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I think because my partner has dealt with me like this for so long he's so used to me being sick for so long it's kind of the norm now and he works a lot of hours so when he comes home he is very tired. My family live far away so unfortunately I don't have any help from them. I've applied for careers as help from disability but no luck at all. I feel people see me as a really strong person who just goes on through the pain but it starting to catch up on me and people don't seem to understand that stress can trigger IBD. Feeling really lonely I wish I'd more support xxx
 
@Jaz- thanks Jaz I may look that up!!! Apparently there is a health food store around here somewhere, I'm sick of not having a proper cup of tea!!! :) xx
 
ColoradoGrrrl-- Do you get mouth sores too? Mouth sores plus genital sores can be a sign of Behcet's disease, which can also affect the intestines.
 
hi friends. long time, no see. I haven't been this sick in a long time. I've had diarrhea since July 9. I've been out of work for two weeks. if I miss taking lomotil I have huge problems. I'm always sick in the morning after it has worn off. My GP has done stool and blood tests. As is usual, nearly everything came back normal. The only abnormalities were from my limited diet. I'm going to see the GI this Tuesday, but I'm cynical. I guess the good? news is that if I am out of work I can spend days having tests.

Apparently I have "colitis" on both sides of my family. My family gives up medical history in tiny drops. What kind of colitis? I don't know for most except that at least three people on my mom's side had resections (cousin, grandmother, great grandmother). I know the doctors have me in the "it's all in my head" camp, but it's not! argh

if it was I'd make it stop. ugh.
 
Gabi said:
Hi everyone
I hope you are all in high spirits. Just a wee update on my recent progress. Since the faecal calprotectin came back elevated a lot has changed my GI wants to see me again for another colonoscopy and to start treatment for IBD. When I first heard this I was elated but now I'm slowly realising the reality of what I have. Even my doctors have said to me they can't promise me that I will be pain free. I found this hard to take. Gettin diagnosed has been the most traumatic thing that has ever happened to me in my life and now that I am diagnosed I feel weird I thought it would be good things would get better and I could go in to remission but the reality is no body wins over IBD. Was as all losing to it. I really wana go back into hospital so my worries of the day is when to close the blinds or when to get my drip changed. I feel now I though getting a diagnosis would be amazing but now I see even less hope. Having a really tough time with family an work so this doesn't help either and I find my partner doesn't give me any physical support which wears me out so much. I've admited that I do need more rest as I never do. But I just can't stop cleaning etc !
Sorry for the moan I'm jut at a very dark painful place right now xxx
Click to expand...

Gabi I know exactly how you feel, when my FCP came back high I was so happy there finally something to justify how sick I was feeling. Then it kind of sank in that it was going to be lifelong and I would never be able to escape doctors and hospitals etc. I'm also in a similar situation in that my partner is in complete denial. The last time we had to go to hospital he moaned the whole time about how tired he was and how much hassle it was. lol.

Are they treating you on the strength of your FCP result with no other positive test result? Do you know how high it was?
 
Dear Gals'n'Guys,

I might not have Crohns Disease, becos of the fact that I have never had a number of the symptoms that are associated with it, such as, chronic lower abdominal right (or is it left) hand pain, and almost permanent diarrhoea.

However, since my birth, I have had so many Crohns Disease Signs and Symptoms, such as:-

. Unexplained Vomiting and Diarrhoea and Failure to Thrive (according to my Plunket Records)
. Susceptibility to Contracting Flue and Cold Viruses and Bacterial Bronchial Infections
. Skin and Nail Psoriasis
. Childhood and Teenage Lack of Physical Growth and Late Sexual Maturation
. Female Pattern Baldness
. Constant Daily Anxiety (Ranging from Mild to Chronic)

There are probably other ones, but they dont matter.

What I have found to be extremely interesting and helpful to me, since I joined here several weeks ago, are the "Supposedly Un-Associated Un-Documented Symptoms" that so many of you, including myself, have talked about in our posts here.

For Example:-

. Sudden Saturating Sweats that are seemingly unexplained in origin that have been suffered for months and years
. Countless Inconclusive/Negative Blood and Urine and Surgical Tests
. Family and Friend Relationships Fraught With Difficulties (especially between Birth Mother and Child)

Over the past few days, I have done some more goggling, and found out that the medication that I was prescribed and started taking about six weeks ago, affects Adrenal Gland Cortisol secretion and levels, and that it also causes Cholestrol and Blood Pressure levels to rise, and can lead to Diabetes.

Within three days of starting to take 25mg of Quetiapine (Seraquel) nightly, my chronic saturating night sweats began, and became progressively worse and worse, until the point in time came, whereby I recognised the fact that my physical and psychological health was definitely in a down-hill decline, that my body and immune system was apparently incapable of counter-acting it.

I then goggled the arse out of the internet, and I found this forum, for which I will always be eternally grateful for having the privilege of joining and being a part of.

Shortly after which, I got in touch with my GP, for the first time in about 18 months, to voice my concerns and fears about the sudden onset of these saturating night sweats, and the marked effect they were having upon my quantity and quality of restorative sleep, not to mention other negative aspects, such as, dehydration from the excessive body fluid loss etc.

I will never take another Quetiapine Tablet ever again in my life, becos if a single nightly dose of just 25mg is capable of causing my Adrenal Gland Cortisol levels to be affected so quickly and drastically within such a small space of time, and raise my Cholestrol level sharply, then I believe that Quetiapine (Seraquel) is a dangerous and life threatening drug for someone like me to have been prescribed.

The last thing I am going to write here tonight, and share with you all, is the fact that my eldest Son (aged 24) has been verbally and emotionally and physically abusing me for at least the past three years.

I am not happy disclosing this information about myself to you all, becos I am ashamed and embarrassed admitting it.

However, I was verbally and emotionally and physically abused by my own Mother as a child and teenager, and even during my adulthood, in spite of the fact that we didnt live in the same house together, and were often estranged for many months and sometimes even years from one another.

I gravitated towards, and ended up marrying a man who was also an emotional verbal physical abuser, and my next partner was an emotional and verbal abuser (minus the physical), and my eldest son morphed into an emotional verbal physical abuser following onset of puberty, and increased male testosterone production.

One day, when I win Lotto, I will be able to afford to have a private hospital surgical procedure done, that might definitively prove one way or another, whether or not I was born with a genetic predisposition towards developing Crohns Disease.

Until then, I am just gonna focus on doing my best to stay alive, and keep things like my anxiety and night sweats and psoriasis and stomach pains and alopecia and lack of BMI under control and in check.

A few pages ago, someone wrote a post that contained lots of stuff in it, and they said that they were worried that their post contained TMI, but admin responded by saying that there was no such thing as Too Much Information in here.

Shit, I hope that this is true, becos this post of mine, is definitely about to put the whole TMI theory to the test, as, one of the "Usual Social Un-Said No-No's" is that peep-holes shouldnt raise the ugly subject of domestic violence and abuse.

Whilst typing this post, I have been half-pie watching a repeat screening of the movie "Avatar".

Guess it wont be long before its sequel gets released.

Love from Frankie xox :kiss:
 
Hey Everyone!

I cannot believe it has been many months since I have dropped by. I feel like the worst person right now. :( I used to come here while at work, then left my job and somehow just forgot about my old routine. Then my disease has been causing chaos, and we are moving...ugh. Bad Allie for forgetting the forum!!!!

I hope everyone is doing well...I keep up with Cat, Star, and Carrie on Facebook, but I hope everyone else is doing good too!

So as far as my disease goes, I am in a major flare right now. I seem to only be surviving because of my muscle relaxers for my chest pain, tramadol to take the edge off my stomach pain, and caffiene for the fatigue. On June 25th I had a procedure called a plexus nerve block, where they put a large needle in my spine and injected numbing meds into the area of my abdomen where my chronic pain is. Basically they are trying EVERYTHING to try and keep me away from pain meds, and it is driving me crazy. I keep telling them my pain is not being helped by the tramadol anymore, and they literally told me it wasn't their problem. WHAT?!? They are a PAIN management clinic! Its not like I am saying I have a pain they can't explain and that they should give me pain meds even though they don't know whats causing it...we know what is causing it now. My behcets has attacked the main artery in my abdomen, and it and the area around it are extremely inflamed. You can feel the inflammation by hand and it is warm to the touch. Yet they won't help me. When I told them it was affecting my quality of life, that I have a hard time being normal, they told me that was a mental health issue, NOT a pain med issue. I was SO insulted. Don't I deserve to be comfortable?!?! It is NOT normal to want to check myself into the hospital. I know it isn't.

Anyway, the procedure has put me into a major flare. My German rheumy put me on 30mg pred and doubled my immunosuppressants, but it is not working as fast as I would like. We are in the middle of moving from Germany to Atlanta, GA, so I have a lot of stress keeping me from getting better.

Anyone know of a good pain doc in Atlanta? Anyone know the magic words to say to a pain doc so they will stop all these crazy prodedures and watching me in extreme pain and finally let me be comfortable? I am getting really desperate here. :( You would think being diagnosed would make it where they would stop treating you like a drug seeker....well, I thought WRONG. Would they do this to a lupus patient? To a Crohn's patient? I feel like they wouldn't. :(

Anyway, sorry for the rant, but thats how things are going over here. I saw at the top of this page that someone is asking about behcets... I would be happy to answer any questions if someone undiagnosed is looking into the disease. None of my american doctors are even taught about it, they google my disease every time they see me, so I always feel like I know a lot, lol.
 
Frankie - that is awful about the history of abuse you have received, and I can understand why it would be hard to talk about. But don't feel ashamed or embarrassed about it.. and I am so glad that we make you feel comfortable enough to do so :hug: we are all here for you. Has your son ever apologised for his behaviour? Or is he not aware that he does this?

Carrie - sorry to hear your doctors are doing the whole "its all in your head" thing... it is so frustrating - im guessing you've told them about your family history?

