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Izzie, I was on 80 mg Nexium for a short while. It did a good job of controlling my reflux, but it was too good! It messed with my pH levels so much that I became unable to break down the other meds that I was on (at that time, Asacol, which was my IBD maintenance med at the time). So yeah, I only went down to 40 mg of Nexium because that's the dose where I can still break down my other meds but the reflux is also pretty well controlled. I hope you do well at the 80 mg!

As for me, my cold came back with a vengeance last night and today. Very sore throat and screwy sinuses, and I just feel drained and bleh. I stayed home sick from work today. Hubby picked me up some ramen for dinner, and I've had some tea with honey, both of which seemed to help a bit, and I've just been resting. I just hate that, when you feel like you're mostly over a cold/virus and then wham, it hits you with a second round that's stronger than the first! Not cool, cold. My immune system was not prepared for any of that.
 
Cat-a-Tonic said:
Izzie, I was on 80 mg Nexium for a short while. It did a good job of controlling my reflux, but it was too good! It messed with my pH levels so much that I became unable to break down the other meds that I was on (at that time, Asacol, which was my IBD maintenance med at the time). So yeah, I only went down to 40 mg of Nexium because that's the dose where I can still break down my other meds but the reflux is also pretty well controlled. I hope you do well at the 80 mg!

As for me, my cold came back with a vengeance last night and today. Very sore throat and screwy sinuses, and I just feel drained and bleh. I stayed home sick from work today. Hubby picked me up some ramen for dinner, and I've had some tea with honey, both of which seemed to help a bit, and I've just been resting. I just hate that, when you feel like you're mostly over a cold/virus and then wham, it hits you with a second round that's stronger than the first! Not cool, cold. My immune system was not prepared for any of that.
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Yeah I might start at 40 depends on what the GI says. I'd like to still be able to absorb some nutrients, maybe :p

Boo for the cold! That sucks, hopefully it'll pass quickly.
 
It is kind of awesome in a way to go to work with a bad cold. I'm coughing, hacking, sniffling, sneezing at my desk and everybody is keeping well away from me. Nobody comes by to ask for your help on a project when you sound awful and contagious. :p It's kind of nice. I wish I could rest all weekend, but I'm supposed to go to a baby shower tomorrow. If I'm still sick though I won't go. It's my cousin who is pregnant and I don't want to give her a cold when she's 8+ months pregnant. So if I'm still sick I hopefully will be able to rest all weekend - I'll just need to figure out how to get my gift to her (she lives a 90 minute drive away from where I live).
 
Haha I admire your positive outlook, Cat :)

I'm spending the day cleaning up at home before leaving on a little mini vacay to visit family back in my hometown. I'm hoping for peace and quiet and a lot of dog walks.

And next week I will not give up until have a new medication to try.

I'm starting summer classes in about a month, which I'm excited about. I've had sporadic work this spring, but nothing really consistent, and it's been messing with my schedule and making it difficult to maintain routines. I'm hoping to use summer classes as a kind of practice run before the fall where I will really have to be focused if I'm going to start the program I'm hoping for.

I'm trying to figure out how to approach student life with dietary restrictions, not drinking etc. I want to still be able to participate and have some kind of a social life. So far I've just kind of gone along with stuff (not often) and then I've been miserable for it. I've been nervous to really own the label of being a non-drinker, it seems kinda nerdy :p Same in restaurants and such. There's always the option of actually talking to the chef and being like hi I have dietary restrictions please help. But I'm always so embarrassed by it so I don't, and eat like... spicy Indian food and then feel terrible for a week :p
 
It's okay to be a non-drinker! You might have to initiate activities with your friends that don't involve drinking (board games? Painting night? Bad movie night where you have to fully appreciate the badness of the movie by staying sober the entire time?). And yes, absolutely talk to the chef! Do not be embarrassed. I request modifications to meals all the time and I've never had any trouble or embarrassment because of that - if you have issues where you're going to be physically ill by eating certain things, the chef would like to know that! I promise. I know several chefs (my hubby is going to be a chef in a few weeks himself) and believe me, they want to make your meal something that you enjoy, not something that you regret. Bottom line, take care of your own needs and don't worry what others might think of you. Don't apologize for it and definitely don't stay quiet and just eat whatever is going to make you ill for days, that's not acceptable. Speak up for yourself! Be empowered! You can do it! :)

It's also okay to say no to your friends. "Hey Izzie, we're going out drinking and then we're going to eat horrible food! Come with us!" Your line would be something along the lines of: "Gosh, I'd love to, but I can't - I have to study/work/get up early tomorrow for work/already have other plans/just can't." Repeat as necessary. Be firm but kind, don't let them talk you into doing things that aren't going to be good for you. If all they want to do is drink and eat horrible food, then possibly you might want to look into expanding your circle of friends to involve non-drinkers.
 
You're so right Cat!

Thankfully my closest friend has always been a non-drinker, so I have someone to hang with, at least.

Sweden has a very strange alcohol culture. Drinking is kind of what people do, socially. And I don't mind being around when other people drink, I used to enjoy a good party and probably still would, but people get weird when you don't drink here.
 
Here in my particular state, Wisconsin, alcohol is known as being our official state pastime. :p We watch football (American football, specifically the Green Bay Packers) and drink, that's basically what we do here. Comedians from all over have made jokes about it - if you're familiar with Lewis Black, he once came here and said that it's literally cheaper for him to fly here and drink, even with the airfare and hotel room, than it is to drink in New York City. He said we're way too hardcore drinkers for him though. He also compared our drinking habits here to being like the Olympics because of how seriously we "train". So yeah, we've got just a bit of a drinking culture here too! :p I still don't let it bother me, I've always been a bit of an oddball anyway so I just embrace being different. (For the record, I am not completely weird, I do watch football - go Packers!)
 
Just so you guys know, I'm going to be away from the forum for a bit. My grandpa died this morning and I have to spend some time dealing with that stuff. I'll talk to you guys later. Hugs to everybody!
 
So today my GI called and for the first time in a year and a half since this started I've had an actual conversation with a doctor who has black and white proof that there's something wrong and thus actually believes me.

It feels SO nice!!

Starting new medication today, another gastroscopy planned, follow-up meeting in 2-3 weeks. They're not going to let me feel like this and not get help anymore and I am so relieved I don't even know what to do with myself.
 
Cat, I'm so sorry for your loss. Life is already hard right now, so you definitely didn't need anything to make it even worse. I'll be thinking about you!

Izzie, isn't that the best feeling?! I recently found a doctor who I think actually believes me. She even apologizes to me a lot, and has told me that if there are any medications that I want to try, then she will prescribe them to me. I can tell she actually feels bad for me, which is much more than I can say about any other doctors I've seen. But if you think about it......that's SO messed up!! There shouldn't be doctors who don't believe us! Do they think we want to do horrible tests and procedures and pay a bunch of money just for the heck of it?! It doesn't make any sense. It makes me so mad when I think about the way some doctors have treated me. And I know I'm not the only one! I really hope this doctor will be able to help you, and I'm so glad your test results finally show proof that there's something wrong!
 
Cat, soooooo sorry about your loss. I hope things are settling down for you.
Izzie, AK (and all) isn't it sad that we get happy when a doctor tells us there is something wrong, all because we haven't been taken seriously before (and we know something is wrong?)
I had some blood clots with my stool yesterday, something I haven't had happen before. I've had blood with my hemorrhoids many times, but never in the form of clots. Does anyone know if that can happen with just hemmies?
 
Sandy - It really is sad! Ideally every doctor should take their patients seriously. I'm not demanding that every doctor I meet is going to agree with everything I say and think about the problem, I'm not the one with the degree after all, but I expect them to believe me when I say I have a problem, not doubt the severity of it, and not quit if they can't immediately find something.

My new meds seem to be working! It's not perfect but I'm much better and this is only my second day taking them. I'm not sure how the rest of my system are liking them though, a lot of stomach rumbling and some crampy pains. I didn't have IBS before but maybe these pills will make it happen :p

My throat feels super strange, I'm hoping it's a healing thing. I'm so used to feeling like I have hot lava in my chest and throat that not feeling it as much is strange :p

My swallowing problem is really quite an issue for me in daily life. I don't know if there's anything one can do to improve esophageal motility? Is it possible for it to improve as damage heals maybe? Anything dough-y takes forever to go down and gets stuck and just feels really icky. Same with rice - really hard to get down. I have to drink a ton of water with every meal and ideally walk around for a bit after to let gravity do its thing.

I'm such a worryer I keep thinking what if it gets worse? What if I have terrible damage to my esophagus? Even with the meds possibly working now I start thinking about side effects, long term effects, etc. etc.

It's so dumb I can never just relax and take things as they are. I mean I wouldn't say these thoughts are all-consuming, but they nag at me nonetheless.
 
Izzie,
There are specialized clinics for people with swallowing problems. Ask to be referred to one so you can get some help with this issue. Many people have swallowing problems and there are Occupational Therapists, Physical Therapists, and Speech-Language Pathologists with specialized training who work at these clinics. You just need to get to the correct clinic. Good luck.
 
Izzie, yes it is possible to improve as damage heals, but what helped me with swallowing most was having my esophagus stretched during my last endoscopy (gastroscopy). Actually, healing might help as much in the long run, but that immediate improvement was sooooo nice. I still have issues and still have to take the highest dose of Omeprazole allowed per day, but my Gerd was so bad without that dose I ended up with esophagitis and gastritis (gastritis is something I never want to go thru again). Previous endoscopy had them testing me for Barrett's esophagus, which thankfully came back negative. I've also had other swallowing studies done, or videofluoroscopy, which it sounds like might be something that can show your doc where your swallowing difficulties are and they can go from there. Of course, you would have to get your doc agree to this test . But yes, healing does help the swallowing in the long run. And not swallowing properly can create other problems.
 
My manometry showed some real issues in the lower half of my esophagus - there's hardly any muscular activity going on down there - but I'm having a gastroscopy again soon to check for Barrett's, and to see if there's any scar tissue or other damage. Really really worried about possible Barrett's, but I've heard only a very small percentage of cases ever leads to cancer anyway so I'm trying to stay calm :p They were unsure as to whether my poor swallowing has always been a problem or if it could be caused by the GERD. I think it's the latter since I can't remember noticing a problem before...

I'm really not that into the idea of taking meds for the rest of my life since I'm so young, so if there's anything that could improve my swallowing enough to make me a candidate for surgery down the line then I'm all for it.

And yeah they suspect that I have had a bout of gastritis recently. Anything I eat it's just a burning, painful mess. Feels like a knife going through my chest to my back it's terrible. Seems to be improving rapidly on Nexium though.

It's strange because I had a barium swallow like 9 months ago and it showed nothing. Shouldn't swallowing problems show up on one of those? Maybe I just didn't have a lot of damage yet then. Who knows. I'm glad things are moving forward though.
 
Cat, I hope you're doing well.

Izzie, I know that feeling of being listened to! I hope you get further answers and can heal.

Right now I'm holding for my GI's office because after all these recent months of cdiff and D, I'm constipated.
 
Well I waited too late in the day (was afraid of that) GI is already gone and will get the message tomorrow. His nurse suggested I could try a dose of Miralax if I was too uncomfortable.

It's so strange to be bloated and "full" after going 7-10 times most days.

And nothing has changed. My diet is stable and boring, my meds are stable, I make sure to drink enough water...I can't figure out what happened.
 
SandyUte - I never responded about your bloodclot issue! Sorry! Of course now all I can say is - I don't know :-/ I think the blood would have to have been around awhile to have formed a clot, though? Not much help.

I ended up using Miralax, and was able to have a fairly large but soft movement before bed that left blood on the tp (a return of my old fissure? it does hurt, so I think so)...and then again at 1:30am :( So now I'm tired, but at least less bloated.
 
