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Thank you Cat, I've posted on that thread for some advice on the hair loss. I'm having such a bad flare at the moment I'm feeling so low. I think the added stress of this promotion at work and losing my hair and the ferocious mouth ulcers I have at the moment, I'm really not coping very well. :,( my partner is being really kind and caring but he just gets upset when I'm angry or sad as he thinks its his fault. But trying to reassure him and comfort him is exhausting on top of everything else. I know you all understand and it is great to know there are people who do.
 
Weeze...I've had the same problem with my hair, like you I have thick hair. every time I washed it it clogged the plug hole and I was scared to brush it. I had an alopecia profile done but it was negative, also found out I was anemic which can cause the hair to fall out plus I'm on pentasa and omeprazole, both have hair loss listed as rare side effects. It does seem to have slowed down greatly, though it is very distressing.

Gabi...I was started on the same meds as you and found it took a while before I noticed I felt better and it wasn't like I woke up one day and felt better, it was more gradual were I realised that I wasn't going to the loo so much or that I could eat a bit more than I had been managing. It just takes a bit of time. Heat was the one thing that got me through that stage, putting something warm on my tum or a warm bath.

Moogle...I live in a wee town where bushmills whiskey is made, depending on which way the wind is blowing it's possible to smell the whiskey in the air. I didn't know that when I first moved here and thought someone had been drinking on my doorstep!! Lol. Now I know better :). I'm about 2 miles away from the giants causeway and about 10 from Carrick-a-reed rope bridge, if you Google you can see them. I moved here when I got married 24 years ago after holidaying near here for a number of years with my parents. I love this time of the year when most visitors have gone home and its much quieter, the sun is out and is beautiful.
 
Hey lizbeth! Northern Ireland looks so gorgeous. I want to visit one day! I've heard of Carrick-a-rede rope bridge. We have a very big St. Patrick's day celebration in my town every year. We have a lot of Irish festivals and concerts. An Irish folk singer named Cathie Ryan performed a few years ago. She has a song about Carrick-a-Rede and talked about it.

Here is her song. http://www.youtube.com/watch?v=N70lL35Ewsw

Gabi, Weeze2, My heart goes out to you guys in pain today. I hope the meds help. :ghug:

I need advice myself. Do you guys have any gurgling or liquid feeling in your tummys? I am noticing it often. At first I thought it was due to my morning cup o coffee. But I am feeling it all day long. I ate a piece of toast with peanut butter and a small cup of lactaid milk before bed and it was bad. I woke up and had fluid gurgling in my tummy before I even had my coffee... Any ideas?? Thanks.

edit: I looked it up on the wiki. "Rumbling feeling/sounds (Borborygmus / Borborygmi)"

I'm having that major time and it's freaking me out!!!
 
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I have had that a lot too, usually means I'm going to have a bad time, or that something hasn't agreed with me. It can go on for hours and make me feel quite sick....no idea what it is though - sorry!
 
Gabi, I hope you find some relief soon, it must be horrible atm

Cat - I like your ideas for motivation, but I still have none to exercise lol. That said I am walking to uni and back, which is 30minutes each way, uphill on the way there and down on the way back.

Weeze - I am so glad you mentioned the hair loss thing, I didn't know that was a symptom, but Im 'shedding' (as my partner calls it) I lose loads. Will bare that in mind for when I see my consultant

RosaleeMae - its tough to tell the difference in abdo pain sometimes cos it ends up all hurting, but ive never had a cyst, so I don't know how painful that is. (I dread to think)

Lizbeth - the big question is...do you like whisky? (and hows the smell make you feel? I like whiskys smell, but don't drink it lol)

Moogle - I get the gurgly thing a lot, I agree with Weeze, it usually means that something hasn't agreed with me and im in for it.

Ive just been put on the dreaded prednisolone, been putting it off but gp thinks I need to go on it, on a low dose though I think, on 30mg.
 
I get that too (and have just gurgled to confirm lol), I don't know for sure but I think it's just bowel sounds but because ours don't work right then sounds don't sound right? Maybe that's a daft theory but it works for me :). It happens once I've had breakfast and will go on all day, sometimes worse than others.

I tried to listen to the song but it wouldn't play on my kindle, but I will check it out.

Cat you made me laugh about having candy after the gym, it reminded me of a time when a friend and decided to get rid of our baby fat and started going to the gym. We were sooooo good badminton was followed by swimming or maybe aerobics and a walk..........and then we quite often finished in a Chinese :) lol. Oh the good old days. Seriously though, about 6 months before I got sick I decided to get my health back on track, I wanted to control my diabetes and lose weight. I started to exercise and follow a low GI diet and it worked, I lost 16 pounds, but then got sick. It's been hard accepting crohns because the management of it was going to screw up my diabetes control, it's been hard having the 2 conditions.
 
Hello,
Back again looking for some reassurence. My colonoscopy has come through for next Wednesday and I'm nervous I am in need of answers but scared also. I am sick as a dog from almost everything I am eating now it's not liveable and awful pain, gurgling and a bulge in the cecum/terminal ileum area. I have lost more weight despite eating and my joints are absolute agony today I'm having to slide down the stairs on my bottom.
Does anyone have any colonoscopy tips? I have no idea how I will get the sheer volume of that prep down me :-(
 
Ali t said:
Hello,
Back again looking for some reassurence. My colonoscopy has come through for next Wednesday and I'm nervous I am in need of answers but scared also. I am sick as a dog from almost everything I am eating now it's not liveable and awful pain, gurgling and a bulge in the cecum/terminal ileum area. I have lost more weight despite eating and my joints are absolute agony today I'm having to slide down the stairs on my bottom.
Does anyone have any colonoscopy tips? I have no idea how I will get the sheer volume of that prep down me :-(
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First take 4 duloclax stool softeners,We now have a bottle of miralax(Medium size, don't know measurement but pharmacy could tell you), also two 2 quart sized bottles of lemonade flavor Gatorade is what they give here now and it was so much better than the "GO Lightly" I had to use last time. It worked great too. Ask your Dr. about that.:)
 
akiva said:
Gabi, I hope you find some relief soon, it must be horrible atm

Cat - I like your ideas for motivation, but I still have none to exercise lol. That said I am walking to uni and back, which is 30minutes each way, uphill on the way there and down on the way back.

Weeze - I am so glad you mentioned the hair loss thing, I didn't know that was a symptom, but Im 'shedding' (as my partner calls it) I lose loads. Will bare that in mind for when I see my consultant

RosaleeMae - its tough to tell the difference in abdo pain sometimes cos it ends up all hurting, but ive never had a cyst, so I don't know how painful that is. (I dread to think)

Lizbeth - the big question is...do you like whisky? (and hows the smell make you feel? I like whiskys smell, but don't drink it lol)

Thankyou akiva for responding!:ghug:

Weeze, I was losing hair too and started taking Biotin pills and a multivitamin called ALIVE and my hair is actually getting thicker again. I use a detangler comb too and be really careful when I wash it. Don't be hard on your hair or it will fall out more. The more stress you put on it ,the more it breaks. Always use a shampoo and cond. with biotin. It does seem to help. Moogle - I get the gurgly thing a lot, I agree with Weeze, it usually means that something hasn't agreed with me and im in for it.

Ive just been put on the dreaded prednisolone, been putting it off but gp thinks I need to go on it, on a low dose though I think, on 30mg.
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Moogle, Every evening I am siiting there watching TV and my stomach sounds like world war 3 going on and passsing gas sounds like bombs dropping! LOL:ylol2:Cat, I too wish I had your motivation. I am so sick in the tummy alot, i'm lucky to get my laundry done let alone exercise. I hope to feel better and be able to do more in the future.
 
RosaleeMae, we could team up and start an army with our tummy bombs. Just give me some beans and tempeh and I could blow up a third of the planet. :tank:
 
hey guys!

Cat - lactulose, it turns out is not for IBS. So I don't understand why the insurance company is insisting I try it first!

Lizbeth - You have guessed my strategy! I did try one dose of it and my right side was in agony for the whole weekend. My appetite went away and I was so bloated and uncomfortable. so I am not going to take it, then call after two weeks and tell them about the pain and bloating. They will appeal via my insurance company again and then hopefully they will approve the Linzess.

Gabi! I'm so glad to hear from you again. I'm sorry that you are still going through so much of the same stuff you were before with no answers. Hang in there girl!
 
Ali t, what prep are you going to be doing for your colonoscopy? If you are able to request a prep, you might want to ask for Picolax. I did that prep myself (it's called Prepopik in the US but it's the same exact thing), you only have to drink 2 cups of prep itself and then you just drink a bunch of clear liquids of your choice to stay hydrated - water, tea/coffee without milk, clear broth, sports drinks as long as they're not red/blue/purple, etc. It's not a hard prep to get down, just 2 cups and it didn't taste bad. It's not as harsh as other preps too - the downside is that there's a possibility you won't be fully cleaned out, but if you tend towards diarrhea anyway then you'll probably be just fine.

Akiva, good luck with the pred - for what it's worth, I *loved* being on pred! It made me feel so great ("euphoria" is a listed potential side effect and I definitely got that one!). I felt like a million bucks, like super woman, so much energy and my symptoms disappeared. That's just my experience of course, yours may vary, but hopefully it kicks in quickly and gets you a lot of relief.

Lizbeth, yes, I'm guilty of going out for meals after the gym too! :p Hubby and I used to sometimes go to this cute little cafe after our workouts together, and he even was ordering salads to try to be healthy (the meal I typically ordered was not so healthy, ha ha!). But last time we were there, we both got a little bit sick afterwards. Not like full-blown food poisoning, but something was a little "off" and we both took turns running to the bathroom with massive gas and diarrhea for the rest of the day, and I didn't feel great for about 4 or 5 days afterwards. So now we usually just go home after a workout because we won't go to that cafe again!

Gabi, both Entocort and Pentasa are fairly mild drugs, and honestly your case sounds to me like you need something stronger. So hopefully they'll kick in soon, but if your inflammation is too bad then those meds might not have much impact on things. I'm on Pentasa which seems to be working for me, but I'm only in a very mild flare. If things don't improve soon, think about calling your doctor and asking for something stronger. Speaking as someone who was in remission for 2 years, no, I don't think you ever will feel 100% better - but in my experience it IS possible to feel 99% better. In remission, I still had to watch what I ate and avoid too much stress and get enough sleep and all that, but as long as I did, I felt pretty normal. I know I'll never be quite the same as I was before I became sick, and I think a lot of that is mental (never knowing when the next bad flare will hit, needing to know where the bathrooms are when I go somewhere new, etc). But I did feel 99% well most days during my remission, and I think you can achieve that too. Keep fighting your doctors, if these meds don't work then ask for new ones, and go back to the hospital if you need to.

Moogle, did you start the new job yet? If so, how's it going?

How's everyone else? I'm okay today, a bit tired because I kept waking up last night, just couldn't stay asleep. Throat is a little sore because I had a bad GERD episode yesterday in which a lot of acid came up my throat and apparently burned it a little bit. The throat is better today than it was yesterday, so hopefully it'll be all healed up soon. Other than that, I'm feeling mostly okay. I think the Pentasa is working - I'm not getting any worse, like I did when I was on Asacol HD, so Pentasa must be doing something. (I couldn't break down the Asacol HD tablets and they were passing right through me undigested, so I felt noticeably worse within a week or so - I haven't passed any Pentasa and I'm feeling okay, therefore it must be working!)
 
Cindy, I think I missed your post when I was writing mine. How awful that it made you feel that way, and I agree, don't take any more and just wait out the 2 weeks to satisfy the insurance company. And what an odd thing, if it's not even for IBS then why on earth are they making you try it? What IS it for if not IBS? How strange. My GI once asked me to try an IBS med, never again! It was called Levsin I think although I was given the generic (hyoscyamine). It gave me terrible, awful, horrible nausea after I ate anything. I stopped taking it immediately, but the nausea lasted for a few weeks after that - I guess it all had to get out of my system or something. I lost weight, I couldn't exercise, it was just a hideous time. Zofran wouldn't touch the nausea either, so I got zero relief. I remember during that time I ate a little bit of pasta and then was just standing in my kitchen, trying not to barf. This was during the time that my brother was living with us, so he came home right then and he had a bag of food with him. The smell of food was enough, and I puked in my kitchen sink. As much as I dislike my brother, I have to give him some credit - he actually held my hair back while I barfed. Sorry that was gross, but that's my one standout memory of the awful nausea from that stupid IBS med. So I can totally relate to having to take a med you don't want and know won't work, and it just makes you worse. It sucks when you have to go through something like that! Hopefully the pain and bloat go away soon if they haven't already.
 
Hello Alli_t, I just wanted to say that a colonoscopy is no where near as bad as you think it will be! They sedate you really well, and it felt like it takes about 2 minutes (but I was in there for 40 minutes!) Make sure on the day you have to start taking the prep, have a day at home as leaving the house after taking the prep might get tricky! :) And just stay relaxed as the drink/tablets take effect as getting worked up will of help. Maybe have a good book or knitting or something in the loo with you too, as you will be in there for a while! Try and dilute the prep with some clear squash or lucazade (something clear that you like) which will help the taste and help you drink it. It does seem a lot but you will manage it, and I just kept thinking that if I didn't do it properly I might have to do it again!!
I promise it is no where near as bad as you think it will be and the answers you will hopefully get will make it worth it.
Take care and please ask any more questions if you have any.
:)
 
Hi,
The prep is called Klean prep it's 4 litres over the course of the day. I'm just concerned as I get deep gnawing pain and really bad pain and sickness if I don't eat every 40 mins or so then I get sick when I do eat but the thought of drinking all that in an empty stomach worries me. However I need answers I'm in agony today, sickness and cramps, this lower right sided bulge appears to be bigger and making noises it almost feels like stuff can't move through properly. B12 and iron low again and my joints are like old ladies I'm having to come down the stairs on my bottom it's really depressing me. Thank you so much for your advice it's really kind of you. Would I be able to mix ribena in with it?
 
Yes, Ribena would definitely work. And if you are worried about not eating, maybe give the department a ring? I got some information leaflets in the post with my prep sachets and it said if I had any concerns to give them a ring. Also, if I remember the instructions correctly
I could eat clear jelly and a small amount of vanilla ice cream for a certain amount of time. I read and then re-read the instructions so that I knew exactly what I could and couldn't do. And once you get to the last few hours before you have to go to the hospital you really won't want to eat as you won't feel much like food!
It sounds like you really need this test and I'm sure it will be worth it when you get your results. Best wishes and take care, and ask any more questions if you need to!
 
