minutes on the ice. It's like, do I have any ankle strength at all? I've been specifically working on my ankles in the gym! But still, they burn and shake as soon as I've got my skates on. :p Fortunately that feeling goes away after a little while, so if you do go ice skating, just try to push through the initial discomfort. You'll get more comfortable on the ice as time goes by. If you do go skating, let me know how it goes! I hope you have lots of fun!

I'm sure it's bittersweet that it's your last day at work, but hopefully your new job is wonderful! You said it's a lot more money, too, right? I'm sure that alone will be well worth the change! Just try to take it easy, times of big change means a lot of stress which isn't going to do you any favors symptom-wise. So I hope you have a stress-free, relaxing weekend and an easy transition into your new job. Keep us posted on how it goes!

How's everybody else today? I'm doing somewhat better, finally. Guts feel better today than they have in awhile. I still have a small external hemmie but it's almost gone, I've been putting cream on it every day. I haven't bled in almost a week now and I'm finally not feeling dizzy and I might have a little more color in my cheeks. I am going to go to the gym today, finally. I'm encouraged by how well I felt after skating yesterday. I think I might go skating again tomorrow too! :) My city has a fair number of free outdoor ice rinks and I might go to the really big one - eek!
 
No idea if it's IBD, but it sounds pretty much like it. Definitely not IBS, definitely not. I will need to go and see one, but unfortunately, because of my new job, I don't want time out. Unless I get in a ridiculous amount of pain later, I don't think I'll be calling A&E! Had another rushed toilet jobby today, lots again, but all pebbles. So irritating!

I am a little sad that I'm leaving right now, but I'll get over it. Just want to get the day over and done with right now! Said I was going out tonight, but not sure I can be bothered any more!

Haha, I have some ankle strength because I quite often wear high heels! I definitely need to give it a go again though, and maybe get some practise in!

Glad to hear you're good today! :)
 
I'm the opposite, I *never* wear high heels! It's flats for me all the way. With my arthritis, high heels are just not friendly to me. I need to be as kind to my joints as possible.

I agree that it's surely not IBS for you at this point - with everything you've described, it's got to be something more and probably something inflammatory. There are other inflammatory illnesses besides IBD that can cause digestive symptoms - Lupus, Behcet's, Addison's are the ones that come immediately to mind. I'm presuming they've checked your thyroid levels through bloodwork? Thyroid issues can also sometimes cause IBD-like symptoms. I'm sure there are a lot of other things that this could potentially be, but it's Friday and my brain is tired and I can't think of others at the moment. :p But yes, it's got to be more than IBS.
 
I haven't worn them for a long time either, especially because I can't be bothered, or feel too ill and can't be bothered, or joints hurt and can't be bothered!!

Yeah, thyroid has been checked. Mum bought that one up last night as she has thyroid issues, but I'm pretty sure that it'd have been picked up the first time they tested me for it! I don't think it'll be anything like Lupus, but I may ask for them to test if I have to go back to my doctors again!!!
 
For Lupus, they usually do blood work (ANA) and also go by symptoms - I think you need to have a certain number of symptoms from a list. I don't have enough Lupus symptoms and my ANA has always been normal/negative, so no Lupus for me. (Which is a good thing!)

They also checked me for Addison's, because I had such a good response to a low dose of prednisone. With Addison's, your adrenal gland either doesn't work well or doesn't work at all, so your body doesn't make its own cortisol anymore like it should. Pred is just basically a synthetic form of cortisol. The body naturally makes about 7.5 mg of cortisol per day, and I had a really good response to 10 mg per day of pred, which is why they thought maybe Addison's (usually it takes higher doses of pred to achieve remission with IBD and other inflammatory illnesses). That was a longer blood test - they inject you with some stuff, then see how your cortisol levels respond over a period of a few hours, so they periodically draw your blood for 2-3 hours after they inject you with the stuff. But that came up negative for me as well, no Addison's.

So yeah, at this point, I basically have a presumed diagnosis of IBD because of my symptoms, because I respond so well to steroids like pred, and because we've ruled out most everything else that would respond to steroids and cause IBD-like symptoms. It's completely just a pseudo-diagnosis of exclusion at this point, but hey, if it's the best I can get right now, I'll take it. At least my doctors treat me as though it's IBD (rather than IBS) and give me IBD meds and stuff.
 