So I'm a few days into taking Nexium and so far... meh?

If I'm suuuuuper ridiculously cautious with food, it's better. If I'm not (and I'm not talking a wild food binge here, I'm talking like... something with a tiny amount of cheese on it or any drink that isn't water) everything goes to hell pretty quickly, and I'm suddenly getting weird crampy pains and I feel bloated and pretty miserable.

I'm a little bummed but I'm trying to wait it out, it can probably take a week or two for it to really kick in fully and for the body to get used to it. Still, I'm only cautiously optimistic and trying hard not to worry what will happen if it doesn't work long-term...
 
Cautious with food and drink is all too familiar, I think for most of us here unfortunately. At least with my bout with gastritis (and a possible side of partial bowel obstruction) it got me to quit my habit of diet coke, something I had been fighting for years. :) Still, it isn't fun. Let us know how things go. :ghug:
Wildmtnhoney, could the blood have been from irritated hemorrhoids? I know I tend to get "raw" in that area after things like what you have been through, and bleed a little. Speaking of which, no more blood clots for me, so I'm going to attribute it to some anomaly and hope it doesn't happen again. For now I will just give a sigh of relief. Yay!
 
It's an adjustment! Especially since food and drinking is such a social thing. It seems to be very hard for people to accept the change. I've just quit my tea habit myself. Harder than quitting coffee for me :p
 
I am SO bummed out today things just keep getting a little worse day by day these meds either haven't kicked in fully or are just not right for me. Some things are better (chest pains aren't as bad) but everything else - the burning, belching, coughing, sore throat etc. is worse. I feel like I'm sick all the time because my throat hurts so bad and I keep coughing and feeling like something's stuck in my throat. My throat literally hurts so bad I can feel it in my ears. For a second I thought I might actually be getting a cold or something but nope, it's just reflux.

I'm upset because it sounded to me like this was what my GI had up her sleeve, I'm not sure she knows what the next step might be and it scares me. I always want to be three steps ahead just in case.

My family, I love them, but they get as desperate as I do when I feel this bad and so end up coming up with outlandish "cures" or alternative diagnoses and it's just not helping me. I appreciate their concern but the discussions are tiring. And then they get upset with me when I'm not interested in the latest tabloid cure they read about.

I'm not in school and I'm not working - haven't been for weeks now because I just feel so bad all the time. I can't sleep at night until I'm exhausted enough to just pass out, and I can't eat much so I'm always hungry and always tired and always in pain and always grumpy and sad and slow.

*sigh*

Sorry for the rant, it's just one of those days.
 
I can relate to so much of what you're going through, Izzie. I'm not working or going to school right now either. I had been in graduate school up until a few weeks ago. I barely finished the spring semester, and I was already signed up for summer and fall classes when I decided that I just couldn't do it anymore. It was getting almost physically impossible to make it, but I also knew that I just really needed to focus on my health. It gives me such anxiety to feel like I'm not doing anything though. I had everything planned out with my schooling, I had a 4.0, and then my health had to ruin it all. I've never not done anything......I've always been in school or working or both, so I don't even know what to do right now. And then people say things to me like, "What are you going to do with your time?" Or "I'm so jealous that you don't have to work or go to school!" And it literally takes all my strength to not blow up on them. Sometimes I try to explain it and sometimes I just smile politely.

Another thing that sucks is that I don't really have that many people that I can really talk/vent to about my health issues. I talk to some people, but I feel like they're tired of hearing about it. Imagine living it!!

And people trying to give advice about the latest trends.......oh gosh. I appreciate the thought, but no. The worst is when people are like, "Have you tried this? What about this? Oh how about this?" And I've already tried them all. But the worst thing that anyone can say to me regarding my health issues is: Think positively!!
Yeah, you try thinking positively when you've been sick every single day for 2 1/2 years, done everything the doctors have told you to do, spent thousands of dollars on pointless tests and treatments, and are actually worse than when this all started.

Anyway, how's everyone else doing? I hope everyone managed to have a decent (or hopefully great!) weekend.
 
akgirl, yeah I don't know why people think it's a good thing to stay home because you're too sick to do anything. Being at home gets old after a week or so in my opinion...
 
I'm here. We had my grandfather's funeral yesterday and I'm trying to get back to some sort of normal today. I was off work all last week but I'm back at work this week. My guts aren't super happy but I'm not bleeding out my ass (yet) so I guess it's not too bad. I just sort of feel like I'm in a fog, kind of like the past 9 days or so have been just a bad dream. I don't think I've quite left the "denial" stage of grief yet. I've kind of got one foot in denial and one foot in depression. It's not a great place to be. Everything just feels weird. It's hard to describe. So yeah, I'm here but not really myself at the moment.
 
Again, so sorry for your loss Cat. I was at a funeral of a close elderly relative just last week so I know how unreal things can feel. Let yourself feel the way you feel and gradually things will get easier. Hoping your illness will at least give you a break so that you can rest and recover well.


For me, I gotta say I'm loving this being diagnosed thing. At least partially diagnosed. Called today because the Nexium hasn't done much good and I've lost an pretty decent amount of weight in the past week. There was NO second-guessing, no blame being put on me for being whiny - just got a new prescription. Pantoprazole this time. Here's hoping!

She did also say that she's not sure what she'll do if this doesn't work either, which stressed me out but I think she was just thinking out loud. I know they're very reluctant to go the surgical route since I have such trouble swallowing and I understand that.

Also in the past week I've had a lot of lower abdominal cramping and been having to go to the bathroom 10+ times a day, which happens sometimes but it was a while ago. Here's hoping it was a side effect and not some new weird flare-up.

Having a pretty shit day health-wise but mentally I feel much better knowing that I have medical professionals ON MY SIDE for a change. It doesn't feel like such an impossible uphill battle anymore.
 
Hi guys!

Just been reading through the last couple of pages and sorry to hear you're all not that improved-also Cat very sorry to hear about your loss.

I always consider myself v medical knowledge based but its seems a lot of you here are more so than me so i was wondering if you might be able to let me know the answer to this question. I keep having the intermittent bleeding and im 90% sure its a fissure because i can see it even though my doctor said she couldn't. Anyway for the last 2 weeks i havent been feeling great, upset tummy and generally feeling under the weather...anyway yesterday the bleeding came back so i used an anusol suppository (the one with a mild steroid) and today i feel a lot better in general-my question is: can the mild steroid found in the suppository help with my general overall better feeling, like no tummy pain and no pale/run down ill feeling? I can't seem to find much about it online except that it really only helps with rectal stuff but i know people with crohns are given steroids and they help so just thinking it might have absorbed into my body or something and helped?

Thanksss
 
Megan, I believe the answer is yes. Most steroids, even if they're topical, can get into your bloodstream at least a little bit. When you get steroids into your bloodstream, the steroids can then go anywhere in your body where there's inflammation. That's the gist of what my GI had told me about steroids anyway. I'm on steroid suppositories myself (I take anucort) and I've noticed similar things, that generally speaking I feel better overall when I'm on the steroid suppositories. I also get some mild versions of the typical steroid side effects (increased appetite and weight, increased energy, not able to sleep as well, etc). The good news is, you don't need to taper off of steroid suppositories the way you would have to with oral steroids, so don't worry too much if you need to take them often or for a stretch of time, and don't worry if you stop them suddenly, you shouldn't have any steroid withdrawal symptoms. They're mainly topical and only a little teeny bit is being absorbed systemically, not enough to cause you issues if you stop and start them (I've been stopping and starting them since March 2015 and haven't had any issues there).
 
Sorry for your loss cat hope you everyone's doing ok and thanks a lot for this group.
I'm new to the crohn's thing I'm undiagnosed but have seen so many similarities it's almost like looking in a mirror.
I'm 27 and have been having symptoms on and off for the past 6 years with the doctors saying there's nothing wrong while being in and out of hospital with all sorts of symptoms. Eventually I was put on Fodmap witch is helping but there's still more going on and only just recently found out about all this, seems so overwhelming.
But to any one who reeds this don't give up I've got from eating what I want when I want to a glass of water giving me huge crippling stomach and vomiting (from time to time). I've since learnt not to challenge my body when it's unhappy I'm just going to loose [emoji1] .
Good luck to everyone hope we all get some answers soon.
 
Cat-a-Tonic said:
Megan, I believe the answer is yes. Most steroids, even if they're topical, can get into your bloodstream at least a little bit. When you get steroids into your bloodstream, the steroids can then go anywhere in your body where there's inflammation. That's the gist of what my GI had told me about steroids anyway. I'm on steroid suppositories myself (I take anucort) and I've noticed similar things, that generally speaking I feel better overall when I'm on the steroid suppositories. I also get some mild versions of the typical steroid side effects (increased appetite and weight, increased energy, not able to sleep as well, etc). The good news is, you don't need to taper off of steroid suppositories the way you would have to with oral steroids, so don't worry too much if you need to take them often or for a stretch of time, and don't worry if you stop them suddenly, you shouldn't have any steroid withdrawal symptoms. They're mainly topical and only a little teeny bit is being absorbed systemically, not enough to cause you issues if you stop and start them (I've been stopping and starting them since March 2015 and haven't had any issues there).
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Thanks for the reply cat, I'm in 2 minds...great if I can then use them if I'm feeling a little under the weather but in the same breath it would mean I've got some inflammation going on which the steroids are clearly targeting which would again take me down the crohns route...so annoying
 
I am so over this whole diagnosis journey. Or maybe for me now it's over, I'm not sure. So on Saturday I received a letter from my gastroenterologist saying that the duodenal biopsy was normal, my SIBO test was normal and the newest blood tests were normal. She has said it is "likely severe IBS" so she will see me at my next appointment and that will be that, just off to the specialist dietician. I honestly just want to give up and don't know where to go next. Maybe I just need to accept the diagnosis, I don't know.

Day to day I think maybe it could just be IBS but then I flare like I did at the end of March and I just feel like there is no way it can be IBS. Like I was the closest I have ever been to going to A&E then, the nausea was so bad I couldn't even drink and the antisickness meds only took the edge off, I certainly couldn't eat more than a biscuit or cracker at a time and even then only a couple a day, the diarrhoea was back to 6-8 times a day usually ending with just water and mucus, I was constantly too warm, my pain was up in the same two spots as usual and I was so exhausted just making a cup of tea was hard work. I guess I just don't see how that can be just IBS, that particular flare lasted about 3 weeks which to me seems way to long to be IBS.

I just feel like the gastroenterologist has given up because I haven't had any obvious great big red flag test results. I feel like I'm just going to have to live like this forever which at 25 is a depressing thought.

Really annoyingly/sadly I've been having niggles with increased pain/nausea/diarrhoea on and off the last couple of weeks and I keep thinking a flare is coming but it doesn't seem to be turning into a full blown flare. I hope this makes sense but at this point I actually kind of want a full blown flare because I will just go to A&E and make them treat me or at least have it recorded that I was there and how poorly I was so I can point it out to the consultant.
 
Dont give up, im sure doctors wont do any thing unless they have to, its always down to money. But during my time in hospital talking to nurses they were saying it depends when you go if anything really stands out or not, not quite sure how true that is being new to this but it kind of makes sense cause if you've healed (for the most part) i guess there's nothing to find. You could well be on to some thing by going when you've got a flair or by making sure you've got one when you go see gastro next, not sure its the best idea though wouldn't be very pleasant.
 
Sarah, I agree, don't give up. If this doctor has given up on you, then request a referral to a new doctor for a second opinion. I've just done that myself, the first colorectal surgeon I saw was very dismissive of me. So I talked to my GI about it and he is referring me to a colorectal surgeon who he claims is the best. I see that new colorectal surgeon next month. There's no shame in getting a second opinion, doctors don't know everything and they're not always right. Sometimes getting a fresh new set of eyes on your case is just the ticket. So don't give up! (Although taking a break for a bit is okay, but don't give up entirely.)
 
