Undiagnosed Club Support Group

Crohn's Disease Forum

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Thanks for the warm welcome.
I'm over 2.5 years in, pain and awful fatigue mainly as my symptoms so gallbladder removed last March but didn't help the pain. Then this August admitted to hospital after almost 3 weeks of diarrhoea (20+ times daily) and almost a stone in weight lost. Had a ct as an inpatient that showed thickening of the bowel and a massively elevated faecal calprotectin so they said Crohn's and started me on Budenoside, have now had an mri and colonoscopy as an outpatient and both were normal.

Still haven't been able to return to work, still have diarrhoea but now only 6 times a day, still have absolutely awful pain and am still utterly exhausted and sleep in the day if I do more than just get dressed.
I'm also introducing food again after 8 weeks exclusively on Modulen shakes and it seems to just be making me worse.

I'm so impressed that you've managed work, I normally do three shifts a week and used to fall asleep after them and then be like a zombie on my days off.

How far along the undiagnosed road are you?

I'm supposed to be taking my niece, nephew and son to a concert this weekend but can't see how that'll be possible and it makes me sad.
 
Morning! I'm a new poster but long time reader, especially late at night when whatever this is, is keeping me up! Thank you for sharing your experiences they've helped me feel less crazy.

Have any of you had difficulty getting doctors to dig in and try to get a diagnosis? With my PCP, I feel like he's at a loss after going down the lupus route (lupus specialist said no), and GI route (colonoscopy and endoscopy clear so PCP says no Crohn's). He's sending me to another rheumatologist (my CRP is always high) but that appointment isn't until Dec 15.

My GI specialist did suspect Crohn's possibly limited to small intestine. But he said he'd do the pill cam but only if my symptoms got bad again. I was feeling good when I saw him, though, and when they got worse last weekend and I called, he ordered a CT scan. The network htheyre both in follows a triage approach so you call, speak to a receptionist, then the nurse calls you back, then speaks to the dr, calls you back again, then puts in the order, then the hospital is supposed to schedule it but often doesn't. To get to the CT scan scheduling took 13 phone calls, which is tough to swing and still work. Also the scheduling means a STAT CT scan is 1 week later. And the odds are good I'll need to follow up to get my results.

Is this normal? I'm having a hard time coping with the illness, the cramping and nausea and diarherra. It wakes me up for hours at a time. I've eaten nothing but chicken and rice and potatoes and gluten free white bread for a month to try and help the symptoms.

I know I shouldn't complain because it could be worse, but I would love some perspective on your experiences navigating the healthcare system and if there's any hope for an end to feeling this way!
 
Ames said:
Morning! I'm a new poster but long time reader, especially late at night when whatever this is, is keeping me up! Thank you for sharing your experiences they've helped me feel less crazy.

Have any of you had difficulty getting doctors to dig in and try to get a diagnosis? With my PCP, I feel like he's at a loss after going down the lupus route (lupus specialist said no), and GI route (colonoscopy and endoscopy clear so PCP says no Crohn's). He's sending me to another rheumatologist (my CRP is always high) but that appointment isn't until Dec 15.

My GI specialist did suspect Crohn's possibly limited to small intestine. But he said he'd do the pill cam but only if my symptoms got bad again. I was feeling good when I saw him, though, and when they got worse last weekend and I called, he ordered a CT scan. The network htheyre both in follows a triage approach so you call, speak to a receptionist, then the nurse calls you back, then speaks to the dr, calls you back again, then puts in the order, then the hospital is supposed to schedule it but often doesn't. To get to the CT scan scheduling took 13 phone calls, which is tough to swing and still work. Also the scheduling means a STAT CT scan is 1 week later. And the odds are good I'll need to follow up to get my results.

Is this normal? I'm having a hard time coping with the illness, the cramping and nausea and diarherra. It wakes me up for hours at a time. I've eaten nothing but chicken and rice and potatoes and gluten free white bread for a month to try and help the symptoms.

I know I shouldn't complain because it could be worse, but I would love some perspective on your experiences navigating the healthcare system and if there's any hope for an end to feeling this way!
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I hope they can get you diagnosed soon and get you on the right medicines to make you feel good.
 
Hi Ames:

My crohn's is mostly in my small intestine (from duodenum through the ileum). It has shown up on an endoscopy once when I had a stricture in my duodenum. The rest of the time it prefers to reside lower down in what my GI likes to call the "black hole" of the digestive system. I have had colonoscopies and pill cams but it shows itself most clearly on CT scans when it is so bad I have to be hospitalized. A physician friend was asking me how I was and he remarked that doctors want a "solid tissue diagnosis" much of the time. I used to suffer from strep a lot before I had my tonsils out as an adult, and I still had to have a strep test (which I understood) and wait for the results (no rapid test in the '70s and '80s). Unfortunately, it is much more difficult, emotionally and physically, to wait around for the docs to visualize crohn's in order to treat it.

I hope your "STAT" CT scan will give your GI enough to go on.
 
Blerg. I'm not doing so great. Yesterday and today, there's been nausea and d and just feeling generally not well. I'm upset because tomorrow is my birthday and I'm going to a pro football game! Not only is it going to be about a 2.5 hour drive to get there, but I don't know what I can eat, if I can eat, or if the game is going to be like torture instead of fun because I'm not feeling well. Ugh ugh ugh! I'm just going to put on a happy face tomorrow and try my hardest to pretend like everything is okay. Trying to get all my crying and anger and self-pity out of the way with today so that hopefully I can be okay (releatively speaking) tomorrow. I really hate my stupid broken body.

I do have imodium for the d and zofran for the nausea and dicyclomine for the cramps, so I can take the edge off. I might even take a bit extra pred tomorrow, I know that's not good but I really need to be functional tomorrow. I can't miss this game, my dad paid so much money for the tickets and this was the birthday gift I specifically asked for (and I really do want to see the game!).

Sarah, yes, I'm still currently on 10 mg of pred. I haven't tapered so that's not what's causing me to feel ill right now. I think I ate something which didn't agree (maybe mild food poisoning even?) and that's why I'm feeling unwell the past couple of days. I hope tomorrow is much better. If I'm not doing better by Monday, I'm going to call my GI and ask if I can maybe go back up to 15 or 20 mg pred for a bit. I really don't want to have to do that, I can't sleep on 20 mg, but I also can't feel this unwell and expect to function, you know? You gotta do what is necessary but sometimes that sucks. It's like, here's two crappy options! See if you can figure out which option sucks slightly less! :(

Sorry for the rant. I'm definitely having a bad day. Stupid guts.
 
Hi Jabee -

Thanks so much for the reply, and confirmation my GI may be on the right track.

Do you mind if I ask what is bad enough to be hospiralized? I've been feeling progressively worse this week, waiting for the CT scan. My cramping bouts last longer and are more frequent, I'm up again in the middle of the night because I can't sleep through it. Now I'm suffering from C which is rare for me. I feel awful after I eat but do it out of necessity. Ive never felt this horrible.

My son regularly has strep, and it never shows up in for the first couple of days with the rapid tests. We moved and his new pedi wouldn't treat until the test came up positive so we switched practices. I couldn't watch him suffer the 3x the same pattern emerged and they wouldn't treat. Just realized I've developed a healthy mistrust of doctors and adequate care!
 
Happy birthday Cat 🎂
Hope you have many many spoons today (just read that on another thread and thought it was great) xx
 
Hi Ames:

I am totally with you on the healthy mistrust of doctors. it is so hard to find a really good primary care physician.

As far as going to the hospital, I know there are lots of people who are more "experienced" with respect to hospital stays than I am. I tend to hold off until I cannot eat or drink and/or am in so much pain that I can't think straight. This past spring I couldn't even sit upright so I knew something was wrong. I tend to be more constipated than not, so number of trips to the toilet doesn't really mean much for me. I also drop solids and stick to clear liquids when I know things aren't right. I drink bone broth, black tea with some sugar, sorbet (no milk), chicken broth, etc. and that seems to help. The big thing to worry about with constipation is a complete or partial blockage. If things don't start moving again you should go in to make sure you don't have one.

Hope you feel better soon!
 
Kitty I'm so sorry you're having such a long journey to diagnosis too! Depending how long you were on the steroids and how bad the inflammation was they could well have healed everything up enough that the MRI and colonoscopy came back normal. Did they do any biopsies with the colonoscopy?
Work is exhausting with all my health problems, but our lovely DWP don't think I'm sick enough not to work, but work are trying to sack me because of all my sickness related absence. Go figure. I only work 3 days a week though and it's a real struggle, I don't have a social life and only really leave the house for work, medical stuff and food shopping.
Did you make it out this weekend?

My diagnosis stuff is getting complicated and over the last few months I've kind of accepted that for now my diagnosis will be refractory/severe IBS, but I'm going to ask gastro what happens next as there was inflammation found on my colonoscopy biopsies. I've had IBS like symptoms for years then about 18ish months ago the D became every day between 3 and 8 times, some blood, lots of mucus, abdominal pain, nausea, weight loss, extra fatigue, joint pain, no appetite etc. Recently the D has mostly slowed (changing my supplement drinks and starting probiotics has helped) but still get a fair amount of pain and mucus. I've been having more and more trouble though with nausea, feeling full quickly and feeling full for longer than I should, sharp upper abdominal pain, extra reflux and what basically just feels like sharp rocks in my stomach all the time. I'm very underweight and struggle with food because of symptoms, so the malnutrition is making my life hell right now to be honest, I'm very weak and exhausted and I'm constantly cold.