Cat-a-Tonic said:
Adadzio, make sure they know that instead of "possibly" taking biopsies, they need to absolutely be taking multiple biopsies. Some things, such as microscopic colitis, can ONLY be found on biopsy. And if it's Crohn's, some doctors will only diagnose when they see definitive evidence on biopsy (such as Crohn's granulomas). So yes, make sure that before they do the scopes, that they're absolutely clear that they must take biopsies! Be insistent about that!

You work and have classes the day of your prep? Hopefully you start the prep after work and school! Because you're seriously not going to be leaving the house, and at times you won't be leaving the bathroom, once the prep kicks in. You might want to call in sick and skip class if you'll be away from your home/bathroom at the time that you have to start drinking the prep. Seriously, the prep kicks up the diarrhea and the urgency to insane levels. If you absolutely must go to class/work while prepping, wear a diaper and stay near a bathroom. And maybe bring some emergency supplies, like spare pants and wet wipes.
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Thanks, I will definitely push for the biopsies then!

Yeah, it's kind of a frustrating situation…my school runs on a trimester system, so 10 weeks of classes, which means we are generally only allowed 2 absences (often even excused ones count against you!) and after that you get a grade deduction :( But, I have tried to explain the situation to my professors, and they're generally understanding…I admittedly have pride and stubbornness preventing me from missing. I hate not even having a definitive diagnosis to use as an "excuse!" If there's anything this illness has taught me though, it's that I can't do everything I used to, and sometimes I need help, and that's ok...
I believe the prep starts late afternoon (my scopes are early morning on Fri) so I might just dip out of my night studio class early and tell my instructor I'll be working from home.

Hah, that sounds like an eventful time! I'm not too worried about the procedures, I've had several major surgeries from a young age so this should be a breeze! The prep on the other hand…yuck! The pill cam prep wasn't super fun (2 day fast and magnesium citrate) but I know this'll be worse! Ah well. I'm more terrified that it will all be for nothing, but I won't worry about that yet…

On that note, I read your last post, and I'm curious…why HAVEN'T they diagnosed you?? It just seems crazy with all your symptoms and response to meds… has nothing ever come up in tests!? (I'm sure you've answered this a million times before, apologies :ytongue:
 
I booked a doctors appointment for tomorrow morning as my fissure seems to be getting much worse! Stomach is awful. I've been in the toilet so much today. Urgh. Let's see what they suggest. I'll ask about these other blood tests. I wish they'd try me on pred orally (rather than suppository!) to see how I get on!
 
I have had some dreadful drugs including two chemo agents one of which was banned the year after I was on it for fatal side effects. I an now tapering from 80mg daily of oxycodone as Targin. Of all the drugs that I have been on (all prescribed by the way I have never tried any illicit drugs not even mj) I found prednisone the worst by far. I was on 75mg daily for 18 months plus another five months of taper. It did not help my problem, nephrotic syndrome,but it did bring on type two diabetes and osteo-penia. I am surprised that I survived it considering the impact it had on my mental health. I hate to see it used except in short bursts at low dose...Ron.
 
Doctors update: she was quite helpful, but not really. She gave me a prescription for Amthriphyline (sic?) which I'm already on an antidepressant and didn't think I could take both. Apparently because one is moderate and the other is low, I can do both. Also have some laxido to soften my stool. When she had a look at me she told me I had quite large haemorrhoids and said my fissure looked as if it would heal, but didn't give me no creams because of the constant constipation. I've been to the toilet 7 times today, all horrible lumps. But apparently the Laxido will help. When I asked her how I could deal with the constipation because I do everything by the book (e.g., exercise, fibre and water), she said with IBS-C that's just the way things are. Funny that, because everybody with IBS-C is helped by the rest of these things!

When I say constipation, I refer to the whole hardness of stool, not frequency!

Ugh.
 