So in the past few weeks I've been getting a lot of crampy pains in my lower abdomen, and sometimes a weird burning sensation as well as having to go to the bathroom - false alarm or no - 10+ times daily. This happened when all of this started but later went away and I'm wondering again if this is another problem from the GERD altogether.

It was these kinds of symptoms that led me to believe I might have IBD to begin with.

Never a dull moment in this body of mine :p

So far it seems as if the pantoprazole is working better than the Nexium but it's only been a few days so I'm not taking ANYTHING out in advance. I'm also taking a ton of Gaviscon as per doctor's orders so that's probably doing its bit.

I have been able to perk up a little since the weekend though, I was really really down for a few days there.
 
Izzie, do you have active gastritis right now? Sometimes gastritis attacks seem to screw with my bowels as well. I sometimes get lots of watery, pale d when I'm having a gastritis episode. That can happen even when the IBD is in remission.

How's everybody else today? I'm stressed. The situation with my grandmother is not good. As you guys know, my grandpa died on the 14th of this month. He was very ill physically but he was mostly there mentally (he was starting to have a few memory issues but nothing too bad - physically though he was very ill - in a wheelchair, had heart issues, diabetes, kidney failure, and lots of other stuff). My grandma, his wife, is mostly okay physically but very bad mentally - she has a lot of issues with dementia, we think it's Alzheimer's but aren't sure. She can't remember anything, she forgets to eat, sometimes forgets who family members are, has a lot of inappropriate anger, etc. So my grandma was taking care of my grandpa physically, and he was taking care of her mentally. They both sort of made up for each other's deficits. But now my grandpa is dead and my grandma is on her own and it's bad. She's got a nurse coming in a few days a week to help her, but aside from that she's alone and that's already caused some problems. Apparently yesterday she was wandering around outside at her condo complex, knocking on random strangers' garage doors (not her own), and shouting, "This is my garage, let me in!" Apparently that's not the first time that something like this has happened, but up until now my grandpa was always able to cover for her or whatever (he was a lawyer and then a judge, so he was super good at winning arguments, and I presume he would just argue his way out of whatever situations my grandma got herself into). But my grandpa is no longer around to get her out of this mess. So, now my grandma's condo complex wants to evict her. I'm hoping we can get her into a nursing home because that's really what she needs, she can't function very well on her own as her mind is just gone (there have been moments where she can't even remember if my grandpa is dead or alive, you would think you'd remember something that important). So yeah, that's the latest stressor in the drama of my grandparents. My grandpa died and my grandma is probably being evicted. Not a good time and very stressful.
 
Honestly I don't know if I have gastritis or not. I feel like I might, since this bout of horrible reflux symptoms and pain is just not budging very easily at all. I have a gastroscopy coming up in like a month though so we'll see. It's very strange currently, I'm both constipated and have d every other day it's so strange.

Sorry to hear about your grandmother, it's very like the situation I've been in with my grandparents before they passed. For me, my grandfather had dementia and had violent outbursts and forgot tons of things. At his wife's funeral he kept asking when she was going to show up. It got MUCH much better when he moved into a nursing home and was medicated properly. For him as well. Hopefully your grandmother will be able to go to a good nursing home!
 
It is possible to both be constipated and have d at the same time - apparently what happens is, there's a constipated "plug" of stool, but the d is watery enough to flow around the plug. It's not a fun time, I've experienced the same thing in the past. I hope things improve soon!

I'm sorry to hear you went through something similar with your grandparents but I'm glad to hear that your grandfather improved once he got into a nursing home. And good to know that meds helped him as well. My grandma was supposedly taking medication for her dementia (we're not sure what medication), but she's gotten worse instead of better. So when I was over at her condo recently, my parents tasked me with looking for her pill bottles and getting the name of the med, the name of her doctor, etc. Sooo, I found 2 pill bottles on her kitchen table, they were next to a container of lemon drop candy. And in the pill bottles, there appeared to just be more lemon drop candy. I don't think she ever took the medication, either she never had meds to begin with or she dumped the meds or something, but either way she apparently replaced her meds with candy. So that's really frustrating. But that explains why she didn't improve on the "meds" - I don't think candy is a proven dementia treatment. :p

My grandma doesn't sound to be quite as bad as your grandfather was - she definitely gets angry and fights verbally, but hasn't gotten violent yet. And at the funeral, she definitely knew my grandpa was dead (it was open casket). She did pretty much forget every memory she has of my brother, though. Recently she said something to my brother about how it's too bad that he was never able to show up for xmas or family gatherings ever. And my brother was like, "What are you talking about? I was there!" But she has no memory of him being there for anything, she's just mentally erased my brother somehow. She still usually knows who he is when she sees him now, but even at the funeral, she saw him after he'd been there for awhile and she asked if he just got there. So even as family gatherings are happening, she's already mentally erasing him somehow, it's weird and sad.
 
Hugs to you Cat, this is a rough time! I'm currently volunteering for a secured, assisted living home for dementia patients (I help plan activities). It may be that your grandmother needs something like that, instead of a nursing home? Often, nursing homes involve a lot more care, and if she's just forgetting to eat, but can still feed herself, an assisted living center may be the right fit. The place I help is applewoodourhouse.com and they have a lot of great articles about memory, dementia, etc on their site if you have time.

In me news: a huge victory! I went out last night to see Florence and the Machine and only needed the 'loo twice!! Once early, and once after the opening act - I got to see the whole of Florence!! Of course, I ate early at 3pm and only had drinks from then on, and only "safe" ones (no alcohol!), but it worked! Especially exciting as our seats (we had seats, not on the floor) were in the middle of the row, not fun to get into/out of. Oh, and the tix were a gift from a friend - I took my daughter and two of her teen friends - it was lots of fun :D Now my legs are tired (of course we stood despite having seats) and I still had to get up early to get my youngest off to school, and I'm weirdly hungry/not hungry. I think I'll take it easy today.
 
Thanks for that link, Wildmtn! I will check it out. My grandma still can feed herself, and she seems to still quite enjoy food when she remembers to eat. So many things confuse her, though. Restaurant menus have been baffling to her for awhile now and cooking isn't really happening. Even preparing a simple meal at home seems to be beyond her abilities - she wasn't even able to wash her own dishes when I was over there last week (there wasn't a single clean dish in the place and my uncle ended up washing them all for her). Scarily enough, she's still driving, and I think the majority of what she eats is take-out or drive-thru food. (Believe me, we've looked into taking away her drivers license, but legally we can't unless or until she proves to be a danger to herself or others - meaning, basically she has to get into a crash first before we can take any action, which is an awful thought.) I'm going to visit my grandpa's grave with my parents on Sunday and we will hopefully see my grandma as well that day, so I should have more info then about her getting evicted and what the plan is.

Okay, so I just glanced at your link and looked at the "what is dementia" section, and it's like they wrote it specifically about my grandma. Even the part about, "They also tend to suffer from poor personal hygiene and will neglect their personal health, too." My grandma has just recently started neglecting to bathe regularly. Apparently she didn't/couldn't clean the shower, so she just stopped showering. My aunt came to town for the funeral last week, and she cleaned the shower and made sure my grandma had a shower before the funeral. My grandma has also neglected doing the laundry - I took her dress shopping a few days before the funeral, and I had to help her in the changing room. She was wearing men's briefs, my grandpa's underwear apparently, because she hadn't done the laundry in some time and ran out of clean underwear of her own.

And this sentence that was talking specifically about Alzheimer's: "It is characterized by patients being disorientated of space and time, and they also tend to suffer from memory loss, which can lead to anger and confusion." That also could have been written about my grandma! That is exactly her. When my grandpa died, she made some comment about, "I didn't think one of us would go until at least we were in our 80's." And I had to inform her that grandpa was 84 and she's 83, she was very surprised to learn that she is indeed in her 80's. She definitely doesn't know where in space or time she is, and definitely has a lot of memory loss, anger, and confusion.

Ugh. Anyway. I'm so glad you were able to enjoy a concert! That's fantastic! I think the last concert I went to was back in 2008, before I got sick. Although I have been to a few comedy shows, mostly just local improv groups but we did go to see Kids in the Hall last year and that was a great show, and fortunately I didn't need to use the bathroom except at the intermission (even when my bowels are quiet, I drink a lot of water and I tend to pee about once per hour, so intermissions are necessary!). It's so nice to be able to enjoy a night out without our health issues getting in the way! So happy for you! :)
 
I swear to god this cough I have is going to drive me insane. I'm kind of constantly afraid of aspiration pneumonia and I might not even have any cause to worry about that? But I do. And I cough all the time. Usually after a meal so I can't help but think that something isn't quite right with my swallowing - which, I mean, I know that. But I don't know how bad it is, really.

I am a bit concerned about my possibly studying speech pathology in the fall. It deals with swallowing disorders as well and I don't want to make myself a total hypochondriac :p

Anyways I'm going to my GP on Tuesday, my GI thought I should be checked out for respiratory infections so that I don't have something else going on that's causing the cough. But I'm pretty sure it's the reflux and the nurse I spoke with was pretty sure too.

Meds still aren't really working very well. I'm so fed up with this. I was really hoping they could do surgery so I'd just be done with all this but now that's not really an option.

I'm considering getting a second opinon, not because I don't trust my current GI but reflux surgeries aren't common in my region at all. They hardly do them. I figure if I could get a hold of someone who does them all the time and is an expert, I'd be given a more accurate assessment as to whether or not surgery really is such a terrible idea. I just really do not want to feel like this for the rest of my life.

I think I'm a little depressed. I've been more down about this recently than ever before. I think it's because I've heard my doctor say "there's not much else I can do for you"/"I don't think we have many more options after this" several times and I still feel like crap so the thought of there being no more options is... a downer, to say the least.
 
Izzie said:
I swear to god this cough I have is going to drive me insane. I'm kind of constantly afraid of aspiration pneumonia and I might not even have any cause to worry about that? But I do. And I cough all the time. Usually after a meal so I can't help but think that something isn't quite right with my swallowing - which, I mean, I know that. But I don't know how bad it is, really.

I am a bit concerned about my possibly studying speech pathology in the fall. It deals with swallowing disorders as well and I don't want to make myself a total hypochondriac :p

Anyways I'm going to my GP on Tuesday, my GI thought I should be checked out for respiratory infections so that I don't have something else going on that's causing the cough. But I'm pretty sure it's the reflux and the nurse I spoke with was pretty sure too.

Meds still aren't really working very well. I'm so fed up with this. I was really hoping they could do surgery so I'd just be done with all this but now that's not really an option.

I'm considering getting a second opinon, not because I don't trust my current GI but reflux surgeries aren't common in my region at all. They hardly do them. I figure if I could get a hold of someone who does them all the time and is an expert, I'd be given a more accurate assessment as to whether or not surgery really is such a terrible idea. I just really do not want to feel like this for the rest of my life.

I think I'm a little depressed. I've been more down about this recently than ever before. I think it's because I've heard my doctor say "there's not much else I can do for you"/"I don't think we have many more options after this" several times and I still feel like crap so the thought of there being no more options is... a downer, to say the least.
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My wife coughs on and off from rreflux.
 
Ron - I've heard it's common! And I've had it before but it's never been quite this bad. I'm hoping it will go away once (if) I get the reflux under control. I find it very difficult to sleep when I have a bad cough. Though I do think my anxiety about complications is making me focus on it perhaps more than I need to.
 
Hi everyone reading this, hope you're all doing well.

Yesterday I got a letter in my mailbox from the worst GI clinic in town with a bill for $25 and a pamphlet about "Living Well with Irritable Bowel Syndrome". Turns out Medicaid deemed my GI consult "medically unnecessary". I tore up the bill and the pamphlet and threw them in my dumpster.