On that note, my scales arrived and I regret stepping on them yesterday. I'm down 1.3kg from my last dietician appointment so I'm now sitting at 43.8kg / 96.5lbs / 6stone 13. That leaves my BMI at 15.1 :( The nausea has been bad though the last ten or so days though so intake is down again. Seeing the GP on the 22nd which still seems a long time away.

Cat I'm so sorry you're having a bad few days with your guts! I hope you have been able to enjoy today despite it. Happy birthday!! I really hope your gastro can get you on some better meds soon.

Sending hugs to all that need them this weekend :ghug:
 
sarahfh said:
Kitty I'm so sorry you're having such a long journey to diagnosis too! Depending how long you were on the steroids and how bad the inflammation was they could well have healed everything up enough that the MRI and colonoscopy came back normal. Did they do any biopsies with the colonoscopy?
Work is exhausting with all my health problems, but our lovely DWP don't think I'm sick enough not to work, but work are trying to sack me because of all my sickness related absence. Go figure. I only work 3 days a week though and it's a real struggle, I don't have a social life and only really leave the house for work, medical stuff and food shopping.
Did you make it out this weekend?

My diagnosis stuff is getting complicated and over the last few months I've kind of accepted that for now my diagnosis will be refractory/severe IBS, but I'm going to ask gastro what happens next as there was inflammation found on my colonoscopy biopsies. I've had IBS like symptoms for years then about 18ish months ago the D became every day between 3 and 8 times, some blood, lots of mucus, abdominal pain, nausea, weight loss, extra fatigue, joint pain, no appetite etc. Recently the D has mostly slowed (changing my supplement drinks and starting probiotics has helped) but still get a fair amount of pain and mucus. I've been having more and more trouble though with nausea, feeling full quickly and feeling full for longer than I should, sharp upper abdominal pain, extra reflux and what basically just feels like sharp rocks in my stomach all the time. I'm very underweight and struggle with food because of symptoms, so the malnutrition is making my life hell right now to be honest, I'm very weak and exhausted and I'm constantly cold.

On that note, my scales arrived and I regret stepping on them yesterday. I'm down 1.3kg from my last dietician appointment so I'm now sitting at 43.8kg / 96.5lbs / 6stone 13. That leaves my BMI at 15.1 :( The nausea has been bad though the last ten or so days though so intake is down again. Seeing the GP on the 22nd which still seems a long time away.

Cat I'm so sorry you're having a bad few days with your guts! I hope you have been able to enjoy today despite it. Happy birthday!! I really hope your gastro can get you on some better meds soon.

Sending hugs to all that need them this weekend :ghug:
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Sarah, I hope you can get some answers soon and get on the right medicine. 😀😀😀
 
OMG. I've been bugging my GI about LDN, I'd like to try it. He didn't respond for the longest time, but he finally responded to my emails to say that we can discuss it at my appointment next week. !!! That's not a no! So hopefully he's open to the idea of me trying it. Trying not to get my hopes up too much as there are still 2 big hurdles there - I have to still get my GI to say yes I can try it, and then obviously it has to work for me (it doesn't work for everyone with IBD, but it does work well for a lot of people). Soooo, we'll see. Hopefully he'll say I can try it!
 
Cat-a-Tonic said:
OMG. I've been bugging my GI about LDN, I'd like to try it. He didn't respond for the longest time, but he finally responded to my emails to say that we can discuss it at my appointment next week. !!! That's not a no! So hopefully he's open to the idea of me trying it. Trying not to get my hopes up too much as there are still 2 big hurdles there - I have to still get my GI to say yes I can try it, and then obviously it has to work for me (it doesn't work for everyone with IBD, but it does work well for a lot of people). Soooo, we'll see. Hopefully he'll say I can try it!
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Hoping for you, Cat .
 
Hey all - questions!

I had my follow up endoscopy yesterday. This time they say my esophagus looks "normal" - no mention of the furrows that were there last time. I guess that's good? But I didn't know it could heal in just 3ish months? Still took biopsies, of course.

THEN-- last time my stomach looked FINE, no issues -- this time, and I'm just gonna quote it "Patchy mildly erythematous mucosa was found in the gastric body and in the gastric antrum." They biopsied that, too. When I came around, they said they are testing for H.Pilori, specifically, as well as other things. But I've been tested for H.Pilori before, and was negative.

But other than that, doesn't this also mean it is gastritis? And could that be leading to D?

And, can't that description be Crohn's, just in the stomach? (oh please I hope not, but if so, will biopsies be conclusive?)
 
Wildmtn, I don't know the answers to most of your questions. I do know, however, that gastritis can definitely cause d. I'm not sure exactly how or why, but I get wicked, watery, urgent d when I have a bout of gastritis. And oddly, my d during gastritis tends to be very pale (they've checked my gallbladder and they say it's fine). Maybe that's just me, but that's my experience. I know that's not super helpful, sorry.

Crohn's in the stomach is, I believe, the most rare form. So I hope you don't have that, because that's the least known form and maybe also the trickiest to treat. I would think biopsies would show that if it was Crohn's, but as you know, Crohn's (regardless of where it is in the gi tract) has a skip pattern - so they'd have to have biopsied the right areas. Again, I know this isn't super helpful! This is just what little I know of gastric Crohn's. I hope you do get some answers soon from those biopsies.
 
If you removed your EOE triggers then they can heal in 6-8 weeks
Most gi rescope kids after 3months with a new food
Good luck
 
Wildmtnhoney, when I googled "erythmatous mucosa" I found this "Erythematous mucosa of the stomach is a red, irritated lining within the stomach. This condition is generally seen when a patient has a diagnosis of gastritis..." When I had gastritis I was told in layman's terms after the scope that I had irritated lining of the stomach so that meant I had gastritis. They did biopsies, etc. also, but unless the biopsies show something else, I would assume that is what you have. Did he give you any meds? I can't remember the name of it now, but my GI gave me a med which is the same thing they give for ulcers, it puts a protective coating over the lining until it has time to heal. If your case was mild enough they might not have given meds tho.
Hope this helps.
 
Wildmtnhoney said:
Hey all - questions!

I had my follow up endoscopy yesterday. This time they say my esophagus looks "normal" - no mention of the furrows that were there last time. I guess that's good? But I didn't know it could heal in just 3ish months? Still took biopsies, of course.

THEN-- last time my stomach looked FINE, no issues -- this time, and I'm just gonna quote it "Patchy mildly erythematous mucosa was found in the gastric body and in the gastric antrum." They biopsied that, too. When I came around, they said they are testing for H.Pilori, specifically, as well as other things. But I've been tested for H.Pilori before, and was negative.

But other than that, doesn't this also mean it is gastritis? And could that be leading to D?

And, can't that description be Crohn's, just in the stomach? (oh please I hope not, but if so, will biopsies be conclusive?)
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When I had my endoscopy, the GI saw mild erythematous mucosa and did a biopsy of it to test for H.pylori - it came back negative. He explained that it was most likely a by-product of my acid reflux. I think my stomach was also irritated due to taking omeprazole since it lowered my stomach acid and caused stomach pain. The redness should resolve if the H.pylori comes back negative.
 
Thanks all!!

New question- should my throat and upper stomach/chest be sore still today if I over did it yesterday?

I think I'll call the GI anyway, but checking in here, too
 
If you had an upper endoscopy yesterday and are still sore today, I'd say that's pretty normal. For me, I can always feel it the next day in the spots where they took biopsies - my last upper endoscopy, there was one spot in my stomach that I could pinpoint, it was quite painful! After a couple days or so, the pain went away. So I'd say if you're still in pain in after a few days, that's when I'd worry, but for now I think you're fine and that's normal. Of course, any weird stuff, like fever or vomiting or worsening pain should definitely warrant a call to your doc, but some mildish pain/soreness is likely fine.
 
Cat I really hope the GI is open to trying the LDN for you! Good luck for you appointment! How are you getting on now? Did you manage to enjoy your birthday?

Wildmtnhoney I hope the biopsy results don't take too long for you. I had some definite discomfort in my throat and chest for a couple of days, I assumed it's because I'm petite and there just wasn't a huge amount of room in there haha. But yes definitely worth giving your GI a call to make sure it's nothing serious.

So something a bit odd has been going on for me this week. I'm constipated. Like, not had a proper BM since Friday last week, only one small bit on Sunday and some mucus on Tuesday. I'm still passing gas, but that's it. I'm not eating much because of my nausea but it doesn't usually affect my BM's at all,my belly is kind of bloated and uncomfortable with like waves of crampy pain but nothing severe just enough to make me pause until it passes. If I press I can't locate a specific pain spot either. I'm not really sure what to do. I've tried eating a bit more fibre and I've tried to drink a bit more today (nausea has been making that hard) but so far nothing has changed. I mean, the pain is definitely worse today than the rest of the week but not enough to bother with the walk in or whatever. At what point with constipation do you seek medical attention? Should I try and get in to see a GP tomorrow if no BM over night?
 