Allie! - welcome back! Dont worry about not being here lately, you need to look after yourself first and foremost. That sucks you are in a bad flare :( what other pain meds have you tried? I cant stand tramadol (makes me so ill.. I have to lay flat or else I'll pass out)
Moving is stressful at the best of times let alone when you're moving countries and very ill :(
Hopefully your new docs can offer some different treatment for you xx
 
Before I was diagnosed and running around a ton of ER's during my first big flare in 2010, I was put on hydrocodiene, oxycodiene, and even diluadid in the hospital. They all worked very well. When they thought it was a hernia, I was put on percocet (oxycodeine) from diagnosis till the outpatient surgery. I was able to plan my wedding (which was 5 days after the surgery) and continue working because of the pain meds. And no, I obviously did NOT get addicted. Tramadol did work very well in the beginning, but like I said, I've been on it for THREE YEARS. Its time to move up. I'll go back down to it once I'm off of it for awhile and my tolerance goes down, I really will. And now that I'm on gabapentin (nerve pain med), they won't have to use as much of whatever pain med they put me on. They obviously don't understand that and think I just want the drugs to get high or something, which is insane..I hate the feeling of being intoxicated or feeling "out of it", which is why I don't drink alcohol. I won't even take cold meds because of the side effects like that. But my pain is keeping me from walking my dogs, from hanging outside the house with my husband....basically everything but being on the couch. And it is NOT a mental block. If I take enough pain meds I do what I need to do. Oy. Oh, and I understand what you mean about the nausea with tramadol....I don't eat when on tramadol. I usually take more tramadol at night, because my pain gets worse as the day goes on, and I rarely eat dinner because of it. It frustrates my husband so much and I am underweight. I try to eat more food in the morning, or food with more calories, to counteract it.
 
Allie and Carrie! Long time no see (on here anyway) you two! I know from your FB posts that both of you haven't been doing well lately - you probably know from my posts that I haven't, either. After 2 lovely years in remission, I seem to be flaring again. In May I started passing blood sporadically, something that hasn't been a symptom for me in the past. I'm getting other new symptoms too which are not the norm, and I'm not getting a lot of my "typical" flare symptoms (no night sweats, no chills, no weight loss, I'm having some d but only like 2x a day instead of 20x). But I am getting some of my typical flare symptoms, paleness and fatigue and nausea, and I've had one episode of having to get up in the night to run to the bathroom. So I really don't know if this is the presumed IBD flaring up or if it's something new. I see my GI on the 7th so I am going to ask for his opinion and a colonoscopy. On top of this flare, my arthritis has also been getting worse lately. I saw a rheumy, who sent me for an MRI. The MRI of course came back normal so now the rheumy doesn't know what to do with me - he suggested more physical therapy and for me to follow-up with my GP. So I'm back to square one with the arthritis and I'm completely puzzled as to what my guts are up to. Yay.

Carrie, I know you've had some terrible symptoms in the past and there's no way it's in your head. I remember you talking about waking up to heave, which sounded absolutely nightmarish to me. I hope your doctors take you seriously (or ideally that you can find better doctors), and I wish you lots of luck for your appointment tomorrow. I hope it is worthwhile and gets you somewhere! Please keep us posted.

Allie, I know you're in a stressful time right now with the move (I saw your posts about the movers not showing up, yikes!). I hope you can get a good doctor when you move back to Atlanta. If I'm remembering right, didn't you mention that you had a doctor that you really liked in Atlanta when you first got sick years ago? Any chance you could see that doctor again? I'm not even sure what type of doctor you see with Behcets - rheumy? Or do you still see a GI too? Is your husband finished with the army now, and if so, does that mean you need to get different insurance? Yikes, so much to think about. I hope the move goes smoothly (or smoother than it has been going) and that you can relax once you get back home to the US. Hang in there!

How's everyone else doing? I'm feeling blah. I think I pulled a muscle in my left shoulder on Wed/Thurs last week, and it still hurts. And on top of that, yesterday I woke up with awful mid-back pain that hasn't gone away either. I had to spend the day with my parents & brother, which is stressful enough by itself, and I was in this terrible pain on top of the stress. As soon as my parents walked out the door to leave, I felt my guts cramp up and I had to run to the bathroom. At least I held it together until they left! So yeah, I'm not doing so well lately. Counting the days until my GI appt.
 
I've been waking up in pain with diarrhea for three weeks. During this time I'd say I've heaved upon waking at least twice a week. It's particularly stressful because there isn't even any food to bring back into my stomach for the vomit. It makes it even more severe in alot of ways :/

I've also lost 10 pounds since July 9. I can stand to lose a lot of weight, but you know it'll just come back on once they control my symptoms.

The doctors have tried to tell me it's my nerves... seriously? then treat my damn nerves, because this is ridiculous.

I'm also really worried I won't get paid tomorrow since I was put on leave. That will be disastrous.
 
Allie-- Can you tolerate Fentanyl? I wonder if the doctors would consider a Fentanyl patch for you.

I'm doing so-so. I had an appointment with my primary care last week, and he's really concerned about the bone mass decrease (that I'm so close to osteoporosis). I'm seeing an endocrinologist tomorrow about that and going off a med. I'm really tired of doctors appointments.
 
I've been back on my eliminatio diet for a few days. It seemed like after the surgery it was getting better, but a few days of eating stuff annoyed my gut and now I'm calimg things down again. THe colonoscopy is only a couple of days away so hopefully I find something out. :( I did manage to gain back about 6 of the pounds I lost during my recovery from surgery.
 
Cindy, I'm glad you were able to regain some weight, that's encouraging. That's too bad that you're back to a limited diet though, I was hoping you'd be able to keep eating what you want. Hopefully the colonoscopy will be illuminating and you can get some proper answers about what's going on. Good luck with it! What prep are you doing for your scope? I'm hoping to have a scope soon (well, hoping might be the wrong word, ha ha) and I'm curious to know what the more tolerable preps are. I did the Gatorade & Miralax prep twice, and although that was easy to get down, it made me super dehydrated and I needed IV fluids both times, so I'm not looking to repeat that experience again. Let me know if you find a prep that's easy to get down and not too dehydrating!

Carrie, nerves??? Sheesh, that's just lazy and wrong of your doctors to say that. As for the weight loss, even if you do have weight to lose, losing 10 lbs unintentionally in less than a month is a lot! And they should take that seriously - I know my GI gets worried if my weight fluctuates at all and he always asks me how my weight has been. I hope you can find some better doctors, because your current ones sound like they've given up or are just totally lazy. I hope you can get paid too! Does your work have any type of short-term disability leave?

Chickadee, that much bone loss, that's awful! I hope you don't end up with osteoperosis. What shape are you in health-wise lately, are you able to do any weight-bearing exercise? I had quite a lot of muscle mass loss and I'm assuming bone loss as well from being so sick/malnourished and also from being on steroid treatment and GERD meds. I've been lifting weights regularly for a couple years now and my muscles & bones are better than ever (well, except for the shoulder/back injuries right now anyway, and also excepting the arthritis). I know I blab on and on about exercise, but it's really helped me a lot in numerous ways. And weight-bearing exercise can add both muscle and bone mass, it's great! I don't know where you're at health-wise lately or if you're able to exercise, but if you are, I strongly recommend weight-bearing exercise as an alternative to osteoperosis medication. Just my two cents of course. :)

My back is feeling somewhat better this afternoon! But my shoulder is feeling worse. :p Just can't win. I was reaching for something in my car and I must have moved my arm wrong or something, and suddenly there was terrible pain in my shoulder/bicep area. I can't even tell if it's the shoulder or the bicep, it's like in between the two. All I know is, if I lift something even slightly heavy (like a water bottle) then there's discomfort, and if I move it wrong then it is very painful. I'm going to attempt to do yoga tonight and I'm probably insane for that, but yoga seems safer than lifting weights (I think?). I haven't worked out for like 5 days now so I'm going a bit stir crazy, I need to do something active and cardio hasn't been my friend lately, and weights doesn't seem wise, so yoga it is I guess.
 
We do have std, but I am not clear on when it kicks in, and what happens before that.
I am hoping the combination of the weight loss and being on medical leave will make them look closer. If I'm not happy with my appointment tomorrow I'm going to make an appt with a GI at Cleveland Clinic.
 
Thanks to everyone who replied to me you all give me such strength and support.
Isgs-I'm not sure how high it was they just said elevated. My GI said I was a nightmare to scope so he said he would like to do another colonoscopy (4th one) but he might not want to put me through it again. So they have requested another Fecal test to be sure and then he said we can start treatment. He said my symptoms are far to sever for IBS and my bloods are always low on everything!
I was at my GP today apparently I look awful (thanks for the vote of confidence!) she wants my potassium levels done as they were very low a couple of weeks ago. She said if they are low again she might admit me to hospital. I kind of dread and look forward to hospital now- such a mixed bag. Does anyone else have low potassium here? I have the shakes really bad and look like a chronic alcoholic :/ it's one of the things that gives me away to people who don't know I'm sick and they always say are you cold or nervous!!! It's so embarrassing. I really want to start treatment soon, be in the hospital or out.
 
Carrie, I've heard good things about Cleveland clinic so I hope they can help you if all else fails. My understanding of short-term disability is, at my work anyway, it kicks in once you're out sick for longer than a week, but I think you have to talk to HR to let them know that you've been out sick and need to go on STD. So I'd say talk to your HR dept and let them know the situation, hopefully they can straighten things out. Good luck hun, I'm living paycheck to paycheck too and I'd become homeless pretty quickly if I suddenly stopped getting paid, so I understand that type of financial worry. Add chronic illness (and doctor bills) to that equation and it's suddenly a very bad situation. I really hope the financial stuff falls into place so that you have one less thing to worry about.

Speaking of financial stuff and health worries, (long vent coming, sorry) my hubby confronted me somewhat angrily recently, asking me, "When are we going to have a kid?" Apparently he's feeling old (he's 36, I'm 33) and he wants me to get off the fence already. But I can't, I just can't. He barely works - he does some freelance work here and there, and he works very part-time (usually 1 day a week) for minimum wage in a costume shop. He feels he needs a job where he can be artistic (he went to school to be an animator). But there aren't any art/animation jobs out there - there's fierce competition for the few jobs there are, so a person like my hubby who graduated from art school 11 years ago and isn't up to date on the latest 3D software and all that stuff, isn't even going to be considered. And he won't apparently even consider getting a regular job, like at the hardware store or whatever (even though they're hiring and pay good benefits and pay above minimum wage and pay time and a half for weekends, and yes I've mentioned it to him multiple times).