I saw this awful doctor just a few days after my appointment with my regular GI, who didn't seem concerned enough about my symptoms to even consider even trying any more meds because of how "great" everything looked 7 months prior. So I went and sought another opinion to try to get on some better medication. Lo and behold, I go in thinking I've got a blank slate in front of this doctor, but she stops me mid-sentence when I told her I had small bowel Crohn's and says, "No, you don't." Turns out she has my flawed records from the horrible consult I had back in September where I was told my 45-pound weight loss wasn't due to any kind of gastrointestinal illness and that I should "seek psychiatric help for my eating disorder and drug-seeking behavior". They tried to brush my inflammation off as from colonoscopy prep. How is that even possible if a biopsy looks positive for possible Crohn's? And to have widespread small bowel inflammation on a CT scan months later after two rounds of antibiotics? I filed a formal complaint against that hospital and have ordered those records destroyed and never allowed them to be seen by anyone else but somehow, this clinic had gotten a hold of all those records without my permission. I asked this doctor what she thought I had, she replied "Irritable Bowel Syndrome". UGH!!! I repeatedly asked her why, she claimed I "didn't meet any of the diagnostic criteria for Crohn's disease". As far as I know there's no official diagnostic criteria, it's a diagnosis made based on a wide series of findings, and multiple doctors have felt it was consistent with Crohn's. Terminal Ileum Biopsy + CT scan = My Diagnosis of Crohn's. But Pillcam and blood work were all negative save the recent iron deficiency which is why this doctor said it couldn't possibly be Crohn's. I'm full-blooded Ashkenazi Jewish. We are 5 times more likely than even non-Jewish whites to develop Crohn's. She wasn't hearing this either. She was very quick to try to get me out of her office but I kept asking "Why? Why? WHY???" Eventually I just left because I realized I couldn't change her mind.

I just recovered from a weeklong flare-up that made me miss work and nearly get myself fired. I haven't lost much weight but I haven't gained any either. Pain, extreme fatigue and joint pain still persists even after the d is gone. I get so dizzy and weak and my regular GI just doesn't seem concerned about the iron deficiency or the bloody diarrhea I had last week. He ordered infusions and another stool culture, both times said his office would call me, I haven't heard a peep out of his office. I'm about ready to seriously give up and stop trying to seek any medical help. After all, it's "not medically necessary".

My GP tested my blood for rheumatoid factor and is referring me to a rheumatologist. I have no idea what they'd be able to do for me, if anything. But it feels like I won't get any more treatment unless I put a gun to someone's head but of course that wouldn't happen in real life, I just don't know how to convince these doctors that I'm actually sick. It almost makes me want to go back to California simply to see my old doctor who diagnosed me. But I left state so no one even remotely will listen. I'm literally questioning why I'm even still alive sometimes over this whole thing. I want to keep my job and my life and be at 100% functioning instead of just 75% or less. Currently in a lot of pain and almost nothing helps.

I hope you all are doing well. I just don't know what to do anymore.
 
gadgetninjette91 said:
Hi everyone reading this, hope you're all doing well.

Yesterday I got a letter in my mailbox from the worst GI clinic in town with a bill for $25 and a pamphlet about "Living Well with Irritable Bowel Syndrome". Turns out Medicaid deemed my GI consult "medically unnecessary". I tore up the bill and the pamphlet and threw them in my dumpster.

I saw this awful doctor just a few days after my appointment with my regular GI, who didn't seem concerned enough about my symptoms to even consider even trying any more meds because of how "great" everything looked 7 months prior. So I went and sought another opinion to try to get on some better medication. Lo and behold, I go in thinking I've got a blank slate in front of this doctor, but she stops me mid-sentence when I told her I had small bowel Crohn's and says, "No, you don't." Turns out she has my flawed records from the horrible consult I had back in September where I was told my 45-pound weight loss wasn't due to any kind of gastrointestinal illness and that I should "seek psychiatric help for my eating disorder". They tried to brush my inflammation off as from colonoscopy prep. How is that even possible if a biopsy looks positive for possible Crohn's? And to have widespread small bowel inflammation on a CT scan months later after two rounds of antibiotics? I filed a formal complaint against that hospital and have ordered those records destroyed and never allowed them to be seen by anyone else but somehow, this clinic had gotten a hold of all those records without my permission. I asked this doctor what she thought I had, she replied "Irritable Bowel Syndrome". UGH!!! I repeatedly asked her why, she claimed I "didn't meet any of the diagnostic criteria for Crohn's disease". As far as I know there's no official diagnostic criteria, it's a diagnosis made based on a wide series of findings, and multiple doctors have felt it was consistent with Crohn's. Terminal Ileum Biopsy + CT scan = My Diagnosis of Crohn's. But Pillcam and blood work were all negative save the recent iron deficiency which is why this doctor said it couldn't possibly be Crohn's. I'm full-blooded Ashkenazi Jewish. We are 5 times more likely than even non-Jewish whites to develop Crohn's. She wasn't hearing this either. She was very quick to try to get me out of her office but I kept asking "Why? Why? WHY???" Eventually I just left because I realized I couldn't change her mind.

I just recovered from a weeklong flare-up that made me miss work and nearly get myself fired. I haven't lost much weight but I haven't gained any either. Pain, extreme fatigue and joint pain still persists even after the d is gone. I get so dizzy and weak and my regular GI just doesn't seem concerned about the iron deficiency or the bloody diarrhea I had last week. He ordered infusions and another stool culture, both times said his office would call me, I haven't heard a peep out of his office. I'm about ready to seriously give up and stop trying to seek any medical help.

My GP tested my blood for rheumatoid factor and is referring me to a rheumatologist. I have no idea what they'd be able to do for me, if anything. But it feels like I won't get any more treatment unless I put a gun to someone's head but of course that wouldn't happen in real life, I just don't know how to convince these doctors that I'm actually sick. It almost makes me want to go back to California simply to see my old doctor who diagnosed me. But I left state so no one even remotely will listen. I'm literally questioning why I'm even still alive sometimes over this whole thing. I want to keep my job and my life and be at 100% functioning instead of just 75% or less. Currently in a lot of pain and almost nothing helps.

I hope you all are doing well. I just don't know what to do anymore.
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Hi. I am sorry for all you are going through. You need another opinion. Last year, they told me that besides Crohns I had ibs. I kept having pain. At or near the end of the year, I explained my symptoms to the person in my gi's office. She asked if I wanted to repeat the enterography. I said yes. This time they found active inflammation. You know your body better than anyone else.
 
That is awful, gadget!

I think they should spend a little more time on bedside manner at whatever ass backwards medical school that doctor went to...

Did you have a diagnosis back in California? Is there any way you could get charts/paperwork from there to show your current GI? I've found that doctors listen to other doctors far more than they do to their own patients...

Have you received any treatment for the small bowel inflammation they found on your CT? Regardless of what they think that the cause is, or isn't, surely they can't just let you walk around with it!

I'm sorry to hear you went through this, I agree with ron that you definitely need another opinion. Would it be possible for you to temporarily travel back to California to see your old doctor? Or is it possible to seek yet another "second" opinion where you are now?
 
Izzie said:
That is awful, gadget!

I think they should spend a little more time on bedside manner at whatever ass backwards medical school that doctor went to...

Did you have a diagnosis back in California? Is there any way you could get charts/paperwork from there to show your current GI? I've found that doctors listen to other doctors far more than they do to their own patients...

Have you received any treatment for the small bowel inflammation they found on your CT? Regardless of what they think that the cause is, or isn't, surely they can't just let you walk around with it!

I'm sorry to hear you went through this, I agree with ron that you definitely need another opinion. Would it be possible for you to temporarily travel back to California to see your old doctor? Or is it possible to seek yet another "second" opinion where you are now?
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I was diagnosed with Crohn's by the California doctor. I have those records, as do all of my doctors. She gave me Pentasa as a starting med which I've been taking for a year with only 75% improvement but 100% remission radio graphically which is why they tried to say IBS. 5-ASA drugs have very little benefit in treating Crohn's and immunosuppressive medication is a must to really control it. My current GI doesn't disagree with the diagnosis, he just doesn't feel it's bad enough right now to put me on anything else. He's essentially waiting for me to be unable to function but I almost lost my job already over this. He wants me homeless with no job before he does anything more and it shouldn't have to be that way. But ZOMG THEM DRUGS MIGHT CAUSE CANCER. Well so do most of America's food additives, smog from factories, sun's radiation...in my eyes, there's no reason why I shouldn't be on more medication. If it looks like Crohn's, acts like Crohn's, it's probably Crohn's. I've yet to find anyone to give me experimental treatment. I just keep getting called a drug seeker and the hospitals have in their notes that I'm a drug seeker.

ronroush7, I hope something shows up eventually. I'm glad you eventually got help. I guess only time will tell, might take a year or two.
 
gadgetninjette91 said:
I was diagnosed with Crohn's by the California doctor. I have those records, as do all of my doctors. She gave me Pentasa as a starting med which I've been taking for a year with only 75% improvement but 100% remission radio graphically which is why they tried to say IBS. 5-ASA drugs have very little benefit in treating Crohn's and immunosuppressive medication is a must to really control it. My current GI doesn't disagree with the diagnosis, he just doesn't feel it's bad enough right now to put me on anything else. He's essentially waiting for me to be unable to function but I almost lost my job already over this. He wants me homeless with no job before he does anything more and it shouldn't have to be that way. But ZOMG THEM DRUGS MIGHT CAUSE CANCER. Well so do most of America's food additives, smog from factories, sun's radiation...in my eyes, there's no reason why I shouldn't be on more medication. If it looks like Crohn's, acts like Crohn's, it's probably Crohn's. I've yet to find anyone to give me experimental treatment. I just keep getting called a drug seeker and the hospitals have in their notes that I'm a drug seeker.

ronroush7, I hope something shows up eventually. I'm glad you eventually got help. I guess only time will tell, might take a year or two.
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I am sorry for the way your doctor has been treating you.
 
That is indeed an unfortunate situation, gadget. I find it appalling how they could label you a drug seeker when you are just seeking treatment for a diagnosis that you have. I can't imagine why a drug seeker would be faking or exaggerating to get immunisuppressants of all things. It seems far-fetched from their end.

Just keep trying! Try to explain that you're at risk of losing your job and income, and that that's a more emergent situation for you than possible side effects years down the line.
 
Bleh, I'm having a bad day. Bad couple of days actually. Yesterday out of nowhere, one minute I was feeling fine, and the next I was having bad cramps and running to the bathroom with urgent, watery d. Fun. It's not a flare since I haven't had any of my usual flare symptoms (no chills, no joint pain, no night sweats, etc) so I'm thinking either I got some mild food poisoning or a mild stomach bug, something along those lines. Today I'm functional but really bleh. I'm definitely having a little pity party for myself today.
 
I saw my GP today for my cough and am having a chest x-ray, some kind of asthma test, and a nasal endoscopy to check my vocal cords. They think it's reflux related but they want to be really sure. So, that's... more time spent in hospitals :p

I'm glad they're taking everything seriously and not just brushing me off though so I can't complain.

And I seriously need to stop putting other people's social comfort ahead of my physical needs. Went out with friends yesterday and was nagged to eat this and drink this and I was like no, I can't, it'll make me sick. To which they mostly rolled their eyes and thought I was being stupid. So I had a couple chips and a few sips of beer and of course today I feel like shit. I'm annoyed with myself for not standing up for myself more, and with my friends for not getting it even though they know how sick I've been.