Hey Cat, I had my job orientation today at the temp agency. The job starts Thursday and lasts for about 1 week. It's an 8-5 job in a warehouse.

It's easy work. I'm just putting stickers on gift bags for k-mart. I can stand on a place mat and wear comfortable sneakers. I can also take breaks and have snacks if I want. They have a fridge so I can bring lunch. I may be able to bring my ipod also. :) I still need permanent work. But I'm grateful for this job.

I took questran this morning because the gurgling in my stomach felt blah. I'm still unsure about this med for me. My bowels don't feel loose now, but I feel bloated and have a raging headache. :ybatty:

Cat, what are you taking for your gerd? Have you tried Prelief? It's from the people who did beano. I've heard good reviews about it. I think it's a type of calcium pill that you take before trigger foods, that neutralizes acid.

McCindy, good for you to not take more of that stuff. Hope you get the meds you want. If you can, give natural calm a shot. I think you can even get sample packets. I got them at my local health food store.
 
Moogle, my hubby had a temp job like that once (his was something to do with sorting stickers from a huge bin). He said it was easy but tedious. So it shouldn't be too stressful for you but it might make for a long day. Hopefully they'll let you listen to your ipod. Good luck Thursday!

I think I forgot to address this in my earlier post from today - a few people in here have been talking about gurgling. I get that too, and sometimes it seems to be because I ate something I shouldn't, but other times it seems to happen at random. I've read on the forum that bowel noises/gurgling can sometimes be due to narrowing - if you've got a stricture or something like that, it can make all sorts of weird noises as the food has to move through it a little differently than it would through normal bowel. As far as I know, I do not have a stricture, so I have no idea in my case why I gurgle. Maybe it's just an IBD thing! In any case, I wouldn't worry too much about it,

As for my GERD, I'm taking 40 mg Nexium first thing in the morning, 300 mg Zantac and about 10 Tums just before doing a workout (and I still take the 300 mg Zantac mid-day if I'm not working out that day, plus Tums as needed), and then another 300 mg Zantac just before bed. And of course I try to avoid my GERD trigger foods (spicy foods, acidic foods like tomato sauce & orange juice, and anything deep-fried) and I try to drink a lot of water too. All of that usually keeps my symptoms in check enough so that I can function, but it still gets bad at times, particularly when I work out. I basically reflux all the time regardless, but I can't take more reflux meds than what I take now - previously my GI had tried doubling my Nexium dose, but that diluted the acid in my system so much that I wasn't able to break down my other meds. Not good! So it's a balancing act. I'll look into that Prelief stuff you mentioned. I know Tums is calcium carbonate so I'm guessing it's similar to Tums?

Ali t, 4 liters sounds like a lot of liquid, but you probably won't have to drink it all. I've always been told that I can stop drinking prep when I'm going "clear" (no solids, yellowish liquid and tiny flecks are okay but absolutely no solids). The first 2 times I did prep, I started going clear about halfway through. So just keep an eye on what's coming out of you. I'm similar in that I feel really sick if I don't eat regularly, but I did okay with prep when I had a colonoscopy about a month ago. I did get nauseous for about 20 minutes as a side effect of the prep, but other than that I felt okay and I didn't vomit. I've done prep 3 times now and I've only vomited once which was during the first time, and I think that was only because I got really dehydrated which always makes me feel sick. So you should be okay, really! Prep isn't fun, but you'll make it through okay. And like Weeze said, the scope should be a piece of cake compared to the prep, so try not to worry too much. Have a read through that link that Akiva posted for you about colonoscopy prep tips - it's got a lot of good info in there.

Has anyone heard from Bluebird lately? I sent her a message awhile back on her cake-making page on facebook and she said she'd friend me, but then she didn't and I haven't heard from her since and she hasn't been on the forum either. I hope she's okay and just busy or whatever. Bluebird, if you see this, we miss you! Come back and give us an update!

I miss Bozzy too but we've chatted a bit in PMs and I know she wants to be on here more but she's so busy with school right now.

And Carrie? Has anyone heard from Carrie lately? I need to keep better tabs on the people I worry about! Carrie, worried about you - if you read this, are you still off work? Did the biopsies show anything, are you going to have another DBE from the other end? Have you gotten anywhere as far as answers or relief?
 
Cat - the insurance company is insisting on the lactulose because it is a medication used to treat constipation. I told them that I have IBS or some form of IBD and that lactulose is not for those. Apparently their routine is to have an "independent" GI review the file and make a decision, and this "GI" doc said the Linzess should be denied unless I try the Lactulose first. so apparently he knows NOTHING about GI issues and meds! so I just have to not take it for two weeks, report to my doctor, and wait for the appeal. Then I can try the Linzess. I might give the Natural Calm that Moogle told me about in the meantime and see how that goes.
Gurgling - I get that too, especially if I eat something that gives me pain or bloating. I was gurgling all weekend after taking that one dose of lactulose on Friday.
Moogle, for a one-week job, yours sounds kind of nice I must say! Enjoy it and I hope you have good luck finding something more permanent.

I can relate to what Cat was saying about not going back to a place to eat after getting sick, my husband and I ate at a Subway once and both got sick. We got different sandwiches, the only thing they had in common was mayo and he had extra mayo on his, and got MUCH sicker than I did. That was years and years ago and when we drive past that place we still remember that's a place NOT to go for sure!
 
McCindy, one tip with the Natural Calm, start off slowly with it. Maybe 1/2 teaspoon and work your way up slowly until you notice results. It can help TOO much if you know what I mean, haha. Good luck!

The weird thing about my gurgling is I had it first thing after a few sips of water this morning. That's what is freaking me out. Oh well. Maybe my stomach wants to talk to me and say hello. :tongue:
 
Cat-a-Tonic said:
Moogle, my hubby had a temp job like that once (his was something to do with sorting stickers from a huge bin). He said it was easy but tedious. So it shouldn't be too stressful for you but it might make for a long day. Hopefully they'll let you listen to your ipod. Good luck Thursday!

I think I forgot to address this in my earlier post from today - a few people in here have been talking about gurgling. I get that too, and sometimes it seems to be because I ate something I shouldn't, but other times it seems to happen at random. I've read on the forum that bowel noises/gurgling can sometimes be due to narrowing - if you've got a stricture or something like that, it can make all sorts of weird noises as the food has to move through it a little differently than it would through normal bowel. As far as I know, I do not have a stricture, so I have no idea in my case why I gurgle. Maybe it's just an IBD thing! In any case, I wouldn't worry too much about it,

As for my GERD, I'm taking 40 mg Nexium first thing in the morning, 300 mg Zantac and about 10 Tums just before doing a workout (and I still take the 300 mg Zantac mid-day if I'm not working out that day, plus Tums as needed), and then another 300 mg Zantac just before bed. And of course I try to avoid my GERD trigger foods (spicy foods, acidic foods like tomato sauce & orange juice, and anything deep-fried) and I try to drink a lot of water too. All of that usually keeps my symptoms in check enough so that I can function, but it still gets bad at times, particularly when I work out. I basically reflux all the time regardless, but I can't take more reflux meds than what I take now - previously my GI had tried doubling my Nexium dose, but that diluted the acid in my system so much that I wasn't able to break down my other meds. Not good! So it's a balancing act. I'll look into that Prelief stuff you mentioned. I know Tums is calcium carbonate so I'm guessing it's similar to Tums?

Ali t, 4 liters sounds like a lot of liquid, but you probably won't have to drink it all. I've always been told that I can stop drinking prep when I'm going "clear" (no solids, yellowish liquid and tiny flecks are okay but absolutely no solids). The first 2 times I did prep, I started going clear about halfway through. So just keep an eye on what's coming out of you. I'm similar in that I feel really sick if I don't eat regularly, but I did okay with prep when I had a colonoscopy about a month ago. I did get nauseous for about 20 minutes as a side effect of the prep, but other than that I felt okay and I didn't vomit. I've done prep 3 times now and I've only vomited once which was during the first time, and I think that was only because I got really dehydrated which always makes me feel sick. So you should be okay, really! Prep isn't fun, but you'll make it through okay. And like Weeze said, the scope should be a piece of cake compared to the prep, so try not to worry too much. Have a read through that link that Akiva posted for you about colonoscopy prep tips - it's got a lot of good info in there.

Has anyone heard from Bluebird lately? I sent her a message awhile back on her cake-making page on facebook and she said she'd friend me, but then she didn't and I haven't heard from her since and she hasn't been on the forum either. I hope she's okay and just busy or whatever. Bluebird, if you see this, we miss you! Come back and give us an update!

I miss Bozzy too but we've chatted a bit in PMs and I know she wants to be on here more but she's so busy with school right now.

And Carrie? Has anyone heard from Carrie lately? I need to keep better tabs on the people I worry about! Carrie, worried about you - if you read this, are you still off work? Did the biopsies show anything, are you going to have another DBE from the other end? Have you gotten anywhere as far as answers or relief?
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Thanks for your help on the gurgling and everything Cat! You seem to know alot.
 
I REALLY REALLY REALLY need help and some answers! I live in small town Wyoming. For most of my young adult life I have had periods of discomfort (stab you in the guts, double over, get diarrhea... come and go pain... here and there maybe 1 time a month, maybe every other, or maybe 10 times a month). I thought all of these symptoms I had as a young adult were normal (14-present 27 years). Poop wasn't something I went around asking people about. Then June of 2012 I had to have my appendix removed and 1 year TO THE DAY of my appendix surgery I was back in the ER this time with something "similar" but different. I had bad tummy pain for about a week (thinking it was the flu maybe) then my diarrhea turned to straight blood. I was going over and over and over. I went the ER in Wyoming where they pushed around on my tummy and told me
"I realize your appendix area hurts, it cant be your appendix though, its probably just gas... go home take Pepcid." Later that night it got WORSE, so I end up in the closest "city" in Montana ER (My husband got fed up with Wyoming docs). At the ER in Montana they found blood in my stool (no bacteria), and a CT scan found inflamed colon right where my appendix once "lived". Also noted in my CT scan was fluid on my heart and liver, along with inflamed lymph nodes. The ER doc told me he thought this was possibly crohns or ulcerative colitis (a cousin of mine has crohns... but I never talked to her about it... didn't have any idea what it was). He also said it could be just a bacterial infection. They gave me antibiotics and sent me home to follow up with GI. I followed up with GI mid August 1.5 months after my "flare" up. By then things were back to normal, and I wasn't having issues. The colonoscopy came up normal, but no biopsy was conducted. The doc then sent me home with the IBS diagnosis and some pills. Well... its now 1.5 months post colonoscopy and I am having mini "flare" ups almost daily!! It interrupts my every move!!! The IBS pills, don't work!!!! My question is... Could I have been misdiagnosed?! What should I do? Should I drive to a real city like Denver or SLC to see someone who might have a better grip, or should I go back to the other GI? Is it possible it could be gluten intolerance or something like that?! HELP!!!! It interrupts my work, my day to day life, it interrupts EVERYTHING!!!! :/ Feeling lost!!!
 
Cat-a-Tonic said:
My GI once asked me to try an IBS med, never again! It was called Levsin I think although I was given the generic (hyoscyamine). It gave me terrible, awful, horrible nausea after I ate anything.
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oh my GI gave that to me too, I thought I was just being nuts thinking it was causing nausea (Im almost always nauseas anyway) they gave it to me on a day when I called trying to get in pratcially in tears cuz Id had diherra for 3days and it was burning and hurting me so bad....yeah the stupid med did nothing!:ybatty:
 
So I'm five weeks post op for a surgery to remove major adhesions due to my significant Endometriosis. I have already had a small bowel obstruction a year and a half ago and this was prevention. I had another SBO last week so I got a referal to a new doctor, one who works with my Gynecologist/general surgeons. I'm hoping that I can get a diagnosis for all the bowel issues I continue to have, painful bowel movements, bloody erosions in the ascending colon, esophagus, stomach and upper small bowel.
 
Gabi said:
Thank you so much for your support guys you are all amazing. Update on things-I'm on entocort 9mg and pentasa and have been now for 16 days - nothing has changed so far. I'm trying to be hopeful but no different yet. I've also been put in regular codine to slow down the bowel-which I personally think is going to leave me in more pain!? So I try not to take it however when I do it tends to help a bit. The pain is still so bad and I'm back to no sleep and very difficulty in eatting. All this fears me so much because I haven't got a follow up appointment confirmed with my GI yet. I've been out if hospital for a while now and still no letter.
A question I wanted to ask is how do you know when the meds are going to work! Like do you start to feel better? Does the pain go away? Nausea? D? I'm prepared never to feel 100% well but should I not feel any better by now!?

Sad and confused
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Gabi I've just been put on regular dihydrocodeine (I used to take it for pain as needed but now I take it regularly) to stop diarrhoea and it's working really well, at least for during the day, not so much at night. Obviously it's only masking the problem but I definitely don't think it causes more pain, if anything it helps. I just hate codeines side effects and the spaced out feeling it gives you lol.

I haven't been on either of those drugs but I would have thought the steroids would have helped by now. Would they not consider prednisolone? It would make more sense considering (unless there's been a change that I've missed) they don't know exactly where the inflammation is.

My new GP is so amazing although not sure if he is permanent at the practice, I will be gutted if he is not. Saw him last night and he's writing to my gastro to tell him he needs to see me now. This doc has acknowledged my problems instead of trying to play them down because they don't know what to do. I am so grateful to him.
 
Hey guys. I'm doing OK this morning. I'm kinda tired, but can't complain much. The weather is nice this morning. I will probably take it easy today. Even though I have this temp job, I got to keep looking for work. My goal today is to put in a few applications for a p/t job.

Cat, you going OK today?

Omaklackey, sorry to hear about your pain you're going through. Hopefully you can get the diagnosis and find relief for your pain. Hang in there!

lsgs, that's cool you have a good doc. That's a common complaint about docs not listening and being stubborn. I prefer to see my gi doc's PA's because they actually listen to me and give me tests I ask for, haha.

aslpw, I can relate because I went through the same run around at first. Even for me, it's been four years since mine began, I'm still searching for answers.

IMO, they should have done biopsies when they performed the colonoscopy. If you have blood in your stool, your doctors should rule out IBD, or other conditions like Celiac, and colon cancer before saying it's IBS.

If I were you, I'd find another gi doctor for another opinion.

Do you have a primary doc you trust for recommendations on nearby hospitals or GI clinics?