So the financial strain is all on me - I *have* to keep working or we'll lose our house, and I have to keep working for the insurance benefits too. And I've been flaring for a couple months now but have barely taken any sick days because I feel pressured to keep working. And now he wants me to have a kid? I cannot, I just can't. I'm sorry he's having a mid-life crisis or whatever but I can't put my body through more torture AND bring another human into our crappy situation. I can't risk not being able to work since he apparently won't step up in that regard. I can't put myself through what would probably be a high-risk pregnancy and likely screw my health up worse than it already is. I'm on the fence as to whether I actually want a kid, but physically and financially, I just can't do it. And if I did have a kid and they inherited some of my health problems, I would be so devastated, it's just unthinkable. Does anyone else feel like this? Like, maybe if the situation was different, you'd be all for having a kid - but there are so many compounding factors that the future looks downright bleak when you even consider pregnancy. I literally told him he can leave if he wants, but I just can't do it. He said he's not going anywhere, but I can tell he's disappointed. I'm mad though, he's basically been at home goofing off for the last few years since his freelance work mostly dried up. I've been working and working. Now he wants me to do something else so that he can play at home, with a kid. While I'll still be working I'm sure. Sorry, this is a long vent and I'm not sure where I'm going with this. I guess I'm mad both that I have to work even though he's the healthy one, and I'm mad that he thinks it's acceptable to ask me to put my health on the line just to create a person who will strain us further financially, may inherit my sicknesses, and will probably just grow up to resent us. Am I justified in being mad about that stuff? Or am I just lashing out because I'm flaring, do you think?
 
Gabi, my potassium is usually borderline-low. When I sweat, it drops down into the low end, and when that happens, my feet and toes cramp up terribly sometimes. Of course I sweat when I work out, so most workouts end with bad toe/foot cramps. It's not pleasant, but it's usually okay as long as I'm not sweating. Do you know what your potassium level was last time? According to my latest bloodwork from a few weeks ago, my level was 3.6, and it says anything below 3.5 would be considered low. So I was just barely in the normal range then (and I wasn't sweating then).

I'm glad you'll be getting some treatment soon - did they say what type of treatment? I hope that either way, hospital or not, you can get some good relief soon and feel a lot better. I know it's been a long, hard road for you, but it sounds like relief should finally be on the horizon. Let us know what treatment and how you do with it!
 
HR knows. I had to call this Matrix place who manages STD. It's just confusing as to what happens.. in any case today marks the first day of my third week out of work so I'd assume STD is kicking in.. I'm still waiting for the paperwork though.

All of my other doctors are Cleveland Clinic. I had a terrible experience with a GI @CC which is why I switched to another group. From what I've heard he is no longer with the clinic which is why I'll consider going back to their gastro dept.

And yeah I hate living paycheck to paycheck. It's hard to be out sick when that is the case.. no matter how sick a person is. the mortgage won't get paid if I don't get paid, thats what I'm most worried about. So if I get paid tomorrow then I should be able to relax a little about the $$$. It's not like I'm spending it on frivolous things like, oh, food. damn body. we're about to try to eat some rice.

Your hubby definitely needs to update his education. You know I work for a creative organization? We barely hire any creative folk without extensive graphics design software experience. We used to, but all of the designs are being moved into an image database and will be all on the computer.

My wifey is an adjunct english professor... she makes .. a pittance. no benefits. She can't pay the mortgage. not even in an emergency. I'll have to get a loan if it comes to that.. so I totally understand where you are coming from. I don't see how he can get on you to have a kid when a: you're pretty damn sick, and b: you make the money. What exactly does he think happens when you go on maternity leave? It's just like going on leave for being sick as far as pay and all that jazz. Not to mention the potential complications you could have during your pregnancy due to having to not take medications. You are totally justified in your last paragraph there... I didn't even read it before I wrote what I did above. I don't understand why he won't get a job... even K would get another job if she had to, despite hating office work of all kinds.

Does he not get it?
 
as an aside... you know your nausea is bad when you have to leave the kitchen because the smell of cooked plain white rice is too intense for you. meh
 
Hello my lovelies!

How's everyone today?

Cat how's you? Are you okay now with your hubby? Babies are a massive decision and you're right to not just want to "go for it" till you guys are financially okay. I don't think some men understand what a woman's body goes through during pregnancy. Xx

So I don't know if I'm alone on this but last night I had the aircon on and a fan on full blast above my husbands and my bed and he was fine but my whole body was on fire like I couldn't sleep, I didn't really sweat so I would guess that's a hot flash? Well it wasn't a flash I was hot all bloody night ha but just wondering if anyone else gets that?

I've been in very severe pain of late, so much so that I could barely stand up during a burst of incredible pain on Sunday, had to sit down at my friends party. Probs shouldn't of gone but I hate letting people down and I might of been okay.

So yeah just checking in on everyone xxxx
 
Cat.. I am not surprised you feel stressed and frustrated about this. I think personally, its unfair of him to tell you to get off the fence with what you are already dealing with. You are in a flare..and you are currently the bread winner. So now is clearly not the time to put you on the spot with this.

Perhaps though (and im not taking his side) he has wanted to talk about this for a long time? And maybe he is internally stressed with not having the work and watching you being so unwell. Having kids is a touchy subject for most people. I have always known that I wanted a family. That was my only goal in life.However.. I had a horrible pregnancy (as you know) and now I dread ever being pregnant again (though I know I'll do it.. because my daughter is so worth it).
Maybe you could approach this subject again yourself.. so its not the elephant in the room. Explain again, your reasons for not wanting a kid right now.. but that its not "off the table" and when those reservations are sorted (his job and your health) you can discuss it again?
I think you just need to be open, and he needs to understand.. you love him, you understand his desire to have kids.. you dont want him constantly thinking "she doesnt want kids.. I cant talk about it, in case I upset her or make her ill" and then it snowballs in his mind until he blows - like he just did.

I really hope you are both able to resolve it.. sometimes a good blow out of frustrations is a good thing to clear the air.

:hug: hugs to you cat xxx
 
Cat, I find myself being really frustrated for you. For your husband to expect you to take on the burden of carrying a baby with your health situation and financial situation is inexcusable. BAsically, unless he is willing to step up andnd find a job where he can support the family he has no right to ask you to take on a pregnancy. Perhaps he should have thought about that when he made the choice to stay on a career path that doesn't provide him with viable work. Especially knowing that you most likely can't carry a baby without going through agony and likely missing work, he needs to show he's willing to do his part by getting a job to support you and provide insurance. BEcause of my back issues and many other health problems, it turns out I'm lucky that I had my kids in my teens because I certainly couldn't carry a baby to term now. My husband understands this. AFter my brain tumor was removed he told me he wasn't owrried that I couldn't do much for his birthday coming up, because he was grateful just to have me here. Perhaps your husband needs to get some perspective on what he has in his life adn just how much it is worth to him.
 
Bluebird - I hate the feeling hot thing. I get that a lot. My body cannot tolerate heat in the slightest... its frustrating. Because my face sweats!! And I get so self conscious.. im naturally very fair - and I never used to sweat like this before my bowels started causing much more problems.

I can just sit there at home.. fanning myself because im roasting. . And everyone looks at me like " whats up with you? Its not hot!"
 
Hi Cat! So my prep is baisically taking a Dulcolax laxative and then drinking Miralax mixsed with Gatorade (not red). Then I hae to take some Magnesium Citrate the day of theexam.
Not so much looking forward to that fun part! :D
 
bozzylozzy said:
Bluebird - I hate the feeling hot thing. I get that a lot. My body cannot tolerate heat in the slightest... its frustrating. Because my face sweats!! And I get so self conscious.. im naturally very fair - and I never used to sweat like this before my bowels started causing much more problems.

I can just sit there at home.. fanning myself because im roasting. . And everyone looks at me like " whats up with you? Its not hot!"
Click to expand...

Yeah I was tossing and turning all night, then my husband was trying to cuddle whilst he was a sleep which is cute but not when you're boiling LOL like get the #@*& off me hahaha
 
Haha! I get like that with my hubby.. we bought a superking bed (6ft wide) last year. BEST. PURCHASE. EVER.
I can lay arms and legs stretched without having to touch him Haha! (I do love him)
 
Thanks guys for the support, I appreciate it so much. Yeah, me and the hubby are okay, we'll get through this. I have a hard time in social situations and it sometimes takes me a long time to process really difficult conversations like that one - the conversation was over a week ago and I've just been thinking about it ever since. I feel really awkward asserting myself and my needs in conversation, it's easier to cave and let the other person have what they want so that I can just end the conversation. :p But I know that this is something I can't cave on, because it can potentially affect my life & health in numerous ways, and I just can't go blindly into a situation which could cause me harm and homelessness.

I think part of hubby's problem is that his best friend M's 19 year old step-daughter is pregnant - so M is going to be a grandfather very soon. Nevermind that M's ex-wife was 13 (yes, 13) when she had her daughter, so it's 2 generations of teen mom happening and that's the only reason that the M is becoming a grandfather so young (he's like 37 and his ex-wife is my age, 33). (I should also note, even though it's his step-daughter, she's closer to him than she is with her own mother or bio father, so M considers her a daughter and he considers her unborn child to be his grandchild - when M left his wife recently, his step-daughter went to live with him, instead of staying with her mean/crazy mother.) So anyway, hubby is feeling like he missed the boat on having kids as his friend not only has kids but now a grandchild on the way too - hubby feels like he's so old because of this. I think that's what caused this whole issue in the first place. He's panicking, he's said that even if we do have a kid now, that he'll be 50 when the kid starts high school and that's just so old. He's said he wishes he had a time machine so he could go back and have kids when he was not so old. Ugh and sheesh.

My opinion is, I don't feel like we're too old or missed the boat. I have multiple friends who are my age or even a little older who are just having kids now. A friend from work had her first kid at 33 and her second at 35, and another friend is 34 and just had her second baby. I don't see a need to rush rush rush right now - if I could get back into remission, and if hubby could get any type of job at all where he makes more than minimum wage and works more than 8 hours a week, that'd be lovely, and then I think I'd feel more open to considering the idea. But right now I'm basically in "just get through this" mode and he's not helping at all, you know? I'm doing everything I can to control this flare (I haven't passed blood in like 2.5 weeks now, yay) plus I'm working full-time and I still have to take care of stuff around the house, run errands, and do all that other crap that life requires of me. The thought of having a kid while flaring and working full time? I get exhausted just thinking of it. Financial implications aside, a kid would cost so much money - and that's true even if the kid is healthy. If I had a kid who was sick like me, or disabled in some way or Autistic or whatever, that would cost boatloads more for a lifetime of care. And that is the stuff that really scares me. It's all terrifying to think about. And like with social situations, I go to my coping mechanism - it's an easier out to not have kids, than it is to even consider the negative consequences that could happen by having a kid.

I'm really rambling again but I hope that all made sense. It helps me a lot to just get it out there into words. I'm so bad at talking about this stuff but I can at least write it somewhat coherently and that helps me make sense of it all. Thanks you guys for reading and for being there and for your input, it really helps a lot. :)
 
You are right.. neither of you have missed the boat. My hubby was 30 when little one was born. And she was a "surprise" haha. My mum had my little sister when she was 43 .. my sis is 8 now. Plus my mum had a sterilisation after I was born.. and had it reversed 7yrs later haha!

