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lizbeth said:
Oh I love the snigger, I think I would too if it was mine....she drives me mad!

I need to talk to my new gi about the coloured water (by the way my new gi is drop dead gorgeous!).

I nearly got caught out again by blooming predictive text, nearly posted "Iove the sniffer!" Now that would have been embarrassing......
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Mine was pretty nasty to me when I was at my sickest, and often warned my husband I was pretty useless if I couldn't make any money! Then I was hospitalised and she was that sickly sweet kind of way that is totally fuelled by guilt.

We get on like a house on fire now but I don't think I'll ever be able to forgive her for the things she said about me back then.

She was planning to go to the appointment herself by walking to the train station (15m) taking the train (30m) walking to her sons work (20m) then him driving her to the hospital (15m). I'm pretty sure she would poop herself trying to do that, not only how horrible and weak you feel after fasting. It's amazing how people underestimate prep until they go through it themselves. I have the morning off work so if she's agreeable I'll take her and drop her off later on.

I am hoping for some advice from you guys and the following paragraph is going to be really gross tbh. You all know I've been doing really well on LDN (interestingly my ankylosing spondylitis symptoms are all gone too) until recently I became very nauseous. I had had no D for about 2-3 months. It transpired that my husbands family had all come down with pretty much the exact same thing as what I have and we were all out at the weekend. I had stepped back my LDN in case it was that, but pretty much come to the conclusion I had a bug, which makes sense because I felt physically unwell and fluey which rarely happens with my other stuff.

So, today is my best day nausea wise and I'm almost feeling human again. But last night I woke up at 3am, horrific but brief belly pain and running to the toilet. Basically a LOT of undigested food :eek2: and very pale d.

This happened to me prior to and during the cholecystits episode about 5 months back, which was diagnosed by the on call doctor but by the time I had the ultrasound nothing showed. My GP says either I passed a stone or the inflammation had resolved. Try telling a GI that.

Today it's much the same. It's the colour that worries me, it is almost white. I worry the two things are related. Doctors don't take me seriously, so where do I go :S Could a simple tummy bug cause this?

I have brought forward my appt with my LDN doc cause things are getting a little complicated.
 
Naturelover thanks for the link, you could be right about , I had never even heard of equipment like that but I'm really glad to know about it.

Isgs, my MIL was wonderful until I became a mother myself then it was like a demon had landed!! Seriously, she's not that bad (much), she would do anything for me but just doesn't understand that I don't want her round all the time, I have to keep a key in the door to stop her letting herself in, I mean it's my house not hers, I felt like I had no privacy in my own home..........oh dear I'm sorry everyone for the vent, I will stop now :eek: I'm sorry I can't offer you any pearls of wisdom regarding your query :(.

How is everyone else doing today?
 
Hello everyone,
Thought you might all like an update regarding my NO visit yesterday.

My MRI scan was clear! Yes! No regrowth of the tumor showing, just some scar tissue forming. She thinks the headaches are migraines triggered by the surgery, bc I used to get them in the same part of my head as the surgery. They were getting so frequent because the meds I was taking were causing them to rebound even worse. So I've gotten some new meds to try, hopefully I will be having fewer and easier headaches. So I think I'm feeling pretty good today!
My belly is quiet this morning, I had normal BMs yesterday and today, and my back doesn't even hurt that much. I'm blessed today.
 
mccindy said:
Hello everyone,
Thought you might all like an update regarding my NO visit yesterday.

My MRI scan was clear! Yes! No regrowth of the tumor showing, just some scar tissue forming. She thinks the headaches are migraines triggered by the surgery, bc I used to get them in the same part of my head as the surgery. They were getting so frequent because the meds I was taking were causing them to rebound even worse. So I've gotten some new meds to try, hopefully I will be having fewer and easier headaches. So I think I'm feeling pretty good today!
My belly is quiet this morning, I had normal BMs yesterday and today, and my back doesn't even hurt that much. I'm blessed today.
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That's fantastic news, good to hear something positive :).
 
Chickadee, good luck with the antibiotics & antifungals! Keep us posted on how it goes. I've got my fingers crossed for you that this will get you a lot of relief and allow you to eat some new things besides your 4 go-to items.

Cindy, sounds great, I hope the new meds help a lot! Great news about the MRI being clear, too. Sounds like a very worthwhile appointment! :D

Lizbeth and lsgs, I have had in-law issues too, although for my my father-in-law was the issue. My mother-in-law has always been really nice to me with regards to me being ill and not being able to eat certain foods, etc. But when I first got sick, maybe 6 months or so into my illness, my father-in-law got drunk when we were over there for dinner, and he then started to lecture me and yell at me, things like, "If you can't cook and eat like a normal person then your marriage to my son will fall apart." He also said that since he couldn't wrap his head around being ill all the time, that therefore I must be faking for attention. He said some really horrible things to me and didn't stop even after I started crying. I ended up leaving shortly after I started crying, and on my way out the door, my mother-in-law apologized for her husband's behavior and she told me I can call her anytime if I need to talk or whatever. She was really kind to me and my f-i-l was so horrible that day. I think my m-i-l must have given my f-i-l a stern lecture, though, as afterwards he was much nicer and more understanding. Maybe a year after that incident, my hubby made a joking comment about how I can't eat much of anything, and my f-i-l actually defended me! He said something along the lines of, "Don't say things like that, it must be really difficult to have to live with an illness like that and you should be nice." !!! Complete change from the horrible drunk who told me my marriage would fail and that I'm faking it! I still get anxious when I see f-i-l having some drinks, but so far he's still been nice to me even when he's drinking. Still, I don't totally trust it, and I don't know - I guess I can forgive, but not forget that incident, you know? At any rate, he seems to have a changed attitude now.

Bleh, I still have a cold. I'm on the mend, but still coughing and sniffling. Feeling antsy too, I really want to go to the gym but I'm not sure if that's the smartest idea. I am stubborn though so I'll try it anyway and I'll use lots of disinfecting wipes on the equipment after I'm done with it. It's snowing and it's supposed to snow tomorrow too. But I am feeling okay in spite of all this, I'm feeling better than I was yesterday, and I've got a 3-day weekend coming up. I really want to go out for Chinese, I think egg drop soup would be just the thing for this cold! And that's a good sign, my appetite is coming back (I've had zero appetite since this stupid cold started). So things are looking up! How's everyone else? I hope you guys can all have a nice, restful weekend.
 
Questions: does Aleve have any negative effects on any of you for GI reasons? My NO says I can take it for the headaches I've been having.

And I have this super irritating itchy rash on my lower legs, like little tiny water blister looking things... does that sound familiar to anyone?

Thanks all for your kind words, I'm super pumped about my good news and now on to dealing with the belly stuff!
 
@Cat-- Thanks. I'm hoping this will help too! I don't usually do well with antibiotics so I'm a little nervous. I've stopped the Gastrocrom for now (3 mos. and no results), but I'm thinking I may try it again after my treatment for the infections. Did you ever get your biopsy results back re: mast cells?