I looked online and saw University of Colorado in Denver has a GI clinic. Check out this google map for more locations. Hope that helps!
http://goo.gl/maps/WJ0BF
 
aslpw, It's possible that because your flare has subsided the colonoscopy didn't reveal any inflammation. It's concerning to hear that no biopsies were taken since that is how crohn's can be diagnosed without inflammatory response. Check into some of the diets people on this forum use (I use the low-FOD diet myself, or there is also the SCD diet or the Paleo diet). If you can figure out what foods are causing your "mini-flares" that might help you get them under control. Also if your current doc isn't helping, keep trying to find one who will listen and help you with a correct diagnosis.
 
Hello, just wanted to leave a quick update...I rang the 'IBD helpline' number that I have been given by my Gastro Dr and they were as helpful as a chocolate teapot!! I'm waiting for Fecal Calprotectin test results and they're not back yet, my white blood cell count is low bite everything else normal. I explained that all my symptoms have got much much worse since coming off the entocort, that my bm are dreadful and painful and that I have so many ulcers I'm finding it hard to eat...and she just said call back next week :(
She said she didn't want to give me any more medication until my tests came back and the Dr had seen me. Meanwhile, I'm in a lot of pain, feel dreadful and have nothing (more than paracetamol ) to help! :(
Really feeling rubbish and down and the nurse just didn't seems to care or really listen to what I was saying. I'm just getting so frustrated! :(

Hope everyone is ok and that you days are better than mine!
 
aslpw-- Yes, I definitely think you could have been misdiagnosed. I would suggest seeing another GI.

I've been feeling really crappy these past couple of days-- lots of stomach cramps and bathroom trips and now a migraine. :( And I'm STILL waiting to hear back from the endocrinologist about my test results-- four weeks later and five contacts. I think I will be looking for a new endocrinologist. I need these results back though.
 
Aslpw, I agree with Chickadee, it sounds like you need to find a new GI who takes you more seriously. What pills did they give you? And when you say it affects your every move, what type of symptoms are you having? Have you had weight loss, blood in stool, getting up at night to run to the bathroom, fevers, anything like that? All of those things are NOT part of IBS, so if you've had any of those then definitely keep fighting for answers.

Weeze, there's a "talk to a nurse" helpline that I've called a few times too, and I agree, those things are completely worthless! They never seem to give any actual info and just tell you to see your doctor. Or they tell you really basic info that anybody could easily find with google anyway. I don't think they're even real nurses on that hotline, I think it's just regular people with google pulled up and instructions to tell everyone to see their doctor. :p For the pain, while you're waiting for the test results, have you tried a heating pad or hot water bottle? I don't think I could live without my heating pad!

Cindy, so if I'm understanding right, lactulose is just for constipation but not if it's constipation associated with any type of digestive disorder? In other words, it's just a laxative for healthy people? Ugh, that's so frustrating that they made you try it even once! How reckless and stupid of them. I guess in a way it's good that you had such a reaction, now you know not to take it ever again. I had my doctors put in my file that I'm allergic to hyoscyamine (not technically allergic, but after that awful nausea, I don't want anyone trying to give it to me again!). Maybe you could have your doc do something similar?

Chickadee, wow, yes it definitely sounds like time for a new doc. My GI is busy and he sometimes takes a week to get back to me, but he's never ignored me for weeks on end and he'll sometimes call me from home if I let him know I need to talk with him urgently. 4 weeks and 5 contacts is too many. Good luck finding a new endocrinologist, and I hope you feel better soon. Take it easy and rest up as much as you can.
 
I just got the pathology report in the mail from my GI, and I'm glad I requested it. According to the literature, mastocytic enterocolits is diagnosed if there are more than twenty mast cells per high powered field. My biopsies had "approximately 20" mast cells per high powered field. So...I am actually on the borderline of that diagnosis. When the nurse called me with the results, she just said it was negative, but I question that. It's so borderline. The first line of treatment would be Gastrocrom, and my doctor had mentioned having me try it even if the biopsies were negative for mastocytic enterocolitis. If the nurse doesn't call me back within a few days about the Gastrocrom, I'll call again.
 
Weeze2 said:
Hello, just wanted to leave a quick update...I rang the 'IBD helpline' number that I have been given by my Gastro Dr and they were as helpful as a chocolate teapot!! I'm waiting for Fecal Calprotectin test results and they're not back yet, my white blood cell count is low bite everything else normal. I explained that all my symptoms have got much much worse since coming off the entocort, that my bm are dreadful and painful and that I have so many ulcers I'm finding it hard to eat...and she just said call back next week :(
She said she didn't want to give me any more medication until my tests came back and the Dr had seen me. Meanwhile, I'm in a lot of pain, feel dreadful and have nothing (more than paracetamol ) to help! :(
Really feeling rubbish and down and the nurse just didn't seems to care or really listen to what I was saying. I'm just getting so frustrated! :(

Hope everyone is ok and that you days are better than mine!
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Sorry you are feeling so poorly hon! Sayin a lil prayer just for you!:ghug:
 
I started the prednisolone yesterday, took them about 4pm as I don't generally eat before that (as when im on the 9th floor at uni and the nearest ladies loo is on the 6th floor with no lift, it seems a better idea to delay eating) but I was awake ALL night. Now I don't sleep well anyway, so I don't know if its just one of my normal lets think about random crap all night rather then sleep sessions, or its the pills. Surely its too soon for them to be in my system? That said Ive been in less pain today, and the only thing Ive changed is the prednisolone...strange.

Anyone got any ideas on this?
 
akiva - maybe try taking them in the morning? I know when I've had to take steroids, they usually seem to give me problems sleeping if i take them too late in the day. I have a friend who had to get IV steroids for a medical condition and he wouldn't sleep for a day and a half after each treatment! (fortunately they were bi-weekly and not more frequent).

Cat - yes, you are understanding right, it is just for healthy people with constipation. My belly still isn't feeling right and I took the one dose last Friday. It's been affecting me for five days now. I have pain again, cramps off and on and rumbling. I definitely plan to ask my doc to make sure I NEVER get prescribed this medication again. I also still have almost no appetite and feel like I get full fast. I don't know if that's a result of the medication or not but it has been over the last few days only. makes it even more difficult to eat and keep weight on. :(
chickadee, seeing as they aren't being honest with you about your results and you aren't getting any understanding or relief, I hope you will consider a new doc. Something has to give and it shouldn't be you!
 
Today was pretty hectic. I had to take my mom to the doctor today. I also saw my doctor today. I asked her for tests to check for inflammation. She agreed to give me an ANA test. I'll have the results on Thursday. If it shows anything, I suppose she'll refer me to a rhumatologist.

I asked my primary care doc about trying prednisone and she was like "No, I don't just prescribe steroids." So I'd have to have abnormal test results or be referred to a specialist.
 
Hiya,
Been a few weeks but just wanted to update.
So I went to Washington Dc and they ordered me a second endoscopy just to check.
They had found celiac disease antibodies in my blood but needed to have biopsies too back it up, so they took 6 biopsies.
Today they told me the biopsies didn't show celiac.
So anyways my GP had wanted me to start a small dose of crohns meds but this new GI said because I don't have bleeding that it can't be Crohns.
When my GI rang me to give me my biopsy/endoscopy results (which showed no inflammation) he then said because my original endoscopy (4 of 5 months ago) showed inflammation and that my old GI Dr had reported possible gastroenteritis that they will go off that result? So now I have to go on acid blockers for 6 weeks then see what happens.
So if we are going off test results months ago then what was the bloody point getting another Endoscopy?
So even though I get told it can't be Crohns because no bleeding here is the same GI Dr telling me we are going with gastroenteritis which can cause bleeding and a bunch of other symptoms I don't have... Because that clearly makes sense *she says sarcastically*
I'm due to travel to England to visit family on Christmas Eve and I was hoping I would at least be on meds but I wouldn't hold my breath I even get a diagnosis.
I'm ringing my GYNO tomorrow to have a Pap smear done as I've never had one and I'm nearly 26 (don't judge lol) since my pain is mostly lower and because that part and no pun intended has not been poked yet ... By a Dr of course.
So yeah if you're still reading my post well done for keeping up and not falling asleep lol

Hope everyone is doing as well as they can and I'm sorry I haven't been around to offer support.

Hugs and kisses to everyone XOXO
 
Morning everyone, hope you are all having a good day (or a better day). Sorry I've not been on, been really busy since coming home from leaving daughter to uni (sniff, sniff). Threw myself into housework but have ended up making more of a mess! Think I was trying to distract myself from crying?

AliT, I've only had 1 colonoscopy but I've done 4 clear-outs. In my experience the colonoscopy was fine and I even watched it throughout the duration. The others have already given you great advice and I don't really have anything to add, just wanted to wish you good luck.

Hello Aslpw and welcome, I'm sorry that you are having so much trouble and getting nowhere with your dr, I would agree that a new dr sounds like a good idea, someone who will really listen to you.

Weeze do you have dr on call where you are that could maybe help out with pain meds? Or what is your GP like, would they be anymore helpful than your IBD nurse? She sounds a bit like mine, I called her in extreme pain about 5 months ago and I'm still waiting for her to call back, my dieititian has been much more helpful than her. It's so frustrating!

McCindy, I can't believe the hassle you have to go through to get medicine that might help, it seems ridiculous that they are making you try something that is not likely to help, it would make me wonder about the credentials of the insurance companies independant GI, I reckon we could do a better job of prescribing by the sounds of things, I'm really sorry that the lactulose made you feel so bad and I'm really glad you don't plan on taking anymore. You mentioned being in subway with your hubbie, I can't even walk past their shops without gagging and I've never even eaten there....and my girls love it!! It's definitely not for me.

Moogle, good luck for the new job tomorrow, it sounds great :), hope it all goes well.

Akiva, I used to hate whiskey until about 2 years ago my hubbie and I walked over to the distillery and spent a happy afternoon relaxing in the cafe, sampling each of the different whiskies, well hubbie had beer and I had hot whiskies, since then I have enjoyed the odd whiskey and ginger, it reminds me of a lovely cosy afternoon with my hubbie.

I'm having a weird mixed up time atm, as I've already mentioned I left my daughter to uni at the weekend, despite agonizing joint pains and diarrhea we had a good weekend getting her settled in. The day before we left I got blood test results to tell me I'm in the menopause (at 44) so this didn't really help my emotions. Also during the last couple of weeks I've been acting a surrogate mother to my daughters boyfriend who has no family, he is having to move due to money issues and has other stuff going on and we are going later to see a solicitor about it. So I'm not sure if my bowel is having a bit of a flare or that I'm just reacting to the situation? Oh I finally got an appointment to see my GI on he 7th October so I'm looking forward to that.
 
Lizbeth - My mum was positively traumatised when she took my sister to uni for the first time, they live in Nottingham and my sister went to Plymouth uni, my sister has some health issues too (stomach migraines apparently :/ ) anyway mum was really worried for the first few weeks, but once she was obviously enjoying herself it helped. My sister is now back home and mum said she preferred it when she was in Plymouth lol. When I left she wasn't as bothered as I moved about 20minutes away with my boyfriend, so she knew I was being looked after. (it was also basically the end of the road she worked on at the time). What I'm getting at is that it honestly does get better :ghug:

Do you have citizens advice bureaux there? I went there a few months ago and they gave me free advice on helping with financial problems (council and my bursary were screwing me over)

The whiskey thing is really sweet, i'm the same about Brandy, I didn't like it, but I drank it on my first date with my bf, and now it gives me happy memories when I do have it.

McCindy - Have taken my prednisolone progressively earlier, about 2pm ish yesterday and 11am ish this morning. I slept quite well last night which was nice, and Im starting to feel less pain so Im a very happy bunny atm :) Couldn't imagine having to be awake that long due to drugs, must have been horrible, I frequently have to do that when I finish a spate of night shifts, it kills me though.

Now if only these portfolio pieces for uni (that are due on Monday) would write themselves everything would be good in the hood :p
 
BluebirdinLove, My GP won't prescribe any Crohns meds for me either. The first GP doctor I saw gave me acid blockers the first time I went for this stomach blah-ness years ago. It sounds so familiar! The good news is I recently got a referral to a new GI doc for a second opinion.

Lizbeth - Thanks for the support! I'm looking forward to the job. I always feel better when I'm out of my house, away from my mom. She drives me batty! I know you have a lot on your plate too. Stress definitely makes flares worse. Try to be good to yourself. *hugs*

I'm doing ok today. I'm thankful for my amitriptyline because I slept pretty well. It's stormy this morning so I'm staying in for a bit. I should get my ANA tests back tomorrow I think. Work starts tomorrow. I need to get some food to make for my lunches and snacks. That is on the agenda today. :)
 
Hey akiva, it tests for antinuclear antibodies in your blood. Basically checking for an autoimmune reaction. It's a general test and doesn't diagnose a specific disorder. But it would tell my if that's what's going on and to check for a specific disorder.

Thanks for the support. :)
 
BluebirdInLove said:
Hiya,
Been a few weeks but just wanted to update.
So I went to Washington Dc and they ordered me a second endoscopy just to check.
They had found celiac disease antibodies in my blood but needed to have biopsies too back it up, so they took 6 biopsies.
Today they told me the biopsies didn't show celiac.
So anyways my GP had wanted me to start a small dose of crohns meds but this new GI said because I don't have bleeding that it can't be Crohns.
When my GI rang me to give me my biopsy/endoscopy results (which showed no inflammation) he then said because my original endoscopy (4 of 5 months ago) showed inflammation and that my old GI Dr had reported possible gastroenteritis that they will go off that result? So now I have to go on acid blockers for 6 weeks then see what happens.
So if we are going off test results months ago then what was the bloody point getting another Endoscopy?
So even though I get told it can't be Crohns because no bleeding here is the same GI Dr telling me we are going with gastroenteritis which can cause bleeding and a bunch of other symptoms I don't have... Because that clearly makes sense *she says sarcastically*
I'm due to travel to England to visit family on Christmas Eve and I was hoping I would at least be on meds but I wouldn't hold my breath I even get a diagnosis.
I'm ringing my GYNO tomorrow to have a Pap smear done as I've never had one and I'm nearly 26 (don't judge lol) since my pain is mostly lower and because that part and no pun intended has not been poked yet ... By a Dr of course.
So yeah if you're still reading my post well done for keeping up and not falling asleep lol

Hope everyone is doing as well as they can and I'm sorry I haven't been around to offer support.

Hugs and kisses to everyone XOXO
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Hi bluebird in love,
It sucks they are going off your old diagnosis. I went through that once too.
Am now undiagnosed again. I had a diagnosis the first colonoscopy. Since when does crohns just go away? It goes into remission, but not away forever.
I was just very sick in the stomach for over a week, so I believe it is more than IBS. This happens alot and diarhea too. So they are obviously wrong.
I hope you get everything under control and that theGyno comes up with some answers for you too. I had alot of lower cramping before and had polyps in cervix and uterus. So it could be something simple like that. Lets hope so. Let us know how it goes. :) Rose
 
Lots of updates here. I've had a pretty eventful couple weeks ... unfortunately.