I think it is much more common now for people to become parents in their 30's as opposed to 20's now

And wow.. 13 huh? I was still playing barbies at that age and wasnt interested in boys in the slightest haha

I forgot to update you all on my follow up GP and rheumy appointments.
GP let me talk through the whole experience blah blah.. then precribed anti depressants.
Then rheumy appointment (new rheumy) said he'll see me in a year :ybatty:
He's right in a way.. the sulfasalazine is helping loads with my joints. And he told me to take 1, 3 times a day.. instead of 2 in the morning and 1 at night. That way it was less of an impact on my bowels. Which I think could be helping - but jury's still out on that one..
This new rheumy says I shouldnt see another GI until I see how this med change goes.. because (this is what he said) "if you did have IBD.. then it would work on your bowels too"
He also confirmed my B12 deficiency is not caused by my meds.. and I would need the injections for life. JOY. (When my GP said it was caused by my meds) haha..

Anywho.. lets see how I go with the meds. I would like to come off the propranolol too at some point.
 
Hi bozzy! Slowly healing up. I'm having an EEG today because they think that I am having some sensory seizures from the surgery and the residual blood. it makes my fingers numb on my right hand and causes some numbness in my mouth on the right side and slurs my speech a little bit. My other healing does seem to be doing well, got my staples out Thursday and my scar looks pretty good. I thought for awhile that my eating issues were gettting better but when I tried to eat what I wanted things flared up again. So Im hoping that wehn I have my colonoscopy next FRiday they find something! :)
 
useless waste of time GI appt. He agreed to get me a ct-scan, but he won't do any other kind of test. He only agreed because I lost it on him. He told me that it's not all in my head, it's probably what they call functional bowel disease. There's nothing he do to help me feel better. I should pursue alternative treatments and go to psychotherapy a minimum of once a week specifically for this GI problem. When pressed for a diagnosis he said intractable nausea and vomiting. He ended up giving me a number for a second opinion, but he clearly thinks it's a waste of time. He told me that at some point I will need to accept that they're not going to find anything else, that there's no cure, no treatment, and I need to learn to live with it.

I lost it.. I cried and cried and cried. I'm still crying.

oh yeah.. he told me to meditate more and use more cinnamon, ginger, and something else.. I'm not thinking very clearly.
 
Oh Carrie, I'm so sorry hun. :( That sounds like an awful appointment and I would be crying too if it were me. Really, meditation and cinnamon, and psychotherapy!?? Ugh. I believe I've heard that "functional bowel disease" is just another term for IBS. Wow, that doctor sounds like a piece of work. It sure does not sound like IBS to me and I can't believe anyone still tries to get away with saying it's all in your head/you're crazy. That's just wrong, I'm so sorry hun.

Did you at least get paid today? Some good news in that regard I hope? And I'm hoping the bad appointment today just means that you get to go to Cleveland Clinic and see a (hopefully) much better GI? Hopefully there's a silver lining to this crappy day.

Ugh, that just makes me so mad! Don't get me wrong, I'm all for mindfulness, I sort of get meditate-y when I work out - I focus very hard on my body and what's going on inside of it and how can I strengthen it and make it work better. But sheesh, I certainly don't think anyone can cure themself or get into remission with exercise or meditation - I couldn't even keep myself in remission and I was working out every day for awhile there (plus I was on Asacol/Delzicol - so the combo of meds and exercise didn't do it either). Ack, I'm so mad on your behalf! Any doctor with half a brain wouldn't have said any of that BS to a patient!

Sending you a big hug. I wish I could say something to make it better. :(
 
I had my dates off.. I should be paid at midnight/wednesday morning. I managed to get into my adp account and it looks like a check was cut so I should be paid.

I meditate. I use alternative treatments. he was totally blowing me off.
 
Rome II IBS criteria do not have two out of three. it's never relieved with defectation. It only sometimes occurs with a change in stool frequency. stool form varies regardless of how I feel.

"The Rome II diagnostic criteria for IBS include at least 12 weeks or more, which need not be consecutive, in the preceding 12 months of abdominal discomfort or pain that has two out of three features: (1) Relieved with defecation and /or (2) Onset associated with a change in frequency of stool; and/or (3) Onset associated with a change in form (appearance) of stool. Supportive symptoms of IBS include (a greater than 25% occurrence of) (I) Fewer than three bowel movements per week (II) More than three bowel movements per day (III) Hard or lumpy stools (IV) Loose (mushy) or watery stools (V) Straining during a bowel movement (VI) Urgency (VII) Feeling of incomplete bowel movement (VIII) Passing mucous during a bowel movement (IX) Abdominal fullness, bloating or swelling. (1)"

I also have three of the red flag symptoms listed on this page: http://en.wikipedia.org/wiki/Rome_process
 
I am literally so annoyed. I just got back from my GP and I caught a quick look at the letter my GI sent. 'There is no bleeding or mucus' - I've been bleeding for 5 years?! How am I supposed to get diagnosed and get proper treatment when the doctors won't even LISTEN to what I'm saying? Disgusted right now.

Also, even though I've been hospitalised twice and told my condition was life threatening, the GI is saying my condition is not serious enough to treat. Honestly. The mind boggles.
 
Isgs, I understand your frustration. the first doctor I saw for my brain tumor said in the report he wrote that I did not hae a seizure and might have just "assumed" it or passed out. He also said that I wasnt having headaches, which I was. I'm glad I got a second opinion about it since it resulted in saving my life. My Gi now says that I have some symptoms of Crohn's but a lot of stuff doesn't match so hes' not sure I have it, even though I was previously diagnosed with it. Just goes to show not all doctors know everything or agree wit heach other.
 
Wow, that's awful that you guys had incorrect information put in your files! I guess I am lucky in that regard, my GI did put "IBS" in my file (he feels I have IBS and IBD together, I disagree) but other than that all my info is correct to the best of my knowledge. I like emailing my doctors for this reason - I save a copy, so that I have everything in writing. That way if something gets screwed up later, I can whip out the email and show them.

Carrie, I have red flag symptoms too - I have had 3 of the red flag symptoms also (unintentional weight loss, waking up to run to the bathroom with diarrhea, and blood in the stool - the blood is relatively new, it only started in May of this year). I also get chills in a flare although I never seem to actually have a fever. I'm thinking I read somewhere that dehydration is another red flag symptom, and I have had that one frequently as well. It seems like so many doctors just outright ignore the Rome diagnostic criteria and will lazily slap an IBS label onto anyone with gastro symptoms though, and that sucks. It seems clear to me that many, many people are erroneously diagnosed with IBS when they have something inflammatory/more serious going on. It's frustrating that that happens so regularly and that we have to fight so hard for real answers if we (rightly) don't accept the IBS diagnosis.
 
I "spoke" (we email) to my GP this morning.

My blood counts are getting weirder so I have to go in today to have my iron checked. I told him I want to go off all of my daily medications. I told him my GI doctor seems done with me and I'm looking for a new one. I'm still pretty annoyed from yesterday.
 
Hokay... whew long week so far! I love this forum. Thank you all for posting, answers so many questions. I feel like I know you all already with so many commonalities.

I made that Dr. Apt. My gp ran a cbc and occult sample and referred me to a GI. I couldn't help but think why did I wait so long, coping, dealing, ignoring this?!... it made me feel silly and probably made my dr. Think I'm a nut for not stressing how bad my intestinal issues are the first time I saw her.

Cat - Thank you for welcoming me :) I have to say that I do have insurance now, I just didn't when I was 21, which led to the infected gullbladder.

My results are back on cbc and occult... both normal. Not surprised on that one, I have had back problems once so bad I couldn't walk for two weeks and you could see the inflamation and all my test came back normal(except xray showed arthritus) My gp is still sending me to GI *crosses fingers* That they figure this out. Having control over my body again would be nice :)

Thank you again.
 
Actually, your doctor probably wasn't too surprised. People don't like to talk about certain topics if they can avoid it. How long you live with it before you realize you have to do something is different for everyone.

The other thing is that most people will unintentionally downplay your concerns. Oh it's just the runs, eat this/do this and it'll get better. So it leaves people in a situation where they continually question the severity of their problems. It makes it that much harder if your doctor does it to you. If you've had that experience before you might even be more unwilling to broach the subject.
 
Hi again Pantaloons! I'm glad you do have insurance now, and I hope you can be seen by a GI very soon. Yeah, I think we all tend to underplay our symptoms, even to ourselves - I'm not sure why that is. I've said things like this to myself so frequently in the past, "I have awful symptoms and I feel like I might be slowly dying... then again I can still work, so maybe it's not so bad?" :p Try not to underplay your symptoms if you can help it, let your doctor know exactly what is going on when you see the GI. And tell them ALL the symptoms you have, even if some things don't seem related to your digestive system. If you do have something like Crohn's, it can cause all sorts of "extra-intestinal" symptoms as well, so if you have skin issues, eye pain, joint pain/arthritis, migraines, etc, let the GI know about all that too. Good luck with the GI and keep us posted!

How's everyone else? I'm feeling okay today. The guts are more or less behaving themselves, the arthritis is being quiet-ish, my back pain is pretty much gone, and my shoulder pain is a lot better. I no longer feel sharp stabbing pain whenever I move my left arm, so that's a definite improvement! :p It's just started pouring rain here. In a bit I'm going to go curl up on the couch with a nice cup of chamomile tea and my crocheting, and I think I'll turn on the fireplace and watch a movie. It's a good evening for relaxing! :)
 
*Cat-- Unfortunately, I can't really exercise right now, and I know that's one of the reasons for the bone loss (super-close to osteoporosis at 35). However, I'm going to see a PT in a couple of weeks, and I'm hoping that we'll be able to come up with something that I CAN do, even if it's really simple and gentle, to start to build up my bones and muscles. Right now, even if I just walk around the block, I end up feeling so sick that I'm then in bed for a number of days. So...we'll have to start really slowly. I think I might be able to do better with light resistance or weight training, as opposed to aerobic exercise.

*Carrie, Isgs and Cindy-- When I have requested copies of my medical files or have gotten copies of letters/reports sent from one doctor to another, I have found a frightening number of flat-out errors, not even taking into account things with which I disagree. I'm now making it a point to ask for copies of things more regularly so that I can correct errors as quickly as possible. Some have been pretty significant. I think that a lot of doctors are not good listeners.