I did some further research and found out that gastritis can come in many forms and is basically anything that causes inflammation or irritation of the lining of the stomach, including H-pylori. According to WebMD, gastritis is:
"an inflammation, irritation, or erosion of the lining of the stomach. It can occur suddenly (acute) or gradually (chronic).
What Causes Gastritis?
Gastritis can be caused by irritation due to excessive alcohol use, chronic vomiting, stress, or the use of certain medications such as aspirin or other anti-inflammatory drugs. It may also be caused by any of the following:
Helicobacter pylori (H. pylori): A bacteria that lives in the mucous lining of the stomach; without treatment, the infection can lead to ulcers, and in some people, stomach cancer.
Bile reflux: A backflow of bile into the stomach from the bile tract (that connects to the liver and gallbladder)."
Of course, this means gastritis can have various degrees of severity also. And I also agree that there can be soreness after a scope, but it is something to keep an eye on. I sure hope you feel better soon, Wildmtnhoney.
And Sarah, I can't believe you aren't in more pain with that little of bowel movement. I would definitely call your GI, especially since that is a change in your bowel habits, and see what he/she recommends. I would also recommend going in somewhere if you have any more pain, as pain seems to be a good barometer for what is going on in the body.
I also hope that everyone else who has been trying to get in for scopes, CT scans, etc. has been able to do so. There is nothing worse than knowing something isn't right, but not knowing what it is or being able to do something about it.
 
Sarah, I'd start to worry if the pain gets worse, if you develop a fever or vomiting, or if you can't pass gas. That's when to worry about an obstruction.

Not having a BM for a week is something I've experienced with constipation as well, and I didn't have an obstruction. Sometimes, if you're not eating much and for whatever reason your "transit time" is slowed, it can just take that long for food/waste to reach the other end. It's not ideal and it's not fun, that's for sure. Have you changed your diet at all or taken any medications recently? Certain meds, like for me the nausea medicine zofran can really slow down my transit time and stop me up for several days at a time. If I take zofran and imodium at the same time, that sometimes is enough to back me up for days or even a week.

As for me, I'm starting to do better. I did enjoy my birthday but I think I overdid it, as I paid for it the next day. I'm doing a bit better now. I had gone back up to 20 mg prednisone, and as of today I've tapered down to 15 mg and that seems to be successful (if my body doesn't want to taper, it lets me know with sharp pain and sometimes also nausea and bathroom trips, but so far none of that today). This election nonsense has really, REALLY stressed me out as well (let's just say I am NOT happy with who my country elected), and so I spent yesterday basically just crying all day, and that's done a number on my stomach and I've had no appetite. I'm feeling a bit better today although I'm staying off facebook and not watching TV - as long as I avoid that stuff then I mostly avoid bursting into tears.

I see my GI on Monday afternoon so we'll see what he has to say about LDN! If he says no then I'm surely going to just burst into tears yet again, so maybe I can use that to get his sympathy. :p I'm emotionally delicate right now, don't mess with me, ha ha.
 
I think it helps that I'm not managing to eat much right now, I think if I was able to eat more I would be in significant pain by now to be honest. It has crept up a bit today and tonight I've tried a few fibre rich foods to try and get things going so suspect tomorrow will be more pain if I'm honest.

Cat I had wondered about transit time as I suspect my gastric transit is slow, so maybe it could be impacting my bowel transit times? I mean, I've been eating less, I've been drinking less (nausea) and moving less (nausea, weakness and being cold) the last week or so, so I guess that could be related too? I've also had some endometriosis pain so I guess theoretically something could be swollen and pressing on something or maybe an adhesion is causing problems.

It's definitely not a full blown obstruction as I'm passing gas, it just feels like it's all stuck somewhere else as TMI but when I inserted a finger there was nothing there and I've had no "I need the toilet" feeling at all. I had wondered about impaction to be honest as sometimes my haemorrhoid swells so much I struggle to pass stool, but there's nothing there and using my steroid cream hasn't helped like it usually would.

It's just so frustrating! I don't know if I should seek medical advice or whether it's okay to just go buy a laxative from the chemist? I have a ton of fybogel from the consultant so maybe do a couple of days of that and no food just lots of liquid? Then if no luck try a laxative? If I didn't have digestive issues already I would be at the chemist first thing for a laxative but I'm scared of making things worse.
 
Oh and Cat, though I'm not American I can understand that feeling to a degree! I think most of the UK have had a very similar response to the news actually. I will definitely be keeping you in my thoughts. I'm glad you managed to get out for your birthday though :) I will definitely be sending good vibes your way Monday for the GI appointment!
 
Whoop BM this morning! Definitely feeling a little better but not completely so just going to stick to liquids today for the most part and maybe a small high fibre snack later :)
 
I had my GI appointment today. It went fairly well. Since I'm apparently flaring again/still flaring, we agreed that I should have an MRE done. So that's scheduled for Dec 2nd. I also had a bunch of bloodwork done today.

He wants me to try a med called Lotronex. I hadn't heard of it and I'm not super thrilled with what I've read about it briefly online today. But, he said if it doesn't work or doesn't work well enough for me, then I can also try LDN!!!! :D I'm much more excited about that prospect, so the plan for now is to try the Lotronex and give it a chance and then try LDN. I think Lotronex is mainly made for IBS, not IBD, but my GI explained in some technical terms why he thinks it'll help me (it inhibits certain receptors and some sciencey stuff), so I'll give it a shot. I'm definitely happy though to have LDN as my backup plan!

I'm also going to stay on 20 mg pred until we know whether or not Lotronex works for me. My GI said it should work quickly, like in a week or so I should at the very least see some difference, he thinks. So, we'll see. I'm supposed to start the Lotronex today (going to the pharmacy shortly to pick it up) and am to call my GI in one week and let him know how I'm doing.
 
Cat I was just about to post saying good luck for the appointment! I'm glad he hasn't ruled out the LDN for you!
That's great he has scheduled the MRE so quickly for you, I hope it will be the thing that finally gives you your answer :)
 
sarahfh said:
Cat I was just about to post saying good luck for the appointment! I'm glad he hasn't ruled out the LDN for you!
That's great he has scheduled the MRE so quickly for you, I hope it will be the thing that finally gives you your answer :)
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I agree
 
Hah, Sarah, he was actually trying to get the MRE done quicker than that! We were hoping it'd be within 1 week, 2 at the most. This is almost 3 weeks away which seems like a bit of a wait! Or maybe it's just because it doesn't really feel like November yet (it's been so warm here lately, it feels like September still) so to say that I have a test in December, it seems like a long way off! Although I did put up some of my xmas lights yesterday so intellectually I know December is coming soon (I know, it's still a bit early for xmas lights, but with this flare and the election and everything, I've been really depressed and having a hard time, so I felt like I wanted pretty cheery lights to make me happy). Anyway, there are apparently only 2 places in my city that do MREs, so I guess there's always a bit of a wait. Less than 3 weeks isn't bad though. And it's on a Friday afternoon so I can go home and rest afterwards.

And yeah, I'm SO happy that he's open to LDN. I just have to try this other med first and see how that goes. I'm much more hopeful about LDN than this other med but I'll give both a try. I just can't believe he actually agreed to let me try LDN if I want/need to - 2016 has been such a terrible year, it's literally shocking when something actually goes my way! :p After everything that's happened, especially recently (I don't want to get political, but let's just say I've basically done nothing but cry since the election), I am just now mentally prepared for the worst possible outcome of every situation. When things go right, it's a big surprise!
 
Honestly everything happens so slow over here that three weeks would be considered an urgent one here! Mine was routine and something like 8 weeks after it was ordered...
It's only really got cold here the last couple of weeks to be fair, and the last couple of days have been quite mild which was a welcome break for me!

I see nothing wrong with doing something to cheer yourself up and if putting up Christmas lights works then there is nothing wrong with it :) I've been feeling rubbish and I will admit I have been using retail therapy to cope, I need to slow it down though with Christmas coming! But I did buy thermal furry lined leggings today which are amazing and I may not remove until like March... haha.

I won't say much because I know for some it's a touchy subject but as a UK resident I completely understand your response to the election. My heart sank on behalf of you guys when I read the results. I guess over here the opinion is very different though as I'm yet to meet or speak to anyone who is happy with the outcome.

I've got a week off work now and mentally I'm struggling which sucks, I don't feel like I can truly enjoy my week off between having no plans because I only have like 3 friends, not feeling up to doing much and my brains weird behaviour over the last couple of weeks. I've been getting a bit low again which I can deal with, but I've also got a little voice telling me in order to get taken more seriously I need to lose a little bit more weight, just like a kilo (2-3lbs) which is insane because I need to be gaining not losing! But my stupid brain thinks it's the only way to get the doctors to actually listen to me. So now I keep standing in the kitchen with my brain having an argument with itself over a biscuit or whatever and it sucks so much. Never in my life have I thought "oh I shouldn't eat that" but it's been creeping in and I hate it and it scares me. The last thing I need is it to develop into a full blown eating disorder :(
 
Sarah, I think having an illness like this sort of forces you into disordered eating, at least at times. I have told you all about my anorexia when I was a teen, and I definitely get some of those thoughts with this illness as well. Heck, just this morning I was thinking I shouldn't eat anything (not that I had an appetite anyway) because the lower my weight was when I went to my GI, the more seriously I'd be taken. And I'm downright terrified of certain foods so my blood goes cold if I think I've accidentally eaten something like coconut (my #1 trigger food, will make me ill for days). It's not good to be terrified of food or to think you shouldn't eat something just for the sake of your doctors. I can definitely relate!