Sorry you're dealing with such horrible constipation kelleh :/ I just finished a few weeks of C, so I know how uncomfortable that can be! I now seem to be in a phrase of frequent loose stools (not quite D, so at least that's good…)

I now realise what the stuff is in my stool—a TON of mucous. This is what the dark blood has been mixed into…yuck. I honestly had no idea what this stuff was until I looked it up…it's so unnerving and gross!! :p Been having horrible pain and fatigue again after eating…ugh. Just need to get to Friday, and hopefully then I'll have some answers…

The more I think about it though, the more I'm feeling skeptical about getting a diagnosis. I know for sure I have some issues in the ileum (but not necessary the terminal ileum, just the "distal" part?) but I've heard neither the upper scope or colonoscopy can reach that far…so I'm worried they'll find nothing. (I can't explain how frustrated I am that the pill cam saw nothing, when my barium x rays clearly saw a problem!!)
 
Hi all,

It's been a while! Sorry to hear you're all still feeling poorly. It seems like bleeding is everyone's most similar symptom. I am still having it too...but its always bright red and not every single time, although other weeks it can be. I have had this since October! I went to the GP and she tried doing a rectal exam but ouch, nope that didn't happen. Embarrassment for nothing! Sometimes i can see a bleeding fissure but its in an odd position, however most of the time i would say the bleeding is from a hemmie.

Can all of these last this amount of time?
 
@Adadzio - I suffer from C almost all the time, but I just frequently go to the toilet. Both D & C give me fissures, so I can't really win.

@meganwilson1991 - yes, they can last that long, especially if you have D or C and they just don't have the ability to heal in time before the next lot.
 
Megan, yes, hemmies can last a long time and can recur, sometimes often. I've had on-again off-again bleeding fairly regularly since March of last year due to chronic/recurrent hemmies, so yeah, it's been almost a full year for me. How are your iron levels? With frequent bleeding, make sure you keep an eye on things like that. Anemia/iron deficiency has been my big issue over the last year with the blood loss.

On that note, I bought some liquid iron online even though I was pretty sure my guts would hate it. The bottle says to take one tablespoon per day - hah! I got the supplement in the mail on Friday and I tried 1/2 teaspoon. Even that was enough to get my guts super riled up, ugh. (They got so riled up that I passed some blood that evening, which obviously negates the point of taking the iron in the first place!) But, I stuck with it. Sat & Sun, I did about 1/3rd teaspoon of liquid iron mixed into a glass of water and drank it super slowly (like over the course of an hour). That seemed to go okay. So I might have finally found an iron supplement that I can take on a daily basis! If I can treat my iron issues myself without having to have more infusions, that would be great. I'm going to slooooowly try to get myself up to a higher dose. I'll probably do the 1/3rd teaspoon thing for a couple weeks, then try to go up to 1/2 teaspoon, and hopefully eventually work my way up to a whole teaspoon. :p I'm the same way with psyllium, though, and I've been doing psyllium for years. The packaging says to take 2 tablespoons per day, which would kill me. I do one teaspoon a day which is just right for me. Sometimes it's just about finding the right dose!
 
Cat, how are you doing with your energy levels since your infusions?

Ugh. Rotten cold, annoying guts. Great start to a new job! [emoji23]
 
Kelleh, my energy levels were good for awhile, but then a few weeks ago when I had tons and tons of bleeding, I noticed a definite drop. I'm not as fatigued as I was before the infusions, but I'm also not as good as I was right after the infusions. I'm sort of in the middle. I'm taking liquid iron daily now and cooking with an iron fish and trying to eat as much high-iron foods as I can (currently having lunch which includes eggs and venison). I think that's helping but it's hard to be sure. I'm sort of in panic mode, trying to keep my iron levels good so that I can properly explore Japan in a couple months! I see my GI in 2 weeks so I think I'm going to ask him then to re-test my iron levels and see where I'm at. So yeah, long story short, I've been better and I've been worse, but I don't want to be worse again.

Aw, sorry to hear about the cold. Have you noticed that the cold made your guts worse? That always happens to me when I get a cold - I feel it coming on and then my guts go a bit haywire for a few days. It seems like, my immune system turns on to fight the cold, but since fighting my guts is just what my immune system does now, it does a little of both. It fights my guts and the cold until the cold has run its course. Honestly, sometimes that's the only way I can tell that I have a cold! If I'm sniffly but my guts are okay, then it must be just allergies. :p My body is ridiculous. I hope you get over the cold quickly! Feel better soon.
 