*Carrie-- I'm really sorry about your experience with the GI. I know how depressing it can be to hear that type of dismissal. :( I'm glad you're looking for a new one. I also tend to get the "IBS" label, and I also have 4 of the "red flag" symptoms:
-Pain that awakens/interferes with sleep
-Diarrhea that awakens/interferes with sleep
-Blood in the stool
-Weight loss (lost 35 lbs when I first got sick...though slowly gaining some back)

I don't know what I DO have, but I don't think it's IBS. I hope we all find the answers we need and treatments that help us feel better.
 
yeah, I haven't had blood in my stool as far as I can tell. I don't know if the dr did a fecal occult blood test. I didn't find any results for one when I was looking at my test results earlier. So far my regular doctor seems to be very involved in my current issues. He has not once tried to invalidate any of my concerns during this current issue. In the past he would explain and give me information to read over if necessary. I was really getting ready to leave him, but he's stepped up to the plate recently.

I'm still trying to get in touch with the new GI department. I had the hardest time trying to make appointments today!

In good news.. I've eaten more today than I have cumulatively over the last 3 days, if not longer. It's really painful. It makes me nausea act back up, and I start sweating. But basically the minute I swallow my first bite my entire digestive tract starts cramping/spasming/tightening up. That lasts a few hours from what I can determine so far. This will be my third time digesting something substantial. late last night I managed two eggs. This afternoon I managed another three eggs. I just now had some soup and bread. The eggs hurt way worse than the soup and bread, but I don't want to end up getting an iron shot. I heard they hurt like mad! I don't like needles. I'm becoming way more numb to having my blood drawn than I would have ever thought possible, but injections still freak me out a bit. unless they go into an already placed IV. weird right?

Anyway.. we'll see how this goes. I really need to get into a state where I can head back to work. I'm not a financial wizard. I have pretty bad shopping urges when my moods are swinging. I don't have a savings to fall back on. My boss keeps telling me not to worry about it. I think he's crazy. He obviously has better financials than I do ;) I spoke to my mom today though, and she might be able to lend me a mortgage payment if I need it. We're also going to cancel our January cruise :( :( which is basically a mortgage payment when we get the money back. Although I'm stressed about it, I'm actually less stressed about the money than I am when I'm working and feeling good. I had to give up most of that stress when I went on medical leave. So as long as the mortgage is paid we're good, I'm good.

Chickadee, I've been thinking that I have to get copies of my medical records from the former GI doctor. I hope that's not too difficult. Some doctors are very pissy about it.
 
Hey cat
Sounds like stress u don't need :/ kids are scary lol!! Plus would your body be ready for it?
Potassium was 2 something and keep having a really bad fever so keep sweating more so prob gone down more :/ I don't seem to get cramps just heart palpitations and the shakes which my doctor said could be muscle related tremor. I've no idea what they are starting me on but they mentioned azothyaprine and steroids.
Hopefully the end of this flare is soon :/
Xx
 
Carrie-- Oh, I know that sweaty, nauseous feeling, and it's so miserable! Have you tried anything for the nausea? Ginger capsules helps me somewhat, especially if I take them about 20 mins. before eating. Zofran works quite well, but I think it sometimes makes my stomach cramps worse. I'm only taking it when things are really bad.

Because of some other health problems that I have, I was at life-threatening levels of anemia this winter, and I had to have 8 weeks of iron IVs. It really didn't hurt. Of course, it would be better to avoid this, if possible.
 
oh you know I think I was confusing my friend's vitamin b shots with her iron drip. My brain is on a deserted island somewhere.

ginger was making me feel worse so I'm mostly lying down, meditating, sipping a drink. I've also passed from extreme nausea into extreme pain. I'm actually happier with the pain. I'm used to dealing with pain.

oh and my std was approved! yay! I sent my doctor another message this morning about how I'm feeling. The GI dept told me they couldn't get me in until September!! so yeah... don't know what to say to that.
 
I'm beyond mad right now, I wen't to my GI and basically she's doesn't know what the $@&$ I have and is sending me for a CT scan on Tuesday, if that's negative then she's sending me to Washington.
She won't listen to my GP at all.
She says "maybe it's celiac or maybe a bad case of IBS" what BS "ibs" your having a laugh aren't ya? she just is pulling things out her ass because she doesn't know. I've been upset all day and now I'm just mad :(
Plus she prescribed no pain meds! So fantastic and I have to go on a none glutton diet. -___-
 
Carrie - don't give up you know your body better than they do and on average IBD patients get misdiagnosed 3 times. I beat the average I was four :/ thi kin of you and hope you feel better but I know that seems impossible right now but you will be or day and you can help people one day just like you xxxx
 
Chickadee, for what it's worth, I do better with yoga & weights than I do with cardio - and it's not for lack of trying. I've never been a fan of cardio, but I know I need to do it. I can't jog though, the arthritis hurts way too much when I try, and as of this flare I can no longer ride my bike, and lately I'm having trouble even doing the stationary bike, and walking has also been more of an issue lately. So cardio has been a real pain lately, pun intended. But I can do yoga and weights with relative ease and no pain, so hopefully you're similar and can do some light weights or gentle yoga or something like that. Good luck with PT, I hope you can figure out some ways that you can exercise without too much issue!

Carrie, I'm glad the short-term disability was approved! That's got to be a big relief. I can't believe you can't get in to see the GI until September though! Is this with a new GI? Can your GP do anything in the meantime or can you get on the cancellation list for the GI? Maybe if you called them and explained the situation, possibly they could get you in sooner? I know that in a "typical" situation it takes about 3 months for me to get a GI appt, but if he knows I'm flaring/suffering then he'll work some magic to get me in much sooner if need be. And I've found that crying on the phone also works to get me in sooner. Just a few thoughts for you, because it sounds to me like it will be torture if you have to wait it out until September!

Bluebird, it sounds like your doc is giving up on you, but at least she's willing to refer you to (hopefully) a better doc. I hope the gluten-free diet goes well and I wish you luck with the CT scan too! Have you had a CT yet? I found it to be one of the easier tests I've had, you probably will have to drink some contrast beforehand, but it's not too bad. Not nearly as foul as drinking colonscopy prep, I promise! :) I had to drink contrast mixed with lemonade, and it mostly just tasted like lemonade. Like vaguely chemical-y tasting lemonade, but not awful at all. I will say though, the contrast went right through me and I nearly didn't make it home, so be careful about that! Make sure to get straight home after the scan, or at the very least make sure you are near a bathroom. Good luck!

Gabi, steroids and aza sounds like a good combo - steroids are fast-acting and should get the inflammation under control pretty quickly, and the aza is more of a long-term med and it should hopefully keep things under control once you're off the steroids. It does sound like your potassium is low if it's only 2.something, did they say anything as to whether they could do anything for it? Supplements or injections maybe? It sounds like things are falling into place for you, I hope you get good relief really soon. I hope your experience with steroids is similar to mine - when I first started on prednisone, my symptoms went away within the first 24 hours and I felt so fantastic! I had so much energy too, I cleaned my whole house and didn't stop smiling the whole time. :p I've read that "euphoria" can be a side effect of pred, and I definitely got that one! It made me feel like superwoman! So I hope it gives you a similar effect and that you feel just fab while on it. :)

How's everybody else? I'm okay, questioning yet again whether I'm flaring or not, because I've had a few good days in a row. I'm eating well, sleeping okay, exercising regularly. I had such bad back & shoulder pain earlier this week & last week, that my other issues temporarily took a back seat to that pain. The back is feeling fine now and the shoulder is getting back to normal, and I find that my guts are still pretty quiet and the arthritis is average but not bad. So once again I just don't know what's going on with my body! I don't trust that the good days will last, but I'm also trying to enjoy the good days when I have them. I see my GI on Wednesday, so less than a week away now, and I keep revising what questions I want to ask him. I have a whole lot of questions written down but I need to figure out which ones are the important ones.
 
Yes, it's a huge relief to have the disability approved! Even if I have to keep extending it. Extending it doesn't seem particularly difficult, they just ask my GP for another certificate. I'm actually on the cancellation list for all of the GI doctors at Cleveland Clinic in NE Ohio. So whoever and where ever they are, unless they're more than an hour away I expect I'll go to them if I'm given a chance.

I let my GP know about the September timeframe, and he said we'd talk again after I get the results of my ct enterography (scheduled for Monday) And yeah, there's no way I can be out of work until September. FMLA leave maxes out at 12 weeks.

My iron bloods came back, and my iron is low but not terrible. He's going to check it again in three months. Eating these eggs is bound to raise it back up some too. I'm glad I don't need to deal with a supplement. it's hard enough to take the meds I already have to take.

Speaking of contrast, it goes right through me as well. I'm actually sort of worried I won't be able to keep it down. *crossing fingers* I'm super lucky that my hospital is basically at the end of my street. The worst luck and worst traffic ever, and I'd still be home in like 3 minutes. It's walkable when not ridiculously sick.

I just ate zucchini. Definitely doesn't hurt as bad as eating eggs, but it still hurts and made me sweat like crazy. I'm going to try to keep my foods list pretty small for the time being, just to be on the safe side.
 
Well she want's me to go see a dietitian but they are all the way in DC, nouts ever easy is it? lol I've calmed down though before I just got so worked up because I felt like nearly everyone just didn't care, my husband even said "no point getting upset" whilst I was in tears and its like "duh I know it doesn't help but doesn't mean I don't feel frustrated" but its all good I have some things coming up to occupy me, nevermind occupy Wallstreet occupy Ali's mind!! (My real names Alison but my friends and family call me Ali, feel free to call me that too)
So I've just had one of those day where you feel like the world crashing down on you, maybe some self pity.

I've had a CT scan of my brain and back I think but never had to do drink a drink obv, I picked Vanilla smoothie, it defo looks better than my colonoscopy drink (omg I feel sick thinking about it)

I agree though she kinda has gave up on me, Her whole attitude today was terrible. Almost like "meh I can't be arsed with you" but thankfully she has said to go get a second opinion, problem if I have to wait 4 weeks for an appointment because my husband is going away with work on a ship for 3 weeks and has no time before hand.

It's not I want to have Crohns. I don't but for the love of Chris Hemsworth (Thor) I just want answers and I don't want to be fobbed off with some sort of half arsed guess.

bla bla blaaaaa nuff said lol
 
Unfortunately, most of the really high iron food is still too intense for me to eat. I'm hoping I can try to eat chicken again in a couple days. I could try some spinach next time I go shopping (tomorrow or Saturday). I've never liked liver.. of course it's the best source on the list :p maybe pumpkin seeds.
 
I'm actually learning to like liver - chicken liver anyway. It's not bad. We do a lot of poultry in the crock pot and hubby always gives me the liver when we do up a whole bird. I'm to the point where I'm thinking of looking for a package of just chicken livers - not sure how I'd prepare them, but the thought intrigues me.