@Mccindy-- GREAT news! I'm so happy to hear that. As far as the water blister rash, I have had that before, but unfortunately, the doctor didn't really know what it was. I think I was given some kind of steroid cream. Have you started any new meds or tried any new foods or lotions or soaps? I would think the main concern would be that it's a an allergic reaction to a med.
 
Cindy, I can't properly answer either of your questions unfortunately! I haven't tried Aleve so I have no idea how it would affect me. Is it an NSAID? I recall reading that basically the only "safe" OTC pain med is Tylenol, as that's the only one that's non-NSAID, non-Aspirin, non-ibuprofen, etc. If Aleve contains anything like ibuprofen or aspirin, or if it's an NSAID, then it's probably best to avoid it. NSAID use can cause digestive troubles in healthy people, and can make them worse in those of us who already have bad tummies.

I can't offer advice about your rash, either. I know erythema nodosum is a fairly common rash/skin condition that happens in conjunction with IBD, but I googled it and it doesn't sound like what you've got going on. Eczema perhaps? I don't think I've had any rashes since I've had IBD, that's like the one symptom I haven't had (knock on wood!).

Chickadee, no, I didn't hear anything back about the biopsies/mast cells. I see my GI next month and I'll mention it to him then, but I'm presuming no news means no ME. I hope the antibiotics treat you okay - I can't recall, or maybe you didn't say - what antibiotic are they putting you on? I've been on multiple different antibiotics over the years for recurrent UTIs, I think they usually give me bactrum, and that one always gives me trouble. My guts don't like it and I seem to get a yeast infection about half the time, too. In the spring of last year, when I started having blood in my stool, they thought I might have salmonella so they put me on cipro, and that antibotic treated me much better. It made my guts feel a bit better, rather than worse, and I didn't get a yeast infection. It did make me feel really silly and loopy when I first started taking it, though, like I was mildly drunk! I remember laughing at everything and just feeling silly and my head felt kind of spinny, it was very much like having a buzz from too many drinks. It took a day or so for that effect to wear off to the point where I could safely drive and wasn't acting like a fool. Anyway, if they put you on something like cipro, it may actually help your guts rather than anger them. And apparently the feeling drunk side effect I got is not common, so hopefully you won't get that one (although I do have to say, feeling drunk and not having a hangover was kind of a sweet deal, ha ha). :p

Ugh, it is still snowing! It's been snowing all day - just flurries, no real accumulation fortunately - but we are supposed to get up to 6 inches of snow tomorrow. I just want to hibernate! Maybe if I curled up in a blanket long enough, I could sleep till spring and wake up as a beautiful butterfly? :) Caterpillars don't know how good they have it! Ha ha!
 
Mccind--DO NOT TAKE ALEVE. DON'T DO IT. I'm think it's an NSAID, and even if it isn't, it's what my first GI said most likely caused my stomach erosions. It's wonderful for headaches -- seriously, works so well -- but he told me to avoid that stuff like the plague. As for the rash, any chance it's some kind of reactive dermatitis? I know allergic reactions can have a counterintuitive way of showing up -- the rash often presents in a different place than you'd expect. With some of the art supplies I use, I know I'm supposed to keep an eye out on my forearms because that's where the rash breaks out if you've developed a sensitization allergy, regardless of where you actually come into contact with the allergen.

From my end ... I went three whole days with no temperature above 99! AND my stomach feels better since cutting out high-lactose foods!

...oh, sure, I'm still bleeding and in pain, and I have a fever back today, but I'll take what I can get! Hahaha.

Spoke with my GI today. Still in a holding pattern. He thinks it's still unlikely my blood is coming from anywhere besides the hemorrhoids. Basically, the logic's this: I've had two more or less normal colonoscopies, a basically normal EGD, and an unremarkable CT scan. The normal CT makes the small bowel, which is really the only place left to look, pretty unlikely as a source of bleeding. When you add in a) the fact that I *think* I see blood so often yet haven't developed anemia, and B) the negative IBD blood panel ... further invasive stuff doesn't make sense. I see where he's coming from.

I kind of have to agree -- maybe it's not blood after all. I'd HAVE to be anemic at this point. Unless there's something that can prevent people from having a low RBC despite losing blood, but I don't think any phenomenon like that exists. Stranger things have happened, though, I'm sure...
 
Hi mccindy,
Could it be this: http://www.woundcarecenters.org/wound-types/pyoderma-gangrenosum.html

Here is more info about IBD and skin problems: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3273725/

I had the milder pyoderma gangrenosum vegetans form a couple of years ago on my shins. It started with small blisters, moving to what looked like a spider bite and then progressed to small ulcerations with purple around the edges. They cleared on their own. The more serious deeper ulceration needs good medical care and fast.

Be careful googling this disease--the more serious kind is very aggressive and the photos are quite disturbing.

I hope it clears up for you soon.
 
Bureaucratic - What IBD blood panel are you referring to? Do you mean one of the Prometheus blood panels (IBD serology 7, etc)? Or are you talking about CRP, ESR, etc? Either way, I wouldn't take the blood work 100% seriously. The Prometheus blood test can, from what I've heard, give you a different result based on which lab tech is interpreting the results. And things like CRP and ESR are normal (even in a terrible flare) in about 10% of IBD patients. I think I'm in that 10%. At any rate, my point is, bloodwork isn't the most accurate stuff ever, so don't go by that as a definitive answer.

I wouldn't go by a CT as being a definitive answer, either. CTs don't see a lot of detail. My GI explained it like this - a CT scan will get a decent "overall" picture of, say, the entire abdomen, and it sees bony tissue better than soft tissue. MRI, on the other hand, gets a good picture of one specific organ or area (say, the small intestine), and sees soft tissue better. In other words, a CT could have missed things that are small or might be hard to see, but an MRI or pill cam might be able to pick up on. So I would say, keep fighting for more tests, specifically MRE (MRI enterography) or pill cam. I wouldn't be satisfied that my small intestine was fine with only a CT.

Edited to add: In my personal experience, the difference between a CT and an MRI is vast. I had an abdominal CT, which didn't see any issues with my guts but did see "nodules" on my liver. They didn't know what it was, the CT couldn't see them in detail. They could have been a number of things, including cancer. I later had an MRI of my liver, which saw the nodules clearly and could diagnose exactly what they were, what size they were, etc. (Not cancer, fortunately.) They're benign tumors called focal nodular hyperplasia, the largest of which is between 2 and 3 cm is what I was told. Nearly 3 cm and the CT still couldn't tell what it was! So I don't put a lot of stock into CT scans. They're good for finding certain things, like calcium-based kidney stones, but they're not great at finding a lot of things, like everything to do with soft tissue basically.
 
Cat-- I believe they are putting me on Vancomycin, which is only used orally for C diff. (By IV, it's used for other things.) C diff. family infections are not responsive to many medciations, but Vancomycin works for some. The main side effects are listed as "nausea and stomach upset." I am allergic to a number of antibiotics though so the nurse was going to double-check with the doctor to make sure V. doesn't have cross-sensitivity with my allergic meds. After two weeks of that, I will have two months of Nystatin.