Ah, yeah. You need to be careful! Hopefully they'll stay up ready for Japan! Also hoping that the iron fluids work!

I can't really tell at the moment, as I am on my period, and sometimes find it hard to differentiate between those pains and stomach. Although, just as I started to type this message, I got a few twinges - probably because I'm nearly done with the time of the month! My immune system definitely feels like it has shut down for now though. I get the 'it's ok to sleep' feeling in my eyes (kind of a weird relaxing tired eyelid feel - I can't describe it!) but happens at the stupidest of times! I want to go to bed now, but there's a program on I want to watch. But I have my first client meeting in London on Wednesday, so I do need my energy!
 
Thanks, I have high hopes for the liquid iron. It's only the 4th day of it but I do feel a bit more energetic today than I've been. I read online that most people feel a big difference after about 1 month or 1.5 months of being on liquid iron, so I'm hoping for that - I go to Japan on March 30th so that's just over 2 months away. So I'm just going to take the liquid iron everyday until my trip and hope for the best!

Oh man, a cold plus your period - that would make my guts super upset! Can you watch the TV program online later? That's what I often do. Particularly with a cold, you need some rest! (I'm not even sure what time it is there - it's 3:08 PM here so not quite bedtime here yet!)
 
I could, but I'm being stubborn and not moving! Pretty hungry too, not good. Too close to bedtime. It's 9:26pm here, I love an early night! But I do get up pretty early, so I do make up for it.

I'll keep my fingers crossed for you and make sure I get lots of info from my mate who went to Japan when he comes to town on the 4th!
 
I'm the opposite of hungry. A co-worker brought in chocolate cake. Um, yep, I'm stuffed full of cake now! :p I did go to the gym today though so I was good before I stuffed myself with cake, ha ha. Yes, I'll be excited to hear what your friend says about his trip to Japan! But seriously, go to bed! ;)
 
So it's been less than a week and I'm practically already having a nervous breakdown over having so much to do. Yaaaaay... not.

Also, my new iron pills are... meh. I'm worried about them because there's literally warnings on it to be cautious if you've had stomach bleeding. I don't think I'm having bleeding but I am having a lot of nausea and kind of just that "hungry" feeling that you get when you have an upset stomach.

Oh well. I have an appointment to check my blood status in like a week and then another a few weeks after that to start the whole... what's wrong with my stomach-thing again. Really at this point I feel like a GP could diagnose me with GERD because it's so painfully obvious that I have all the symptoms of it. So we'll see if that happens or if I'll end up seeing a new GI.

Feeling kind of down lately. I've had a lot going on with my health besides the stomach stuff, and the accident and everything. And also going back to school my ADHD difficulties are coming back to bite me in the behind. Working, I almost forget about it, but studying is SO hard for me and the past few days I've been having a lot of negative thoughts about myself and how I can't seem to get life to work. I haven't finished a degree, I don't have a relationship, my home is always a mess, my LIFE is always a mess, I feel like I'm just way behind most other people in my age group and I'm starting to wonder if I'll ever catch up.

I'm just SAD, really. Sad and stressed. The only time I feel good is when I'm at work or at home ignoring my responsibilities.
 
Izzie said:
Feeling kind of down lately. I've had a lot going on with my health besides the stomach stuff, and the accident and everything. And also going back to school my ADHD difficulties are coming back to bite me in the behind. Working, I almost forget about it, but studying is SO hard for me and the past few days I've been having a lot of negative thoughts about myself and how I can't seem to get life to work. I haven't finished a degree, I don't have a relationship, my home is always a mess, my LIFE is always a mess, I feel like I'm just way behind most other people in my age group and I'm starting to wonder if I'll ever catch up.

I'm just SAD, really. Sad and stressed. The only time I feel good is when I'm at work or at home ignoring my responsibilities.
Click to expand...

Izzie, I know how you feel. This is definitely not how I pictured spending my last year of university :( I've been missing classes and work and had to cut all of my extracurricular things and it makes me feel "behind" and lazy. It's so hard for me to admit that I CAN'T do everything, and that I need help sometimes and I need to make sacrifices for my health.