They say what happens in Vegas stays in Vegas. I can only hope that's the case for the machete-wielding demons in my belly. Over the weekend, my two-night jaunt to Vegas for my boyfriend's birthday turned into four nights after I woke up the morning we were supposed to fly home with the most excruciating abdominal pain I've experienced to date.

I'll keep the details as basic as possible because they get pretty gross -- suffice it to say that my boyfriend's ability to help me through this ordeal pretty firmly cements him on the "keeper" list :), lol.

In a nutshell I hadn't had a movement in three full days and had almost completely lost my appetite but finally got hungry in the wee hours of Saturday morning and ate a couple mini slider burgers. I couldn't even finish the second one and went to sleep. Nausea woke me up about two hours later, and I could tell something was really wrong. I got up, sat down in the restroom, and basically didn't leave for four hours. For the first two hours nothing really happened besides awful pain in crampy waves, like my insides were trying to push something out that just wouldn't budge. I swear I thought something had burst. I was literally soaked with sweat and actually must have passed out from the pain for a while.

When I came to, the waves of pain were making me gag and it felt like my body was trying to force things out the other way. Sure enough, I vomited god knows how many times. There must've been blood in there because there's nothing I ate that could've caused the pinkish tinge.

Finally all that pain kept coming in waves and actually got some stuff out of me, which immediately turned into explosive D after the "blockage" was out. Definitely straetorrhea. Don't ask how I know ... suffice it to say, this stuff was DISGUSTING.


My boyfriend convinced me to go to the ER. Got hospitalized for about six hours with elevated WBC (neutrophils were up, which is new for me because I've always been higher on lymphocytes). The ER wasn't really sure what to do since there wasn't any point tenderness and therefore no appendicitis and since my recent CT and scopes were generally negative for anything they could fix in the short term. They pumped me with some antibiotics and sent me home after waffling on whether or not to admit me overnight for observation. (I guess the WBC must have been pretty high.) Finally the attending doc decided that the elevated WBC was probably a "normal thing" for my kind of "chronic trouble" and sent me on my way. I don't know if I trust his judgment, in hindsight, since I later learned the pain med they gave me was like a turbo NSAID -- stupid move when someone reports vomiting blood, yeah? It did kill the pain beautifully though.

Sigh.

Other than that, some blood tests have ruled out blood disorders, lupus and rheumatoid arthritis. I re-read my colonoscopy report though and noticed the pathologist wrote a side note about "prominent lymphoid aggregates, r/o microscopic colitis" -- not sure if it was in reference to one biopsy or in general to all of them. Regardless, she still summarized everything as normal.

Phew. That was a mouthful. Hope all are well -- I'm about to catch up on everything I've missed.
 
@ Rose: Well as for as down below goes I've ad a scan on my pelvis and that came back fine but I dunno I just thought "why not?" I have an Apt on the 17th of Oct, first apt they could give me -__- so will see how that goes!

Thanks for the support guys XX
 
Hey Bluebird, welcome back! I was just saying the other day that I missed you and hoped you were doing okay. So if I understood correctly, they are saying the initial diagnosis was gastroenteritis (stomach virus) and they're basically saying that's still the case?? I was initially diagnosed as having gastroenteritis during my first flare too, but my doctors don't still think that I've got a tummy bug! In my 2nd flare, my GP said it was possible but pretty unlikely that I'd get gastroenteritis again 6 weeks after my first supposed round of it, so already at that time my doc was saying probably something more than gastroenteritis. I can't believe your docs are treating you like this! Poor thing, I know you've been to multiple doctors lately, but it sounds like it's time to look for a new one. Writing someone off as having IBS is lazy enough, but to say it's gastroenteritis is just ridiculous. Gastroenteritis should last a week tops, and unless you're eating poo, you shouldn't get re-infected, it is not a chronic thing and any doctor with more than 2 brain cells should know that. (My GI did tell me once that there's an illness that's basically considered chronic gastroenteritis, but he said it's very rare and I don't even remember the name of it, but he also said it's considered a type of IBD - so even if you had the chronic gastroenteritis, they should still treat you better than this.)

Bureaucratic, welcome back too - but oh my, what a nightmare! Sounds to me like you might have had an intestinal blockage which sounds like it resolved itself. You said you felt something "burst" which was hopefully just the blockage resolving itself (I'm presuming they checked thoroughly enough to ensure that your intestine didn't perforate?). And that's very interesting about them possibly indicating microscopic colitis in your file - I would ask your doctor about that for sure!

How's everyone else doing? I'm having a bleh day, having some d and feeling a bit run down. I'm starting to question whether Pentasa is working, the d is the worst today that it's been since I started taking the stuff. I had one episode of urgent, explosive d this morning and have had a couple dizzy spells too. I'm hoping it's just a bad day but secretly I'm a little worried that the Pentasa isn't doing enough. It doesn't work on the colon, so if Pentasa doesn't work then surely that means I have some colon involvement, right? I have a GI appointment in early November, so I'm thinking I'll stick with Pentasa till then, and I might ask my GI at my appt if I can try Apriso instead. (That does work on the colon.) I know I need to give Pentasa more time, but today has been pretty discouraging so far. I want to get back into remission, and today does not feel like I'm anywhere close to it.
 
BluebirdInLove said:
@ Rose: Well as for as down below goes I've ad a scan on my pelvis and that came back fine but I dunno I just thought "why not?" I have an Apt on the 17th of Oct, first apt they could give me -__- so will see how that goes!

Thanks for the support guys XX
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Mine didn't show till they did a scope up into my uterus.

CAT- Hope you start feeling better too. Sounds like a bad day! Keep your spirit's up and hopefully you can get the med you want for your colon, finger's crossedx. Rose:ghug:
 
Yeah, it's been a rough few days, not to mention weeks and months! I'm trying to keep an even keel and maintain levity about everything. In a warped way, I'm lucky. I've got a dark sense of humor and an unapologetic tendency to overshare, so who knows? Maybe this whole chapter of my life will give me some kind of gross-out humor-fueled creative inspiration.

Anyway, Cat, I'm thinking I may have had some kind of blockage going on too.

We'll see about the microscopic colitis. It'd certainly make sense! It wouldn't answer all my questions, like why my stomach had minor erosion and why I've lost both weight and appetite, but at this point I'll take ANY answers I can get :).

Oh! How's this for MORE weirdness? Today I got CRP and hematology consult reports back. They're completely contradictory. My CRP's crazy low ... just .1, but my hematology report said "observations suggest a reactive or inflammatory process". (I guess my WBC showed some weird lymphocytic stuff going on....)

Plus, there's the prominent lymphoid stuff from the c-scope. I don't understand it but think that's generally a sign of inflammation or infection (aka something you'd see with an elevated CRP, yeah?)

It's all so confusing. Sigh.
 
Bureaucratic, I read a statistic on the forum awhile ago that said approximately 10% of IBD patients (including those with microscopic colitis) will have normal CRP & ESR, even in the most wicked of flares. I think I'm in that 10%, as my CRP has only been a little bit high once - and that was when my presumed IBD was first going into remission, but my arthritis had just started up - so I think the slightly raised CRP was due to mild arthritis inflammation and not the guts. Have you ever had a raised CRP? If not, you're likely in the 10% as well. Unfortunately some doctors really go by CRP and they get confused when it's always low/normal but the patient is very ill. We don't fit what the textbook says, therefore we make no sense and they have no idea how to treat us. My rheumatologist is like that - my CRP was normal, and my hip MRI didn't show inflammatory arthritis - therefore, he has no idea what to do with me other than to send me back to my primary care doc and/or back to physical therapy. Sigh!

I've got a somewhat warped sense of humor about my illness too. I think you have to be able to see the humor in this stuff to get through it - if I can't laugh about it, I'll only cry about it. I'm kind of an over-sharer too on certain subjects that I obsess over. I have a lot of social quirks like that, I've mentioned this a bit in the past but I suspect I might have Asperger's. It would explain SO MUCH about my social quirks and massive introversion, plus Aspies tend to have messed up digestive tracts and seem to get IBDs more than the general population, so it would explain my super-weirdness and my gut issues in a neat little package. I'm kind of afraid to ask my doctor to test me for Asperger's, though, because if the results come back saying I'm not an Aspie, then what? Then I guess I'm just an anti-social jerk who can't make eye contact just because, and who just happened to inherit her great-grandfather's IBD even though nobody else in the family has it? So yeah, the thought of NOT being an Aspie is scarier to me than getting diagnosed with Asperger's, if that makes sense. But I'm afraid to confirm for fear of yet another normal test result! :p

Anyway. As for the potential blockage, Bureaucratic, what did you eat prior to the blockage type symptoms? Anything like veggies, dried fruits, nuts, etc? Certain things are just indigestible, and it's a bit individual, but I avoid veggies & fruits with skins or seeds because those don't seem to break down and could cause a blockage. Iceberg lettuce also does not break down and I'll pass whole chunks of it if I dare eat a salad. Nuts & seeds don't break down and pass through me whole (and make a cool "plink" sound in the toilet). I ate some grapes once and the grapes themselves digested but the skins didn't, and I was passing grape skins for a week - they looked really weird by themselves in my poo, it looked like I was passing contact lenses or something. (How's that for over-sharing, ha ha.) :p Anyway, if something specific triggered this blockage, then you'll at least know to avoid it in the future. I'm presuming the blockage was probably already building up before you ate the sliders, and that the sliders were just the first food item that couldn't get past the blockage, which triggered the horrific vomiting, pain, etc.
 
BureaucraticNightmare, that sounds really rough what you're going through. I hope you feel better soon.

The last few days have been a lot of fatigue. I'm sleeping enough, but it feels like terrible jet lag. Thankfully my stomach is OK. I re-read my colonoscopy report also and they did a pretty thorough exam with multiple biopsies. I feel more confident they did a good job. It did mention mild chronic gastritis. Maybe more issues are from my stomach than my intestines. It's been 3 years ago so who knows how much can change.

Cat, hope you feel better too. The weather here is gloomy and it's like my feelings. Most of my stress is less stomach this week and more from my family. I'm really worried about our financial situation. I'm looking for assisted living for my mom and uncle too, which is sad.
 
Cat-a-Tonic said:
Anyway. As for the potential blockage, Bureaucratic, what did you eat prior to the blockage type symptoms? Anything like veggies, dried fruits, nuts, etc? Certain things are just indigestible, and it's a bit individual, but I avoid veggies & fruits with skins or seeds because those don't seem to break down and could cause a blockage. Iceberg lettuce also does not break down and I'll pass whole chunks of it if I dare eat a salad. Nuts & seeds don't break down and pass through me whole (and make a cool "plink" sound in the toilet). I ate some grapes once and the grapes themselves digested but the skins didn't, and I was passing grape skins for a week - they looked really weird by themselves in my poo, it looked like I was passing contact lenses or something. (How's that for over-sharing, ha ha.) :p Anyway, if something specific triggered this blockage, then you'll at least know to avoid it in the future. I'm presuming the blockage was probably already building up before you ate the sliders, and that the sliders were just the first food item that couldn't get past the blockage, which triggered the horrific vomiting, pain, etc.
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Cat is that normal to not be able to digest salads and veggies etc? Or is that just 'normal' for you? I know this is gross but salad and veggies now leave my body the exact same way they went in. It freaks me out and my GP says it's worrying.
 
lsgs, it seems pretty common for IBD'ers to not be able to digest stuff like that, at least from what I've read in the diet & fitness section of the forum. For me it was a gradual progression. Before I got sick, I used to eat spinach salads all the time and never had any trouble at all with salads. As I was recovering from my first flare, I tried eating a spinach salad, and I poo'ed green for a couple days (which I had never done before) but I could digest it otherwise (no whole chunks of spinach or anything like that). So I didn't eat so many salads because the green color freaked me out and told me "something is not right." Every so often I'd try to eat salads, and I came to find that I could handle a small salad every so often as long as I ate other foods with it, and as long as I only had one small salad every few days or so maximum. I would run into problems quickly if I ate salad two days in a row, or if I ate a salad as a meal with nothing else to go along with it. Now, I can't seem to handle a salad at all. The last time I tried a small salad (with other foods) was last winter. We had a get-together with friends, and my hubby made a gorgeous looking big salad to pass around. I thought, maybe a few bites won't hurt? I had a very small bowl of that gorgeous salad, but it caused immediate pain and I ended up in the bathroom shortly afterwards, passing chunks of undigested lettuce. So no more salads for me. :( I miss salads very much, the closest I get now is juicing.

I can still seem to have a few veggies (like tomatoes) on a sandwich, but I usually pick the lettuce off because it's just not worth it. I can't do cucumbers because they trigger my acid reflux horribly (they're so cool and seem soothing, but they give me wicked heartburn!). Tomatoes aren't trouble-free for me (the seeds & skins don't break down very well, and it's fairly acidic which my GERD doesn't like) but they don't cause me trouble like lettuce does. So yeah, veggies overall are not my friends. Fruits are a little better - I can do blueberries, blackberries and raspberries without issue (I sometimes poo blue/green after eating blueberries, but they break down okay and don't cause pain). I can also do mango just fine (I remove the skin of course). And I can do canned peaches & pears just fine too - fresh cause me trouble with the skins so I only do canned. I can't break down grape skins either, and strawberries don't break down and cause me awful pain (I think it's the little seeds - but blackberries etc have little seeds too which don't cause me any trouble, so I'm really not sure what's up with strawberries?). Bananas can cause pain and make me reflux if I eat a banana as is, but blended really well into a smoothie is okay.

That was way too long, but yeah, I'm a mixed bag, but overall veggies are not my friend and fruits are hit or miss. Lettuce is like you said though, it comes out looking pretty much the same as it went in, and strawberries are the same.

lsgs, have you tried juicing? I can do pretty much any fruit/veggie as long as it's juiced. Juicing removes the fiber, the seeds, the skins, all that problematic stuff. I can juice spinach and not poo green. I can juice strawberries and have no issue at all. I can juice cucumber and not have heartburn! The only issue I've come across with juicing is, if I just make straight orange juice with nothing else added, that will give me heartburn (I think it's too acidic for me). If I mix orange with other types of juices, like if I do a mostly veggie juice and add oranges/apples for sweetness, then I'm fine. So that's how I get most of my fruits & veggies nowadays, just stick them in the juicer and get my nutrients that way.