I've also done okay with Cipro for UTIs. I didn't have the "high" effects you mentioned.
 
Cat I can understand forgive but not being able to forget. After my 1st daughter was born a relative came to visit. I was about to jump in the bath. He said his wife was very upset she hadn't been invited to see my baby, he wasn't very nice about it either. My girls were both very premature, born 8and 10 weeks early, nobody but parents were allowed in. I will never forget the upset he caused and I don't think his wife I've will either. Families suck.........i
 
well thinking about the possibility of an allergic reaction I did not shower all weekend. (don't worry, I did some sponge bathing so didn't get too stinky!) This morning I did, but used my regular body wash ( I had switched for a bit) and did not use shaving cream. If all appears fine, I'll stick to the regular body wash and then try the shaving cream again, and if the rash comes back I'll skip it. I'm thinking maybe it was all too much for my skin? Especially with as dry as it's been this winter.

I had a pretty good weekend, even had my glass of wine yesterday and really enjoyed that! I did get a couple of headaches.

I'm a bit unsure of what to do for pain meds. My NO says absolutely don't take ibuprofen (which I already avoid), Tylenol or Vicodin, as they can all cause rebound migraines. The Aleve is the only pain reliever she cleared me to take, so I am not sure what to do. Maybe the magnesium, B2 and Topamax she is starting me on will do the trick and I won't have to worry about it. Hopefully I don't have any unmanageable pain from either my back or belly or head for a while.... ugh!
 
mccindy congratulations on your good news, so happy for you! :dusty:

The **** has really hit the fan between my docs. I don't want to say too much in case I jeopordise anything or get anyone in trouble but this is not nice at all.
 
BureaucraticNightmare said:
Mccind--DO NOT TAKE ALEVE. DON'T DO IT. I'm think it's an NSAID, and even if it isn't, it's what my first GI said most likely caused my stomach erosions. It's wonderful for headaches -- seriously, works so well -- but he told me to avoid that stuff like the plague. As for the rash, any chance it's some kind of reactive dermatitis? I know allergic reactions can have a counterintuitive way of showing up -- the rash often presents in a different place than you'd expect. With some of the art supplies I use, I know I'm supposed to keep an eye out on my forearms because that's where the rash breaks out if you've developed a sensitization allergy, regardless of where you actually come into contact with the allergen.
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Well, I should have listened to you. Although I had been taking the Aleve over the weekend for the off and on headache I had and it really did help. After your warning yesterday I went and still took one last night. My belly woke me up at 12:30, burning worse than I think it ever has. Probably the most agonizing burning I've felt. It went on until nearly 3, and let me sleep for about an hour, woke me up again at 4. Probably doesn't help that I also ate some beef on Sunday, which I know also gives me some grief. Today I feel pretty awful. My entire right abdomen feels like it is on FIRE. I even tried to go to the bathroom once last night, to no avail. This morning I was able to go but it hurt something awful, and gave me no relief. Guessing I'm just going to have to wait this one out....

As far as the rash, I'm thinking it was some kind of allergy . I haven't used my shaving cream for several days and the rash seems to be going away. So Ithink I'm going to avoid that stuff.

I am glad to hear the lactose-free is helping you a bit, I hope that you do eventually get some answers (gee, I'd like some too, darn GIs - this burning just cannot be IBS).
 
It sounds like you may have a histamine/mast cell degranulation issue. have you tried OTC antihistamines? They work wonders for me. When the body gets overloaded with histamines, mast cell degranulation can happen and then inflammation occurs ( anywhere in the body). I take one Allegra is the am and one Benadryl at night. It helps many people on the colitis forum.
Leah
 
leah H said:
It sounds like you may have a histamine/mast cell degranulation issue. have you tried OTC antihistamines? They work wonders for me. When the body gets overloaded with histamines, mast cell degranulation can happen and then inflammation occurs ( anywhere in the body). I take one Allegra is the am and one Benadryl at night. It helps many people on the colitis forum.
Leah
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I hadn't thought of that . If skipping the shaving cream doesn't do it, I'll check into it. I usually take Claritin all spring/summer/fall for seasonal allergies, so maybe I got more sensitive now that it's winter and I'm not taking it.
 
rather ironically im allergic to one type of anti-histamine, loratadine makes me come out in a rash and makes breathing difficult. im fine with cetirizine though, got to love our bodies :p
 
I know, we are all so different. It could be an added ingredient in some of these pills also that we react to. Some have soy, some gluten, some lactose ( eye roll) We have to be very careful with any supplement.
Leah
 
mccindy -- EEP. Sorry to hear the Aleve gave you trouble :-/. I never actually had any symptoms when I'd take it for headaches, but since it's the sole pain medicine I used to take, it's really the only thing that could've caused stomach inflammation (or so said the doc.) I think I know the kind of burning you're talking about though, or something similar -- where some part of the abdomen just hurts and seems to have nothing to do with whether or not you need to use the bathroom. I've had that happen several times. For me it's always in the upper abdomen, usually the left side -- feels like horrible heartburn, except it isn't in the chest at all. Not fun.

Cat -- The test I was talking about is an IBD panel of some sort -- it tests four or five things...GASCA, pANCA, ACCA, ALCA and AMCA. Test was negative for all of them -- I mean, there was some present for everything but all of them were well within the normal limit. But I tend to be super low with ESR and CRP too. I think I might be one of those oddballs though, IBD or no, because my ESR and CRP are low even when my white count's been way up. You're probably right though -- the bloodwork isn't the be-all end-all of diagnostic stuff. Hell, when I was like 17, my doctor freaked out because my thyroid was way off once -- hyperthyroid, she thought -- but then it was completely normal and stayed that way. If anything, it's on the slow side now. So, yeah, labs aren't everything. I had no idea that CTs were less useful for soft tissue stuff though -- that's really interesting. I have an appointment with my GP this week. I think I'll ask her about the difference. God knows I don't need any more radiation if I can avoid it. Between the chest stuff and the abdomen in the last year, plus all the x-rays I had on my bad hip and my knee growing up, I'm practically radioactive already!
 
Bureaucratic, and Cindy too, that burning in the stomach you described - sounds to me like gastritis. I have recurrent gastritis which is related to my GERD. If the GERD gets going too much, the stomach acid starts eating away at weak spots in the lining of my stomach, which in turn causes stomach inflammation and terrible burning pain. For me, it oddly also causes pale stools (the first time it happened, I thought it surely must be my gallbladder - but nope, it was gastritis).

Bureaucratic, good luck with the GP. MRIs don't expose you to any radiation as you likely already know - MRIs use magnets rather than radiation. MRIs are more expensive and take more time than a CT, which is I guess why some doctors like CTs over MRIs? Personally though I'd rather spend a few more bucks and a bit more time and know that I'm getting a better image AND no radiation.