Just try to make it through this hour, this day, and this week. You'll get to next week eventually, but until then, just focus on taking care of this week's work and YOURSELF.
 
Hi everyone, I've had my bloods done (came back normal) went to see a specialist last week to do a stool sample. He thinks crohns is unlikely. I asked him why my bowel had perforated and why I nearly died. I asked him why I was rushed into hospital last year with a bowel infection. I told him I have had joint pain, rib cage pain, knee pain, back pain, elbow and hand pain since I was 15. I'm now 41. I have skin rash, feeling unwell, I catch every cold, bug ect. I have horrendous bowel pain. I'm now eating a low resedue non meat diet as I'm sick of being ill. The docter says if there is nothing in my stool sample he will refer me back to my GP. I'm sick of being fobbed off x
 
Lesleytlc said:
Hi everyone, I've had my bloods done (came back normal) went to see a specialist last week to do a stool sample. He thinks crohns is unlikely. I asked him why my bowel had perforated and why I nearly died. I asked him why I was rushed into hospital last year with a bowel infection. I told him I have had joint pain, rib cage pain, knee pain, back pain, elbow and hand pain since I was 15. I'm now 41. I have skin rash, feeling unwell, I catch every cold, bug ect. I have horrendous bowel pain. I'm now eating a low resedue non meat diet as I'm sick of being ill. The docter says if there is nothing in my stool sample he will refer me back to my GP. I'm sick of being fobbed off x
Click to expand...

I am sorry for all you are going through. Keep pushing until you get answers from your doctor.
 
Gosh dang dabnabit!!!

I had been having just mushy and even some nearly formed stools, so I was feeling pretty good about adding "real" foods back into my diet. Dh made some turkey gumbo and it was nice and mild and warm on a cold night and just wonderful so I ate some last night with a healthy serving of rice...and now I'm right back to watery D this morning. Maybe it's coincidence? Maybe I would have had the D anyway? But geepers, this sure stinks!!
 
Izzie, it's easy to feel that way, especially when you compare yourself to other people. So, first thing first, DO NOT compare yourself to others! I know, it's easier said than done. But just because other people might be the same age or whatever, everyone has different challenges in life and some of us have a lot more than others, and it's unfair to compare. I remind myself of this all the time, particularly when I'm in the gym. I'll see other women lifting heavier weights, or working out for longer, appearing to have more energy, being more flexible than I am, etc. I have to remind myself, they don't have my health issues. They don't inhabit my body. They have no idea what I've been through and how hard I've fought just to be able to be in the gym in the first place. And thinking stuff like that makes me feel better - I've fought damn hard and I should be proud, not ashamed of myself. I'm alive and functional and upright, and some days those alone are big achievements. Anything on top of that, like being able to work or exercise, is just a bonus! So really, don't judge yourself so harshly. You're doing fine. You've had an extremely challenging time lately, and you're doing great. :)

Lesleytlc, have you been checked for other autoimmune illnesses? With the long list of symptoms, I wonder if it could be something like Lupus or Behcet's. There was a girl on the forum awhile back who had IBD-like symptoms but also other symptoms similar to what you mentioned, and she got diagnosed with Behcet's. Have a read through this thread and see if it sounds similar to what your experience has been:
http://www.crohnsforum.com/showthread.php?t=44354
 
Wildmtn, this has been going on for awhile now with the watery d, hasn't it? Have they done any stool samples lately? Maybe you picked up a bug or bacteria? Or maybe it's a bad flare. Either way, I hope it lets up soon!
 
Cat - yes - about 3 weeks now this time. And yes, the new GI did run stool samples! so far the only one to come back has been a negative C-Diff, the other's are still pending. I'm hoping this is just a fluke, but it is soooo annoying that as soon as I try to add anything other than really bland food into my diet, it gets like this again. At least I have the house stocked with things for an "extended" BRAT diet :-/
 
I want chocolate cake! I also stayed up to watch the program, and I'm on good energy levels today. However, very early night for me tonight as I have to be up at 5 tomorrow as Im going to London and need to make myself look presentable as well as fight thousands of other commuters. Day three of Laxido and no sign of a proper bowel movement. Just the same old. Giving it until tomorrow and then I'm upping my dose on Thursday. I've even been to the gym today and no sign of one! This is irritating, no less.