I should just stop going out altogether :p
 
gadgetninjette91 said:
I was diagnosed with Crohn's by the California doctor. I have those records, as do all of my doctors. She gave me Pentasa as a starting med which I've been taking for a year with only 75% improvement but 100% remission radio graphically which is why they tried to say IBS. 5-ASA drugs have very little benefit in treating Crohn's and immunosuppressive medication is a must to really control it. My current GI doesn't disagree with the diagnosis, he just doesn't feel it's bad enough right now to put me on anything else. He's essentially waiting for me to be unable to function but I almost lost my job already over this. He wants me homeless with no job before he does anything more and it shouldn't have to be that way. But ZOMG THEM DRUGS MIGHT CAUSE CANCER. Well so do most of America's food additives, smog from factories, sun's radiation...in my eyes, there's no reason why I shouldn't be on more medication. If it looks like Crohn's, acts like Crohn's, it's probably Crohn's. I've yet to find anyone to give me experimental treatment. I just keep getting called a drug seeker and the hospitals have in their notes that I'm a drug seeker.



ronroush7, I hope something shows up eventually. I'm glad you eventually got help. I guess only time will tell, might take a year or two.
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What sort of drugs are you wanting your GI to give you? Some of the immunosuppressive drugs are not very nice to take and don't necessarily work either. I don't have Crohns, but got my GI to give me pentasa and it worked so much better than any IBS drugs or non-drug treatments. I am now on strong immunosuppressives (arthritis) and my gut feels pretty bad most days now from the side effects from those drugs.
 
I've found I really can't eat anything dry/crunchy/crumbly/tough at all. I just can't get it down. I know I have trouble swallowing and I think my brand new CRAZY dry mouth isn't exactly helping the matter either... Tips re: mushy/sticky dishes that aren't sweet would be greatly appreciated. Very sick of sweet shakes and Ensure and yoghurt drinks...

Bought a whole bag full of dry mouth remedies at the pharmacy today. The staff there are starting to recognize me, I'm down there several times a week for prescriptions and stuff :p

At least I'm keeping my spirits up. I got to spend time with a friend today, who is a bit older than my partying student friends, and it was nice. We went to a coffee shop, I briefly explained the situation and had a glass of water, no big deal was made. A+ friend.

I hope the rest of you are doing okay! This continues to be such a helpful space for me to vent and share and ask questions and I appreciate all of you for listening/responding/being supportive!
 
Izzie said:
I've found I really can't eat anything dry/crunchy/crumbly/tough at all. I just can't get it down. I know I have trouble swallowing and I think my brand new CRAZY dry mouth isn't exactly helping the matter either... Tips re: mushy/sticky dishes that aren't sweet would be greatly appreciated. Very sick of sweet shakes and Ensure and yoghurt drinks...

Bought a whole bag full of dry mouth remedies at the pharmacy today. The staff there are starting to recognize me, I'm down there several times a week for prescriptions and stuff [emoji14]

At least I'm keeping my spirits up. I got to spend time with a friend today, who is a bit older than my partying student friends, and it was nice. We went to a coffee shop, I briefly explained the situation and had a glass of water, no big deal was made. A+ friend.

I hope the rest of you are doing okay! This continues to be such a helpful space for me to vent and share and ask questions and I appreciate all of you for listening/responding/being supportive!
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Drinks like Ensure have carregeenan which I have read recently is supposed to be bad for people with IBD. Excuse me if my spelling is bad.
 
Izzie it might sound crazy but my saviour when flaring is actually baby food puree pouches, we have a brand in the UK called Ella's Kitchen who don't add sugar or preservatives or anything. They work really well for me, I imagine with your reflux being as bad as it is some of them, especially the fruit ones, won't be suitable for you, but it could be worth trying a few out. For me as well Ready Brek made with a milk substitute works pretty well too, again not sure if that's a thing in the US, but it's basically very finely ground oats which is again a children's breakfast.

I found my little hand blender thing to be a really good purchase as it means I can just blend up fruit/veg during my flares and also does thick soups, smoothies etc :)

Cat I hope that your guts settle a bit soon for you, hope it's just a rough day rather than a full flare starting! Have you heard from the new colorectal surgeon yet?

I thought I was heading into a full flare up but so far I've just been having an increase in pain/night sweats/nausea/mucus/bloating/hemmie and fissure problems and urgency. So far the D seems to just be on and off and then the other day my hemmie seemed to be so swollen I became constipated. Hopefully not TMI but I couldn't even get my finger in to properly check the hemmie out etc :/

I've also been so fatigued the last week or so an just feel weak and like, limp. My appetite has taken a bit of a nose dive though so I don't think that's helping, and I'm not sleeping great either. My joints have been giving me problems again too which is really frustrating, my ankles in particular have been difficult as they are affecting my walking.

I know it may sound a bit weird but hopefully it will make sense when I say I wish it would either all settle down again or just go into flare already and get it over with. Sigh. As it gets closer to my next GI appointment the more I just want to give up and feel like I'm never going to get better :(
 
sarahfh said:
Izzie it might sound crazy but my saviour when flaring is actually baby food puree pouches, we have a brand in the UK called Ella's Kitchen who don't add sugar or preservatives or anything. They work really well for me, I imagine with your reflux being as bad as it is some of them, especially the fruit ones, won't be suitable for you, but it could be worth trying a few out. For me as well Ready Brek made with a milk substitute works pretty well too, again not sure if that's a thing in the US, but it's basically very finely ground oats which is again a children's breakfast.

I found my little hand blender thing to be a really good purchase as it means I can just blend up fruit/veg during my flares and also does thick soups, smoothies etc :)

Cat I hope that your guts settle a bit soon for you, hope it's just a rough day rather than a full flare starting! Have you heard from the new colorectal surgeon yet?

I thought I was heading into a full flare up but so far I've just been having an increase in pain/night sweats/nausea/mucus/bloating/hemmie and fissure problems and urgency. So far the D seems to just be on and off and then the other day my hemmie seemed to be so swollen I became constipated. Hopefully not TMI but I couldn't even get my finger in to properly check the hemmie out etc :/

I've also been so fatigued the last week or so an just feel weak and like, limp. My appetite has taken a bit of a nose dive though so I don't think that's helping, and I'm not sleeping great either. My joints have been giving me problems again too which is really frustrating, my ankles in particular have been difficult as they are affecting my walking.

I know it may sound a bit weird but hopefully it will make sense when I say I wish it would either all settle down again or just go into flare already and get it over with. Sigh. As it gets closer to my next GI appointment the more I just want to give up and feel like I'm never going to get better :(
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When I had to go on tpn, I was tempted to have baby food.
 
Sarah, thank you. Things do seem to be gradually calming down so it doesn't seem to be a flare. And yes, I have an appointment with the new colorectal surgeon 2 weeks from tomorrow, so not too far off now. I have no idea if he'll be able to help me (I don't really want surgery) and I'm not particularly hopeful nor optimistic for that appointment.

And I'll join you in the not sleeping well club. I haven't had a good night's sleep since my grandfather died (over 2 weeks and counting). Usually I sleep pretty well because I take Amitriptyline and that helps knock me out and keep me asleep, but even with the Ami I've been restless, having a hard time falling and staying asleep and then waking up way too early and not being able to get back to sleep. My pets aren't helping, either. Lately, very early in the morning, my dog starts whining to be let out to potty and my cat starts meowing for her food. Literally this morning at least 3 times I had to whisper-yell "Shhh!" at them because they were so vocal. But even without my pets waking me up, my quality of sleep lately has been awful. I'm exhausted and for once my iron levels are fine, so it's not anemia that's making me so tired. I just can't sleep.

My goodness, your description of your symptoms sound a lot like mine when I'm in a flare. I get night sweats too, and joint pains (I officially have some type of arthritis, either osteo or inflammatory, in both hips). And your hemmie issues are sadly all too familiar to me! Are you able to see your GP before the GI appointment? Your GP should be able to look into your joint issues (my arthritis was found on x-ray by my GP, although not all types of arthritis can be seen on x-ray) and they should be able to give you something like cream, suppositories, or enemas to help the hemmies and fissures. At least then you might get some answers (at least about the joints) and a bit of relief while you're waiting for that GI appointment.

Oh, and if you're currently having night sweats? Yeah, unfortunately you're already in a flare. Night sweats typically indicate either infection or inflammation, and inflammation = flare. I only get night sweats when I'm flaring, it's a fairly common flare symptom. Unless you're in menopause or something like that (and I believe you're pretty young so I presume it's not menopause!), then the night sweats most likely indicate that you're flaring.
 
New to all this, so I'm guess we are joining the frustration train. Daughter 15, has had chronic abdominal pain going on 4 years now. Progressively getting worse. GI says functional abdominal pain..then IBS and now testing for IBD. claprotection levels at 636 on last test, lymphocytes low, RBC high. 2 EGDs and colonoscopy showed normal but are awaiting biopsies. Went for MRE today and are awaiting for results. Seems like a whole lot of waiting.....meanwhile all she wants to do is sleep..no appetite..weight loss of 26 lbs since February...night sweats but no fever..GI doctor did order a EKG right after EGD was done..so confused at this..says it was to test to see if her heart rythem was stable for medicine??? Anyone heard of this?
 
Glad things have settled down a bit for you! I can understand completely wanting to avoid surgery where you can.

You're definitely not the only one who's pets wake them up haha, my cats wake me up most mornings bless them! Some of the mornings they are mean and pester me at like 5am and others they leave it until 9am bless them. It's a good job we love them isn't it!

I've had an ANA blood test and rheumatoid factor in the last year which both came back fine, but I think I will visit the GP about it to be honest as it is getting frustrating. Through all this I keep having my mum remind me that he symptoms started off similar but it took nearly 20 years for her to get a positive ANA and her SLE diagnosis. It's frustrating.

Hah I hope it's no menopause! I'm only 25 and although I'm on medication to keep my endometriosis in check, it's not the artificial menopause it's just the pill so shouldn't cause problems.

I don't actually get a fever as in when I take my temperature it is normal, but I feel hot and still get the night sweats on and off. I've luckily had a couple of nights without them now so that's nice, but they are frustrating and I end up with damp pyjamas from them so have to change or sleep in damp ones (depending how tired I am haha).

I just feel like the last few weeks have been odd in that I've had all my usual flare symptoms but without the D :S this week I've noticed my appetite has taken a real nose dive though.

MommaLlama welcome to the undiagnosed group, it sounds like your daughter is well on her way to a diagnosis especially with the calprotectin being so high. The sedation given for colonoscopy and upper endoscopy can cause your heart the go too slow/too fast or your blood pressure to go up/down for some people so they were probably just being on the careful side to make sure it was just the medication. I had to have the EKG after both of mine because my blood pressure went really low and my heart rate really high. It was just the medication and the fact I weigh very little and all has been fine (aside from the conditions I already have diagnosed). Hope your daughter gets her diagnosis and some treatment soon!
 
Sarah, yep, my night sweats sound very similar to yours. I never seem to have an actual fever either, but I will get terrible chills sometimes and I'll also soak through my pajamas and the bed sheets with my night sweats. I'm 36 so I'm a bit older than you but I'm not in menopause either, it's just another oh-so-fun flare symptom for me.

One tip that I read on the forum about night sweats is to sleep on a towel - that way, your pajamas are still going to get damp, but at least your bed sheets will stay dry. I also try to keep a fresh set of pajamas near the bed in case I need to change in the middle of the night, that way I don't have to go rummaging around in the dark.

Oh, here's a bit of good news from me. I finally managed to get some sleep last night! I was so exhausted, I zonked out hard around 10 PM. Hubby got home from work I think around 11 PM (he just got a new job as a chef so he's now working weird and sometimes long hours) and I'm sure he took a shower when he got home and he probably made a bunch of noise, but I didn't wake up. I stayed zonked out until about 5:30 AM when my cat started meowing for food (I get up at 6 AM for work anyway so waking at 5:30 isn't too terribly bad). So yeah, I guess that's 7.5 hours that I managed to stay asleep for and it was much-needed! I feel much less exhausted today.