How's everyone doing today? I'm having a bad joints day. My left knee, left wrist, and right hip are the main culprits today. It's super cold here which is not helping at all, my joints hate bitter cold. My guts are okay for the moment but I had yet another episode of bloody d a couple days ago, sigh. In other words, things are pretty typical for me. :p
 
BN, I'm thinking the Aleve probably got me because I took it three days in a row? So maybe if I just save it for when I have a really bad headache it will be okay... kind of leery though after that burning night. YOu're right, it did feel like a heartburn sensation, only in the middle of my right abdomen. And it went away after istopped taking the Aleve. Ugh.

I'm also thinking of going postal on my pharmacy if they don't get my darn new med in soon! There's a new Walgreen's going up in town, should be opening soon, think I'm going to switch over to them when they do. Shopko has thoroughly ticked me off with every prescription I've had with them being delayed.
 
Cindy, I use Walgreens and they've always been great to me - hopefully if you switch to them, they'll be better than your current pharmacy. The only time I've had a delay is when I run out of refills and they have to fax my doctor to write more refills, which is obviously not their fault for the delay. Oh, and once they didn't carry the type of colonoscopy prep I wanted to try, but they got it in for me by the next day. We have a Shopko here too and they suck - I haven't been to their pharmacy, but I had to return something to them once, they only had 1 person working the returns line and she was soooo sloooow, and then literally someone (not me, I swear) vomited on the floor near the return desk and nobody cleaned it up. I had to wait in a slow line next to a pile of puke, literally - it was horrible! So I don't shop there anymore, maybe other Shopkos are better but the one here sucks. It's right next door to my gym but I would still rather drive somewhere else if I need to shop after working out.

So, Aleve is an NSAID, correct? Does it contain ibuprofen? I think ibuprofen contributed to me developing IBD. Back in the summer of 2009, hubby and I went kayaking pretty much every weekend for hours at a time. We'd be paddling anywhere from 2 to 8 hours a day, and I was getting some awesome arm muscles, but I also had a lot of soreness. To try to avoid soreness, I'd take a double dose of ibuprofen before kayaking and after as well - I know, BAD! I didn't know that at the time though. Then in Oct 2009 is when my first flare hit, just a couple months after summer ended, so I am not sure but I do suspect that the ibuprofen may have played a part in me getting sick. I don't recall any burning sensation in my stomach back then, though. Maybe it was doing more silent damage?
 
Aleve is naproxen, which has a lot of properties in common with ibuprofen in that they're both NSAIDs -- but it's a different drug. Actually, I just noticed that naproxen's possible contraindications include "conditions with increased mast cells" -- Cindy, didn't you get those hive-like blisters while on Aleve too? I wonder if there's something going on there?
 
Cat-a-Tonic said:
Cindy, I use Walgreens and they've always been great to me - hopefully if you switch to them, they'll be better than your current pharmacy. The only time I've had a delay is when I run out of refills and they have to fax my doctor to write more refills, which is obviously not their fault for the delay. Oh, and once they didn't carry the type of colonoscopy prep I wanted to try, but they got it in for me by the next day. We have a Shopko here too and they suck - I haven't been to their pharmacy, but I had to return something to them once, they only had 1 person working the returns line and she was soooo sloooow, and then literally someone (not me, I swear) vomited on the floor near the return desk and nobody cleaned it up. I had to wait in a slow line next to a pile of puke, literally - it was horrible! So I don't shop there anymore, maybe other Shopkos are better but the one here sucks. It's right next door to my gym but I would still rather drive somewhere else if I need to shop after working out.

So, Aleve is an NSAID, correct? Does it contain ibuprofen? I think ibuprofen contributed to me developing IBD. Back in the summer of 2009, hubby and I went kayaking pretty much every weekend for hours at a time. We'd be paddling anywhere from 2 to 8 hours a day, and I was getting some awesome arm muscles, but I also had a lot of soreness. To try to avoid soreness, I'd take a double dose of ibuprofen before kayaking and after as well - I know, BAD! I didn't know that at the time though. Then in Oct 2009 is when my first flare hit, just a couple months after summer ended, so I am not sure but I do suspect that the ibuprofen may have played a part in me getting sick. I don't recall any burning sensation in my stomach back then, though. Maybe it was doing more silent damage?
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My sister has UC and I'm meant to have crohns, both of us had been on metformin and feel that this drug started out journey with IBD. The pain I get is identical to the pain I felt when taking metformin.

Cindy and BN interestingly I couldn't tolerate naproxen/Aleve, again giving me exactly the same pains as metformin caused.

I often wonder what my body would feel like if I want taking so many medications but I'm too scared to stop taking them :(.

I'm sorry I've not participated very well recently, I've been trying to cope with some family issues on top of feeling very poorly and I've not managed either very well. On the up side I have my mri tomorrow, then see my gi in 4 weeks (got to love the NHS) to get the results. I hope you're all having a better time than I am :).
 
My doc has been banned from prescribing ldn for a year because of my GI.

He said the doctor 'recruited' me from an NHS clinic which is not true at all.

Doc says I have had a viral infection which has messed with ldns function, and it will settle down again. Phew.

On a purely seflish note, what am I going to do?! This drug is perfect for me. I have none left.
 
BureaucraticNightmare said:
mccindy -- EEP. Sorry to hear the Aleve gave you trouble :-/. I never actually had any symptoms when I'd take it for headaches, but since it's the sole pain medicine I used to take, it's really the only thing that could've caused stomach inflammation (or so said the doc.) I think I know the kind of burning you're talking about though, or something similar -- where some part of the abdomen just hurts and seems to have nothing to do with whether or not you need to use the bathroom. I've had that happen several times. For me it's always in the upper abdomen, usually the left side -- feels like horrible heartburn, except it isn't in the chest at all. Not fun.

Cat -- The test I was talking about is an IBD panel of some sort -- it tests four or five things...GASCA, pANCA, ACCA, ALCA and AMCA. Test was negative for all of them -- I mean, there was some present for everything but all of them were well within the normal limit. But I tend to be super low with ESR and CRP too. I think I might be one of those oddballs though, IBD or no, because my ESR and CRP are low even when my white count's been way up. You're probably right though -- the bloodwork isn't the be-all end-all of diagnostic stuff. Hell, when I was like 17, my doctor freaked out because my thyroid was way off once -- hyperthyroid, she thought -- but then it was completely normal and stayed that way. If anything, it's on the slow side now. So, yeah, labs aren't everything. I had no idea that CTs were less useful for soft tissue stuff though -- that's really interesting. I have an appointment with my GP this week. I think I'll ask her about the difference. God knows I don't need any more radiation if I can avoid it. Between the chest stuff and the abdomen in the last year, plus all the x-rays I had on my bad hip and my knee growing up, I'm practically radioactive already!
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I had a frantic phone call from my GI once saying my haemoglobin was so low I would need a blood transfusion, was normal when retested :ybatty:
 
Hey guys, I haven't posted for awhile! Just read up and caught up on everything that's been going on with everyone. Glad to hear most had a good Christmas!