Sorry to hear what you're going through izzie. Sending you hugs, lots of them.
 
Kelleh, it was seriously delicious chocolate cake. My co-worker made it herself from scratch, she even made the frosting from scratch! Drool! I had to stop myself from having more than one piece, seriously.

That's good that you've got good energy levels. My energy is okay but I've been sleeping really poorly lately. I've kept myself on the steroid suppositories for a few weeks now, as I just really want to fully heal and not bleed again for awhile. So my weight is up a little bit (thanks in part to the chocolate cake) because the steroids make me hungry, and they also prevent me from sleeping well. Weirdly though, I'm not utterly exhausted. I feel not energetic but not exhausted either, just kind of in the middle. Could be worse for sure. Maybe the liquid iron is helping my energy levels? I upped my dose today slightly and my guts are still okay, I think I'm adjusting pretty quickly to being on liquid iron. This is a good thing! If I can manage my iron levels by myself, that's a huge victory.

Good luck with your meeting tomorrow! London, how exciting. I've never been but it looks like a really cool place. I bet the commute isn't super fun though! Are you driving or taking a train? I hope your guts get with the program soon and allow you to have a bowel movement! And not during your commute!

Wildmtn, at least it's good that it's not c diff, as I've heard some horror stories on the forum about c diff. I hope you can get it figured out soon though! That sounds really awful, and the BRAT diet is so boring. Hang in there!
 
Cat-a-Tonic said:
Kelleh, it was seriously delicious chocolate cake. My co-worker made it herself from scratch, she even made the frosting from scratch! Drool! I had to stop myself from having more than one piece, seriously.

That's good that you've got good energy levels. My energy is okay but I've been sleeping really poorly lately. I've kept myself on the steroid suppositories for a few weeks now, as I just really want to fully heal and not bleed again for awhile. So my weight is up a little bit (thanks in part to the chocolate cake) because the steroids make me hungry, and they also prevent me from sleeping well. Weirdly though, I'm not utterly exhausted. I feel not energetic but not exhausted either, just kind of in the middle. Could be worse for sure. Maybe the liquid iron is helping my energy levels? I upped my dose today slightly and my guts are still okay, I think I'm adjusting pretty quickly to being on liquid iron. This is a good thing! If I can manage my iron levels by myself, that's a huge victory.

Good luck with your meeting tomorrow! London, how exciting. I've never been but it looks like a really cool place. I bet the commute isn't super fun though! Are you driving or taking a train? I hope your guts get with the program soon and allow you to have a bowel movement! And not during your commute!

Wildmtn, at least it's good that it's not c diff, as I've heard some horror stories on the forum about c diff. I hope you can get it figured out soon though! That sounds really awful, and the BRAT diet is so boring. Hang in there!
Click to expand...
Cat, you mentioned about steroids making you hungry. I am currently on Entocort and wondered if that can happen on this particular drug?
 
To top it all off, my stomach issues have come back full force. Pain, constipation, belching, burning throat - the works.

As if it wasn't already hard enough to make things work with my job and school...

I suspect the iron pills are the culprit. That in combination with some less than ideal foods.

Those of you with GERD - how do you handle a sudden flare-up of symptoms? I kind of don't want to eat at all, but maybe that makes it even worse, I don't know.
 
Last edited:
Ronroush, yes, Entocort (or any steroid) can make you hungry. If you find you're often hungry, try to snack on low-calorie foods if you're not trying to gain weight. I like rice cakes for snacking on, they don't upset my guts and are relatively low-calorie.

Izzie, I agree with Adadzio - give liquid iron a try. It's a little bit pricey, but worth it (I got a big bottle for about $12 US). I've just started taking liquid iron as of last week. It still can upset my stomach if I have too much too quickly, but what I've been doing the past few days is I'll mix it into a large glass of water, and then slooooowly sip that over the course of at least an hour, if not longer. That way I get the iron and no stomach upset. So definitely give it a try!

Oh, and if you do try liquid iron - start with a much smaller dose than what they recommend. I think my bottle of liquid iron says to take one tablespoon daily. Well, I'm taking about a half a teaspoon daily, that seems like the upper limit of what my stomach can handle. A tablespoon would probably destroy my stomach! So start slowly and drink it slowly, that's my advice.