Moogle, how's the job going? I saw in the news that Toys R Us is starting to hire seasonal help for the holidays - not sure if you're looking for a retail job (that place in particular could be stressful) but just a thought for you as I think you said this warehouse job is only for a short time. Do you do anything creative, crafts or anything? My hubby makes and sells little dragon sculptures on Etsy (and for those who remember Allieinwonder who used to be a regular in here, she crochets blankets and sells those on Etsy too). Just another thought for you - my hubby wasn't making hardly any money on Etsy, but things have picked up lately and he's sold 3 dragons this week! So that's a little extra money for us and certainly helps me breathe slightly easier. It's not a lot of income, making dragons will never be his full-time job or anything, but it's a nice bit of extra cash that we can certainly use.

How's everyone else? I'm a bit better but still not great today. I had a nice evening last night though, we took our dog to the park and she met up with her two friends (they're all corgis, so it was 3 adorable corgis all playing together!). That was really cute. :) I'm pretty exhausted today and the guts aren't happy. Seems like I'm having the big d no matter what I eat, so I kind of gave up and had a brownie for dinner last night. I fall off the diet wagon all the time so I'm not really too concerned about that. I'm planning on going to the gym tonight anyway, I try to never fall off the exercise wagon. If I can do something active every day then I tend not to feel hideously bad. And exercise chases my depression away too. I'm feeling a bit down today so the gym is very much needed! I can't wait, I'm so looking forward to it.
 
Hey Cat. The job was a nightmare today. It was actually about 80% due to my mother and 20% the job. I'm a caregiver for my mom and my uncle and share a house with them. I had a hard time getting to sleep last night. After finally getting to sleep, my mom woke me up at 1:00 am last night wanting a pain pill (she's always in pain). She was in "sever pain" so she called ems to take her to the hospital. It wasn't serious, turned out to be a strained muscle from where she got a flu shot.

My nerves were so bad last night. I was furious because I had to be up early to drive an hour to the job. My mom doesn't care. She's addicted to pain pills and she will do ANYTHING to get them, or a shot from a doctor. I think I only got 2 hours of sleep. I got to the job late because I got lost. Thankfully the managers weren't mad cause it was the first day.

Somethings ticked me off with the job. The work itself wasn't hard, but they lied about the placemats. They said we'd have placemats to stand on, and then they said they didn't have any when we got there. So I was standing on concrete the whole time. My back was getting sore from standing and bending a lot. But I felt pretty sick from not sleeping. Not as much on the stomach as it's my head, eyes, and back. My stomach doesn't feel great though.

I probably won't go back to the job. My mother will make my life a living hell if I try to work. I am looking for assisted living for my mom and uncle. Neither one is stable mentally and never had taken care of themselves before. We don't have any other reliable relatives either. I have to get out of this situation because I can't take care of my health, work a job, take care of two people and a house. I'll either go insane or get really sick if this keeps up. :(
 
Moogle - sounds like your in a right rut at the moment, don't know what to suggest, but im sure some of the others will have good suggestions.
Thinking of you :ghug:
 
Hey Cat!!! Aww I've missed you too darlin!! *huggies*
Yep basically that is what he is saying, after getting off the phone to him I ended up breaking down in tears and not because I felt sorry for myself but because I am frustrated to hell :(
I set off 10 am on the day of my endoscopy and didn't get home till bloody 8pm they made me wait an extra 2 hrs after my procedure time :( and all that for bloody nothing!!
I am considering trying someone else.

:(( woke up today and my god I had really bad D and my tummy has been killing all day :(
I've had 2 of those acid blocker tablets and I dunno how long they take but I feel worse and if it isn't them making me worse then they aren't helping. I know it's only been 2 days but I really think its pointless but I guess I will have to see how I feel in a week or 2 and if nothing then I'm going to tell them.
See what they say I guess.

Just read what you said to my hubby and he agrees with you that it's ridicules.
Hope your doing alright sweetie?
x
 
I was just reading through all the posts about undigested food and it really hit me. I have that problem a lot and its getting worse. My recent SBO was due to eating CORN. It took a week and a half to get the last of the very undigested corn out of my system. I know not to eat nuts as much as I love them!! Horrible pain if I eat something that can't digest and then I can't get it out. OUCH! My SBO was so traumatic. I was in the hospital four days and my RN the one day was pure evil. I will do pretty much anything NOT to do that again.
 
I also have issues with some veggies. Beans, nuts, salads go right through me so I stick to well cooked veggies. I can tolerate some soft cabbage, carrots, potatoes, and soft green beans. I don't eat much fruit anymore besides banana.

I thought it would cheer me up to share some interesting reads about fiber.

The first book I bought when I was diagnosed with IBS is "Eating for IBS" by Heather Van Vourous. This link talks about the different types of fiber.

http://www.helpforibs.com/diet/fiber1.asp

http://www.helpforibs.com/diet/fiber2.asp

Here is a really interesting read about Cellulose (fiber) and why humans don't digest it even though some animals can.

http://dujs.dartmouth.edu/fall-2010/turning-waste-into-food-cellulose-digestion#.UkS1WYZU91s
 
Bluebird, acid blockers might help if your pain is due to gastritis (which can be exacerbated by too much stomach acid). Is your pain up high, like above your belly button? Or is it low like in the intestines as opposed to the stomach? I've had gastritis and it's a lot different from the IBD-type pain. The gastritis pain is always high, like 2 inches above my belly button - my IBD pain is always low, usually in the lower-right. If the acid blockers aren't helping, and your pain isn't high, then it's probably not gastritis and I'm not surprised that it's not helping. And if it is gastritis, acid blockers should be helping pretty quickly. If it's been a few days and no relief, I would say call the doctor and say it's not helping. Hang in there! Oh, and I had a similar time with my endoscopy last year. My appt was at like 11 AM, and my GI was over 2 hours late. It was something like 1:30 by the time they finally started the procedure. I like that they tell you not to eat and then they make you wait, and wait, and wait... I waited so long that my anesthesia nurse went on her lunch break! But I didn't get to eat! :p Ugh.

Omaklackey, corn is definitely something to avoid! I don't think it digests very well even for healthy people. Popcorn is not digestible either. (I miss cheese popcorn so much!) I'm presuming you've told your doctors about foods not digesting? That sucks you had an obstruction due to corn - did they not find any cause for the obstruction? Usually obstructions won't happen unless there's narrowing/strictures. It upsets me when people get serious stuff like obstructions but still don't have a proper diagnosis! Ugh, frustrated for you.

Moogle, I agree to some extent about soluble fiber. Psyllium is soluble fiber and that's helped me a lot, although it does bad things to me (bloating, cramping, pain) if I take too much. I'm sorry to hear about the job, and your mom, and uncle, that all sounds really overwhelming. I hope you're still able to relax and take care of yourself in the middle of all this. Big hugs!

So I had a rheumatology appointment today. I didn't even mention it in my earlier post (and I practically forgot about it!) because I wasn't expecting to get anything out of it - my rheumy seemed done with me after the MRI didn't see inflammatory arthritis. I was thinking of asking for a steroid injection into my bad hip, but I figured he wouldn't be on board with that since no inflammatory arthritis. But, he was the one to suggest doing a steroid injection! And he actually did 2, both into the bad hip (he said there are 2 muscles in the area of my pain, so he did one injection into each muscle). It still kind of hurts, I've been resting all evening. I'm hoping it works - he said it could take up to a week or 2 to feel the full effects. We'll see what happens! I really wasn't expecting to get a steroid injection, so this was a pleasing surprise.
 
Thanks for that Cat. I have never tried juicing. The way my reflux is, anything thin or liquid is more likely to come back up so the idea freaks me out. For example, I cannot drink a glass of water without having wicked reflux but I can drink fizzy juice cause it's a little thicker. It's really annoying and is wrecking my teeth. Supposedly people with sjogren's syndrome have a weak pyloric sphincter which means there's not much of a barrier between your stomach and your throat.

Glad your rheumatologist is trying a steroid injection for you. If there's any inflammation it will tackle it really well. I had one in my bum about a year ago and it stopped the inflammation in my guts so well. I had no d for 3 months!

I see my rheumatologist on Tuesday, might finally find out if I have lupus or not.

Some happy news, I managed a 15 mile cycle yesterday with no reflux and no tummy pain. Had d straight away when I got home, like literally just got home in time, and today my knees are really sore, but I'm proud of myself :) I couldn't have managed this a year ago. Came across this and just had to take a picture...


Haha, I'm such a loser :ycool:
 
Morning :))

Cat:
My pain is really low like just above my (insert preferable word for vagina) it's always pretty low on my tummy.
Haha on her lunch break?! Omg 0.0
I swear some Drs are just testing you, like how far can we push her till she wants to punch us in the face :)
One of the Drs (not mine) did say something funny though he said "so no drink at least till tomorrow, if you want to take a shot of tequila in the morning then I'm cool with that" haha he was laughing like :) love a good sense of humor!

Aww Cat I'm glad you got your injections!!! :) does that mean you should feel a bit better?

Lsgs well done on the bike ride!!! No you're not a loser! Ha :) I couldn't even manage 1 mile!

Xoxo
 
Moogle33 said:
Hey Cat. The job was a nightmare today. It was actually about 80% due to my mother and 20% the job. I'm a caregiver for my mom and my uncle and share a house with them. I had a hard time getting to sleep last night. After finally getting to sleep, my mom woke me up at 1:00 am last night wanting a pain pill (she's always in pain). She was in "sever pain" so she called ems to take her to the hospital. It wasn't serious, turned out to be a strained muscle from where she got a flu shot.

My nerves were so bad last night. I was furious because I had to be up early to drive an hour to the job. My mom doesn't care. She's addicted to pain pills and she will do ANYTHING to get them, or a shot from a doctor. I think I only got 2 hours of sleep. I got to the job late because I got lost. Thankfully the managers weren't mad cause it was the first day.

Somethings ticked me off with the job. The work itself wasn't hard, but they lied about the placemats. They said we'd have placemats to stand on, and then they said they didn't have any when we got there. So I was standing on concrete the whole time. My back was getting sore from standing and bending a lot. But I felt pretty sick from not sleeping. Not as much on the stomach as it's my head, eyes, and back. My stomach doesn't feel great though.

I probably won't go back to the job. My mother will make my life a living hell if I try to work. I am looking for assisted living for my mom and uncle. Neither one is stable mentally and never had taken care of themselves before. We don't have any other reliable relatives either. I have to get out of this situation because I can't take care of my health, work a job, take care of two people and a house. I'll either go insane or get really sick if this keeps up. :(
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Hey moogle33,
I agree with you about the caregiver thing 100%. I did it for a yr. till the woman passed on and as much as I loved the job, it made my symptoms so much worse. So much stress trying to be there sometimes 70 hrs a week and come up with what to feed her, Dr.s appts. I had to take her too and even to hairdressers. Trying to get her around in a wheelchair everywhere and lifting it into the car and out. I would have attacks of diarhea at her house and run to the bathroom. She was understanding though because she had it herself alot.But you having to live with it 24/7. I cannot imagine. I at least got to come home. I hope you are able to find assisted living for them so you can have a life of your own now.
 
lsgs, that's really cool! You are not a loser! I bring my camera with me on bike rides too and take pictures of interesting things I see. I saw a huge snapping turtle on a ride through a nature preserve once, I got a picture of it. That giant bike is really cool, I totally would have taken a photo too! I know what you mean about the guts and the knees though, mine are both often unhappy after a long-ish ride too (I usually do 10 to 15 miles). My left knee in particular gives me a lot of pain during & after a ride, and the guts sometimes stay upset for days afterwards. I think it's because I need to use my core muscles so much for steering, balance, etc, and my body just doesn't like that much tummy involvement. I'm not sure if my muscles are squeezing on my guts or what, but yeah, once a ride is over I pretty much have to sit with the heating pad on to try to keep things relatively calm in tummyland.

Bluebird, if your pain is that low then I can't imagine why they'd think an acid blocker would do anything! Ugh, these doctors are idiots sometimes. Did you call your doc today and tell them you're not doing any better? Maybe also ask what their reasoning is for putting you on acid blockers when your issue doesn't seem to be acid-related.

As for my injections, yes, the idea is that if there's inflammation of any kind in my hip, that the steroids will blitz it and make me feel a lot better. So far I still just feel pain from the injections, I don't notice a lot of improvement just yet. The doctor did say it can take up to a week or two for me to feel the full effect of the steroids, so hopefully it'll kick in soon. It's a bit frustrating because when I was first on oral steroids (prednisone), it kicked in so fast, within 24 hours. I'm impatient and I want the injections to kick in already! :p lsgs, when you had the steroid injection, how long were you sore for afterwards? Was it like a flu shot where your muscles in the area are sore for days?
 
Was feeling a bit gassy today, but had to lower my dose of prednisolone cos I started the second box to find the chemist had missed a dose out of the box :(

Anyway my friend bought me a dinner for helping her with her assignment, which was a 'healthy burger' basically a bit of steak in a bun. Didn't think much of it cos ive been so well for the past few days.

anyway within 20 minutes of the food I was on the loo. pure bloody liquid. not happy. finally stopped, went to sleep as felt really rough, woke up again needing the loo. Just been in again now, its awful, worst ring sting ever, its physically burning me. any ideas how to stop the pain? ive tried cold wet tissue in between spurts, which helps a bit but its agony. Its now pure brown liquid, which I couldn't keep in if I tried, with little sesame seeds (not sure where they were from, didn't notice them on the bun)

sorry for tmi, just in pain :(
 
akiva said:
Was feeling a bit gassy today, but had to lower my dose of prednisolone cos I started the second box to find the chemist had missed a dose out of the box :(

Anyway my friend bought me a dinner for helping her with her assignment, which was a 'healthy burger' basically a bit of steak in a bun. Didn't think much of it cos ive been so well for the past few days.

anyway within 20 minutes of the food I was on the loo. pure bloody liquid. not happy. finally stopped, went to sleep as felt really rough, woke up again needing the loo. Just been in again now, its awful, worst ring sting ever, its physically burning me. any ideas how to stop the pain? ive tried cold wet tissue in between spurts, which helps a bit but its agony. Its now pure brown liquid, which I couldn't keep in if I tried, with little sesame seeds (not sure where they were from, didn't notice them on the bun)

sorry for tmi, just in pain :(
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Put on some vaseline or any kind of oinment like A&D oinment to protect your bum from the burning. I get that too alot and I wear Desitin babyrash cream alot.
 