Isgs- is there somewhere/someone you can write to and tell them how much the drug has helped you and how much you appreciate your docs help/how you became involved with him, etc? To try to clear things up and maybe get more?


As for me, last I posted, the domperidone was making a big difference for me and had decreased my vomiting from daily, usually multiple times, to 3-4 times a week.

Well, I had my domperidone increased from 10mg 4 times a day to 20mg 4 times a day and this has made a huge improvement as well! Since about a week or two after the increase I have barely vomited much at all. Maybe 4 or 5 times! I still have nauseous days but not near as bad. The bloating/abdominal distension is my main issue at this point and I am exploring osteopathic massage and going to try Chinese acupuncture to see if these things can help me. I very rarely have any pain at all now (except when taking my high doses of dulcolax as this seems to be the only solution when I get extremely distended). I do take miralax (usually 2-4 doses a day!) and therefore I do have bms but it seems like more of the distension is trapped gas that is forming and I can't get rid of it, like I barely pass any gas. So the dulcolax 'prep' type solution gets rid of everrrryything lol.


Anyway, wanted to check back in here with everyone. I've really been feeling the best I have since all this started! Now if only I can get rid of the distension! :)
 
BureaucraticNightmare said:
Aleve is naproxen, which has a lot of properties in common with ibuprofen in that they're both NSAIDs -- but it's a different drug. Actually, I just noticed that naproxen's possible contraindications include "conditions with increased mast cells" -- Cindy, didn't you get those hive-like blisters while on Aleve too? I wonder if there's something going on there?
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That is true and interesting.... I know ibuprofen was a part of my big flare last spring/summer, bc I was taking it almost daily for my head and back, and then got super flared and it took forever for that to stop. It did work well on my headaches, but I'm kinda afraid to take it now after that burning belly and the itchy leg thing... which has completely gone away since I stopped taking it. huh.
 
Isgs - I'm so sorry to hear about your doc troubles and med troubles! I hope something comes around to help you, but I just don't know what to say about this system of ours.

Lizbeth - I am sorry to hear you are having family trouble. I hope everything is all right. We've missed you.

Jessie - yay! Glad to hear you are feeling well!
 
Isgs-- Oh no! Does that mean you have to stop taking LDN?

Well, a week and a half after getting my test results about the Clostridium bacteria, bacterial overgrowth and fungal overgrowth, I still don't have antibiotics because my insurance company doesn't want to pay for the medication that my doctor wants me to take (Vancoymycin). So...I'm waiting for a decision on this. In the meantime, I had to go see a different specialist about an unrelated health problem, and I've lost 3 lbs this month. That's not a huge amount but I'm moving back towards the double digits, weight wise.
 
I have made an appointment to see my GP and ask if they'll prescribe it - the answer is probably going to be no. I am aware of a consultant in my local hospital who prescribes it for gastro patients - but my next hurdle will be having no diagnosis and a horrible letter from my GI in my record.

In the meantime I am trying to source LDN online safely and from the chemist I was using. I need LDN in my life and I will have to find it!

Already I am feeling the effects. Couldn't get through my shopping at the supermarket without a dash to the toilet. I just cannot go back to being so sick, I will definitely have a nervous breakdown lol. On the plus side my boss spoke to me and said my sick days weren't a problem, so I am majorly happy and grateful about that. Guess it was all me being paranoid. Glad they are being so supportive, I could easily have been fired.

jessie45 glad you are feeling better! :) It's nice to hear a positive story - there is hope!

Chickadee double figures are not good at all, has there been anything obvious that's made you lose weight - reduced intake etc?
 
lsgs, I hope you can find a way to keep getting LDN. It's clearly done a lot of good for you and I can't believe that your GI is denying you access to it!

Chickadee, would you mind sharing more about your unrelated health problem that's caused you to lose weight? For me, it seems like all of my health problems are related to the IBD in some way, so I'm intrigued that you apparently have something which isn't related to the ME/IBD in any way. If you don't want to talk about it, that's okay too - I'm just curious but it's not really my business.

Jessie, sounds like things are going great! I'm so glad to hear it, what a wonderful update! I don't vomit often, I hate to vomit, and your story is rather horrifying to me with the daily vomiting. It sucks that you still vomit sometimes, but definitely a good thing that the frequency has been cut way down. Good luck with the massage & acupuncture route! Keep us posted on how that goes.

How's everyone else doing? It's SO cold here again and my joints are painful, again. I'm really sick of this crazy frigid winter! My body cannot handle it when it's -35!
 
Here's a question to pose to all of you. Now, I'm usually the odd IBD duck with chronic constipation. Lately, though, I've been skipping back and forth between that and a day or two of D. Saturday morning I went like 4 times in 3 hours, and then off and on all day. Yesterday I didn't go at all. Today I feel like I have to go but nothing is happening. It's very confusing. If things follow the course, tomorrow I'll be able to go but it will be difficult and not much, and I'll still feel like I have to go, then the same thing will happen the day after. By thursday or Friday I'll probalby have D again. WTH? I'm thinking that maybe the D coming a couple of times a week is adding to the problem of not maintaining weight. and everytime I try to eat salad (lettuce, carrots) it ends up coming back out looking the same as when it went in. :(
 
Your symptoms sound like the same ones some of the people on my MC ( microscopic colitis) forum have. Eating salad is not a good idea when you have an inflamed gut and it sounds like you definitely do. Eating fiber just irritates the intestinal lining and causes mucus to form ( to protest itself) I know it's hard to eat Paleo without raw veggies, but for now, you should cook all of them well. What does your diet consist of these days?
 
leah H said:
Your symptoms sound like the same ones some of the people on my MC ( microscopic colitis) forum have. Eating salad is not a good idea when you have an inflamed gut and it sounds like you definitely do. Eating fiber just irritates the intestinal lining and causes mucus to form ( to protest itself) I know it's hard to eat Paleo without raw veggies, but for now, you should cook all of them well. What does your diet consist of these days?
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I'm usually on a pretty strict diet. Dairy and gluten free, no legumes, no corn, no corn syrup, very few raw veggies. Lettuces are one of the ones I can usually get away with but the recent lack of digestion of them are making me think I need to stay away from them for a while. I eat a lot of chicken, shrimp and fish, rice, skinless potatoes and sweet potatoes, canned peas, oatmeal, eggs. Sometimes some gluten-free bread or pasta.
 
mccindy said:
Here's a question to pose to all of you. Now, I'm usually the odd IBD duck with chronic constipation. Lately, though, I've been skipping back and forth between that and a day or two of D. Saturday morning I went like 4 times in 3 hours, and then off and on all day. Yesterday I didn't go at all. Today I feel like I have to go but nothing is happening. It's very confusing. If things follow the course, tomorrow I'll be able to go but it will be difficult and not much, and I'll still feel like I have to go, then the same thing will happen the day after. By thursday or Friday I'll probalby have D again. WTH? I'm thinking that maybe the D coming a couple of times a week is adding to the problem of not maintaining weight. and everytime I try to eat salad (lettuce, carrots) it ends up coming back out looking the same as when it went in. :(
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Of course diarrhoea will lead to you not maintaining weight, your body needs your food to travel through reasonably slowly to get the nutrients out of it. If it's rushing through then there won't be time to properly digest it and get the energy and nutrients out of it.