Yeah, it's not just the election but that was sort of the straw that broke the camel's back and turned me into a weepy mess. Today's the 6 month anniversary of my grandpa's death, and that's when things really went downhill for me. My grandpa died in May, in June we had to put my grandma in a facility because she can't be on her own (Alzheimer's/dementia) and that was super stressful, then I nearly sliced my finger off in an accident with a hedge trimmer, then of course I had my flare-up start in July, in August I was hospitalized for the flare, been fighting that flare and on pred ever since, and now my country has decided to elect the most heinous person I could think of... it's just all been a bit much, these last 6 months! I don't think I can take any more! I've been saying that 2017 has got to be better, but now with the election it may be another 4 years before things actually improve, ugh.

Those thermal fur-lined leggings sound wonderful! I have some fleece-lined leggings which I sometimes wear ice skating in the winter, I might have to seek out fur-lines ones though as those sound divine. I'm always cold in the winter (as thin as you are, I bet you are always cold too!) so I love anything warm and cozy like that.

As for what to do with your week off - do you do any crafts? Knit, sew, crochet? Those are the things that occupy a lot of my free time these days. I've been sewing and crocheting a lot of xmas gifts - currently working on crocheting a hat for my uncle to go with the scarf I already made for him. Crafting doesn't use up a lot of my energy, which I don't always have a lot of to spare anyway, and it makes me feel useful and worthwhile. It's been the thing that's basically kept me sane this year. :p I don't know what I'd do if I couldn't crochet or sew!
 
I'm so happy for you Cat at the prospect of LDN in the future! Actually, I'm almost jealous! Well, I AM happy for you, I wouldn't want to take that away, but just wish I could have it too, especially when I looked up the benefits and indications for it today. I only knew some people use it for crohn's, I didn't really understand it and should have looked it up previously. And even though I'm on the opposite side of the weight spectrum than most of you (but definitely think some of that weight is tummy bloating due to GI problems as my stomach used to be small proportionately compared to the rest of me but that has reversed now, and I just feel bloated all the time), I definitely understand the thinking some of you experience with GI problems. The "if only" weighed less perhaps you would be taken more serious is very understandable with my experience with the med profession. It seems like my medical tests for almost everything are just a tad off, but especially in the past not enough off usually to warrant real concern by the doctors and powers that be in the med profession, and I've even had to fight to get a lot of those tests done. Sometimes to the point of life threatening things being dismissed, such as stroke and pulmonary embolism. (The stroke wasn't diagnosed until years later because I couldn't get a neurologist to test. They - not just one- said "it would be feeding my neuroses. I swear I have something written on my forehead that says "don't take her complaints seriously!") Sometimes I want things to show up just because I want my complaints to be justified. I, so often, want to shout "I TOLD YOU SO!" Iknow I mentioned in the past that I put in a request with Doug that should I die suddenly from one of these complaints I have complained about so hard and so long about but they keep saying "it's nothing to worry about", to put on my tombstone "I told you I was sick." Of course, the docs would never see it, and I wouldn't be around here (as far as I know). And again, I really don't want anything to be wrong, I just want to be taken seriously at the complaints I do have. I know what I feel like better than any test even, if I can even get them to even test.
I have some non-GI tests coming up, starting tomorrow, which are an exception to this kind of thinking, I don't want my already known about heart problems to show anything worse than I already know they are. (I'm sure sure you can relate to this Ron50.) But even here, I already had some "I told you so" moments. It's not that any of us want things to be bad, it's just that we want to be heard when something is going on, already is bad, and so often we aren't.
Today I got my sewing machine out, and also spoiled myself with hiring a couple teenaged girls recently to help with housework for my therapy. They were here today. :)
 
Cat yes you're right, with an illness like this it's so hard to have a healthy relationship with food! It definitely doesn't help that I've had a lot of nausea recently so I've not wanted to eat, though like yourself I don't really have an appetite anyway.

Wow yes you have had a stressful 6 months haven't you! I remembered about your grandparents but forgot about some of the other things. It's not surprising you're finding it tough. I always find once the clock change happens my mood dips a bit too, nothing worse than cold and dark nights!

I crochet and attempt to knit, so I will be doing some more of the massive blanket I'm making. I like to bake too so I'm going to do a practise run of the cupcakes I want to make for our work Christmas feast thing where everyone brings something in. I will be dishing them out to my friends this week though as I don't think I could eat one let alone 12 haha. Mostly I think I'm just going to rest up because I'm pretty worn out and weak.

It sounds silly but I was hoping that things would be further forward and that this week off could have been used for a planned admission to start tube feeds :/

Sandy I hope the tests go as well as possible for you! It's awful having to fight for tests and answers isn't it, why can't doctors actually listen to what we tell them?
 
Sandy, what are you sewing? I need to do a lot more sewing before xmas, in particular I need to make pillowcases. I can't remember if I already told you this story or not so ignore this if you've heard it already. When I was little, any time I stayed over at my grandparents' house, I'd get to use this Bambi pillowcase that my grandma had. It was like a thing of legend for us grandkids, we all loved the Bambi pillowcase and all 6 of us have very fond memories of it. Well, when my grandpa died, we moved my grandma into a memory care facility, and then we had to clean out and sell her condo. In cleaning, I found not only the Bambi pillowcase, but also a Bambi sheet! So I'm going to use the sheet to make Bambi pillowcases for all of us grandkids. I want to get them made and mailed out to my cousins before xmas, so I need to get working on that.

Hmph, my pharmacy was out of stock of my new med, so I wasn't able to start it yesterday. They're getting more stock in today though so I can start it this afternoon.

Sarah, baking sounds nice, I like when my house is made warm from the oven being on and lovely smells coming from it. I'm unfortunately terrible at both cooking and baking (even if it comes in a box with instructions on how to bake it, I'm still likely to mess something up!). I'm going to an early thanksgiving family get-together on Saturday, though, and I was told to bring a pumpkin cheesecake. My hubby is a chef and he also bakes great cheesecakes, so I'm trying to get him to make it for me! He told me it's "so easy" to make a cheesecake, but I've never made one AND it doesn't come in a box with instructions, ha ha, so I'm pretty sure I would not do well with trying to make a cheesecake on my own! Hubby is working 7 days this week though (!!) so I don't know when he's going to have time to bake a cheesecake. Eek!

Sandy, yes, I feel similarly about LDN, it gets a ton of very promising reviews for not just IBD but for many various autoimmune/inflammatory illnesses. And basically no side effects, the main side effect that people report is that they had trouble sleeping but only for the first week. Um, yeah, I can totally deal with not sleeping well for one week! :p I still gotta try this other med first, but I'm really jazzed about the thought of LDN. It holds so much promise and basically no risk. It's true that it doesn't work for everybody, but I'm still really excited just by the thought of it. It could help a lot and almost certainly won't hurt, so worst case scenario is that it does nothing for me.
 
Cat- a-tonic
Please realize no meds are risk free
Ldn crosses into the brain and stops the production of dopamine for a bit
Tricking the body to produce more which gets released all at once -hence the vivid dreams and trouble sleeping in the average person
But dompamine regulation issues either too much or too little has implications in bipolar ,depression , Tourette's and many many other disorders
So just like other meds there are risks and benefits
Hopefully it will help you
But it's good to know the risks ahead of time
Good luck
 
Yes, sorry, I know that there's risks with everything and I should have clarified that. But when you look at all the IBD meds and their risks, the risks of LDN seem to me to be extremely low, even lower than the risks of the very mild Lialda that I'm currently taking (pancreatitis and kidney failure being the two biggest risks there). I know there are risks, but relatively speaking, the risks of LDN seem practically negligible.
 
this may be a shot in the dark but I am strugging.
I am 24 and have been diagnosed with PCOS and Hyperandroganisisim. I have been seeing a endroconologist for about 8 months now. He informed me that my androgen levels were crazy and he was very concerned. I have been experiencing symptoms like headache, sweating, depression, nausea, and muscle pain. I am currently taking a androgen blocker but developed colitis in august. Which I will just say blows. I have been able to lose no weight even though I barely eat and symptoms have got worse. The abdominal pain has become so bad but I do not if should reschedule my January appointment for sooner. Any ideas or personal experiences?
 
Af814 said:
this may be a shot in the dark but I am strugging.
I am 24 and have been diagnosed with PCOS and Hyperandroganisisim. I have been seeing a endroconologist for about 8 months now. He informed me that my androgen levels were crazy and he was very concerned. I have been experiencing symptoms like headache, sweating, depression, nausea, and muscle pain. I am currently taking a androgen blocker but developed colitis in august. Which I will just say blows. I have been able to lose no weight even though I barely eat and symptoms have got worse. The abdominal pain has become so bad but I do not if should reschedule my January appointment for sooner. Any ideas or personal experiences?
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I would say if there are any cancellations have them pencil you in sooner.
 