Akiva, is blood one of your usual symptoms? If not, or if this gets worse or changes or anything like that, please think about going to A&E. As for the ring sting, if you can get to the store, they do make moist flushable wipes which are wonderful. You can also try a cream (like diaper cream or barrier cream) for your backside. My cream of choice is Calmoseptine, it's very soothing. I'm not sure if you have that brand in the UK though.

I feel for you, I can't handle red meat at all and sesame seeds also don't digest for me and they cause me pain. Do you have a hot water bottle or a heating pad? If so, try putting that on your tummy to calm things down a bit. A hot bath can also help both the tummy and the ring sting. Hang in there hun! Hopefully once that sandwich is all out of your system, you'll start to feel a little better. Oh, and make sure to drink as much as you can - you're probably getting dehydrated with all the liquid stools, so drink water or sports drinks or whatever you can. And like I said, please go to A&E if it gets worse or doesn't get better soon - at the very least they should be able to give you some IV fluids if you get too dehydrated. Big hugs!
 
ill see what creams ive got in, theres no way Im going more then 15ft from my loo tonight. (im currently on the spare bed with the laptop, which is conveniently in the room next to the loo) Blood is sometimes one of my symptoms, ill keep an eye on that. Cheers guys :)
 
akiva said:
ill see what creams ive got in, theres no way Im going more then 15ft from my loo tonight. (im currently on the spare bed with the laptop, which is conveniently in the room next to the loo) Blood is sometimes one of my symptoms, ill keep an eye on that. Cheers guys :)
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Can you get your hands on some sudocream? That stuff is magic. I know ideally applying a barrier like vaseline would help but when you have d it's not really that simple. Sometimes my whole butt area becomes so inflamed it bleeds right through my underwear (tmi? lol) after having prolonged d, and sudocream really helps and soothes it and heals it up.

Cat-a-Tonic said:
lsgs, that's really cool! You are not a loser! I bring my camera with me on bike rides too and take pictures of interesting things I see. I saw a huge snapping turtle on a ride through a nature preserve once, I got a picture of it. That giant bike is really cool, I totally would have taken a photo too! I know what you mean about the guts and the knees though, mine are both often unhappy after a long-ish ride too (I usually do 10 to 15 miles). My left knee in particular gives me a lot of pain during & after a ride, and the guts sometimes stay upset for days afterwards. I think it's because I need to use my core muscles so much for steering, balance, etc, and my body just doesn't like that much tummy involvement. I'm not sure if my muscles are squeezing on my guts or what, but yeah, once a ride is over I pretty much have to sit with the heating pad on to try to keep things relatively calm in tummyland.

As for my injections, yes, the idea is that if there's inflammation of any kind in my hip, that the steroids will blitz it and make me feel a lot better. So far I still just feel pain from the injections, I don't notice a lot of improvement just yet. The doctor did say it can take up to a week or two for me to feel the full effect of the steroids, so hopefully it'll kick in soon. It's a bit frustrating because when I was first on oral steroids (prednisone), it kicked in so fast, within 24 hours. I'm impatient and I want the injections to kick in already! :p lsgs, when you had the steroid injection, how long were you sore for afterwards? Was it like a flu shot where your muscles in the area are sore for days?
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I had mine in my bum and I remember it being real sore to sit for a few days. I would inadvertently lean against things and feel this horrible sharp pain. I have heard that joint injections are far, far worse than the ones in your bum though and they take a little while to work?? My mum has rheumatoid arthritis and she's had them and says the same. So don't lose hope just yet! For me the diarrhoea stopped about 2 days later but it's a totally different injection for a different purpose so probably not comparable? They also gave me quite a high dose (80mg kenalog). The next day my face felt really flushed and red, I felt quite hot and sick but it passed within a day and I had no more side effects.

I'm having problems with my feet going numb on the bike. I took it in for a bike fit as I assumed it was the new bike, but then it happened when I was riding into work on my old faithful road bike. A couple of times my feet have gone numb just lying on the couch. Then my hands have started too. Sjogren's can cause peripheral neuropathy and I'm getting worried this is the beginning of it :(

BluebirdInLove said:
:(( woke up today and my god I had really bad D and my tummy has been killing all day :(
I've had 2 of those acid blocker tablets and I dunno how long they take but I feel worse and if it isn't them making me worse then they aren't helping. I know it's only been 2 days but I really think its pointless but I guess I will have to see how I feel in a week or 2 and if nothing then I'm going to tell them.
See what they say I guess.
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Sounds like your docs fobbing you off with acid blockers cause they don't know what else to suggest - been there!! Makes no sense when your pain is low down unless you have upper tummy problems too. How are you feeling now?

Well, I've just been out for a wonderful dinner with some old friends and as anticipated the belly is gearing up to go nuts. And my husband hasn't come home when he said he would - GREAT. So I've got a dog to take care of with PAIN and having to run to the toilet. Better go hit the dihydrocodeine.
 
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Thanks lsgs! I don't think my injections were directly into the joint, I'm thinking my injection was similar to yours. My hip pain is always more on the outside of the hip, and the rheumy said true hip pain would be more "inside" towards the groin area. He did 2 injections into muscles along the outside of the hip where my pain usually is. It didn't hurt horribly but it certainly wasn't pleasant either. The pain has ebbed somewhat within the past couple of hours so I think I'm past the worst of it. I'm still having d though so no change there so far! I'm not even sure what dose he injected me with, either. I don't feel hot or flushed, although I was pretty nauseous this morning but that's fairly typical for me (mornings are usually not great d-wise and nausea/appetite-wise).

That's scary about your feet going numb while on the bike! :( I hope it's not your Sjogren's progressing. As for your dog, I find my dog is perfectly content if I give her treats in place of walking her on a bad day. Not good for her weight I know (she's too fat for a corgi, she should be 35 lbs max but she's more like 42 lbs), but on a bad day I just can't. So on a bad day she gets some treats put inside her puzzle ball (she has to manipulate the toy in a certain way to get the treats out) or she gets a rawhide bone or whatever to keep her occupied and happy and stimulated. My dog is also happy to chase a ball up and down the hallway of the house while I sit on the couch and toss the ball for her.
 
RosaleeMae, thanks for your support. I'm hanging in there. Sometimes the stress makes the stomach symptoms worse for me too. I remember getting D when I'd visit my mom in the hospital or when taking her to doctor appointments. Maybe it's a psychosamatic reaction. I hate doctor's offices and hospitals.

akiva, hope you feel better soon. The last time I had D really bad, I caught up on some reading on the potty. I turned it into something productive :p I think you had better suggestions as far as wipes and creams, but if all else fails try damping some kind of paper towel with water. I usually do that because regular TP is painful.

lsgs, I noticed you are taking domperidone. I used to take that for gastroparesis. Are you on that for sjogren's? Does sjogren's cause you to have gastroparesis symptoms (nausea, fullness, bloating)?

Cat, hope that shot helps you out for your pain. Have you been having D all day long or is it just in the morning? Do you do a brat diet when it gets bad?

Even though I've had a helluva stressful week, my stomach has behaved itself. I'm thankful for that. I got some exercise today too. My friend took me out to play disc golf. It's like golf but with frisbees! I lasted maybe three or four holes and I had to quit because I was hot and arms were getting worn out. But I had a good time.
 
Cat: I haven't rang yet I'm just going to do two weeks just so I have a better argument.
They kept really pushing that question on me "do you get acid reflux " and I had it the other day which was like the first time in forever and it was only a lil but I don't get it otherwise!
Today has been bad for pain, was in bed most the afternoon because I also came on today and that seems to make my symptoms even worse *shakes her tiny fist at mother nature* and I went out for dinner with my hubby and a friend and I struggled to eat and was in such terrible pain. I didn't even go pub after, I let my hubby go with his mate and I went home and put my pjs on :(
 
Hi everyone, welcome to the weekend :).

Akiva thank you for telling me about your mum and how she felt when your sister went to uni, I have sobbed a couple of times one of those times was the night before we left her and I had to wrap her birthday present, she will be 21 next week and it breaks my heart that I can't be with her :( but that's the way it is so I'll just have to get used to it. Your mums situation is a lot like mine, my eldest daughter sort of lives with her boyfriend (still has a bed at home) but it's only 10 minutes away and I know he loves her so I don't worry the same. I'm so sorry that you've had major tummy troubles I know how horrible that can be, I also use sudocream when it happens and it really does help, hope you can get some. Will be thinking about you....

Moogle it's such a shame your first day didn't go well, I can understand how frustrating the problem with your mother must have been, as you know I have problems with my dad and he has done something similar (but different :)) to my older sister. She will be starting a new job in a call center for a bank, we warned her that dad would change to it so that he could call her to fix his problems, she said he wouldn't but it was the first thing he did when she told him about the job, we know he will make her life misery calling everyday. Don't be sad about looking for assisted living, ultimately you have to break away a bit in order to protect your sanity (I have been trying to tell my little sister the same thing cos she is at breaking point). You need to put you first in order to be able to be there for them both, I wish you much luck in finding some help, sending you a big hug from someone who knows what it's like :ghug:.

Bureaucrat it must be so disappointing to not have been able to enjoy Vegas, I know you were concerned about it before you went. How are you feeling now? It's very confusing getting weird blood results, it certainly doesn't help any when your trying to get a firm diagnosis. I'm expecting to be discharged from my GI because of all my 'normal' results and I know I will be very angry if it happens :(. I love the oversharing, I sort of feel it helps in a strange way, my sister and I talk about everything, though she is the only one I feel comfortable doing it with. As a child she had a large growth discovered growing in/on her bowel and as a result of it being removed she lost a third of her bowel, so she has always had a keen interest with her bowels activity and talks openly about it all the time. We quite often have a laugh about stuff.

Cat I'm happy you got some injections and really hope that you do feel better soon, I'm crossing my fingers that they work :). I have awful hip pain that feels like my hips are on fire, especially the right one yet my crp is also normal and my mri report said 'no detectable abnormalities? It's a conundrum? I just don't understand how my rheumy says there is no inflammation when I feel like my joints are on fire. As you know I also take pentasa, at the start I didn't think it was doing anything but as the time went on my symptoms have eased so maybe it's just going to take time before you feel the benefits of it, I believe that you've just had a bad day cos that's what happens to me, I think it's just the nature of the beast that it IBD!!

Lsgs congratulations on the bike ride, I most definitely do not think you are a loser!! I couldn't even sit on a bike now let alone ride 15 miles, that's fantastic :). I've been advised against bike riding cos of my knees, not that I mind cos it's not really my thing. My husband goes out a lot but I worry the whole time he's away cos he won't wear a helmet :( so I'm always very relieved when he arrives home. He also takes his camera out with him and can be away for hours, coming home with some lovely images, he would appreciate the one you took of the bikes :).

Bluebird I always have the same trouble when I get my period and the pain at times can be horrific! Now that I'm having the menopause I'm hoping periods are a thing of the past (fingers crossed) I haven't had one now for about 7 or 8 weeks and I'm not complaining, though I don't enjoy the hot flushes much!! lol. I do hope it goes away quickly for you cos it really is unpleasant, take care.

I'm giving myself a lazy day today, not feeling very good. Woke up with extremely high blood glucose and diarrhea :(, feeling very fragile right now and quite weak? Now for a bit of over sharing of my own....after my d when I wiped myself it was just a pure jelly-like blob? It's not the first time this has happened but I'm not sure what's going on, I would really appreciate a little insight if anyone could help me. I've also got a bit a burning ring going on so I've hoked out my sudocream too :(. It's not really a good day lol. I've also wondered about times when I felt like I was having a SBO but when I've discussed this with my GI he puts in down to constipation, I even ended up in casualty one night cos I felt sure there was something nasty going on but again was diagnosed as constipation, has anyone else had the same experience?

This has been a really busy and emotional week between worrying about my daughter at uni, taking her boyfriend to a solicitor and dad has been causing major upset, I'm exhausted with it all. My daughter seems to be settling in and has made a couple of friends which is great, she starts class on Monday and I know she will be much happier then too. The appointment with the solicitor went well and gave us valuable info that might help resolve the issue, I hope :). I took myself to a spa for some pampering which was wonderful, saddly all the good was undone when I came out because of my dad and since then it's been torturous :(. It's an on-going problem with him that will never be resolved so something I just have to try and manage.

On the happier side of things....I applied for a bursary for my daughter from the post office, it's an award available to children of past and present post office employees. We heard nothing from them since July so I wasn't very hopeful but we got a letter on Thursday telling us we had been successful and she got the maximum grant for 3 years :). I also signed up for an art class which started yesterday. I've been off work now for nearly 3 years and was finding it difficult to go out so I decided that this class might be the first step towards getting into a social setting again, plus I love to paint and have had major trouble using my right hand since surgery on the wrist, so I thought maybe it would help me and be like a therapy for my hand? I do hope it works for both issues.

Sorry for going on soooo long, if you've managed to get this far, thank you for reading. Hope you all have a great weekend.
 
Cat-a-Tonic said:
Thanks lsgs! I don't think my injections were directly into the joint, I'm thinking my injection was similar to yours. My hip pain is always more on the outside of the hip, and the rheumy said true hip pain would be more "inside" towards the groin area. He did 2 injections into muscles along the outside of the hip where my pain usually is. It didn't hurt horribly but it certainly wasn't pleasant either. The pain has ebbed somewhat within the past couple of hours so I think I'm past the worst of it. I'm still having d though so no change there so far! I'm not even sure what dose he injected me with, either. I don't feel hot or flushed, although I was pretty nauseous this morning but that's fairly typical for me (mornings are usually not great d-wise and nausea/appetite-wise).

That's scary about your feet going numb while on the bike! :( I hope it's not your Sjogren's progressing. As for your dog, I find my dog is perfectly content if I give her treats in place of walking her on a bad day. Not good for her weight I know (she's too fat for a corgi, she should be 35 lbs max but she's more like 42 lbs), but on a bad day I just can't. So on a bad day she gets some treats put inside her puzzle ball (she has to manipulate the toy in a certain way to get the treats out) or she gets a rawhide bone or whatever to keep her occupied and happy and stimulated. My dog is also happy to chase a ball up and down the hallway of the house while I sit on the couch and toss the ball for her.
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I know, it does worry me. Thing is, my rheumatologist is a great guy, he listens, he's funny, he puts me at ease and I very rarely feel like a hassle to him but he doesn't really act on things. If I tell him something, he won't act on it and he has never ordered anything except blood tests for me. I saw another rheum and she ordered chest and joint x-rays, and a CT scan because she wanted a baseline for my cancer risk. And another rheumatologist is the reason I'm on steroids. No progress has been made with this rheumatologist, as great a guy as he is. I have so many new symptoms since I last saw him, but I know he won't act on it when I tell him on Tuesday. There have been times I've had to leave painkillers by the bed and wake up an hour early so I can get out of bed/ walk in the morning. Or a few weeks ago my ankles were insanely painful and I had to take dihydrocodeine to walk the dog. But he won't do anything. He'll say 'it's just sjogren's, even though I know this is outwith what sjogren's should cause (we studied it very intensely at university)

Moogle33 said:
lsgs, I noticed you are taking domperidone. I used to take that for gastroparesis. Are you on that for sjogren's? Does sjogren's cause you to have gastroparesis symptoms (nausea, fullness, bloating)?
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Sjogren's causes horrible reflux/regurgitation. Apparently the sphincter that stops food coming up into your throat is weak and allows food to travel back up. I guess the idea is to get the food moving out your stomach quicker. I take it in combination with lansoprazole and ranitidine at the moment but it doesn't really help. It's not really an acid problem.