I had the same problem as you with food coming out whole (so gross, I know) and I eventually developed folate deficiency so be vigilant.

Tbh mccindy it boggles my mind how your doctors do not acknowledge crohns as a lifelong relapsing/remitting disease. One clear scope does not mean you don't have it - it could have moved, be in the small bowel, be in the outer layers of bowel you can't see by scoping. I really wonder about these gastros.

Cat -35?!! We are having a 'warm' winter here. It hasn't really dropped below 0 C yet. I've scraped the car of ice twice this winter. It has been exceptionally wet and windy though.
 
Cindy, I've also had salad come out of me undigested like that - I don't know if it's just an IBD thing or what. I was still in remission at the time, too, so I can't blame it on inflammation. This was over a year ago, but I still remember it - we were having a get-together with friends, and hubby made a huge amount of food for only a handful of people. He made a giant, gorgeous salad and we had a lot left over after the party. I couldn't resist, and I thought maybe I could get away with just a little bit. Nope! It was so delicious, but about an hour after eating, I felt my guts start to get angry, and an hour after that it was bathroom time, and I saw whole chunks of lettuce come out - and tomato and carrot, too. I only do pasta salad nowadays because regular lettuce-based salad just does not work on my broken guts. :(

I know I've talked about juicing before, but I just wanted to say - I can juice pretty much any fruits & veggies, and it's all fine on my guts. So I do get nutrients from fresh fruits & veggies that way, without the fiber. It's not the same as eating a salad, but at least I can still get those nutrients in juice form without the pain and bathroom trips.

lsgs, yes, -35 (fahrenheit, with the wind chill - without the windchill it's "only" about -10). It's going to be possibly as cold as -50 tonight & tomorrow morning with the wind chill, too. The good news is that work is closing early today & opening late tomorrow so that we can hunker down at home during the worst of the cold - at least there's that upside to this crazy weather. My joints are not happy though! I'd gladly take your wet & windy weather over this - it's been windy, frigid, and it's been snowing pretty much every day. I've scraped ice and/or snow off the car most days. I cannot wait for springtime! My guts are fine with the cold but my joints hate it. Of course my guts hate heat & humidity, so in the summertime I'll have that to complain about. :p It's always something!
 
You eat a lot of the same things I do Cindy, but Oatmeal acts just like gluten in my gut ( it has a similar looking protein) and peas are a legume and are not the friendliest to me. I also can eat any meat ( protein) and rotate between all of them. The only oils I use are olive and coconut. For some odd reason, Canola reacts. Hope things even out for you soon :)
Leah
 
I don't know how you guys handle the ridiculous cold.

I finally bothered to look at my feet less than, you know, half an hour after getting inside ... my toes always go super numb when it's 40 or colder, but I thought that was normal.

Until I saw GHOST TOE:

2e6fxag.jpg


This was like 20 minutes ago. It started to fade by the time I thought "gee, perhaps my doctors will stop assuming i'm making stuff up if I take pictures" -- but I still kinda caught it.

I've seen some Reynaud's-esque color shifts in my fingers before, but it's always been kind of diffuse and worst in the nail beds ... but this whole half-my-toe-is-totally-effing-white thing is definitely new.
 
Leah - yeah, olive and coconut are my only oils too. I'm not sure why I can do the canned peas and no others, fresh are murder on me, but the canned must be so broken down that I can handle them, I guess.

BN - wow, what the deuce, ghost toe! AT least you kind of caught it on camera! This cold is really quite killing me, I swear. I'm cold even when I'm inside where it's warm. This morning it was -15 here but the wind had calmed down so the wind chill was only -30! Sheesh and I had to get gas on my way to work, that sucked.

Isgs - yeah, I really have decided that as soon as I have enough time to take off and go down to Mayo again I'm going to see a new GI. This guy I see now has completely decided that I have IBS and won't listen to any reasons why I think I don't. He's not willing to even consider looking at my small intestine. He's as much as said that he thinks the doctor who originally diagnosed me with Crohn's was an idiot. I personally haven't heard of anyone with just IBS having lettuce and carrots coming out whole, or having mucus, or night sweats or rashes or mouth sores. And my sister has microscopic colitis, but when I asked him about that, he said, "just because your sister has it doesn't mean you do". Lord. So yeah, definitely going to a new doc when I can afford the time off. This damn brain cancer ate all my time off up!
 
Cat-a-Tonic said:
I know I've talked about juicing before, but I just wanted to say - I can juice pretty much any fruits & veggies, and it's all fine on my guts. So I do get nutrients from fresh fruits & veggies that way, without the fiber. It's not the same as eating a salad, but at least I can still get those nutrients in juice form without the pain and bathroom trips.
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My son and his wife juice quite a bit and enjoy it and have told me I should try it. I haven't invested yet, but I've thought about it. They spent about $75 on their juicer, I think.
 
mccindy said:
Leah - yeah, olive and coconut are my only oils too. I'm not sure why I can do the canned peas and no others, fresh are murder on me, but the canned must be so broken down that I can handle them, I guess.

BN - wow, what the deuce, ghost toe! AT least you kind of caught it on camera! This cold is really quite killing me, I swear. I'm cold even when I'm inside where it's warm. This morning it was -15 here but the wind had calmed down so the wind chill was only -30! Sheesh and I had to get gas on my way to work, that sucked.

Isgs - yeah, I really have decided that as soon as I have enough time to take off and go down to Mayo again I'm going to see a new GI. This guy I see now has completely decided that I have IBS and won't listen to any reasons why I think I don't. He's not willing to even consider looking at my small intestine. He's as much as said that he thinks the doctor who originally diagnosed me with Crohn's was an idiot. I personally haven't heard of anyone with just IBS having lettuce and carrots coming out whole, or having mucus, or night sweats or rashes or mouth sores. And my sister has microscopic colitis, but when I asked him about that, he said, "just because your sister has it doesn't mean you do". Lord. So yeah, definitely going to a new doc when I can afford the time off. This damn brain cancer ate all my time off up!
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Sounds like your GI and my GI have been passing notes on bedside manner. Jeez. These guys think they're the most important guys in the room when they're not. I can't understand their reluctance to diagnose, it comes across like a power thing sometimes.
 
Cindy, I'm sure I've mentioned this before (to Chickadee I think?) but have a look around for a used juicer - I got my first juicer at a garage sale for $10. It worked great for years until a plastic piece on it shattered, and I couldn't find a replacement piece so I spent $100 on a really nice new juicer. If you can borrow one or find one used, just to try it out and to make sure your guts are okay with juicing, that's what I'd recommend to start with. Not a big money investment that way, so if it doesn't work out then no big deal, or if it does work out you can look around for a better juicer.