I agree with Ron, you should go in sooner. Any time pain from somewhere in the body feels unbearable, it is time to get in as soon as you can. Pain is the body's way of telling you something is wrong. Depending on where you are in the world (type of healthcare system) and/or how busy that particular doctors practice is can make a difference in how fast you get in, however. But stand your ground and let them know, and firmly, what kind of shape you are in.
Cat, as you know from elsewhere on the forum yesterday didn't end as bad as it was for a good part of the day, tho I never got to my sewing. Your memories with pillowcases sounds absolutely delightful! My younger memories were me teaching myself how to sew, and teaching myself how to make what I called "purses" back then (any little bag was a "purse.") I've got a list a mile long of projects I want to do (besides some needed altering and mending), but have narrowed it down for the time being to make some "picnic blankets/tablecloths" that are lightly quilted, waterproof on one side so they can sit on a damp grassy area (or table), and have grommets on the edges so you can tie them down if need be. I also want to make Allie (my dog) a comfortable bed to sit in with similar features for when we go fishing, but also with the added feature of a canopy for rain or shade.
Lots to do today. Had my echo done yesterday, get to go in and be fitted with a holter (heart) monitor today. Having worn them before anywhere from a couple days to a month, it's not a big deal, but always wonder when I have bowel movements whether I should push the button and write down the change I feel in my "heart sensations" as my heart always races then, but now my bowel habits have changed and I'm in the bathroom a lot more. Could be a strange read for interpreting results. :eek::ylol::ylol: (They have you push a button and journal every "symptom" you feel.)
 
Sandy, I've also got a verrrrry long list of sewing projects so I can relate! I hope to catch up on some sewing over the long holiday weekend next week. Next week Thurs I of course have to go to a thanksgiving dinner (it's my in-laws' turn this year to have us over, and I'm not really looking forward to it - let's just say they lean politically a different way than hubby and I do, so there's a potential for some arguments, particularly if my father-in-law has a few drinks). Ugh. But I'm off Thurs-Sun next week, so Fri-Sun I am planning to stay in, put up more xmas decorations, and sew. If I get really energetic then I may take my dog on a hike, but for the most part I'm going to stay in! It's supposed to get much colder out next week anyway - this week has been 50s/60s F which is quite warm for November in Wisconsin! Next week is supposed to be 30s/40s which is more seasonal and we may even get some snow, brr! So hiking will be dependent both on how I'm feeling and on what the weather is doing.

Speaking of how I'm feeling, I'm not sure if it's the new med or the 20 mg of pred or both, but I'm HUNGRY. :p My appetite came back in a huge way! Which is not a bad thing, it's almost funny. I never know what my crazy body is going to do next! Suddenly, I eat a meal and immediately start thinking about the next meal I'm going to have. Hubby is working long hours at a convention this weekend as a favor to his former boss, so for a few days I'm going to basically be on my own and will have to feed myself without hubby cooking for me. I'm already daydreaming about ordering ramen on Friday night - there's a wonderful ramen restaurant in my neighborhood, they do it the proper Japanese style and it's so delicious (if your concept of ramen is those icky little squares of noodles that college students eat, this is worlds away from that). It's every bit as good as the ramen that I had when I was in Japan, it's seriously wonderful. I'm soooo looking forward to having ramen! I'm going to be dreaming about it for 2 days! Also, earlier today my boss made some comment about how I need full access to a particular system to run some reports, but I only have partial access at this point - what she said was, that right now I have the frosting but not the cake. I was like, yes, cake! I need cake! :p I know it's a metaphorical cake, but now I need cake!... is it wrong if I have cake for dinner? I know it's not allowed on the low-FODMAP diet, but I didn't even have cake on my birthday as I was feeling so unwell then. I might literally need to get myself, like, a cupcake for dinner.
 
Ohh, I feel I've been out of the loop for a bit!!

Cat, I was on Lotronex for awhile for my "IBS-D". For me, dosing was like shooting in the dark. Either stopped me up until I'd take a break from the med, or too low a dose and no one effect at all. And the pain just stayed throughout. I sure hope you have a different result!!

In me news,, I just got the result from my biopsies from the endoscopy- the eosinophils are WAY down! So I get to stay on high dose PPIs. The stomach that was reddish has no h.pylori, so that's good, too. They said it's consistent with changes from high dose PPI (which made me roll my eyes).

Wishing everyone health!!
 
Wildmtn, did you get any side effects when you were on Lotronex? It's like day 3 for me of being on it, and I'm super gassy and my face is red and feels slightly hot. I googled, and it says gas and rash can both be side effects, and it said to stop taking it if you get a rash. I've been headachey too which is apparently another side effect. I emailed my GI this morning and I think I'm going to stop this med, wait a few days for it to clear my system, then start the process of getting LDN. (I have to find a compounding pharmacy, I think there are a couple in my area that do LDN.) I'm a little bit constipated too but still going at least once per day, so that part isn't bothering me too much. I didn't have high hopes for Lotronex, but sheesh, I don't need to get every side effect. Ugh.
 
Cat -- YES to the gas! It was super embarrassing, and I kept worrying that I'd "leak" on days when I wouldn't have a movement at all, because I was so used to D! However, I never had a rash. I would definitely stop if I were getting that. Good luck on LDN!!

one more "me" thing --- I have a disability hearing scheduled! OMG! I know I'm working now, but I still take so danged much time off, and barely get my 20 hours/week in. So I'm going to keep on. It has been so long since I decided to apply, this almost seems unreal.
 
Wildmtnhoney said:
Cat -- YES to the gas! It was super embarrassing, and I kept worrying that I'd "leak" on days when I wouldn't have a movement at all, because I was so used to D! However, I never had a rash. I would definitely stop if I were getting that. Good luck on LDN!!

one more "me" thing --- I have a disability hearing scheduled! OMG! I know I'm working now, but I still take so danged much time off, and barely get my 20 hours/week in. So I'm going to keep on. It has been so long since I decided to apply, this almost seems unreal.
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I hope great things for your hearing.
 
Good luck with your hearing, Wildmtn! I hope it's productive and you get approved for disability.

Yeah, the gas, it's been kind of crazy. It was particularly bad last night, not quite as bad so far this morning but it's still there. I couldn't tell you the last time I've been this gassy, it's awful! My face isn't quite a rash yet, but it's red and feels slightly hot and tight and just not right. Like it's going to become a rash if that makes sense. It's definitely disconcerting enough that I am discontinuing Lotronex.

Sooo, this means I get to start LDN soon! I want the Lotronex out of my system first, but I'm really excited that I get to go on LDN. I am trying not to get my hopes up too high, because if LDN doesn't work then I'm back at square one with no real options left. But yeah, I'm kind of pinning everything on LDN, I need it to be a miracle for me. Wish me luck!
 
Sandy, I can so relate to what you said a few days ago about wanting to be diagnosed with something just so you can prove to the doctors (and everyone else) that there really is something wrong with you. It's just so crazy to me that most people don't believe us. Why would we make this up? It really makes no sense. Sometimes I just want to yell at people! I can't believe they didn't believe you about your stroke though. Reading that made me so mad for you! I don't think healthy people realize how hard it is to not have people believe you when you're sick. I can't even begin to explain to them how hard it is and how it just makes everything so much worse. I had some weird health problems when I was younger, and my mom ALWAYS believed me no matter what. But she passed away right before this all started, so now I don't have the one person I feel like I need. These are kind of pointless stories but you can read them if you're bored. :) When I was in elementary school, I want to say around 2nd or 3rd grade, my stomach would hurt every morning, and then it would feel better in the afternoon. I missed school because of it a lot of times. My mom took me to the doctor and I did several tests, and everything came back normal. But she believed me, so she didn't give up. I had braces on my two front teeth then, and it turns out I was sucking in a bunch of air when I slept and that was causing the discomfort. I got the braces removed, and I was good as new! When I was in high school, I was really sick for a while.....bad sore throat, cold-like symptoms, and SO tired. After several weeks of being sick, my mom knew something wasn't right, so she took me to the doctor. The guy said I just had a cold and I was fine. A few days later, I fainted while I was at the mall with my friend. I came home crying. My mom took me back to the doctor and told them she knew something was wrong. Turns out I had mono. The point of my stories is just that I miss my mommy, and I really need an advocate like that right now!

Cat, I really really hope the LDN works for you! I'm so glad you finally get to try it. One of my family members had colitis, and he's on an immunosuppressant, which he says makes him feel completely normal with no stomach issues. My dad really wants me to try to get on the same medication to see if it'll help me. But I keep telling him that doctors don't just give out medication freely....especially kinds like that. So I'm glad you finally talked your doctor into letting you try LDN!

My scalloped tongue is driving me crazy today! That's actually all I wanted to say, but then I just rambled on. Haha.

Sending good vibes to everyone!!
 