I had a lot of nausea, fullness, bloating and upper abdominal pain right where your ribs meet. I was hospitalised for it more than once. Then I was put on pancreatic enzymes and it's quite rare for me to feel that now. My symptoms are all bowel now! Sjogren's affects all exocrine (secreting) glands and in my case it has affected my pancreas and made it 'dry' so food wasn't digesting as well.
 
BluebirdinLove, the first time I saw a doctor about my stomach pain he gave me an acid blocker. It's annoying isn't it? Maybe in his defense, I did have gastritis on my colonoscopy and acid blockers sometimes help with that. It can be frustrating when you are in pain and the doctors don't listen. That's not their specialty. It's usually pill pushing.

lsgs, I used to have bloating, fullness, and gas in my stomach, upper abdomen every night for about two years. Thankfully, that has gotten better. Since you are having the bowel problems now more, you may want to get off of domperidone. My GI doc told me that domperidone can cause diarrhea when I asked about side effects!

How's everyone else this weekend? Cat, you hanging in there?

Today was a better day. The weather is perfect right now. I rode my bike some this morning. My friend is planting a vegetable garden. I went and had dinner at his place and I helped him with his garden. I don't have a green thumb, but it was nice to get my hands dirty a little bit. :)
 
I think GIs like to prescribe acid blocking meds, but those can also cause diarrhea and greatly increase your odds of getting C. Diff. I tried to avoid them as much as possible (the meds....not the GIs...though sometimes I'd like to avoid the GIs as well).

What do you guys think about my test results? To refresh your memory, my doctor sent my colonic biopsies back (per my request) for tryptase staining to check for mastocytic enterocolitis. The literature indicates that mastocytic enterocolitis is diagnosed when there are greater than 20 mast cells per high powered field. My pathology report says that there were "approximately 20 mast cells per high powered field." I'd say that's positive/borderline positive for mastocytic enterocolitis, especially since I have been on oral hydrocortisone. The nurse just said the test was negative, but the pathology report says it's negative for systemic mastocytosis, which is a separate condition. Your thoughts? I'm still waiting to hear back again from the doctor. I want to change GIs, but I'm very limited by my insurance.
 
Hi guys
I hope you are all well. Sorry I haven't been on still not feeling any better and I've been put on pentasa and budesonide both max dose. I've an appointment with my GI in three weeks and I'm petrified of him just stopping everything even though try have seen the inflammation now but still paranoid. But I have to be honest with him and tell him things aren't working. Does anyone know what would come next on IBD treatment scale? Also bloods are terrible low potassium, vit b12 etc but no inflammation showing in my bloods! Now I'm diagnosed feeling equally lost and sick :/
Seems to be a lot of new posts and new people to this blog-welcome everyone and I hope this forum gives you as much help as it has for me. I literally couldn't have got through my life without this forum.
 
Cat -- fascinating about the Asperger's/gut trouble observation. I'm bipolar (bipolar II, the milder version), and I've always found the connections between psychiatry and physical health fascinating. In fact, the latest research suggests bipolarity may be an inflammatory disease. It'd certainly help explain why bipolar mortality rates and ages are so much worse than the general population. (Suuuuure, a lot of us die young because we crash a motorcycle or overdose on cocaine during a manic episode or have our lives claimed by depression -- but that alone can't explain it. If I'm remembering right, there's a pretty high association between bipolarity and deaths from heart disease and other possibly inflammation-related issues.)

Anyway, it seems like the more scientists delve into the way our minds work, the more they learn about how intimately connected our brains are to our bodies.

Chickadee -- I don't know anything about mastocytosis, but I do share your frustration with borderline-unusual results. I'm used to getting test results now, so I don't panic anymore when I see almost-out-of-the-ordinary stuff unless it's literally right on the cutoff (like your mast cell count.)

Where I run into trouble is when I see a lab and something is actually flagged because it's abnormal, high, low, whatever. I can usually sit on my questions if nothing's even technically unusual, but it's a lot tougher to accept "nothing's weird here" when you've got a piece of paper that says "dude, something's weird here." It's not that I'm second-guessing my doctors when I press them on a finding. I'm happy to take "you're healthy!" for an answer -- I just want to know, for my own peace of mind, why the whole "weird" thing isn't scary weird. You know?

Annnyway. General stuff now...

I've been feeling especially nuts lately, mostly because my GI has pretty much assured me I've got IBS. (I don't think this can possibly be right because I've had IBS my entire life. I only sought medical help because symptoms got so radically worse and different.) Why do I get fevers? Why am I suddenly getting constipated for the first time in my life? Why can't anyone explain the blood in the toilet? And why the heck am I vomiting every time I eat red meat? I've been to the ER twice this summer. If that's garden-variety IBS, then dude. There needs to be a massive awareness campaign on just how much IBS can interfere with people's lives.

The possible inflammatory component of bipolarity makes interpreting some of my bloodwork all the more frustrating. Infection and inflammation can make lymphocytes turn reactive, your neutrophils spike, your cortisol climb -- but so can stress. So on top of getting different opinions from different people, there's always the added element of "am I just going crazy" on top of it all.

I see a lot of people feeling overwhelmed and frustrated about feeling sick and not being able to figure out why. It's enough to make anyone wonder if they're going insane. But when you have an underlying mental illness like I do, it's especially problematic -- because second-guessing my doctor becomes the only way to avoid second-guessing my own sanity.

UGH. I feel like all I ever do is vent here.
 
Moogle33 said:
BluebirdinLove, the first time I saw a doctor about my stomach pain he gave me an acid blocker. It's annoying isn't it? Maybe in his defense, I did have gastritis on my colonoscopy and acid blockers sometimes help with that. It can be frustrating when you are in pain and the doctors don't listen. That's not their specialty. It's usually pill pushing.

lsgs, I used to have bloating, fullness, and gas in my stomach, upper abdomen every night for about two years. Thankfully, that has gotten better. Since you are having the bowel problems now more, you may want to get off of domperidone. My GI doc told me that domperidone can cause diarrhea when I asked about side effects!

How's everyone else this weekend? Cat, you hanging in there?

Today was a better day. The weather is perfect right now. I rode my bike some this morning. My friend is planting a vegetable garden. I went and had dinner at his place and I helped him with his garden. I don't have a green thumb, but it was nice to get my hands dirty a little bit. :)
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Hi Moogle, I'm glad you are having a good weekend. I had painful bowel movements for two days because I took diahrea medicine and I am not kidding, it blocked me up so my BM was so huge (sorry), I had to push and push tol get it out. I never had it that bad before. Now today, I had gas and pain and diahrea for hours. I can't win. Is anyone else that way?
Also I was wondering if anyone gets stomach pain from taking antidepressants? I seem to get sick everyday after I take my morning pills and I know that it isn't any of the others because I have been on them for years. the antidepressant is fairly new. Thanks for your help.
 
Gabi said:
Hi guys
I hope you are all well. Sorry I haven't been on still not feeling any better and I've been put on pentasa and budesonide both max dose. I've an appointment with my GI in three weeks and I'm petrified of him just stopping everything even though try have seen the inflammation now but still paranoid. But I have to be honest with him and tell him things aren't working. Does anyone know what would come next on IBD treatment scale? Also bloods are terrible low potassium, vit b12 etc but no inflammation showing in my bloods! Now I'm diagnosed feeling equally lost and sick :/
Seems to be a lot of new posts and new people to this blog-welcome everyone and I hope this forum gives you as much help as it has for me. I literally couldn't have got through my life without this forum.
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Hi Gabi, I am Rose! I am sorry you are feeling so crapped. I am too right now and stress at home doesn'yt help. I have to work longer hours this week and am not looking forward to it. I hope I can sleep good tonight and wake up on time. If you ever need a friend you can message me.:)
 
RosaleeMae said:
Hi Moogle, I'm glad you are having a good weekend. I had painful bowel movements for two days because I took diahrea medicine and I am not kidding, it blocked me up so my BM was so huge (sorry), I had to push and push tol get it out. I never had it that bad before. Now today, I had gas and pain and diahrea for hours. I can't win. Is anyone else that way?
Also I was wondering if anyone gets stomach pain from taking antidepressants? I seem to get sick everyday after I take my morning pills and I know that it isn't any of the others because I have been on them for years. the antidepressant is fairly new. Thanks for your help.
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I gave up with loperamide/imodium for that reason. I used to take one 'instants' tab and I wouldn't go for days. It was almost as irritating as having the diarrhoea so I'm now taking codeine to stop it and it's working well if I take it regularly enough. If I wake up in the morning and have d, if I take a dihydrocodeine it will stop it for long enough for me to get through a shift at work, but doesn't constipate you unless you take too much.

I have been on a lot of antidepressants in my time (was misdiagnosed as anxiety/depression) both tricyclic and SSRIs but I've never been sick. But then I'm not a sicky person, I don't vomit easily.

Gabi said:
Hi guys
I hope you are all well. Sorry I haven't been on still not feeling any better and I've been put on pentasa and budesonide both max dose. I've an appointment with my GI in three weeks and I'm petrified of him just stopping everything even though try have seen the inflammation now but still paranoid. But I have to be honest with him and tell him things aren't working. Does anyone know what would come next on IBD treatment scale? Also bloods are terrible low potassium, vit b12 etc but no inflammation showing in my bloods! Now I'm diagnosed feeling equally lost and sick :/
Seems to be a lot of new posts and new people to this blog-welcome everyone and I hope this forum gives you as much help as it has for me. I literally couldn't have got through my life without this forum.
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Gabi what do you mean they have seen the inflammation now? Have I totally missed something?

Next I think would be an immunosuppressant like azathioprine, sulfasalazine, methotrexate... But it all depends where the inflammation is etc. Aza is most common I think. I would hope they might try pred? There was a cochrane review that showed azathioprine can't induce remission but does maintain it. It is no more effective for inducing remission than placebo, but effective at maintaining it once you are in it... So you need a steroid or something to get you there first.

http://summaries.cochrane.org/CD000...ne-for-the-treatment-of-active-crohns-disease

BureaucraticNightmare said:
I see a lot of people feeling overwhelmed and frustrated about feeling sick and not being able to figure out why. It's enough to make anyone wonder if they're going insane. But when you have an underlying mental illness like I do, it's especially problematic -- because second-guessing my doctor becomes the only way to avoid second-guessing my own sanity.

UGH. I feel like all I ever do is vent here.
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Or you get misdiagnosed with a psychological problem because your GI can't figure it out, like what happened to me. One of the most damaging things to ever happen to me. Spent a year a nervous wreck thinking I was causing these horrible problems, I couldn't understand it, there was no pattern, no trigger that I could see. I was paying top dollar for a psychologist who 10 months later turned round and said there's nothing wrong with you, any anxiety you are experiencing is secondary to the level of pain you're in. She called my doctors, wrote to them, and pretty much told them to get their finger out. I owe her my life for realising this. I'm still so angry this happened as it's now on my record, and now doctors treat me totally differently.
 
lsgs said:
Or you get misdiagnosed with a psychological problem because your GI can't figure it out, like what happened to me. One of the most damaging things to ever happen to me. Spent a year a nervous wreck thinking I was causing these horrible problems, I couldn't understand it, there was no pattern, no trigger that I could see. I was paying top dollar for a psychologist who 10 months later turned round and said there's nothing wrong with you, any anxiety you are experiencing is secondary to the level of pain you're in. She called my doctors, wrote to them, and pretty much told them to get their finger out. I owe her my life for realising this. I'm still so angry this happened as it's now on my record, and now doctors treat me totally differently.
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I think this can happen a lot. My gp keeps hinting at it but I know I am not depressed, it's frustrating to feel that he is thinking my pain is a physical presentation of depression. I agree that it appears when they don't know what's wrong they slap the depressed label on, it happened to my sister with her g. She's a nurse so got a Dr in work to test for diabetes cos she recognized the signs and sure enough that's what was wrong, but like you she found it very hard.

How is everyone else today?
 
RosaleeMae - I went through the exact same thing last month. I was trying immodium and questran. Even half the dose made be blocked up for 3-5 days. It didn't feel good. I also tried Celexa for depression back in August and it bothered my stomach. I think I had D more when I took it. Now I'm taking a low dose of Amitriptyline which is helping with sleep and doesn't bother my stomach. I stopped using the immodium and questran last week and that's the main reason I'm feeling better. For whatever reason, my loose bms have gotten better now. I hope it continues.

BureaucraticNightmare - I have had anxiety and depression all my life and my mother has schizophrenia. I felt like you do when I was told I had IBS. I wanted to fight my doctors about the depression thing. Now I have learned more about how stress and anxiety can affect the body. It's probably the number one killer in our society. For example, stress can affect our healthy bacteria in our gut which is essential for our immune system and overall digestion. I'm pretty sure that my bacteria is messed up due to anxiety, chronic stress, diet choices I used to make, antibiotics, and food poisoning.

I'm not saying to give up on finding out your diagnosis with the doctors. Please consider ways to relieve stress and anxiety in your life in the meantime. Even the worrying about your condition will exacerbate the symptoms. Sorry about rambling. I don't mean to preach. :) I feel your pain and hope you get the right diagnosis and treatment.

lizbeth - I'm doing OK today. I may go visit a friend. My plans are to look for assisted living for my mom. The weather is still nice so I will probably do something outdoors (take a walk, ride my bike, shoot some basketball).
 