Wow, Bureaucratic - how odd that it was just one toe that changed color like that! Do you think the cold weather is the culprit? Are you having really ridiculously cold weather there too? It's warming up here - it's a whopping 1 degree above zero! (But -23 with the wind chill.) I'm dealing with the ridiculous cold as best I can. My joints have been bad, but as long as I keep working out (not jogging though), then I'm okay-ish. But yeah, like Cindy said, I'm also cold even when I'm inside. You can't be outside for more than a few seconds in this hideous cold - even just going from the car to a building, it's awful! It's supposedly going to be in the 20s (above zero!) tomorrow, so I'm holding out for that. And in the meantime, I've been coping - I'm utilizing lots of hot chocolate & hot tea, long underwear, blankets, fleece pajamas, electric blanket & heated coat, hot baths, etc. And fortunately work closed early yesterday & opened late today due to the cold, so I got to hunker down at home during the worst of the wind chill.

Oh, and Cindy, I'm glad you're going to look for a new GI when your schedule allows for it. I can't believe he blew you off about your sister having microscopic colitis! I've read on the forum that statistically, if one sibling has IBD, then the other siblings have the most risk of also developing IBD. So because your sister has IBD, this means you're the next most likely person to have it - not your parents, nor her children, etc. You (and any other siblings you have) are the most likely ones - and it baffles me that some doctors will pooh-pooh family history of IBD like that, especially when it comes to siblings. I don't recall the specific numbers, but I know I've read on here that if one parent has IBD and the other does not, they have approximately a 9% chance of having a child with IBD. That means it's higher than a 9% chance for siblings if one sibling has IBD. That's pretty huge, in my book!

On this subject, I wonder what the odds were of me developing IBD. Nobody currently living in my blood family has it (I have an aunt with Crohn's but she's related by marriage, not blood). The only person I know of is a great-grandfather (my father's mother's father) - he had UC. I don't know if it is coincidence that I also developed some type of (presumed) IBD, or if he somehow passed those genes on to me but they skipped several generations? It's so odd to think about, that someone who died nearly 30 years before I was born maybe made me sick. Apparently he was a sickly guy, too - he also had TB and cancer (not sure which type) and he died fairly young, in his 60s I think. Awesome, thanks for the great genetics. :p
 
Saw GI today. He is driving me nuts. He changes his mind every time I talk to him. Ugh! He is having me try Rifaximin for my constipation etc. Has anyone else used Rifaximin for constipation? He feels that there are multiple things happening to cause my colitis and my colonic inertia. The cold weather is getting the best of my body. Stiff muscles and plenty of muscle spasms. Also getting the Reynauds syndrome. Got some weird lump on my hip now as well as the pain from the dry eyes. When it snows, it pours! Blah! Looking forward to summer. The Rifaximin cost an arm and a leg and so does the Nexium I take. I could pay for college credits with what I'm paying for my Rx.
 
Goddamit, just visited a GP who I'd never met before (my optician asked me to go) and she wouldn't take me seriously at all due to my GI's letter. I really, really want to complain but I've never done anything like that before. I just feel my treatment is getting ridiculous. What would you guys do?

I've just had enough, it's making me really depressed. I know it's stupid but my life's a total mess and these guys seem to have free rein to treat me like I'm **** on their shoe. I fear I'm never going to get taken seriously again (not that I did in the first place, but it's even worse now)
 
Oh, Isgs, I'm so sorry. I feel your pain. My GP doesn't think there' much wrong with my belly either bc of what the GI said. Oh, just IBS. Like Cat said, with one sibling having IBD the chances of other siblings having it goes up. My GI blew me off on that one - but I have three sisters, one has microscopic colitis and takes Azacol, and the other two have a lot of GI problems but are undiagnosed as well.

Cat - I may take your advice and just look for a used juicer! It can't hurt to try, just to see how it goes, without spending a lot of money first.

Naturelover - I have not tried that one. my Gi tried two meds that didn't work for me and then gave up. Now I just take 8 docusate a day, and 3 tbsp of psyllium husks, and go every couple of days (kind of) and then sometimes have D. stupid guts.
 
mccindy said:
Oh, Isgs, I'm so sorry. I feel your pain. My GP doesn't think there' much wrong with my belly either bc of what the GI said. Oh, just IBS. Like Cat said, with one sibling having IBD the chances of other siblings having it goes up. My GI blew me off on that one - but I have three sisters, one has microscopic colitis and takes Azacol, and the other two have a lot of GI problems but are undiagnosed as well.
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mccindy I think my issue is that every doctor I meet says you have inflammatory bowel disease (including this GI!) but because it suits him to get back at this doctor he doesn't like he's written a letter saying the total opposite. I've been told by my rheumatologist, 2 GI's, 2 GP's and a surgeon that I have inflammatory bowel disease. Then one malicious letter and suddenly I'm being treated like a malingerer again.

I have letters in my record saying I have inflammatory bowel disease but no one's looking at them, they're looking at this recent letter.

Makes me so mad.
 
Hi all just found this forum, I've been reading the stories and it's so nice ( in an odd way) to have people that can relate! I've always suffered with my stomach and it's gotten progressively worse as I got older, I had a colonoscopy 5 years ago that was fine nothing found so was diagnosed as IBS. Last year my symptoms got worse almost over night, pain, bloating, fatigue, headaches, sickness, bloody/mucus diarrheah, acid reflux ( not sure if linked) I can't take any form of inflammatory med as makes my bowel bleed and I have certain foods I have to steer well clear from, so went back to my dr who referred me to the gastrointestinal dr to have more tests as a possible crohns UC ( my sister has UC too) dr has done bloods which showed an elevated white blood cell count, but nothing else CT was fine and they found ulcers in my terminal ileum, however he said there is nothing wrong possibly mild crohns but he refuses to give a firm diagnosis he said there isn't enough evidence? Which left me very upset and confused as to what I fact is actually wrong, hie also tried blaming campylobacter which I got hospitalised for in November although I was on referral to him from back in July/august. He said as the CT scan showed clear of inflammation IBD is unlikely, but if I was in remission at the time as not having any symptoms would it have shown? My joints are incredibly painful but arthritis has been ruled out after the blood tests came back clear. Sorry for the ramble mish mash but just wondered if anyone had had anything similar and could shed any light as being told to just live with it when your not able to get up on a bad day just doesn't cut it! I'm also going to be having an ultra sound for Gaul stones, I'm almost 100% that I don't have these I think he's just testing me for the heck of it. :)
 
Hi Nicki, welcome to our little club - sorry you had to join us, but glad you found us. I have a migraine today so I hope I read your post correctly - your CT scan found ulcers in your TI? But they haven't done anything like a colonoscopy to look at the ulcers or take biopsies? I see you mentioned having a colonoscopy 5 years ago but nothing since the CT, correct? With your other symptoms - particularly the bleeding & joint pain - and your family history, it sure sounds like IBD (Crohn's/colitis) to me. It also sounds like your doc is giving you the brush-off. Those ulcers need to be investigated further, you need more tests probably starting with another colonoscopy. A lot can change in 5 years so keep pushing for more tests! If your doc continues giving you the brush-off, can you get a different doc?