As for the GERD questions - yes, I actually do find that eating something during a GERD episode helps. It's hard to eat when you're having a reflux attack, I know. But particularly when the stomach acid is going crazy, it's best to get some food in your stomach to give the acid something to work on. For me, if I don't eat anything, then the stomach acid goes to work on the lining of my stomach and I end up with awful gastritis pain. If I do eat something then I usually can avoid an episode of gastritis. Just have something mild and small, like toast or rice. That should be enough to give your stomach something to work on and then things should calm down at least somewhat. I also take extra reflux meds when I'm having a bad attack of reflux - I always keep extra Nexium and Ranitidine on hand, and I've always got Tums with me too. So I'll eat a little food and take extra meds until things are calmed down.

How's everybody today? I have a throbbing, pounding sinus migraine. Which is actually a good thing! I had horrendous labyrinthitis (vertigo) for several months in 2014, and it started with 2 days of dizziness and feeling "off" before the vertigo hit me full-force. Well, the past 2 days I've felt dizzy and "off" so I have been panicking! The vertigo was the worst thing ever, it debilitated me more than the IBD ever has - I couldn't move my head without puking, at times, couldn't take myself to the bathroom, etc. It was so horrible. I was really afraid that it was coming back. But, I woke up with a migraine, which I can totally deal with. Sure, the migraine sucks, but it's not going to completely debilitate me for weeks and weeks. No vertigo! :D I'm so happy that it's not vertigo!
 
OK, random question - some more stool tests came back. Negative for salmonella (yay). BUT, positive for white blood cells, however, the nurse says "not enough to be an issue" -- I don't get that. How can ANY white blood cells in the stool be normal??
 
Wildmtn, I would get a second opinion about the white blood cells if it were me. I am pretty sure, like you said, any white blood cells in the stool is not normal and should be investigated further. It'd surely have to come from some sort of infection, bleeding, something along those lines? I hope you can get some satisfactory answers about that! Keep us posted.

My head is still pounding with pain, ugh. Stupid migraine. It's been a stupid day at work, too. We almost had to take the receptionist to the ER (she had an episode of dizziness and not being able to breathe very well, but then she insisted she's fine and wouldn't let us take her to the hospital). And then just dumb stuff, like somebody keeps trying (and failing) to flush things like tampons and paper towels in the toilets at work. I had to make signs to hang up in the bathroom stalls saying please don't flush tampons or paper towels. Seriously, you'd think that's common sense. So yeah, that's been my day. It's one of those days where you wish you had just stayed in bed. Bleh.
 
Oh no Cat, migraines are the worst!

I've managed to handle the GERD okay with an extra PPI pill, Gaviscon and very basic food. It's better today. Though I had to not take iron for obvious reasons. Seems I can handle the lower dose okay but the higher one is just... nope.

I've never even heard about liquid iron! But I'll look into it for sure.

Wildmthoney - Yay for not having salmonella!
 
Izzie, yeah, liquid iron seems to be either a fairly new thing or just not a well-known thing. I bought mine online because I couldn't seem to find it in a regular store - this is the one I got:
http://www.amazon.com/WELLESSE-Liqu...F8&qid=1453929376&sr=8-1&keywords=liquid+iron

It says it contains 32 servings, but since they consider a tablespoon to be a serving and I am only taking 1/2 teaspoon, it'll last me a lot longer than 32 days. It looks like there are a lot of different types of liquid iron available online so do some research and see which one sounds good to you.
 
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Well, officially began my fast for scopes on Friday. This is my first Endoscopy/Colonoscopy…wish me luck! Heard my prep (GoLytely) is the worst :(

(Oh, I started my period too...this is gonna SUCK :p )
 
Adadzio said:
Well, officially began my fast for scopes on Friday. This is my first Endoscopy/Colonoscopy…wish me luck! Heard my prep (GoLytely) is the worst :(

(Oh, I started my period too...this is gonna SUCK :p )
Click to expand...

It's definitely not fun, but you'll survive it! I did three gastroscopies and one colonoscopy last year, so I'm somewhat of a veteran at this point :ylol:
 
I have done ten colonoscopies and 8 endoscopies plus numerous scans. My brother has had something like 35 scopes he says he actually quite likes the prep now . ( sick puppy!) . I guess it is better to know than worry, Good luck Ron.
 