My guts are improving, too. I'm still not doing great, but I'm gradually improving and I'm doing okay-ish for the most part. Mentally I'm still having kind of a hard time with my grandfather's death but I know I just need to give that time. This isn't my first time through the grief rodeo and I know I just need to work though things at my own pace and not try to rush myself, I have to feel my feelings. So I'm working on that. I'm sure that's a big part of why I haven't been sleeping well or feeling great.
 
sarahfh said:
Glad things have settled down a bit for you! I can understand completely wanting to avoid surgery where you can.

You're definitely not the only one who's pets wake them up haha, my cats wake me up most mornings bless them! Some of the mornings they are mean and pester me at like 5am and others they leave it until 9am bless them. It's a good job we love them isn't it!

I've had an ANA blood test and rheumatoid factor in the last year which both came back fine, but I think I will visit the GP about it to be honest as it is getting frustrating. Through all this I keep having my mum remind me that he symptoms started off similar but it took nearly 20 years for her to get a positive ANA and her SLE diagnosis. It's frustrating.

Hah I hope it's no menopause! I'm only 25 and although I'm on medication to keep my endometriosis in check, it's not the artificial menopause it's just the pill so shouldn't cause problems.

I don't actually get a fever as in when I take my temperature it is normal, but I feel hot and still get the night sweats on and off. I've luckily had a couple of nights without them now so that's nice, but they are frustrating and I end up with damp pyjamas from them so have to change or sleep in damp ones (depending how tired I am haha).

I just feel like the last few weeks have been odd in that I've had all my usual flare symptoms but without the D :S this week I've noticed my appetite has taken a real nose dive though.

MommaLlama welcome to the undiagnosed group, it sounds like your daughter is well on her way to a diagnosis especially with the calprotectin being so high. The sedation given for colonoscopy and upper endoscopy can cause your heart the go too slow/too fast or your blood pressure to go up/down for some people so they were probably just being on the careful side to make sure it was just the medication. I had to have the EKG after both of mine because my blood pressure went really low and my heart rate really high. It was just the medication and the fact I weigh very little and all has been fine (aside from the conditions I already have diagnosed). Hope your daughter gets her diagnosis and some treatment soon!
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Thanks...comforting knowing we aren't alone in all this..
 
sarahfh said:
Izzie it might sound crazy but my saviour when flaring is actually baby food puree pouches, we have a brand in the UK called Ella's Kitchen who don't add sugar or preservatives or anything. They work really well for me, I imagine with your reflux being as bad as it is some of them, especially the fruit ones, won't be suitable for you, but it could be worth trying a few out. For me as well Ready Brek made with a milk substitute works pretty well too, again not sure if that's a thing in the US, but it's basically very finely ground oats which is again a children's breakfast.

I found my little hand blender thing to be a really good purchase as it means I can just blend up fruit/veg during my flares and also does thick soups, smoothies etc :)

Cat I hope that your guts settle a bit soon for you, hope it's just a rough day rather than a full flare starting! Have you heard from the new colorectal surgeon yet?

I thought I was heading into a full flare up but so far I've just been having an increase in pain/night sweats/nausea/mucus/bloating/hemmie and fissure problems and urgency. So far the D seems to just be on and off and then the other day my hemmie seemed to be so swollen I became constipated. Hopefully not TMI but I couldn't even get my finger in to properly check the hemmie out etc :/

I've also been so fatigued the last week or so an just feel weak and like, limp. My appetite has taken a bit of a nose dive though so I don't think that's helping, and I'm not sleeping great either. My joints have been giving me problems again too which is really frustrating, my ankles in particular have been difficult as they are affecting my walking.

I know it may sound a bit weird but hopefully it will make sense when I say I wish it would either all settle down again or just go into flare already and get it over with. Sigh. As it gets closer to my next GI appointment the more I just want to give up and feel like I'm never going to get better :(
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Found some fruit purée pouches and omg such a lifesaver. Thanks so much for the tip! Can't really eat whole fruit much so this is perfect!!
 
Does anyone know if it's common to experience dryness in basically ALL your mucus membranes, not just your mouth, as a side effect from medication?

It's pretty insane currently, my eyes are so dry and red, my mouth is the Sahara. Going to call the doctor on Monday as I am pretty sure this is due to the new medication. I've heard it can get better the longer you take the meds but this is kind of crazy since it's absolutely everywhere and kind of so bad it hurts.

I switched brands of medication today in case that might help but I doubt it.

It's always something :p Though compared to constant excruciating stomach pain, I'll take it.
 
Hi all.i went in hospital last saturday with extreme pain in very left upper abdomen.after a colonoscopy mris in abdominal area,mri in lower back and any blood tests you can imagine they told me i dont have any thing they gave me a pain killer and now im home.unfortunately this burning left pain is still there but 50% less painfull.i asked doctors and told me its maybe muscular pain that radiates in abdominal area but one doctor told me its maybe crohns disease and i must make further tests.this doctor is a friend he told me this on the phone i didnt visit him.my question is if crohns can be so much painfull like a burning inside.and the second question if you feel better when you walk.i write this because when i go for a walk i dont feel any pain there.ps:no diarrheas too these days i've never had.thank you so much in advanced and i wish good health to all of you.
Edit:all left area including lower back is sensitive to touch.even if i put a pillow there its burning.
 
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Hello everyone!

Just a very quick, very selfish post to say hello and that I have missed all of you! I hope you are all ok, I hope you are starting to get somewhere and if not that you can come and ask for advice.
This place is amazing and to be honest I don't know why I stopped visiting but I am so glad that I have found you all again.

Take care, look after yourselves and have a lovely day! x
 
Cat I'm glad your guts are improving a bit, I hope it continues! Glad you finally managed to get some sleep too, I hope you've managed to get a bit more soon. Yeah definitely don't rush yourself with the grief, just take your time. I've done the whole trying to just get over it quickly and it just ended up biting me in the arse later on.

Thankfully I've not really sweated through my pyjamas yet but I will definitely sleep on a towel if that starts. I'm just not generally a sweaty person which seems to be working in my favour right now!

I've had a slight increase in my body temperature the last few days and morning D so looks like I may be heading for the rocky spell for sure this time :( perfect timing for my sponsored walk for Crohn's and Colitis UK on Sunday!

Izzie glad you managed to find some, are they going down okay?
 
Yeah, sarah, they've been great!

So, weird story time: Past few days I've been feeling really crappy. Not even just physically but dry mouth, dry eyes, and just... really really uncharacterisitcally down and kind of aggressive, sorta mean, even. Which is not me at all, my mother was very concerned and people around me were wondering what the hell was going on.

Spoke to a pharmacist who suggested I change brands of medication to see if the dry mouth would pass, so I did. Didn't consider the mood changes at all really. First day - no change. And today... dry mouth is almost entirely gone and my mood is radically improved. Of course, my heartburn is also worse (like I keep saying - always something). So I'm not sure if it's that this brand just isn't as effective or if it's something else.

But is it possible for a change of brand to affect you so much? I mean it must be, but I thought it was quite extraordinary and strange. The other brand seemed to be more effective in controlling my symptoms but I have no desire to walk around acting like a total pain in the butt either :p

Just a super strange experience that I'm not sure how I'll explain to the doc.
 
Izzie said:
Yeah, sarah, they've been great!

So, weird story time: Past few days I've been feeling really crappy. Not even just physically but dry mouth, dry eyes, and just... really really uncharacterisitcally down and kind of aggressive, sorta mean, even. Which is not me at all, my mother was very concerned and people around me were wondering what the hell was going on.

Spoke to a pharmacist who suggested I change brands of medication to see if the dry mouth would pass, so I did. Didn't consider the mood changes at all really. First day - no change. And today... dry mouth is almost entirely gone and my mood is radically improved. Of course, my heartburn is also worse (like I keep saying - always something). So I'm not sure if it's that this brand just isn't as effective or if it's something else.

But is it possible for a change of brand to affect you so much? I mean it must be, but I thought it was quite extraordinary and strange. The other brand seemed to be more effective in controlling my symptoms but I have no desire to walk around acting like a total pain in the butt either :p

Just a super strange experience that I'm not sure how I'll explain to the doc.
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Hi Izzie,

I know that mesalazine is brand specific and once you have started one brand you have to stay with it, even if it is the same presentation - so it stands to reason that the side effects may vary. Maybe the chemicals it is held in are different? Hope the improvements continue!!!
 
Hi Dimitris, welcome to the forum. I agree that it sounds like you need further testing. The colonoscopy can only see the very end of the small intestine, so that means that there is a lot of small intestine that they aren't able to see on that test. Since you said your pain is in the upper left, the source of your pain could be higher up in the small intestine where the colonoscopy couldn't see. A test such as capsule endoscopy or MRE should be able to get a better view of the small intestine, so do keep pursuing more tests. Oh, and yes, walking/exercise can definitely help with chronic pain and with digestion, so I don't think it's unusual that you've experienced some relief when you take walks. I like to exercise and walk a lot too and I find that it helps me also.

Hi Madmouse! Welcome back! How are you doing these days? I always like to see old friends come back to the forum, but at the same time it always worries me - people tend to come to the forum when they're doing poorly and tend to leave the forum when they're doing well, so I hope you're not doing poorly!

Izzie, that amount of dryness and the sudden onset is probably medication induced, but if it continues, you may want to get checked out for Sjogren's. That's an autoimmune illness that is characterized by extreme dryness. There was a girl on the forum awhile back who had Sjogren's, and in addition to things like dry mouth and dry eyes, she was starting to have organ dryness as well (her pancreas apparently was drying out and she had to start taking pancreatic enzymes). So do keep an eye on it. Hopefully it's just the meds and can be easily corrected!

How's everybody doing today? I had a rough weekend. I had just gotten my guts under control, when suddenly I came down with a UTI. Ugh, not fun. So I have to be on antibiotics for a week, and they are not being friendly at all to my stomach or guts. Bleh! I'm also fairly stressed out. As you guys know, my grandfather recently died so now my grandmother is a widow. She's got bad dementia and cannot be on her own. So, she doesn't know it yet, but my family is moving her to a nursing home on Thursday of this week. (She is aware that she's going to be moving soon but she doesn't know any of the specifics, my uncle felt it's best that way although I don't necessarily agree.) So, I think Thursday is going to be highly stressful. I just hope my grandma doesn't get too angry about it, because she can still hold a grudge even if her dementia doesn't allow her to remember why she's holding a grudge! So yeah, I'm going to be pretty stressed out until the dust settles from whatever goes down on Thursday. I know she needs to be in a home and I'm really happy because it's a good nursing home and they even have a memory unit (meaning they're specifically trained to help people with dementia), so it's ideal for her. It's just going to be hard this week while we go through the process of getting her moved and dealing with whatever emotions she has about it (she's had pretty extreme emotions lately, which is understandable because she's only been a widow for a little over 3 weeks). So yeah, between the antibiotics and the situation with my grandma, my guts are so not happy. I just need this week to be over with already!
 
I was concerned about that too, Cat, but since it's practically gone now after two days of a new medication I figure it was just a side effect. I might have to go back on that brand though since this other one isn't working at all. I seem to be very sensitive to differences between brands. Might have to experiment for a while before I find something that works without any really severe side effects.

Sorry to hear about that but hopefully your grandmother will do better once she's settled into the nursing home! I know that's been the case with my elderly relatives.
 