Bluebird, my hubby can't stand it when I cry either. I think I've mentioned this before, but he feels like crying/sadness is "unproductive" but that anger is a "productive" emotion, so he thinks I should get angry when I'm frustrated, rather than sad. Don't ask me how anger is supposedly productive - I can't think of anything beneficial that I'd produce while angry! :p But anyway, don't listen to those people - cry as much as you need to, it's okay and it's completely normal when you're going through stuff like this. During the first year of my illness, I estimated that I cried about 6 days out of each week. It's okay - if you don't want to cry in front of your husband becuase of his comments, that's okay too. When I cry, I tend to either go into the bathroom, or I get in my car and cry, or if I'm having a bad evening/night then I'll wait till hubby's asleep and then let the tears flow.

So Bluebird, your celebrity crush is Chris Hemsworth? :) He is a nice piece of eye candy for sure, although blondes aren't really my type. For some reason I've had a bit of an Asian fetish lately, and my current celeb crush is TOP from the South Korean pop group Big Bang. He's such a beautiful man, he's so pretty it should be illegal! Look on Youtube for "Big Bang Fantastic Baby." That's the video that made me swoon for TOP (he's the one with blue hair - he looks like an anime character in that video, like somehow the blue hair made him even more unearthly gorgeous). :D Rowrrr! He's got this voice to die for, too, very deep and husky and gruff - the voice doesn't seem like it could belong to such a beautiful man, which somehow just makes him sexier. Swoon! :p

Carrie, that's good that you live right by the hospital. I live right by one of the hospitals in my city, but of course the one that my insurance covers is the farthest away of the 3 hospitals in my city. :p How long are you able to extend the STD for? If I'm remembering correctly, a former co-worker of mine had to go on STD for cancer treatment, and I think he was able to get 12 months of STD total. I'm not sure if that varies by company/situation though.

How's everybody else doing today? I'm okay - the hubby is having some gut troubles though! We went to the gym last night after I got home from work, and he seemed fine then, but when we got home from the gym, I started making dinner. He said he had no appetite and didn't eat anything. Then he had to run to the bathroom like 4 times with (presumably) diarrhea. (I didn't ask, but I didn't hear vomiting, so I presumed he had d!) I asked if he was feeling okay, and he said, "Well I thought I was" then he had to run to the bathroom again. It was an interesting bit of role reversal - him with d, me with quiet guts! He seems better today though - he's usually super healthy and can often recover from colds/viruses etc within less than a day (whereas if I get a cold, I'm sick for weeks). So, hopefully he just ate something funky earlier in the day or whatever. It was a bit weird with the roles reversed like that though! I have to say, I enjoyed being the one who didn't have diarrhea for a change. :p
 
Calm down cat.. if you were a guy, I would be telling you to get a cold shower!!! :p haha
My celeb crush is Hugh Jackman (wolverine) yummmmmmm-yyyyyyy! ;)

My guts have calmed down a lot since I stopped having naproxen (nsaid) .. I was prescribed it after my surgery.
It is so hot here and very humid.

How is everyone else getting on? X
 
I don't know that I've seen many Hugh Jackman movies. I have seen The Prestige, which was a really good movie, but admittedly I may have been drooling about Christian Bale way more than Jackman in that film. :p

Hmm, tell a supermod to go take a cold shower?? *plots to come back when Bozzy doesn't suspect it and post a bunch of pictures of TOP* (evil laugh)

(The sad part is, I'm really like that on Pinterest - most people use Pinterest for posting recipes, crafts, etc. I use it to post a zillion pictures of TOP, ha ha! Um, sorry if you follow me on Pinterest - or maybe I should say, you're welcome. :p )

Okay, for serious now. Bozzy, I'm surprised they prescribed you an NSAID with your history of tummy troubles! I think NSAIDs played a part in triggering my IBD. The summer of 2009, hubby and I went kayaking almost every weekend, and sometimes we'd be out on the water for 4, 6, even 8 hours at a time. All that paddling meant massive muscle soreness, so I was popping ibuprofens like they were candy. I even started taking them pre-emptively before paddling to try to minimize the soreness later. If I knew then what I know now about NSAIDs, I would have never touched the stuff and just dealt with the soreness. It seems too much to be coincidence that I was downing ibuprofen in summer '09 and then got sick in the fall of '09. It's my assumption that there is a correlation there. So needless to say, I'm very wary of NSAIDs now because I feel like they played a part in me getting sick!
 
you guys are making me chuckle! I have a couple of celebrity crushes. I think Ewan McGregor is super cute, especially in The Island and Moulin Rouge. I also realy like Jason STatham too. Cat, I agree with you on Christian Bale and his drool-worhiness! Hugh Jackman played the Wolverine in all the X-men movies, as well as Van Helsing and in Les Miserables.
I also had the same situation with ibuprofen last spring. lwas taking them tdaily for my back nd I think they heped to push me into a flare.

I'm doing okayk still waiting for the update on my EEG, no word yet but it's frustrating! I did some housecleaning yet and it made me quite tired which certainly shows in my typing.
 
haha!! i dont use pinterest.. hugh jackman was in all the x-men films and Australia..
but CHRISTIAN BALE!??!?! eewwwwww!

i feel really stupid for taking them.. but i didnt realise at first lol - because they just give you drugs in the hospital.. and im like "anything for the pain!!"
i know nsaids really upset your stomach.. for normal people - let alone those with a sensitive one. i always have to have omeprezole to stop the burping and nausea

besides - as fair as anyone in the medical profession over here is concerned - i have IBS.
oh well, im ok :p
 
Yes Christian Bale!! He's a fine-looking man, especially in the Batman films with his big lovely muscles. Cindy and I obviously have good taste that you don't seem to share, Bozzy. :p Now I'm gonna post pictures of TOP and Christian Bale on here. Ha ha ha!

You should join Pinterest. There are a lot of pictures of cute guys, er, um, I mean good recipes on there. Yeah. Recipes. ;)

Cindy, how long do EEG results typically take? I hope you get them soon, and that the results are good. Not long now until your scope - I hope the prep isn't too vile this time around. Good luck with it - I hope it finds something to explain your tummy issues and you don't get written off with the IBS label.

Bozzy, I know on paper you have "IBS" but you really don't want to make yourself worse! I am so anti-NSAID that I yell at healthy people for taking that stuff. :p My mom ran a marathon and then popped a couple ibuprofen and I was like, "What are you doing!??" And she was like, calm down, stop being crazy! I can't help it though. Even Tylenol (acetaminophen/paracetamol) is supposedly safe for IBD'ers to take, but I hate taking it too because I know too much can mess up the liver. All these supposedly safe over-the-counter meds really aren't all that safe at all, and most people don't even know it. I certainly didn't know it until I got sick myself.

My lips are driving me nuts! The corners of my mouth are badly cracked and it's getting painful just to open my mouth - eating and laughing in particular are becoming quite painful. I started taking B6 again in desperation, hoping it'll help my lips more this time than it did before. Yesterday I was talking to my boss and then I looked in the mirror afterwards - just the act of talking had flaked a bunch of skin off of my lips and I looked really gross. But I had a meeting with my boss today and I explained that my health is tenuous at this point and that I'm having new weird symptoms and stuff so I will have to go to more doctor appointments. She seemed really understanding, so hopefully she wasn't too grossed out about my lips sloughing skin while we were talking. :p

I hope everybody has a good, restful weekend. Big hugs to all!
 
supposedly the results came in today and have been faxed to the surgeon. I should hear something Monday, I'm hoping. I'm a little sad about my scope timing because there is a neigborhood block part the night of the sixth and that's the night of my prep! boo. so Iwon't be able to eat, but at least I'll be able ot hopefully meet m neighbors (hoping the diarrhea part will mostly be done when we are supposed to get together).
Cat, I'm so sorry abou tthe lips! I hope the B6 does more for you this time and the docs have some answers for you.

I thoght of another cutie - I think Joseph Gordon-leavitt is pretty hot too. :D
 
Ooh yeah, JGL is a cutie pie for sure! You have good taste, Cindy. :)

Okay, so on the subject of cute boys, here's that video I was talking about earlier. Skip to 1:10 if you want to see TOP in all his blue-haired beauty. (It's a fun song though so also feel free to listen to the whole thing - if you do watch the whole thing, a couple of the other guys in the group are shirtless a bit later in the video, and they're both quite muscley and handsome.)
https://www.youtube.com/watch?v=AAbokV76tkU
If you wish to drool over pretty pictures, here's my Pinterest board dedicated mostly to TOP:
http://pinterest.com/capyboppy1/gorgeous/
You're welcome. :D I'm glad I can share my fantasy boyfriend, ha ha. :p

Oh goodness, a block party on prep night! That sounds dangerous, I would wear a pad or something if I was going to be any more than like 20 feet from the bathroom! Good luck with it, I hope it goes okay.
 
mccindy said:
you guys are making me chuckle! I have a couple of celebrity crushes. I think Ewan McGregor is super cute, especially in The Island and Moulin Rouge. I also realy like Jason STatham too. Cat, I agree with you on Christian Bale and his drool-worhiness! Hugh Jackman played the Wolverine in all the X-men movies, as well as Van Helsing and in Les Miserables.
I also had the same situation with ibuprofen last spring. lwas taking them tdaily for my back nd I think they heped to push me into a flare.

I'm doing okayk still waiting for the update on my EEG, no word yet but it's frustrating! I did some housecleaning yet and it made me quite tired which certainly shows in my typing.
Click to expand...

Good call on Ewan and Christian Bale. I've had crushes on both of them since the mid-90s . . . *swoon*

I've got my follow up appointment later this month - they wanted to give it a few weeks to see if diet changes helped - and so far they seem to be.

I have been following SCD paleo since the day after my scopes . . . tried some gluten after two weeks clean, just to see, and my digestive symptoms immediately returned . . . but got better quickly as I started avoiding it again immediately after. I may have been negative for celiac, but clearly there's some sort of gluten intolerance involved in all this . . . :/
 
Cat: yes I love me some Chris Hemsworth! I love Aussie men rawrrr! I dunno if I have a type I also find Matthew Grey Gubler from Criminal Minds sexy who is totaly different haha but maybe because he looks so innocent and I want to corrupt him hahaha x

Btw today I passed my driving test!!!!! :) x
 
Nice one bluebird! It took me 3 attempts to pass mine.

Mccindy - that is rubbish how it falls with your bowel prep. However it could be a good distraction for you.