Akgirl, I'm sorry about your mother, it sounds like she was a really good person and I'm sorry you lost the one person who advocated for you. I've never really had anyone advocate for me other than myself - I mentioned in a much older post, my parents didn't even notice when I was a teenager and was anorexic. They also didn't notice the 3 months in 8th grade when I had head lice (finally my mom and my brother caught it from me, so my dad bought the special lice-killing shampoo, and I snuck some for myself - but seriously, how do you not notice a young girl who is scratching her head and pulling bugs out of her hair for literally the entire summer??). I've never been able to count on them to advocate for me or be any type of moral support or even really notice me (my brother has always been the favorite and I've sort of been invisible in comparison). Sometimes they give me financial support but I think that's mostly out of guilt, because they've given SO much money to my brother over the years (he's a loser, ha ha) so they feel like they need to throw a few bucks my way every so often just in a vague effort to be fair.

I feel okay about it, though. I'm an adult and can take care of myself. My brother is also an adult and apparently cannot take care of himself. He's currently unemployed (he says he's looking for freelance work) and he has been living with my parents. He was supposed to only live with them for "a week or two tops" but it's been almost 6 months now with no end in sight. My mom coddles him and tells him it's no bother having him there, then she comes to me and complains how she wants her spare bedroom back. :p Well, then don't coddle him and tell him he's not a bother, give him a date when he has to move out! Seriously. He's 31 years old, he's capable of finding a job and an apartment.

Sorry for that rant. I'm exhausted today and I have to go see my family tomorrow and they've all been pestering me about various things so I'm in a bit of a mood. Pred is also doing weird things to my blood pressure so I feel a bit funny in that regard too, just not feeling quite like myself today. I gotta get off this pred, it's helping but it's also making me miserable!

Yeah, I've heard a few stories on the forum of doctors prescribing immunosuppressants to people who aren't fully diagnosed, but that's not the norm. My GI already said no immunosuppressants and no biologics, which is why I thought of LDN because it's not in either of those categories. My GI still hasn't gotten back to me, but hopefully next week we'll get the ball rolling on the LDN prescription. I stopped taking the Lotronex yesterday and I think it's already out of my system - it made me fairly constipated for the few days I was on it, but this morning I already had 4 bathroom trips within the first hour of being awake. :p Definitely not constipated any more!
 
I seem to have come down with my mum's stomach bug :(
She didn't vomit but had taken cyclizine which is a good antisickness, so I'm really hoping I won't vomit because my emetophobia is seriously giving me so much anxiety about this :(

This really was the last thing I needed! I want to cry but I'm too scared to incase it makes me vomit. I'm such an anxious mess I hate it so much. I had a gingerbread muffin this afternoon around 2pm and there is no way it will have got through to my intestines yet so I'm really scared :(

Sorry for the rambling mess!
 
Hugs to all of you wonderful people, I'm just sorry you go thru so much. I have to make this post short (for me :emot-q:) because I have company coming shortly. Sarah, my heart is aching for you right now, you sound totally miserable. Please know you have a lot of people behind you. As I've said before, I am a religious person (in belief, but fall short on how I should act considering my beliefs) so will say an extra prayer for you. Akgirl, some of your comments were actually an answer to some of my prayers. I'll explain later. I can definitely relate to stories both you and Cat have told. (And others to, but just referring to the last few posts.) Be back when I can.
 
sarahfh said:
I seem to have come down with my mum's stomach bug :(
She didn't vomit but had taken cyclizine which is a good antisickness, so I'm really hoping I won't vomit because my emetophobia is seriously giving me so much anxiety about this :(

This really was the last thing I needed! I want to cry but I'm too scared to incase it makes me vomit. I'm such an anxious mess I hate it so much. I had a gingerbread muffin this afternoon around 2pm and there is no way it will have got through to my intestines yet so I'm really scared :(

Sorry for the rambling mess!
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Have you called your doctor? If you have IBD and you caught the flu, it could get worse. Call him if you haven't. Best wishes.
 
Sarah, I'm so sorry to hear it! I hope it passes quickly without any vomiting. Do make sure to keep yourself hydrated even if eating isn't happening right now, you don't want to get dehydrated (but if you do feel yourself getting dehydrated, get to the hospital for IV fluids!). If you're able to tolerate anything besides water, I've found that ginger is a good natural anti-nausea treatment. Ginger tea would be ideal because then you'd be getting fluids and anti-nausea all in one. Hang in there, hun! Keep us posted on how you're doing. But first, get some rest.

Sandy, my stories in my previous post were not so pleasant so I'm sorry to hear you can relate. :( Hopefully you didn't also have unnoticed head lice! I remember it so clearly, I was feeling generally unloved and unnoticed, and I just wanted to see if they noticed me at all, and I happened to catch head lice right at the start of summer. So I made up rules for myself - I wouldn't directly tell them that I have head lice, but I'd scratch when it itched, and if I felt a bug I'd pick it out and smoosh it. I did so much scratching and picking in front of my parents, but still they never noticed. That's when they first broke my heart, that's when I first realized that I don't think I love my parents because how can you love somebody who ignores you to that degree? So to this day, I'm now 37 and I was I think 13 when I had the lice, I don't tell my parents I love them. My mom has complained about it a few times, but she's also never asked me why I don't ever say it. So either she doesn't want to know or still doesn't care enough to notice. She still doesn't know that I was anorexic, suicidally depressed as a teen, and she doesn't know about the lice. She doesn't know any of it. Sometimes I think I'll just write a book about my childhood, self publish it, and then anonymously send her a link on amazon and see if she makes the connection then. Probably not...

Sorry again for the vent! It's a venty day. Lately my stupid BP seems to spike after I take pred, and it takes hours for it to get back to normal-ish again. It's really unpleasant (it makes me dizzy and nauseous) and it's putting me in a bad mood and then I go off and vent about things that happened like 25 years ago. :p I'll save it for the book, ha ha.
 
Thank you Sandy, Ron and Cat.
I've taken an antisickness which has taken the edge off a little but still feeling terrible and spending a lot of time in the bathroom. I'm just thankful that my nausea has meant I've not eaten much the last few days!

Ron, between the way our system works here in the UK and the fact I'm still undiagnosed I have to just ride it out. If I'm dehydrated or anything there is obviously the walk in/urgent care and A&E if I need it though. I see my GP on Tuesday anyway though for a planned visit.

Cat I will definitely seek help if I need to don't worry, I'm not risking it with the state my body is in right now without the bug.

It's a little scary how many of us have had less than ideal childhood/teen years! My teenage years really sucked and ended with my dad kicking me out because I told him I was moving out then us not speaking for years. We have thankfully managed to talk about some stuff and have a relationship again, but there is still a lot unsaid and a lot of wounds there.
But again that's something that could go on forever haha! Cat I'm sorry your parents were so uncaring that must have been awful and I can completely understand not being able to say things like that still. Sending hugs your way!
 
Sarah, I hope you're resting and doing a bit better now. And hopefully tomorrow is a MUCH better day!

I really like my GI's staff. One of his nurses (not the usual one) responded to my emails, she agreed that because of the face rash that it was a good idea to stop the Lotronex. She's passing along my messages to my GI about me starting LDN, and she even recommended a good compounding pharmacy in my city! :) (LDN needs to be compounded - regular naltrexone comes in something like 50 mg tablets, and has to be turned into 4.5 mg capsules to make it into the low-dose form.) So, it seems like some progress is being made even though it's a Friday afternoon and I really hadn't expected to hear anything back until Monday at the earliest. I really get to start LDN soon! I am so excited!
 
That's great that you should get the go ahead to try LDN! I really hope it is the key to getting you back into remission!

I'm resting up and feeling a bit better than I was, although now I'm unsure whether it is a bug as after the initial D (4 episodes close together) I've had no more for hours and although I have some nausea it's not crippling. I guess time will tell. Either way I'm sticking to liquids tomorrow!
 
Sarah, just when you think things can't get any worse, they somehow do! Life is so cruel sometimes. I really hope you start feeling better soon. I'm proud of you for staying strong and making it through all this. You're tough! Don't forget that.

Cat, I can't believe your parents didn't even notice that you had lice! That makes me sad. I thought I had lice in elementary school, and my mom did lice treatments on me, but honestly, I don't know if I actually had it or not. I could've just been paranoid. And then the more you think about your scalp itching, the more it's going to itch. I never found any bugs in my hair. I can't believe you were picking bugs out and no one noticed! I feel like I'd notice if a stranger was doing something like that. I'm sorry you had to go through that. Your book sounds like it'd be an interesting read though. I actually had the best relationship with my mom. We literally were best friends and told each other everything.....like weird stuff that normal people wouldn't tell their moms. But I only got 23 years with her......again, life is so cruel sometimes!

I hope everyone can get some rest this weekend.
 