Thanks, Izzie. I do think things will be much better once she's settled in and gets over whatever emotions she's going to have about moving, it's just that it's going to be a difficult road to get to that point. It's apparently a very good nursing home with a very good memory unit, and my grandma already has a lot of friends and a few relatives who live at this nursing home, so she will be much less lonely (she's currently living alone and is very lonely, she calls me and leaves me sad voicemail messages saying things like, "call me anytime, come over anytime, I'm always here and I'm always alone" - I have been visiting her as often as I can, but that means usually only on the weekends as she lives about an hour away from me, so she's very lonely during the week). I'm hoping that maybe, if she gets somewhat settled in on Thursday & Friday, maybe on Sat or Sun I could go over to her nursing home and bring her a housewarming gift. If she's not too angry.
 
My grandmother used to leave me those kinds of messages too and I remember it making me feel very guilty because she had me and my mother and no one else, and it's just impossible for two people with busy lives to satisfy someone's entire need for social contact. So hopefully your grandmother will connect to other people more after she's settled in.

What worked with my grandfather once he moved to a home was to try and focus on all the things he didn't have to worry about anymore that he used to have to worry about at home. And visiting to just visit, rather than having to clean or fix things every time we visited, made it easier to actually be social too.
 
Whine!

I'm supposed to head out of town to go camping (with flush toilets!) Thursday, but I'm having super mucusy, watery, D. Like, at least 10 yesterday. Luckily I already had an appointment scheduled with my GI for this afternoon, so that's helpful. I just hope I can get feeling better asap.
 
Izzie, yes, we've been helping and fixing a lot of things as well! My grandma told me yesterday that "someone" (it turns out it was my cousin) did something with the TV and now my grandma couldn't get the TV to work right. My cousin was apparently trying to watch a channel that my grandma doesn't get, so I just changed the channel for her and "fixed" it. There have been a LOT of things like that, we have to "fix" many things for my grandma these days. My grandma has a nurse who currently comes by 3 times a week for a few hours each time, and the nurse helps a lot with things like cleaning, dishes, laundry, etc. But there's only so much she can do and my grandma seems to save all the "fixing" stuff for family to deal with. It will be really nice when we don't have to swoop in and save the day every single time we visit.

And yes, my grandparents were very social (belonged to a lot of clubs and organizations) and my grandma has lived in the same city for most of her life, so she knows a lot of people and I think she'll be quite the social butterfly at the nursing home.

Wildmtn, eek, feel better! I wouldn't want to go camping while having watery d, but at least like you said it's flush toilets (hopefully very nearby to your campsite? Or are you staying in a camper/cabin?). Hopefully getting away into nature will also help calm things down. I hope you're able to have a good camping trip!
 
Hi Cat - I am so sorry to hear that you are going through such a rough patch at the moment, and I hope that with the loving support of your friends and family, that you will get through it together. My grandma had vascular dementia and got detained under the mental health act after she ran down the street naked with a large knife...she had spent many years struggling but until then my grandfather had point blank refused any further intervention. She did struggle initially (as most people with dementia do with any big change) but she very quickly settled into the routine and actually ended up happier than she had been in years - I hope your grandma finds this happiness too.

Izzie - I am glad that the dryness has cleared up but what a bummer that it is not working as well - fingers crossed you find your solution soon!

Wildmtn - that sounds rubbish, I really hope it doesnt spoil your camping trip!!!

Cat - thanks for the support. Things have been so up and down since I was last here - I am not really sure why I left, I guess I was maybe going through a patch of denial and wanted as few reminders of being ill as possible. However I am currently striving to believe that I will not let this control me all the time - yes it has a massive impact on my life, but I should try and embrace that on the better days and see the positives it has had, and on the bad days try and remember that good days come too.
I still don't have a diagnosis! I have recently been referred to a gastro specific hospital by my GP to see if they have any answers - we shall see. I still have an appalling diet and am still on steroids (budesonide 9mg OD since Sept 14), alongside a million and one others, none of which I have been able to wean myself off (with dr guidance), although the Drs have tried which has resulted in a lot of time of work, not to mention the multiple trips to A&E and those delightful symptoms etc... I have even been accused of drug seeking when I had to return to A&E for analgesia!!!
My most current battle (outside of the daily battles we each face with our own symptoms) is that I am unable to tolerate oral antibiotics but no-one seems willing to take responsibility for providing an alternative - add into the the mix that I need antibiotics for a dental infection, which the medical drs are refusing to help with because it is teeth. Now my argument is that whilst the infection may be under teeth, the real problem is active infection + highish dose long term steroids + immunosuppressants = potential for big MEDICAL problem, which surely they should be helping me to address? I have even tried approaching it from a 'what are you going to do if I get a UTI or respiratory infection?' but that fell on deaf ears.
Today has been an odd mixed day. I went swimming, which is the first exercise I have managed since this brokenness started, so I was really pleased with that. I then went to work for a 'continuing professional development' meeting (where we can get together and discuss things as a group in an informal manner), but had to speak to my manager about a secondment I am applying for only to be told repeatedly "you just need to improve your attendance" or "you just need to come to work more" - because that is very helpful advice - I had not thought of that...he made me cry. I then enjoyed the meeting I had gone to, went home via a new swimsuit and now am sitting up moaning at you lot due to delightful abdo pain...hey ho!!! Tomorrow I have an appointment with my rheumo who I hate and keeps telling me this is all in my head (oh and then starts pleasant drugs like methotrexate in the same sentence) - so that will be fun!

Sorry for the long ranty moan!

I hope you are all having a better day than yesterday and that tomorrow brings something pleasing (be that less pain, fewer trips to the loo, an unexpected piece of cake or simply a good nights sleep).

Toodles and pips
 
Yeah it's very frustrating. Every symptom came back, like clockwork. I'm struggling with patience at the moment. I know that it may take a while to find the ideal medication, and every trial run requires about 10-14 days before I can make a fair judgment as to how it's working. Even longer maybe if I get side effects and need to wait them out (my pharmacist claims that side effects like dry mouth tends to go away with time).

I've been pretty depressed lately, with a hopeless, "I want to give up" kind of feeling that I've never really had before. It's prompted me to get in touch with a psychologist, so hopefully I'll do some therapy soon. I'm hoping it'll help. If nothing else it might give my poor family a rest from listening to my whining all the time :p
I'm the kind of person who processes things out loud and will go through the "nothing is working I want to die" phase all the way up to "you know what it's not so bad I'll get through this" in one long conversation and I think it's giving my loved ones emotional whiplash sometimes :D
 
Cat-a-Tonic said:
Hi Dimitris, welcome to the forum. I agree that it sounds like you need further testing. The colonoscopy can only see the very end of the small intestine, so that means that there is a lot of small intestine that they aren't able to see on that test. Since you said your pain is in the upper left, the source of your pain could be higher up in the small intestine where the colonoscopy couldn't see. A test such as capsule endoscopy or MRE should be able to get a better view of the small intestine, so do keep pursuing more tests. Oh, and yes, walking/exercise can definitely help with chronic pain and with digestion, so I don't think it's unusual that you've experienced some relief when you take walks. I like to exercise and walk a lot too and I find that it helps me also.
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Thanks for your comment.i told my doctor about the capsule endoscopy.he will first make a gastroscopy tomorrow and if its clear i will go to a hospital in athens for this test.of course i will write again here for the results if i can help someone with my case.
 
Madmouse, thanks for your support. Fortunately my grandma hasn't done anything quite that severe yet, I think the worst thing she's done lately was that she wandered around outside at her condo complex and was knocking on random garage doors (not her own) and yelling, "This is my garage, let me in!" So she wasn't wielding a knife, but even so, she was apparently trying to gain entry into strangers' homes (or at least their garages, for some reason). And she really should logically know that she lives alone now, so even if she was knocking on her own garage door, nobody would be there to let her in. Sigh! It's all very stressful, but hopefully like you said things will get much better once she's in the nursing home and is actually getting proper care for her dementia (she was supposedly taking medication for the dementia, but when I looked at her pill bottles, they were full of candy rather than meds, so I think she dumped her meds and swapped them out with candy).

Izzie, I get those feelings a lot as well. I find that it's super helpful to talk about it, even if it's just with you guys - it's really validating to just get it all out there and to know that I'm not alone in having really negative "don't want to do this anymore" type of feelings. Also, I had read a blog post recently (not written by a girl with IBD nor GERD, she's got anxiety and panic attack and agoraphobia issues, but I can relate to a LOT of what she's written) - I've sort of made what she wrote into a personal mantra for myself, that my negative feelings are liars and that the bad times aren't as permanent as they feel. Here's the link to the full post:
http://www.epbot.com/2016/03/writing-my-way-out.html

I'm exhausted today because a new stress found its way into my life yesterday. My hubby cut himself really badly at work. He's just got a new job as a chef and he's accidentally cut himself a couple times at work already, so I went online and bought him the best top-rated chef anti-cutting gloves I could find. Well, of course, he forgot to bring them with him to work yesterday, and he ended up cutting his finger so badly that he essentially lost a fingertip. Not good. He went to the ER, it was that bad, but they were able to get the bleeding stopped and fortunately the doctor said that hubby can still work (and he's making sure to bring those stupid gloves with him now!), but still, hubby's in pain and that finger is going to be useless for awhile until it heals over. We were afraid he was going to either lose his job or be forced to resign, but fortunately he can still work. Still, it was a stressful day yesterday. Worrying both about my hubby's finger and his job security, not a fun time.
 
Hey, quick question! Yesterday my GI Rx'd Bentyl 20mg to hopefully get me through the camping trip, and beyond, while he and I think about another colonoscopy and other testing.

Anyway - took the first pill last night, and didn't have a night time bowel movement, just some of my "usual" discomfort (for a couple of days I've been waking up with D around the time I wake up to take my thyroid med -- not sure if the D is waking me or if I'm having D because I'm already awake). But this morning, even after taking my morning dose about 45 minutes ago (I'm taking 20mg morning and night) I'm back to sudden watery D. Is this "normal"? Do I just need to wait for the morning dose to "kick in"?
 
Oh wow Cat that is scary indeed. I cut myself quite badly recently (wrote about it here I think) but cutting your fingertip off sounds a lot worse. Yikes! Hopefully he'll heal quickly!
As if you didn't have enough stress going on around you...

I'm trying yet another brand of meds today, since the one I switched to was absolutely useless. I encountered a very suspicious pharmacist. She wanted to know why I'd taken out the same perscription meds 3 times in a month and I explained the situation and she was very annoyed and told me off about how "generic brands are all the same, there's no difference, you don't need this".

I lost my patience and told her that that's between me and my doctor and I need my medication. Finally got them, but it left me feeling pretty uncomfortable with the implications. What does she think I'm going to do with reflux meds that's so bad?!

Keeping my fingers crossed that this is the one. My cough/throat clearing problem came back with a vengeance with this first switch, and the one before that was perfect when it came to stomach stuff, a complete horror with dryness (I honestly think it can't have been healthy, I was getting sores in my mouth, nosebleeds, crazy red eyes it was so bad).

Honestly so far in this new medication experimentation nothing has been as good as the one brand of generic omeprazole I found that worked last year. I was on 40 mg a day, I'm now on 80 mg a day of pantoprazole (which I've gotten the impression is the "strongest"/newest PPI?) and there's a very very slight improvement only. If nothing sticks I might ask to go back on them at an increased dose to see if that's better.

Also not sure what is going on with the rest of my digestive system. Am getting a fair bit of blood when wiping recently. Some crampy belly pains too but nothing major.

Summer classes start next week! I'm excited for something to do. A little nervous to sit in class with my constant coughing/throat clearing since it might annoy people but what the heck, I have to try to live my life.
 