Cat - even when its mine and my husband's date night - maybe go for a meal and to the cinema. I always end up talking about my celeb crushes!! Haha! Im not being mean to him.. but we always have a good laugh and banter. He always makes me laugh about the silliest of things. He is 7yrs older than me - but we act like little kids. Its great :p

Bluebird - you mean thing.. wanting to corrupt an innocent ;) haha!!
 
Hi everyone :) Over the last week or so I have read through this entire thread! I was hoping to see Starrrgirl and Cat diagnosed by the end of it, was pleased to see sunshine and Alli getting diagnosed though! :)

For my story, I will just give the short version here and link my other threads... I have been having symptoms like extreme distention/bloating, nausea, vomiting (/reflux?), pain and constipation (although the constipation is a lot better lately, can get more into that if anyone is interested, lol)

I had not suspected crohn's until going back to my GI about a month or so ago and when I showed him the pictures of my distention and described in detail how the vomiting/reflux was happening he felt I had a narrowing in my small intestines. He never mentioned crohn's, but when doing some research when I got home I saw crohn's was the most likely cause of narrowing. I had a CT scan, and I recently got the results from my new GP (who I LOVE)- I have two small areas of intussusception in my proximal mid bowel I think it said. (where part of the bowel "telescopes" into itself). I wish now I had gotten a copy, but I was so surprised by this that I never thought to ask. This is something that is normally seen only in children, so I never dreamed I would have this. Also in children it is an emergency as it usually presents as a complete bowel obstruction.

So I am just waiting now to see my GI. My GP said he would leave the plan to him and didn't want to really speculate as he wasn't sure what he would want to do. He just wanted me to know the results :)

With all my reading it seems a huge portion of intussusception in adults is caused by tumours or growths, etc. It can also be caused by things like celiac disease or crohn's. (celiac has been ruled out with blood and biopsy both). My report said no tumours were noted, it also didn't mention anything about inflammation being noted. It is possible that this can just happen idiopathically (no known reason or cause), but since it is in two separate spots I think that would be HIGHLY unlikely. I am very eager to see my GI and wish the appointment had been sooner. Only a few more days to wait now. It also said this can be transient and go back and forth to normal, but it seems from what I read most cases require surgery.

Here are my previous threads if you want more info on the development of my illness and what testing I've had etc.

http://www.crohnsforum.com/showthread.php?t=53234
http://www.crohnsforum.com/showthread.php?t=53954

I love the support and camaraderie of this group from what I've been reading so thought it was time I joined in :) Hope everyone else is doing okay.
 
Hey Folks and Folkesses,

I am in a kinda "Holding-Pattern" with my night sweats and burning stomach pain and conjunctivitis etcetera.

Over the past few nights, I have woken up with a layer of sweat on my skin that appears to have encompassed my body from head to toe.

However, my bedlinen has not been saturated and soaked through.

Started taking the course of 400mg Acyclovir Anti-Viral Tablets this morning.

Only time is gonna eventually tell me what is the underlying cause of my weird bad health symptoms.

In the meantime, I am focusing on moving forward with my life, and shitting my son out of the house, and doing stuff like, ordering the printing of my "On-Line Garage Sale" and Dog Walking Business Cards that I have created and designed.

I refuse to leave this earth, without being a success of some kind, even if it is just in the "Teeny-Tiniest Itsy-Bitsiest Small-Smidgiest Way" !!!

Last night, I watched a repeat screening of "Jurassic Park", for about the Eleventy Trillionth Time.

Not sure why it is, but I have always found Jeff Goldblum to be really sexy and physically attractive.

However, I have never understood the logic and rationale behind my thinking that about him, becos he isnt very pretty at all !!!

But, the way he has managed to pull off some of the script lines in movies like:-

. Independence Day
. Jurassic Park
. The Fly
. etcetera ...

And has made me laugh out loud to "Me Myselves and Eyes", has to be a good thing in my book, I reckon.

Wonder if Jeff is married, and I am still in with a chance ???

Or, is he even still alive for that matter !!! (becos I might have missed that telly episode of ET (formerly and previously known as "Entertainment Tonight") due to one of my many bouts of ill-health preventing me from watching the telly for days and weeks on end ...

Praps I should do some goggling ...

Or not ... :frown: ... becos I dont know if my physical and psychological health could cope right now, with finding out that Jeff died years ago !!!

Love from Frankie xox

Pee-Eff:- I have loved reading all of your posts in here over the past month or so since I became a member, becos the number of times I have experienced "Light-Bulb Moments" aka "Epiphany's" aka "Knowledge and Directional Momentum", are too numerous to mention, so keep writing about your "Wonderfully-Weird" health defects and symptoms, becos if it wasnt for so many of you mentioning your long-term chronic night sweats, combined with a few of you discussing pregnancy pro's and con's ... then it would never have occurred to me, to go down the path of researching "Adrenal Glands Low Cortisol Hormone Levels" ... and I am just so grateful ... becos surely there must be a Doctor Specialist in the World somewhere, who would be delighted to know that so many members of this website forum have symptom commonalities, such as saturating soaking night sweats, and sudden extreme day time rises in body temperature, not to mention, long term almost constant daily stressors that cause high levels of anxiety, which, then those raised levels of anxiety, become a significant stressor in itself, thereby kinda causing a "Vicious-Cycle of Sadness and Madness", that nobody should be forced to have to suffer in silence with indefinitely.

Pee-Pee-Eff-Eff:- Think I've gotten everything off my chest, so, thanks for being my captive audience (lol) ... :hug:
 
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Hi Jessie! Intussuseptions in adults are rarely idiopathic. My cousin has Crohn's, and one of his biggest problems are intussuseptions. He has had to have them removed surgically.

Freaking night sweats! I have them really bad. I hate lying back down on soaked sheets after I go to the bathroom.

I'm a little better, I am eating. I had chicken soup last night, but I feel absolutely nasty this morning. Already started with the diarrhea. I'm also afraid I might vomit. Hopefully pills will kick in before that happens.
 
Hi Carrie! Thank you for sharing that! Was his inflammation from crohns visible on CT? Was he diagnosed because of intussusception or before? Since they couldn't see any tumours or leading points, that was a bit of a relief but I'm scared it was something smaller they couldn't see. Do you think it would be more likely that the CT would not pick up on crohn-like inflammation/ulceration etc than tumours?
 
If I remember correctly, his crohn's was found during a double-balloon endoscopy. Others will need to chime in here, but I don't think I've ever heard of someone being diagnosed with crohn's based off the CT scan. I know it can show tumors, intussusceptions, diverticulitis, and adhesions.
 
Hi guys. Rough day today for me. I'm exhausted from visiting friends in Wisconsin last night and something I ate seems to be disagreeeing iwth me. I had cramping this morning, and now I have diarrhea which is very odd for me (usually I'm constipated. Not sure how excited I am about that two days before my prep day! Resting today, jow that we're home but the traveling really seems to hav etake n it out of me. Hpign to regain some strenght. I got toldl last night about a milion times I need some fattening up! Pretty difficutl to do wit hthe weight I lost during the brain surgery, and not being able to eat much sicne! boo.
 
Hey guys having a hard day so much pain I just wana give up and too many accidents today to count. Embarrassing to say the least. Random question but has anyone got like red blood blisters on their skin and lips? They look like a pimple full of blood. Does anyone know what this is or may be?
Hope uz are all in high spirits I think of u all constantly :)
 
Gabi, a post from when? I see two in a row. I would think a mod would message you if they removed your post for some reason. And we get into some necessary tmi here so I can't imagine what you could have said :)
 
Hey Gabi, I don't see any deleted posts for you, and yes, if you had posted something not allowed (like name-calling) then a moderator would have sent you a PM explaining why your message was deleted. I'm guessing then that maybe it just didn't post right? Like if there was a temporary "burp" in your internet connection or something like that (for lack of a better word, sorry it's early and I'm not thinking clearly!), you may have hit post but it didn't work for whatever reason. But I don't see anything deleted so it wasn't anything that was done by a moderator. Either a glitch on your end or a quirk of the forum, something like that. If it happens again - this goes for everybody - let me know and I'll have it looked into. Thanks! :)
 
Hi guys. I've been browsing this forum for a few months.

I'm 23 and have had had symptoms for several years, but over the past few months have worsened to the point that I am regularly waking up in the middle of the night... I only had 4 hours sleep last night. And haven't managed to sleep today either.

I'm currently waiting for the results of a calprotectin test to see if i do have an ibd or if it is just good old ibs. I'm really terrified that it will come back positive but at the same time I am also a bit worried about it coming back negative. Is that weird?

I'm super worried about what's going to happen over the next few months.

Ahhhh.

Bye :panda:
 
Hi Thunderstorm, welcome to the forum. :) Why are you waking in the night, is it to run to the bathroom with diarrhea, or is it because of pain? Either of those can indicate IBD but are not part of IBS - so my guess would be that you've got something more than IBS going on. Calprotectin is a good start but isn't necessarily a definitive test and that alone won't get you an IBD diagnosis - have you had any other tests like colonoscopy, or any scans like CT or MRI? What about bloodwork, have they looked at things like your vitamin levels and CRP/ESR (inflammatory markers)? Have you seen a GI yet or just your GP?
 
Hi Cat-A-Tonic.

I'm waking in the night either due to severe stomach burning, pain and/or nausea. And also due to bowel pain + discomfort. Sometimes diarrhea. Today I woke due to really awful pain at 5am ish and had to rush to the bathroom, but BM was reasonably formed + has been for the 7 other times I have been today :/ just with horrible pain/discomfort.

I've had various blood work over the years due to severe fatigue, all have been normal bar the usual iron + B12 deficiency. I haven't had any blood tests for over a year though despite seeing 3 different GP's.

I saw a GI last week. I think he is just starting with the more gentle tests first - calprotectin + gallbladder scan. I'm really anxious about it all and he mentioned that he didn't think that I would tolerate a scope well and I agree with him! hah.

Thanks for the reply :)
 
Hi thunderstorm! Welcome :)
Are you having injections for the b12?
I would really push those symptoms to your doctor regarding being woken up in the night with those symptoms. Because as cat says.. IBS wont do that to you?

I like the fact your GI is starting with less invasive tests.. but the definitive way to diagnosis any bowel infections or IBD is to do a colonoscopy with plenty of biopsies :)

Have you had any other symptoms (such a bleeding)?
Hopefully you can get some answers soon :) x
 
Hi Bozzylozzy. Thanks :)
I am indeed having those horrid B12 injections. My GP says that I should have them every 3 months for the rest of my life (ugh!).