Good luck, Adadzio! Keep us posted! I hope things go as smoothly as possible.

I haven't ever done GoLytely, but you might be right, I've heard some bad things about it. I hope it's not too terrible. If/when you do prep again, I'd recommend that you ask for either the Gatorade & Miralax prep, or Prepopik (also known as Pico Salax or Picolax) as those seem to be the easiest and most palatable preps to do. Hopefully the GoLytely isn't too foul, though. There's a thread with colonoscopy prep tips here - looks like some good suggestions are, drink it really cold, and use a straw.
http://www.crohnsforum.com/showthread.php?t=44105
 
Cat-a-Tonic said:
Good luck, Adadzio! Keep us posted! I hope things go as smoothly as possible.

I haven't ever done GoLytely, but you might be right, I've heard some bad things about it. I hope it's not too terrible. If/when you do prep again, I'd recommend that you ask for either the Gatorade & Miralax prep, or Prepopik (also known as Pico Salax or Picolax) as those seem to be the easiest and most palatable preps to do. Hopefully the GoLytely isn't too foul, though. There's a thread with colonoscopy prep tips here - looks like some good suggestions are, drink it really cold, and use a straw.
http://www.crohnsforum.com/showthread.php?t=44105
Click to expand...

Well, first glass down, and it's pretty awful! Lol I mixed some lime jello powder and chilled it, but it still tastes like warm sea water!! Ah well, if I ever have to drink this stuff again I'm going to mix it into chicken broth—apparently that's the way to go, to disguise the saltiness.

But, this approach is a bit quicker. So I'll keep gagging and chugging it every 15 minutes… :ack:
 
Adadzio said:
Well, first glass down, and it's pretty awful! Lol I mixed some lime jello powder and chilled it, but it still tastes like warm sea water!! Ah well, if I ever have to drink this stuff again I'm going to mix it into chicken broth—apparently that's the way to go, to disguise the saltiness.

But, this approach is a bit quicker. So I'll keep gagging and chugging it every 15 minutes… :ack:
Click to expand...

I didn't take GoLytely so not sure about that but I wasn't allowed to mix mine with ANYTHING but water. Tasted like salty dirt and pennies.
 
Izzie said:
I didn't take GoLytely so not sure about that but I wasn't allowed to mix mine with ANYTHING but water. Tasted like salty dirt and pennies.
Click to expand...

To be fair my prep said not to add ingredients but…my dad said his doctor recommended this for his colonoscopy prep (same one), so I figured it's this or puking it all back up!! Sorry you had to taste that gross saltiness! Ugh.
 
Well, got a little more than half down. Finally established a system for not puking it back up—take a swig of gatorade, hold breath and plug nose COMPLETELY, and chug chug chug a glass of the poison! Only then after taking another sip of gatorade is it safe to breathe again lol.

The good news is my last BM was clear and urine-like! I was so surprised and relieved. I suppose I shouldn't be—I have hardly eaten anything these past few days. So, I'm going to still wake up around 2am and try to chug a little more for safety (I'm terrified of my GI rescheduling due to poor prep!) and then I'm off to the surgical centre around 7:30.

Will certainly update after I eat a nice big lunch tomorrow ;-)
 
Hi everyone. I'm new here. I'm 32 and I'm just going through all the testing. I've always had stomach problems and constipation/diarrhea but it's really kicked into high gear this last year. At first I just thought it was stress because my mom and my grandma died early last year. Back to back, within weeks of each other. Then I thought I just kept picking up stomach bugs but no one else in my house was getting sick. Just me. So I saw my doc and he ordered some blood tests. The c reactive protein test came back high so they put in a referral to a GI. I saw him yesterday. He said the blood work and my symptoms plus my age made him think it could possibly be Crohn's. He wanted me to have a colonoscopy soon while I was flaring. So I am scheduled to have that done on Tuesday. Not looking forward to that. Anyway so my symptoms for the last month have been crazy diarrhea, stomach pain, heart burn, nausea, committing and I get low grade fevers all the time. Really hoping for some kind of answer soon.
 

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