Whew, I'm physically and emotionally exhausted. In addition to company today, I had my last day of wearing a heart monitor, and I've been at the cardiologist's office for one reason or another for four out of five days this week. The hardest test, however is a three hour nuclear stress test next Tuesday, and I have to be off my cardio meds for the full day before, so know I won't be feeling well and will probably have my heart murmur rear it's ugly head. But they will see my total heart function better, and my current cardiologist has never witnessed my murmur. Overall, it scares me tho.
It is very sad indeed how many of us didn't have the best childhoods, or have parents die young, etc. No time to go into it now, but no, I (also) didn't have lice, but did have my share and then some of neglect, and also have dysfunctional siblings. I'll bet I'm the only one here that came from a family with nine kids! My parents have some situational similarities to Cat's grandparents, my mom's has dementia and is getting worse and she recently moved to where my sister can spend several hours with her a day (instead of a care center, but I'll bet that comes soon), and my dad died in March, shortly before Cat's grandfather. My parents were divorced tho. So much more I want to say, but it will have to wait.
Glad your nausea had settled down some, Sarah, and hope it stayed that way and continues to get even better.
All of you are awesome
 
Good luck with the stress test Sandy. The last one I had I couldn't do the exercise bike and they induced the stress with a drug. What a dreadful feeling , I thought I was not going to make it for a while and although they hit me with an antidote after the test my pulse and bp was wildly out of rhythm at midday the day after. Good luck , I hope your results are much better than you could hope for... Ron.
 
Hello again Cat!
Not looking forward to Monday which is C day :(! Still trying desperately to find someone who can drive me up to the hospital! £30 for a taxi isn't exactly ideal! Not to mention the embarrassment of struggling for a 35 minute drive with prep issues!

I still have family issues that's for sure... hence having no lift to the hospital available! Frustrated with life isn't the word! Tired and fed up of all this **** going on! Family are ********, everyone has refused to give me a lift as they are "too busy" as always. Like it's not stressful enough as it is having a scope but to have to take a taxi for a 35 minute drive with laxatives in your system... god help me!

Hope you guys are all alright too! Any tips for prep day tomorrow? Not done this in nearly 5 years!
 
ron50 said:
Good luck with the stress test Sandy. The last one I had I couldn't do the exercise bike and they induced the stress with a drug. What a dreadful feeling , I thought I was not going to make it for a while and although they hit me with an antidote after the test my pulse and bp was wildly out of rhythm at midday the day after. Good luck , I hope your results are much better than you could hope for... Ron.
Click to expand...
That is what I'm afraid of Ron, because I don't move very well and there is some question whether I'll be able to do it myself. But we shall see. I guess prepare for the worst and hope for the best.
 
So it's prep day :'( :'(!! Does anyone know if i'm allowed to drink coca cola all day or was it just breakfast time... i don't know if it classes as a clear liquid... i know fizzy lucozade does but not sure about coca cola!
 
There seems to be different advice everywhere... some say yes and some say no. Apparently it contains no fiber and thats why some say its ok but im just not sure! Fustrating... its 1:40pm here in the UK... i have to start prep at 5 and not eaten since 9pm last night... going to struggle!
 
As far as I remember, dark sodas were a "no" - just ginger ale, 7-up and the like were ok, because of the colorings.

I hope you found a ride!
 
RosannaKate, I was told nothing dark colored at all or anything with red or orange food coloring because it can look like blood where there is none and/or make regular anatomy hard to see! You especially don't want to look like you have internal bleeding anywhere where there is none! I hope things go as smoothly as they can. I absolutely hate prep day (as I'm sure everyone does), you'll be in my thoughts today. Hope the testing gives you some answers that are easily addressable! Hang in there.
 
As others have said I was told clear fluids only, nothing you can't see through out the other side of the glass, no red or purple colours. I was told no fizzy drinks but it seems that's one of those ones that varies place to place. Good luck with the prep!
 
RosannaKate said:
There seems to be different advice everywhere... some say yes and some say no. Apparently it contains no fiber and thats why some say its ok but im just not sure! Fustrating... its 1:40pm here in the UK... i have to start prep at 5 and not eaten since 9pm last night... going to struggle!
Click to expand...
You will be in my thoughts and prayers.
 
have you tried calling the physician's office? Is it really super cold? I had to drink it through a straw, so I didn't taste it much, then "chase" it with something like ginger ale. But you are getting sick, call the dr and ask for their advice!
 
With you being UK I'm guessing it will be either Movi Prep or Klean Prep?
I found having it super cold and drinking through a straw really helped. I would take a few mouthfuls then quickly have a mouthful of diluted apple juice. Also it made me feel so sick I had to basically ignore the prep instructions (bad patient I know) and I basically just sipped away continuously until it was all down me. I threw up about the last quarter but I did down it quickly as it was nearly midnight as I was stressing and crying and a general mess.
I was up all night literally but by by the time I had to leave for the 45 minute journey to hospital I was all cleared out.
Moral of the story, just go at your own pace and once things are running clear you're all good and you can stop. Honestly I think part the reason I did fine with only 3/4 of it was because I also managed to drink like a litre of the juice as well just trying to get the prep down.
If you are really really struggling though call the unit first thing in the morning and explain, they might be able to move you to a later appointment to give you chance to get it all down and going clear.
 
For my colonoscopy prep, I had Movi Prep, and I literally couldn't get it down. It was horrible, and I feel like my senses have been heightened since being sick, so I just couldn't do it. I called early the next morning, and told them I couldn't drink the prep, and they were able to reschedule my appointment for a week later and give me a different prep. A prep that I could actually get down! I took ducolax in the morning (and then had to leave work early because it started working quicker than I thought). And then in the evening I added a bottle of miralax to several giant bottles of Gatorade. So basically it just tasted like I was drinking a ton of Gatorade, which was much better than the salty lemon stuff. So there are other options! I don't know why they make people drink that nasty stuff when Gatorade and miralax is a viable option.
 
I have had ten scopes since colon cancer. My brother is a long term ulcerative colitis sufferer. He has had 40 scopes. He has both ends every year as he also has Barrets oesophagitis. We are both so used to movi-prep that he quite likes it , not me I tolerate it. You just do what you have to. I booked in for my lastest scope last week, I don't have the date for it yet.My brother had his a week or so ago. The usual problems but no progression. I am a bit nervous with this one , it has been three years. I am not sure my GI should have made it that long. I have had polyps on at least half of my scopes and cancer on the first. Ron.
 
I should add that my brother has turned 72 and many of his doctors find it difficult to believe that he has survived so long and so well with ulcerative colitis and proctitis. His main saviour has been one of the cheapest first line drugs , sulfasalazine. I know it was one of the first I tried. I nearly disappeared down the loo as well as nearly dying from clouds of my own noxious gas. Yet my brother has tolerated it non stop for forty years with barely a side effect. Sometimes you can get lucky. Ron.
 
My only colonoscopy included the use of MoviPrep. I hated the taste of it - it didn't matter what I did, it became so difficult to drink the last container. I wanted to throw up because of the salty lemon flavor. I have to say though, that I drank Coke Zero through the prep and it did not show up in the scope. Not saying it's a good idea - I didn't know I couldn't drink it because of the caramel color. Anyway, when I have another scope done, I plan to do the Gatorade/Miralax combo. MoviPrep was $60 on insurance which is WAY too much. :(
 
Not related to this forum, but health related nonetheless: I apparently spent way too much time on my feet Friday and Saturday, preparing and helping serve a pre-Thanksgiving dinner for work. I now have a "tiny" clot in a superficial vein. This wouldn't be such a problem if I didn't have a history of a DVT, factor V Leiden, and was already on blood thinners (Xarelto) for life. :( Now I get to worry about the clot spreading, the possibility of a PE, etc. My venous dr can't see me until Dec 1st. They aren't too worried, just told me to apply heat for the pain, keep the leg elevated, and be sure to get up and walk/move regularly, and watch out for warning signs. The ED basically said the same when they released me yesterday, except they went over the "reasons to come back" in depth.

Oh, and some of my blood work came back a little wonky -- like my BUN was <3, so they said I'm either drinking too much water, or eating too little protein. I think it's the latter, because I haven't felt like eating much of anything in days.
 
Wildmtnhoney said:
Not related to this forum, but health related nonetheless: I apparently spent way too much time on my feet Friday and Saturday, preparing and helping serve a pre-Thanksgiving dinner for work. I now have a "tiny" clot in a superficial vein. This wouldn't be such a problem if I didn't have a history of a DVT, factor V Leiden, and was already on blood thinners (Xarelto) for life. :( Now I get to worry about the clot spreading, the possibility of a PE, etc. My venous dr can't see me until Dec 1st. They aren't too worried, just told me to apply heat for the pain, keep the leg elevated, and be sure to get up and walk/move regularly, and watch out for warning signs. The ED basically said the same when they released me yesterday, except they went over the "reasons to come back" in depth.

Oh, and some of my blood work came back a little wonky -- like my BUN was <3, so they said I'm either drinking too much water, or eating too little protein. I think it's the latter, because I haven't felt like eating much of anything in days.
Click to expand...
I hope the best for you
 
Also not GI related, but I had the last of my heart testing yesterday, and now waiting for results. Never, never, never want to do that test again. I'd rather have a colonoscopy, including the prep, any day of the week, but think it wouldn't have been so bad without underlying health issues already (including cramping and diarrhea.) And yes, I had to have my heart sped up artificially partially because of mobility issues. Still have a slightly elevated heart rate, but tolerable today compared to yesterday. In fact, I never want to repeat this whole week for many reasons. (Or year. Or last five years. Sorry for my little pity party.)
Wildmtnhoney, I feel for you with your recent developments, my heart testing is also a result of similar circumstances, my recent ER visit showed elevated d-dimmer which is often indicitive of blood clots, and I have a history of PE and DVT, as well as heart issues and stroke issues I've talked partially about before. Don't let my heart and stroke issues scare you, tho, it's probably my heart issues that started the whole thing, not the other way around. I also don't do well thanksgiving week because of family and other issues, it's supposed to be a day of thanks and it's a day I resent for many reasons. I'm more thankful for other days. Hope the rest of you are ok. I'll try not to be so grouchy next time.
 