I have had red blood on and off for years which I always put down to tears or hemorrhoids, but more recently have noticed a bit of what looks like darker blood :/ Not much though, thankfully.
My weight has also fluctuated quite a lot over the years. At my worst I was just around 90lbs at 5'3.

I also get joint pain quite frequently which has been put down to CFS.

My GI is supposed to be quite good, but I was full of nausea+anxiety so did forget to mention a few things at my appointment. I'm quite tempted to email him, haha.
 
Does anyone have any idea when I can take lomotil again post barium drink? I got very very bad total liquid bm last night, and it has continued this morning. It got _really_ bad after I finished the first bottle of barium, and since then I've got like 8 times o_O

sucks

ETA: the doctor said I have to wait 24 hours before taking lomotil..
fyi for anyone else who ever wondered. I couldn't find this info online when I searched, so now it's out there :)
 
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Thanks for the info, Carrie, that's good to know. (I'm sure I didn't wait 24 hours to take Lomotil after my CT scan, I am sure I took it much sooner than that - I seem to recall that my CT was in the afternoon and I took Lomotil that evening - oops!)

Thunderstorm, have they ever done tests to confirm the source of the bleeding? Speaking as someone who's been passing some bright red blood lately (I've never been a bleeder until like May of this year), it's not always due to a fissure or a hemorrhoid. They ruled those out for me, and they also ruled out bacterial infection. I seem to bleed when I use my abdominal muscles too much, which is very odd. But anyway, my point is, don't just assume it's fissures/hemmies, because it might not be. Particularly if you're now passing some darker blood as well, that's definitely not fissure/hemmie-related.

And I'm sure you know this already, but bleeding is also not a part of IBS. The waking during the night, that definitely isn't IBS either. You said your doc wants to do less-invasive tests first, but it sounds to me like you really need a colonoscopy to see what's going on in there already! Yes, the prep sucks, but it's a necessary evil.

Speaking of prep, Cindy - is tomorrow your prep day already? Yikes, good luck! I hope you're stocked up on wipes, creams, etc and of course I hope it all goes well. I know prep is in my near future as well, I see my GI on Wednesday and I'll be asking him to schedule a scope for me. I'm already mentally preparing for it - I put a few extra books in my bathroom yesterday :p and I have a stash of flushable wipes hidden away (the hubby has been using them all up on me! The nerve!). Okay, going off on a random tangent here, but does anyone else have a little bookshelf in their bathroom? I have a few regular books and one Sudoku book (I keep a pen in there too). They are lifesavers for when I have to run to the bathroom and don't have time to go grab my kindle! :p

How's everyone else doing today? I've been a bit more fatigued the past few days. Resting more and exercising somewhat less. I'm not a fan of this latest twist - but it lends credence to the "I'm flaring" theory, so I'll go with it and will of course tell my GI when I see him in a couple days. I passed a bit more blood the other day too so clearly things still aren't right. It's definitely time for a scope. Yayyy. Not. ;)
 
Cat - yep tomorrow is the big day! I have my Kindle at the ready witha new long book loaded up so I should be able to make it through. I do have some wipes also . other than the post-prep chills, I'm hoping to make it through fairly well.
 
I got an appt with a new GI for Friday morning! yay!

that barium drink generated a ridiculous amount of gas. it won't stop popping and gurgling!
 
My bowel woke me up AGAIN last night despite taking a low dose of imodium before bed. So only had less than 5 hours sleep. Less pain but much more loose and mucusy. Ugh. I'm completely exhausted. :(

I have emailed my consultant..

I hope you are all okay.
 
Good luck Cindy! Have you started prep yet? I hope it goes really well! I hope tomorrow goes as smoothly as can be too and that you get some firm answers as to what's going on with your guts.

Thunderstorm, I hate nights like that. :( Have you heard back from your consultant yet? Does Imodium usually work okay for you? I find that it doesn't do much for me, but I have a prescription for Lomotil (basically prescription-strength Imodium) and that works a lot better. Even on a bad day, one Lomotil will usually slow/stop the d for about a full day. It's like Imodium in that you're not supposed to take it often, but for big events or if I'm going to be somewhere (like hiking or whatever) where there might not be bathrooms, I sometimes take a Lomotil so that I don't have to worry so much about bathroom stuff. It's worth asking your doctor about if Imodium isn't working so well.

How's everyone else? I'm actually having a really good day! Guts are quiet, arthritis is quiet, energy level is good, I slept wonderfully last night, and I'm just feeling basically the opposite of how I was feeling yesterday. :p I don't know how or why I lucked into having such a good day and I don't expect it to last, but I'm trying to enjoy it while it lasts. I'm sure I'll be back to feeling exhausted and crummy tomorrow, that's the way it seems to go lately, but wow - it's been a long time since I've felt this well! Makes me really miss remission!

Speaking of that, I see my GI tomorrow. Hopefully that goes well. I want a scope and the I want to switch meds and of course I want a diagnosis and then I want to get back into remission. :p I feel like a little kid writing a list to Santa - but have I been naughty or nice?? Think my GI will grant everything on my wish list? Or am I going to end up with coal in my stocking? ;)
 
Hi Cat! Prep SUCKS! lol I'm about midway.... I think.. but I will say drinking this Miralax with orange Powerade Zero is MUCH beter than the nasty gallon of GoLightly or whatever I had to drink last time
Tomorrow morning I have to get up at 430 am to drink 10 oz of Magnesium Citrate. Don't remember that one from last time but I'm not looking forward to it!
I am looking forward to having the scope done and finding out if they see anything!

I'm glad to hear you are havign a good day Cat.
I hope everyone else is having a good day too! Bozzy, Bluebird, and everyone else!
 
Cat, good luck with your appointment, hope you get everything you want!

I also have my GI appointment re: my CT (which i know from my GP showed 2 small areas of intussusception). I am so glad to finally have it, I am nervous and excited to see what he will have to say and what his plan is. I just hope things start moving faster like if he is doing further testing that I don't have to wait a month or more for it. I don't know whether to wish for no surgery or wish for surgery. I just want to be fixed, so it's not long til I hear the plan!
 
Good luck with your GI appointment, Jessie! I know what you mean, I'd just like a plan too, the details of it seem less important than just having a plan. I had a plan - I was in remission and kept myself there with Asacol. Then they stopped making Asacol in the US, and I had to switch to Delzicol. Like 2 months later, I started passing blood and feeling worse. I think I'm flaring and I think the med switch set the ball in motion. So now I'm on a med that isn't satisfactory and I'm not in remission - I need a new plan!

Cindy, I hope the prep is still going okay! I did the gatorade & Miralax prep twice, and it was easy to get down, but it dehydrated me too much both times. I hope you don't get dehydrated! Getting up at 4:30, yuck!! Good thing you get a nice nap during the scope. Is your scope early in the morning? Hopefully you can nap a lot after it's over with too.
 
Thanks Cat! I'm sorry you're flaring :( Cindy I have drank the magnesium citrate a bunch of times and its not that bad. It's the aftertaste that is grosser. So just have some juice to wash it down quickly after taking huge gulps of it.
 
Hey people! How are you all? :)

I had my Ct scan yesterday so waiting on results, might start taking bets on it coming back as negative lol as like all the rest if my tests -___-

Woke up today and tummy was sore, my joints are sore, I'm bloated because of being on the time of month, kinda feeling a bit crappy today. Had to do two cake orders the last two days whilst in serious pain, I should of said no but I didn't want to turn away the sales or let someone down.
Btw I find that exercise doesn't help my symptoms dunno if anyone else is like that?

So I feel I haven't stopped the last few days and I'm ready for a lye in on Friday. Hubby is going away for 3 weeks come Sunday with work, will have no contact at all part from the odd email if he can get on a pc. Not looking forward too that :( anyone want to keep me company? Ha xxx
 
I finally slept all night! yay!
I received a letter from my GI (dated the day before before I emailed him) with my calprotectin results which were slightly raised. Compared to the what I have seen on here, it seems like nothing. It's definitely put my mind at rest a bit. Although in his letter he did say that along with the past b12 deficiency - it could suggest an inflammatory problem in the small bowel.. Surely the results would be higher if it was an ibd?

Though in the week or two leading up to the test, my bowel wasn't too bad. I wonder if the results would have higher if i'd done it this week..

My consultant hasn't emailed me back yet. :/

Good luck with your GI appointments Cat-a-Tonic & Jessie45. And good luck with your scope Mccindy! Yikes!

BluebirdinLove - How did you end up living in the USA? I'm very jealous!
 
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Hi Bluebird, I don't think I ever contratulated you on passing your driver's test - so, CONGRATS!! :D I hope you get something out of the CT scan. When I had my CT, my GI explained that CT gets a good "overall" picture of the abdomen, but it doesn't see fine detail like an MRI will. So if they think they see something on your CT, they'll likely send you in for an MRI of that specific area to get a better look at it. Oh, and I was also told that CT sees hard tissue like bones better, whereas MRI sees soft tissue like organs better. So, the CT may not see much, but if they do see something abnormal, an MRI will be the way to go. Good luck - I hope the results come back quickly and that you get something worthwhile out of them.

Cakes? Are you a baker? I find it kind of sad when bakers have to go gluten-free, that just seems so wrong to bake such lovely things but not be able to eat any yourself. I know that Quirkysoul (Meg) has a business where she bakes cupcakes, and she's had to go gluten-free recently too. That just makes me sad! That's sad about your hubby going away for 3 weeks, too. I think I live too far from you to visit & keep you company. :( But hey, you can watch Thor while he's away - your crush Chris Hemsworth will keep you company. :D Have you seen Cabin in the Woods? He's in that too. It's quite scary so don't watch it before bed (it's a horror movie with kind of a sci fi twist - it's really good and very unique, not like any other horror film I've seen). I know that it's on Netflix streaming, I've watched it a few times myself.

Exercise does help my symptoms - as long as I'm doing the right type of exercise. Jogging and lately bicycling too just make my joint pains worse, so I'm mostly avoiding cardio lately. But I can lift weights and that always makes me feel better, and yoga helps too. Not all forms of exercise are created equal, and everyone responds differently. What type of exercise was it that made you feel worse? Or was it just generally being more active/not resting enough? I find I really have to listen to my body - if it says rest, I have to rest and can't push myself. When I was in remission, my body was telling me to exercise, exercise, exercise! So I was working out like 6 days a week, and my body was thanking me for that. Now I'm working out 3-4 days a week and resting more, and that seems to be an okay balance for me in this flare. My long & rambling point is, listen to your body, and also try gentle forms of exercise when you're feeling okay. Some really gentle yoga might help a lot, and you can find lots of videos online for free so that you can do yoga in the comfort of home. :)
 

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