Wildmtn, Bentyl never did much for me. My understanding is that it's more for IBS than IBD. It's an anti-spasmodic, meaning it'll calm down cramping, and that's about it. So if your d is due to cramping, then it should stop that from happening. But if your d is due to inflammation, infection, or basically any other cause, then Bentyl probably won't have much effect. If you want something that stops the d for your camping trip, you might want to try either Imodium, or ask your doc for Lomotil (which is basically a prescription strength version of Imodium). You don't want to overdo it on anti-diarrheal medicine as that can lead to other problems, but for just the duration of your trip, it should be okay to take something like that.
 
Hi everyone. I haven't posted in a few weeks or so, but I catch up on everyone's new posts every couple of days. I typically come here to read the new posts when I'm feeling especially bad, and somehow, it always seems to make me feel a little better......at least emotionally!

Cat, you sure do have a lot going on! Holy cow. Hopefully everything will settle down soon. I really hope that everything with your grandma goes well, and it sounds like the nursing home is what she needs and should be very positive, once she gets used to it.

Izzie, I almost always relate to something you say in your posts! My patience has definitely been tested lately, and I'm just naturally not a patient person at all. And I feel like I am always complaining to the people around me about being sick, and they are probably so tired of me. But oh well, because talking about it really does help!

My husband has been gone for work for about a month and a half now, but he'll be home in about two weeks. Hooray! We've only been able to talk on the phone a couple times, and we can barely even text. He's in the military, and he's doing training, so he's been crazy busy. He's my favorite person to vent to, so it'll be nice to have him back! :) Right now I'm doing something called low dose immunotherapy. Basically, I get really really tiny amounts of stuff injected into me, and the hope is that my immune system will start to recognize that substance as a friend, instead of automatically attacking it for no reason. I'm currently being treated for food/chemical allergies and yeast overgrowth with the low dose immunotherapy. So far it's not working though. Apparently it can take a while to figure out the right dose for each person.......if it's not strong enough, nothing happens; if it's too strong, your symptoms get worse, which is considered a flare, and then you have to wait 7 weeks to get another dose. I've already flared three times, so it's definitely testing my patience. My doctor said that if the food/chemical and yeast doses don't work for me, then she wants to try the ones for Lyme disease and Crohns (two separate ones). You can only do one at a time, besides the food/chemical one, because that's a little different than the others. Anyway, this treatment is clearly going to take some time, and no one even knows if it's going to work for me. So that's a little scary. I just hate wasting time. I feel like I'm wasting my life! There's so much I want to do, but I can't.

Anyway, I just talked a lot about stuff that no one probably cares about, but let's be honest, I post on here mostly for myself. It always feels good to get it out! So thanks for listening!
 
akgirl, I hear you when it comes to testing out meds/treatments. It's such a slow, tedious process and I'm in the middle of it myself right now.

Talked to my GI nurse today who decided I'm going back on esomeprazole. I'm hoping it's good enough to stay on for a while, my system must be going crazy switching back and forth all the time.

I'm not a patient person either! It's like my mind assumes that any state I'm currently in is permanent so if I feel sick I want to be better NOW or I feel like I never will be better :p It's silly but I can't seem to shake that mentality. On the plus side, the second I do feel better, it's like I forget I was ever feeling bad at all.
 
Akgirl, I haven't heard of that type of therapy before. It sounds like you're going to have to be a guinea pig for quite some time! That's not fun. I really hope it starts working soon, because 3 flares in a row sounds just awful. Hopefully 3 is the lucky number and it starts working on your next dose! Keep us posted, I'll be interested to hear how you're doing and I really hope it starts working.

Ugh. I'm a nervous wreck today. My grandmother is being moved into the nursing home tomorrow. I just want everything to go smoothly and to be over with. I know she's going to be upset, mad, she'll probably cry or fight. She's been through so much lately, it hasn't even been a full month yet since my grandpa died. But she really, really needs to be in a nursing home and I know this is definitely the best option for her. She's just going to hate us all for a little while (or maybe a long while) for basically forcing her into a nursing home. I really hope she doesn't stay mad for long. I'm hoping I can go visit her on the weekend and bring her a housewarming gift and help her get settled in. That's my hope but I don't know how upset she's going to be with all of us. It's twisting my stomach into knots just thinking about it.
 
I hope everything goes smoothly with your grandmother today Cat! Thinking of you!

Yesterday I thought my flare had hit, full blown D with a LOT of mucus and nausea and generally wiped out and a lot of pain last night. Today? Only 1 mostly solid BM but still lots of nausea, wiped out and more pain than usual but less than yesterday. I wish my body could make up it's mind and get its act together :ybatty:
I've also had zero appetite for about a week so food isn't really happening right now. So sick of nothing being appealing and nausea, I'm too underweight to be able to get away with this crap!
 
Well, it apparently did not go smoothly, but my dad and uncle got my grandmother moved in to the nursing home. My dad didn't give me many details so I'm going to call him tomorrow to find out more. The important thing is, she's in the nursing home which is really where she needs to be, so I'm very happy about that. We were told no visitors for at least a week while she acclimates to her new environment, so I can't see her this weekend, but I'm hoping to go over there next weekend to see her. Will keep you guys posted on how that goes.

I'll join you in the no appetite and feeling like crap club. I've had a UTI for close to a week now. My colon is not helping matters at all. It initially felt like my colon was too full of stool and was pushing on my bladder and irritated it. Then I got the infection which made me super nauseous so I barely ate for like 2-3 days. Then the antibiotics wrecked my gut and for some reason gave me wicked gas. The gas filled my colon and my colon was pushing on my already irritated bladder which made it even angrier. I think things are *finally* starting to calm down but sheesh, it's like my colon and bladder are in a contest to see which one can give me more trouble. And they're both winning. :p
 
Another one for the feeling crap club right here. More mentally than physically though, I think. The meds aren't really working. It's okay, I can sorta function but I'm still in pain and can't eat normal food and have heartburn all the time and a lot of belching. It's not worse than it has been but over time it just gets old. I've tried all medications available, apparently, so now I'm trying different dietary approaches, trying to lose some more weight etc.

Sorry to hear that things didn't run smoothly with your grandmother, Cat, but maybe that's to be expected. Hopefully she'll settle in well in the coming week.
 
Oh no Cat neither of those sound good! I hope your grandmother settles in okay and your bladder and colon give up the fight soon!

I'm definitely feeling mentally crap right now too, I'm really starting to think unless this slightly rocky patch turns into a full on flare that I will just have to accept the IBS diagnosis. I'm just overall sick of being sick and missing out on life, 4 conditions which affect my life is really getting to me right now. Plus I'm lonely, I've been single coming up to 2 years now and I miss having a relationship but know there is no point in trying to date. I don't think anyone will want to take my health stuff on as part of a relationship.
 
sarahfh said:
Oh no Cat neither of those sound good! I hope your grandmother settles in okay and your bladder and colon give up the fight soon!

I'm definitely feeling mentally crap right now too, I'm really starting to think unless this slightly rocky patch turns into a full on flare that I will just have to accept the IBS diagnosis. I'm just overall sick of being sick and missing out on life, 4 conditions which affect my life is really getting to me right now. Plus I'm lonely, I've been single coming up to 2 years now and I miss having a relationship but know there is no point in trying to date. I don't think anyone will want to take my health stuff on as part of a relationship.
Click to expand...

I know just how you feel, I'm feeling really down right now stuck in hospital after throwing up water and loosing all the work I did to put weight back on. I keep telling myself that it has to end at some point and the time I've lost I'm going to make up for it at some point. And you'd be amazed at what people will do for love just hang in there.
 
Have any of you ever brought up research with your doctors? I read a lot of medical journals because I'm a dork, and I've read tons of studies on surgical treatment for GERD when the patient has esophageal dysmotility like I do. And the things I've read have led me to the conclusion that most patients, statistically, don't have worse dysmotility problems after surgery. Still, that's the reason my doctor gives me for not wanting to do surgery on me. And now I've apparently tried every relevant medication and nothing works, so I'm pretty keen on seeing what other options there are.

Would it be unwise of me to bring this up, you think? I'm not sure how common it is for patients to bring up actual research and question their doctor's decisions :p
 
So we went today for biopsy results and MRE results and...all is normal. Ughhhh! I just want to scream. Not that I want something wrong, but I want some answers. Next step is pill cam on the 24th and then some kind of "dump" test. They finally agreed to put her on Elavil after I about threatened to let them have a turn at the midnight crying in pain sessions. Sorry for the rant but this is soooooo frustrating. Lost another 5 lbs. and still sleeping all day..no energy...I don't see how ya'll do this
 
MommaLlama - ranting is what we do here, no need to apologize! I understand your frustration, hoping the upcoming tests will give you answers.

I'm not having any luck with other PPIs. The Nexium gives me trouble breathing (not because of the Nexium I don't think, but I get a nasty cough when my reflux is bad), so that one's out. So I'm back on Pantoprazole AGAIN, different brand this time, hoping it will work and not give me the crazy dry mouth/mouth ulcers from the dryness. This is honestly exhausting. I was more stable on my OTC omeprazole than I have been the past few weeks.

Summer classes start tomorrow and I feel like complete shit. Still going to try to go, I don't want my life to pass by while I'm at home in bed feeling sorry for myself.
 
I had some bad reflux this weekend too. I way overdid things. So we have a 3 bedroom house, and our smallest bedroom is my little sewing room. It's a very small room (9' square so about the size of a prison cell, hah). We want to remodel it a bit, put in a long countertop along one wall as a workspace for my sewing machines and then have storage underneath for fabric etc. So, I spent a lot of Friday evening & Saturday cleaning and organizing that room. Which meant I was bending over forward a lot to pick things up, and my reflux really hates that. At one point on Friday evening, I vurped the worst that I've ever vurped. I basically vomited, really, but it all stayed in my mouth. There were chunks though! I don't know that I've ever vurped chunks before. Not a fun time. So I made myself stop and take breaks regularly after that. I did manage to get the room fairly clean and organized and I took a ton of stuff to the thrift store. It felt good to get that accomplished even if my body wasn't super happy with me. And it's insane how much crap can fit into a tiny room! I still have more stuff to organize & get rid of, it's madness.
 
Izzie, in regards to your question about bringing up research to your doctor, I think it really depends on the doctor. Some doctors seem to be really receptive to new research, while others seem to think that they always know what's best. It's annoying when doctors don't take research that we've done seriously though, because a lot of the time, we might even know more than they do about our problems. I'm not saying that doctors aren't smart, but we live with our problems every day, and we constantly research them (I know I do at least), and doctors have to know about a lot of different illnesses. Like when I went to my gyno, and she told me that my stomach doesn't really hurt, and that I'm actually just sad, clearly she did not learn about this stuff in her training. Anyway, I don't think I even answered your question.....I kind of just rambled. Do you like your doctor? Does he/she seem like the type of person that would be receptive and willing to listen to the research you've done? If you can bring in specific studies, I think that could help. In my opinion, I don't think there's really any harm in bringing up research to your doctor. The worst that can happen is that they'll just dismiss you and tell you that the research is not accurate.

I'm with all of you in the feeling like crap arena. I can't even describe the feelings I get in my stomach. Usually it doesn't hurt (although sometimes it does), but it just feels like something is going on in there, and it's not good. I'm SO tired of this, and I know all of you are too.
 
That's a good point akgirl. Honestly, I wouldn't say I like my doctor much beyond thinking that she's actually doing her job? She's hard to get a hold of and sometimes says unhelpful things like she can't think of what to do if this one thing doesn't work. I'm neutral towards her, I guess. I can't even get an in-person appointment, everything's over the phone, and I'm over here feeling like I can't possibly live like this and the response I'm getting is "this really should be working".

Well, it isn't, so...

I get the feeling that reflux surgery isn't really done here, they're very very hesitant to do it and in my case where there are some factors that complicate matters they don't even want to talk about it.

I'm starting to really consider looking internationally for someone who does this kind of surgery all the time to at least see if it's an option. But I don't really know how to go about that practically.
 

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