I hope the results don't take too long Sandy, I'm sorry it wasn't a good experience so hopefully it will be useful.

Just wanted to pop on and say Happy Thanksgiving to those of you in the US, although it's not something we celebrate here in the UK I like the idea of Thanksgiving.

I've hit my lowest weight yet today, 42.7kg leaving my BMI at 14.7 which is scary. I've forced the two ensures down today so hopefully that will help! Also I called my consultants secretary yesterday, I'm on the September review list but they are running 3-4 months behind which sucks. They have received the letter from my GP asking to see me sooner and actually the secretary recognised my name from seeing the letter, she will flag me up with the consultant who has just got back from holiday so not seen the letter yet. The GP also included the letter from my dietician recommending tube feeding so hopefully she will listen to that! I've also asked for a copy for my own records. So hopefully I can get bumped up the list although I'm still doubtful I will be seen before Christmas to be honest.
 
Sarah, you need to insist you be seen sooner! That is just scary to me! If they can't get you in, go to the ER (or A&E as it's called there I believe) because it could be affecting your electrolytes soon, if it isn't already.
 
Last time I went to A&E with these symptoms they were absolutely useless so I'm slowly giving up hope of getting anywhere if I'm honest. Although I've decided if the symptoms are still troubling me over the weekend I will go to the walk in just to be safe. It's possible they will send me to A&E anyway but we will see I guess.
 
I sure hope they do, and that the A&E does everything they can to help you. It has been my experience that sometimes the people in places like that are genuinely concerned, and sometimes they are just doing what they have to to get by. Don't stop advocating for yourself though.
 
Hi everyone:

This is my first post in this group, but I have read just about every post (been hanging around unofficially since 2013) and wanted to express how much I admire each and every one of you for plowing through all the misdiagnoses, lack of diagnoses, and outright dismissals by many of your doctors. I thought I would share a bit of my story because I think it illustrates how some GIs think.

First, I adore my GI. He is very thoughtful and we always talk things out together. He diagnosed me with celiac disease with an endoscopy and blood work in the fall of 2000 after six weeks of intense stomach pain. During the upper GI series in advance of the endoscopy I actually had every radiologist in the hospital in my room trying to figure out what they were seeing on the X-rays. Three years later I became severely anemic, and after a bone marrow biopsy showed no iron (my hematologist told me that a healthy person normally dies with the iron with which they are born), and an upper endoscopy revealed severe ulceration as well as a stricture in my duodenum. The pathologist read the biopsy as crohn's but my GI wasn't sure; he suspected lymphoma or refractory celiac disease. He put me on a heavy dose of PPIs and on a repeat endoscopy found everything healed. Over the next few years I continued to have problems with anemia, so he performed a colonoscopy to look at my terminal ileum, but everything was fine there as well. Over the next ten years I suffered from periodic bouts of abdominal pain, and had another upper GI series after which I ended up in the hospital as well as a capsule endoscopy which were both fine.

At the end of July 2013 I developed severe abdominal pain and couldn't eat or drink. The ER admitted me after a CT scan showed severe inflammation throughout my small intestine. I was in the hospital for a week on IV steroids, morphine, and nil per mouth. After I was discharged I tapered off steroids with oral prednisone, but the pain continued so my GI put me on Entocort in order to control the small bowel inflammation. I lurched along, losing weight, never feeling that great until this past spring when I developed a large and extremely painful mouth ulcer on my hard palate which took almost two months to heal. When the ulcer was almost gone I began to have severe pain and vomiting again. At the ER another CT scan showed patchy inflammation in my duodenum and jejunum and I was hospitalized for another week of IV steroids and pain control. I should note that I rarely have diarrhea but am normally constipated. At this point my GI formally diagnosed me with crohn's and put me on 6MP which promptly gave me acute pancreatitis and made for a completely miserable summer.

My GP sent me for a consultation with another GI who told me I was just stressed and that the celiac and crohn's diagnoses were both incorrect because I had shown good mucosal healing after each episode (the strict gluten free diet since my diagnosis in 2000, made a breeze with all the great gluten free products now on the market, as well as positive biopsies and antibody tests were incidental, according to him). He told me I needed more fiber in my diet, and put me on a 10 grams/day fiber meal plan. I promptly became so constipated I didn't poop for two weeks.

Two months ago I wound up at the ER again with severe pain, and this time the CT showed narrowing and tethering of the terminal ileum with everything backed up behind the narrowing. My GI then put me on Entocort again to see if we can avoid the biologics, but I am having a difficult time with it because it is dramatically increasing my migraines.

The point of this ridiculously long story is that crohn's can be very difficult to diagnose, and the patchy inflammation can be hard to spot, especially in the mid small bowel. All doctors, not just GIs, like to see what they are diagnosing (imaging, blood work, and biopsies) but many people have crohn's where it is hard to see and unremarkable blood work. My CRP and ESR were both very high last spring, but previous tests had turned up nothing.

So to all of you struggling to get a diagnosis I am saying I understand. Keep pushing your doctors actually to help you. Don't let people tell you "it's all in your head", something I heard before my celiac diagnosis. I'm rooting for all of you.
 
Last edited:
Jabee said:
Hi everyone:

This is my first post in this group, but I have read just about every post (been hanging around unofficially since 2013) and wanted to express how much I admire each and every one of you for plowing through all the misdiagnoses, lack of diagnoses, and outright dismissals by many of your doctors. I thought I would share a bit of my story because I think it illustrates how some GIs think.

First, I adore my GI. He is very thoughtful and we always talk things out together. He diagnosed me with celiac disease with an endoscopy and blood work in the fall of 2000 after six weeks of intense stomach pain. During the upper GI series in advance of the endoscopy I actually had every radiologist in the hospital in my room trying to figure out what they were seeing on the X-rays. Three years later I became severely anemic, and after a bone marrow biopsy showed no iron (my hematologist told me that a healthy person normally dies with the iron with which they are born), and an upper endoscopy revealed severe ulceration as well as a stricture in my duodenum. The pathologist read the biopsy as crohn's but my GI wasn't sure; he suspected lymphoma or refractory celiac disease. He put me on a heavy dose of PPIs and on a repeat endoscopy found everything healed. Over the next few years I continued to have problems with anemia, so he performed a colonoscopy to look at my terminal ileum, but everything was fine there as well. Over the next ten years I suffered from periodic bouts of abdominal pain, and had another upper GI series after which I ended up in the hospital as well as a capsule endoscopy which were both fine.

At the end of July 2013 I developed severe abdominal pain and couldn't eat or drink. The ER admitted me after a CT scan showed severe inflammation throughout my small intestine. I was in the hospital for a week on IV steroids, morphine, and nil per mouth. After I was discharged I tapered off steroids with oral prednisone, but the pain continued so my GI put me on Entocort in order to control the small bowel inflammation. I lurched along, losing weight, never feeling that great until this past spring when I developed a large and extremely painful mouth ulcer on my hard palate which took almost two months to heal. When the ulcer was almost gone I began to have with severe pain and vomiting again. At the ER another CT scan showed patchy inflammation in my duodenum and jejunum and I was hospitalized for another week of IV steroids and pain control. I should note that I rarely have diarrhea but am normally constipated. At this point my GI formally diagnosed me with crohn's and put me on 6MP which promptly gave me acute pancreatitis and made for a completely miserable summer.

My GP sent me for a consultation with another GI who told me I was just stressed and that the celiac and crohn's diagnoses were both incorrect because I had shown good mucosal healing after each episode (the strict gluten free diet since my diagnosis in 2000, made a breeze with all the great gluten free products now on the market, as well as positive biopsies and antibody tests were incidental, according to him). He told me I needed more fiber in my diet, and put me on a 10 grams/day fiber meal plan. I promptly became so constipated I didn't poop for two weeks.

Two months ago I wound up at the ER again with severe pain, and this time the CT showed narrowing and tethering of the terminal ileum with everything backed up behind the narrowing. My GI then put me on Entocort again to see if we can avoid the biologics, but I am having a difficult time with it because it is dramatically increasing my migraines.

The point of this ridiculously long story is that crohn's can be very difficult to diagnose, and the patchy inflammation can be hard to spot, especially in the mid small bowel. All doctors, not just GIs, like to see what they are diagnosing (imaging, blood work, and biopsies) but many people have crohn's where it is hard to see and unremarkable blood work. My CRP and ESR were both very high last spring, but previous tests had turned up nothing.

So to all of you struggling to get a diagnosis I am saying I understand. Keep pushing your doctors actually to help you. Don't let people tell you "it's all in your head", something I heard before my celiac diagnosis. I'm rooting for all of you.
Click to expand...
I am sorry for all you have been through. I liked your encouragement.
 

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