Chickadee -- yeah! I even wrote back and I think I logged out before hitting submit. Is the doctor you mentioned still working for you? I'm actively searching for a new physician, and I like the idea of a place that takes a cross-disciplinary approach to medicine.

lsgs -- WOW. I'm really sorry you had to go through that. Seriously. I know how a psychiatric dx can be a scarlet letter on a medical history. For every medical professional who takes the time to look past the label, there's half a dozen or more who seem to dump every possible mental illness into one big-bucket of crazy. Worse, they treat everyone in that bucket the same way -- overlooking the reality that a) mental health problems often occur secondary to physical problems, and b) different psychological issues have radically different implications in terms of the way someone experiences and communicates physical symptoms -- whether those symptoms have anything to do with the fact that they take crazy pills or not.

It's something of a relief to see others have been given a similar "honey, it's in your head" line, though I'm sorry it happens at all. I'm really glad you got a p-doc who could validate your sanity! I doubt it's a coincidence that the qualified assessors of mental health in my life unanimously agree that NO, in this case, I'm not crazy. Something is physically wrong.

lizbeth -- I hate it when doctors who can't even remember whether I'm on an antidepressant try and imply depression's the problem! Seriously. (Dude. I'm on antidepressants. I think I'm pretty friggin' good at knowing when I feel depressed!)

I'm still learning not to dismiss my instincts when it seems wrong to take "you're depressed" for an answer. If a doctor implies anxiety or depression may be to blame, I've learned to push for recommendations. (IE: Should I consult my psychiatrist, and what symptoms should I tell him you observed that suggest this might be mental health related?) Typically, when I politely push back, I get something of a shoulder shrug and a tacit admission that "ok, so maybe it isn't in your head, but we don't know what it is."

I'm off to what might be my last day of work for a while. Countdown to US government shutdown: t-minus ~15.5 hours and counting. Sigh. I'm not sure what's the bigger mess right now: my body, or the government I work for. Hahaha.
 
Moogle -- Oh yeah -- no worries, you're not preaching! (At worst, you're preaching to the choir.) I absolutely believe my mental health affects my physical health. The reason I'm a bit skeptical is that mentally, aside from the toll occasionally feeling sick has had on me, I'm in the best place I've been since ... I don't know, puberty? So unless there's some very deeply buried tumult under the surface, it's hard understand why my body feels lousy when my brain actually feels pretty good.

The only reason I haven't written of this GI is because he's been able to offer constructive advice and perspective about the mind/gut connection with IBS. I still think there's more to it than that, but I should admit, I'm satisfied the level of detail he's gone into and the steps he's taken to make sure I'm looking in what he believes to be the right places for symptom relief.

I don't know. All I know is I used to have nasty IBS, and it all but vanished for two years when I started taking Prozac. Gut problems came back about a year ago with pretty different symptoms, so it feels like something else is afoot. When I had IBS, I used to be able know EXACTLY when and why I'd have problems. Now? Not really.

I'm actually coming to terms with the IBS thing :). Of course, every time I say that, something weird happens and I'm flummoxed all over again. Womp womp!
 
Hello everyone, I hope you are all doing ok and that no one is having a really bad day. I have been reading through all your latest posts and as I am totally new to all these gastro problems/investigations/medications etc....I wanted to ask - how bad can IBS get? I am worried that when I get my Fecal Calprotectin results this week it's not going to show any inflammation and my Gastro Dr is going to say its "just IBS" and then dump me and move me back to my GP. Up until now he has been very good, but if each test comes back negative, he is bound to give up! I know how bad I have felt and it has put me in hospital twice....can IBS be this bad? The first time was 2 years ago when they thought I had appendicitis and I was in so much pain I thought I was really for it. It turns out I never had appendicitis at all, and that it could have been my first bad flare. Can IBS be that bad?
About 5 months ago my fecal calprotectin came back as 249 (which is high my Dr said) and surely I wouldn't get this score for IBS?
Thank you for listening and maybe offering help. I'm in a lot of pain today. Amitriptyline isn't helping and thinking about all of the above is really getting me down.
:(
 
Bureaucratic, yeah, it's amazing how much the brain and body are tied together! My parents really dropped the ball with me when I was a kid, as a baby I used to pull my hair out (a quick google search says that's a "classic" early sign of OCD), and there's a lot of OCD in my family. My dad is a hoarder and a control freak, and my grandma is a hoarder and a hand-washer. But they never got me checked out for OCD. I fortunately am not too bad, I recognize certain behaviors and try to correct them. I try not to hoard - I purge my closets regularly - I try not to handwash too much, and I try to be laid-back but okay yeah I'm mostly a control freak. :p It's hard to figure out what parts of me are OCD and what are the potential Asperger's. I know Aspies don't like change and really like routine, but for me that could be OCD talking too. And once again, my parents dropped the ball with the Asperger's - I was a really smart child but had no social skills and other kids thought I was "weird." (High intelligence and low social skills are halllmark traits of Asperger's.) I have a really hard time with eye contact, I'm terrible at meeting new people and I find it really difficult to make friends. I'm super awkward and it all points to Asperger's! I had taken an online test awhile back and the results said I most likely am an Aspie (I know online tests aren't the most accurate of course). But it was interesting, the test asked questions like, do you hate tags in your clothing? Oh my, I hate tags with a fiery passion! I cut them out as much as I can, I'd rather have a hole in my shirt than have a little bit of tag because I can feel it and it really bothers me. And apparently hating tags is common for both Aspies and autistics, it's a sensory thing. I have some other sensory issues too, like I can't have the car heater on high when the stereo is playing above a certain volume - there's just too much sound and it spazzes my brain out. And as a kid, I would freak out crying and screaming when the vaccuum cleaner was on. I don't even really remember, but my mom said she'd have to take me in another room and close the door and comfort me while my dad vaccuumed in a different room. So yeah, I definitely had issues! And my parents never even thought to have it looked into, so now as an adult I'm trying to figure it all out. And yeah, not only are bowel problems common with Asperger's/autism, but there's a family connection there too. I have a cousin with autism and he has digestive issues like crazy with tons of dietary restrictions. And I've read that autism likely can run in families (there's still so much they don't know about autism, and more recently they're saying that Asperger's isn't part of the autism spectrum, so I don't know if my cousin's autism is related to my potential Asperger's).

Sorry, that was way too long! Oh Bureaucratic, sorry to hear you may be affected by the govt shutdown! :( Sometimes this country is just ridiculous and this is one of those times. I hope they don't shut down, or if they do, I hope it's for a very short time and doesn't affect your job too adversely. Hang in there!

Chickadee, I don't know much about mastocytic enterocolitis, but I do think it's definitely worth asking your doc (and maybe a second opinion doc?) about. And absolutely worth giving the medication a try too.

lsgs, going back to what you said about sjogren's causing awful reflux - that sounds a LOT like my reflux. I reflux all the time, but like you said, it's not really acid so much. It's "stuff" coming up my throat but I rarely get heartburn. I can reflux up plain water. I often reflux just from bending over forward - I feel "stuff" pouring up my throat sometimes when I do bend over. I'm on Nexium, a quadruple dose of Zantac, and Tums as needed, and that just barely keeps things at bay. I have a hiatal hernia, which might account for some of the reflux, but my GI says the hernia is "small and sliding" and should not be causing such severe GERD - so why my GERD is so severe is still mostly a mystery. So I'm wondering, how did you get diagnosed with sjogren's, and what other symptoms does it give you besides reflux? And does what I described sound like your reflux?

I also have a question for the women who have had steroid injections, whether for IBD or for arthritis or whatever. Did it mess with your menstrual cycle? Here's the backstory - I'm on nuvaring. I was instructed to insert a new ring on the 1st of every month, and take it out on the 25th of each month. I usually get my period around the 27th or 28th of the month. Well, I got the steroid shot on the 26th, and I haven't had my period yet! I am pretty sure I'm not preggo, and when I googled, it sounded to me like steroid injections can indeed mess with menses. But from my googling, it sounded like most women experienced more bleeding, spotting, breakthrough bleeding, etc rather than skipping a period. But a few did say they stopped bleeding altogether for awhile, so I'm not too concerned. Just wondering if this has happened to anyone else here? If so, how long did it take for your period to come back?

Other than that, I think the steroid shot is doing me a lot of good. My hip feels somewhat better but not perfect. My guts are great though! The d is gone, I'm having totally normal poos and I feel quite well in the tummy! I had an ice cream sundae last night and it didn't give me any trouble at all. So then, I must have been in a mild flare, right? There must have been inflammation somewhere in my guts that the steroid shot blitzed. I believe lsgs said the steroid shot made you feel better for a few months? If I start feeling poorly again in a few months' time then I think I'm going to ask my GI if I can go back on Entocort. But hopefully the steroids have kicked things back into remission - here's hoping anyway! :)
 
Hi guys ,
Hope you are all well or as well as you can be. My colonoscopy is Wednesday so started the awful no food thing this afternoon, already feel sick like i do if I don't eat every hour nonidea how ill get all the prep down Tomo :-( got my baby wipes at the ready ha ha. I have mixed feelings about the test Afyer 4 years of hell I hope they find something but would also be upset at the same time. Does anyone get nausea? Daily? Indigestion from all food ? Lots of gas, loud bowel sounds and a lump in there lower right side? And joint pain?
Really appreciate any answers xx
 
Ali t, yep, yep, yep! I get nausea, joint pains, gas, indigestion, crazy sounds coming from my tummy, I get pain in the lower-right but no lump for me personally. We're all a little different though so we all get a bit different symptoms. I also get diarrhea, mucus, ocassionally blood, migraines, weight loss, dizziness, fatigue, depression, and just generally feeling like garbage. The symptoms you describe sound like they could be IBD, and I hope the colonoscopy gives you some answers for sure.

When you say you feel sick from not eating, are you talking about nausea? Can you contact your GP and ask for some anti-nausea tablets such as Zofran? Or if you have a heating pad or hot water bottle, put that on your tummy and it should help you feel somewhat better. I've done prep 3 times now, and I always try to make things as relaxing and comfortable as possible for myself. I put on my fuzzy socks, my favorite slippers, my most comfortable sweat pants. I get out my fleece blanket and I have my teddy bear, and I light some scented candles and put on either a funny movie or relaxing music to distract me. I find that's really helpful, to make myself feel as good as possible during an icky experience. Find little ways to pamper yourself - you can paint your toenails while on the toilet, you can take a nice bubble bath in between toilet trips, etc. Be really nice to yourself for the next 24 hours and hopefully everything will go as smoothly as it can. Good luck hun, hang in there and hopefully it'll be over before you know it!
 
Aww cat your lovely thank you. Yes I suffer horrendous nausea if I don't eat and nausea when I do with awful indigestion and cramps. I have low b12 and iron too. I just hope something gets picked up as I can't gonin feeling this sick forever. I am on anti sickness but they aren't that good to be honest. I'm going to get up early and make my first prep and put it in the fridge before I have to drink it. I've down loaded some films and going to stay in the spare room next to the toilet :) I have a lot if mucus but no blood I don't get D much either but inhale read some crohns patients don't and suffer with nausea etc so i guess it effects people differently xx
 
Yes, it definitely affects everyone a little differently - that's one of the reasons it can be hard to diagnose, because not all of us fit the "textbook" symptoms. Some people get diarrhea, others get constipation, a few don't even experience any change in toilet habits. Most people don't vomit but some do. In my case, I get a lot of nausea but very rarely vomit. Some people lose weight and others don't, a few people even gain weight. So yeah, we're all a bit different.

What anti-nausea medication are you on? You might want to ask about trying a different one. When I first got sick, they had me try an anti-nausea med called Compazine. It was awful, it did nothing for my nausea, it made me really dizzy, and it constricted my breathing and made me feel like I couldn't breathe (I guess I had an allergic reaction to it?). It made me feel a lot worse! Then they had me try Zofran, which works much better - it works really well for my nausea, and it doesn't give me weird side effects. So even if one anti-nausea med didn't work for you, that doesn't mean they all won't work. See about giving another one a try.
 
It begins with P I can't remember the name I tried zofran in hosp the other month when they thought this lump was a hernia, they just found adhesions but unsure why but the anti sickness worked a treat . I was told by my consultant it's not good long term!!!! Neither is nausea. Can the nausea be relieved if it was crohns and got treated?
 
Is it Prochlorperazine? That's the generic name for Compazine. If it's that, then I'm not surprised that it isn't working for you, it doesn't seem to be a very good med. I'm not sure why they told you Zofran isn't good long-term, I've been told it's fine to take as-needed - perhaps consider getting a second opinion on that. Was it your GI or your GP who said it's not good to take long-term? Ask them their reasoning behind that, and then maybe ask the other doc about prescribing it for you if the reasoning isn't solid. Like I said, I take Zofran fairly often and I've never had any issue with it. If I take a lot of it, in conjunction with my other meds, then it can constipate me a little bit. But even that's not too bad.

Yes, if you get your illness under control and into remission, you should feel much better all around and the nausea should go away. I was in remission for about 2 years and I had very little nausea during that time, for the most part I felt about 99% well. Now I'm in a mild flare and I do have some nausea, especially in the mornings. I'm hoping to get back into remission soon. I hope you can get into remission too!
 
That's the name yes. I've been in a few in my time but some move food through stomach quicker and I already have that problem with my upper stomach . I will definitely ask that question for sure as I felt no nausea at all in zofran. The horrid hunger pangs are starting now :-( think I might go to bed and try and sleep before tomorrow's events . I have a phobia of vomiting which makes this whole illness even worse as its like facing my gear everyday . How were you Afyer the colonoscopy did you have sedation?
 
Ali t-- Is it Phenergan? That works okay for me for nausea, but I find it extremely sedating. I also have Zofran, but I take it very sparingly, only if I'm really getting to the point where I think I'm going to vomit. I had to take one during my prep for my colonoscopy or I wouldn't have been able to keep the prep down. I don't know if it's harmful to take all the time, but I like being able to take it when I really need it.

BR-- Yes, that dr is my primary care, and he has worked out well in that role.

Cat-- I am trying to follow up with my doctor, but it's so hard to get a response. I'm trying to find out if there are any doctors in the area who are more familiar with Mastocytic Enterocolitis, but it's such a new diagnosis that there are not any lists of practitioners (that I can find anyways). Regarding your question, I had a steroid injection once, and I don't think it affected my menstrual cycle.
 
Ali T - after the sedation you feel a bit woozy and sleepy, but the quicker you get up and walk around the quicker it wears off. The nurse said I went a bit cross eyed so she left me for about 10 minutes on the bed in the recovery bit, then she sort of persuaded me out of bed and after a sugary cup of tea I was fine and left the hospital with my other half. Was really sleepy for the rest of the day and my stomach was slightly tender, but really nothing serious. It was a couple of months ago now and I hardly remember anything about the procedure itself. Sending best wishes your way and don't worry, it really isn't as bad as you think it's going to be! :)
 

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