I also wanted to say, your story sounds a LOT like mine. My symptoms came on literally all at once, too. Mine initially presented like a viral stomach bug - out of nowhere I was nauseous, shaking, pale, sweaty, running to the bathroom with diarrhea - and I've never been quite the same since! And like you said, I started getting headaches & migraines too once my guts went crazy. I never ever got migraines up until I got sick, then I started getting them regularly, and now I have to take preventative medication which stops most of them (I still have a migraine today though, I still get them every once in awhile). I have severe acid reflux too, which I also never had until I got sick. Like you said, I'm not sure if the two are connected or not, but I suspect so as I never had any reflux issues until the past few years (I got sick about 4 years ago). And I have some type of arthritis as well which mostly affects my hips, knees & lower back - that also started after I got sick. So yeah, I can definitely relate to most of what you said, I'm in the same boat! Wish I had more answers for you, but I can definitely empathize.
 
Nicki-- Welcome to the "club." Sorry you have to be here! It sounds like Crohn's to me. Can you get a second opinion?

Isgs-- I'm sorry you're getting blacklisted due to that letter! Can you have one of the doctors who thinks you have IBD write a letter?

Naturelover-- I've taken Rifaximin for Small Intestinal Bacterial Overgrowth, though my symptoms did not include constipation. It didn't help me, but I guess it does help some people.

BN-- How weird that it's just that one toe! Last year, one of my fingers started turning gray/blue, and it was due to severe anemia. Just throwing that out there. I know Reynaud's is pretty common, though.

Chickadee, would you mind sharing more about your unrelated health problem that's caused you to lose weight? For me, it seems like all of my health problems are related to the IBD in some way, so I'm intrigued that you apparently have something which isn't related to the ME/IBD in any way. If you don't want to talk about it, that's okay too - I'm just curious but it's not really my business.
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Sure, Cat. I actually think it's the GI problems that's causing the weight loss, but I was at the doctor's for an unrelated problem. I was at the hematologist because I have von Willebrand's disease. It's an hereditary bleeding disorder, kind of like hemophilia, though mine is much less severe than hemophilia. (There are three main types of vWd: (1) Type 1-- This is what I have. People with Type 1 have a decreased amount of von Willebrand factor, one of the components of the "glue" that stops bleeding; (2) Type 2-- People with Type 2 have defective von Willebrand factor. There are multiple subsets, based on the type of defect; (3) Type 3-- People with Type 3 don't have ANY von Willebrand factor. This can be as severe as hemophilia.) Even with mine being a mild form of vWd, last winter, I lost half of my blood volume due to menstrual bleeding and had to have two months of weekly infusions. Right now, my blood counts are good, but I just have to be "monitored." Also, when I was in the midst of the low blood crisis last year, one of my doctors did a test and the results suggested that I might have an *additional* bleeding disorder. My hematologist says that it would be so incredibly rare to have two, but he did another test to follow-up so we shall see....

While I'm listing medical conditions, I also have myalgic encephalomyelitis (also know as "Chronic Fatigue Syndrome" but ugh), thyroid disease and Chiari malformation type I.
 
Thanks cat :) I had a colonoscopy and endoscopy beginning of this month which is when they found the ulcers, the CT scan was clear which is why the dr said suspected mild crohns but no definite diagnosis. I too have the arthritic pain in my hands hips back and feet, also the headaches, migraines only a few times a year thankfully, I hope you feel more normal ( well more normal than now), I was told to go back when it gets bad again, really helpful :-/
 
Nicki, did they do biopsies during the scopes? Did they have any explanation for you as to why you have ulcers in your TI? (Because IBS does NOT cause that!) And that's awful, them telling you to come back when it gets bad again! If that's their attitude, I would definitely start looking for a new doctor. Oh, and CT scans aren't the most accurate - my GI told me CT gets an okay "overall" picture (like an overall picture of the abdomen, for example) and sees bony tissue better, but isn't so good at seeing specific things or soft tissue (like, say, the terminal ileum!). MRI, on the other hand, gets a good picture of a specific thing like one organ, and sees soft tissue like organs much better than bony tissue. So if you are thinking of asking for more tests, an MRI might be the one to ask for. Specifically, I'd ask for MRE, which is MRI-enterography (MRI of the intestines).

Chickadee, I don't know much about CFS but I've heard that it's VERY hard to get it taken seriously, and there isn't much in the way of treatment options, so that really sucks. I do know a little about Chiari, as Bozzy has that and she had surgery on it last year. Apparently she's doing a lot better since she's had the surgery - I don't know if surgery is an option for you at this point, but if you're having symptoms from the Chiari, you may want to ask Bozzy more about her surgery. And good gravy, half your blood volume?? That's horrifying! I hope you don't have 2 bleeding disorders, that would be just insanely awful. Although, you said it would be really rare - maybe you'd get special attention from your doctors then, and possibly could get the digestive stuff properly diagnosed finally? My GP said once that the more interesting of a patient you are, the more attention you'll get from doctors. He said I'm mildly interesting, and that I need to stay interesting so that my GI doesn't lose interest in my case. So I guess in a way it's good to be rare, as at least that way you have doctors who are really interested in treating you and in studying your case. Still, though, I hope you don't have 2 bleeding disorders, because the one by itself sounds horrible!

You know, this is kind of random and I haven't thought about this in years, but as a baby I had a super rare skin disease. My mom told me this story. I was like a year old and I developed this odd lesion on my leg - it kind of looked like an orange birthmark, about an inch long oval shape. My mom freaked out - both of her parents died of cancer, and she saw a weird thing on her baby's leg and she was convinced it was cancer too. She rushed me to the dermatologist, who didn't help her panic any. He took one look at my lesion and rushed out of the room! So she was sitting there freaking out thinking it definitely had to be cancer. The dermatologist finally came back something like 10 mins later with a medical textbook - turns out I had some freaky rare (benign) skin disease, this doctor said he only saw an average of one case every 10 years or so. I don't even remember the name of it, juvenile something something. I'll have to ask my mom what it was called. I still have a scar from it on my leg - the lesion faded color, it's no longer orange, it's the same color as the rest of my skin, and it's just a very faint scar now, you can barely tell it's there. Still, I'm pretty sure I'm in a medical textbook somewhere because of how supposedly rare that illness is. So at one point, I apparently was a very interesting patient.
 
Cat, isn't it awful though that we have to be "interesting" for doctors to care? So how are you supposed to keep your GI's interest?

Yes, if I *do* have two bleeding disorders, I'm sure that hematologists will find me very interesting. In fact, my current hematologist said that he'd be sending me to Johns Hopkins if that's the case. Unfortunately, I don't think the hematologists can do much for my GI problems. My bleeding disorder is manageable, and even if I have another one, I've already been living with it so it's not a huge deal. It's something of which I need to be mindful, but it doesn't hugely impact my life like the GI issues and CFS/ME (myalgic encephalomyelitis).

It's difficult to know which symptoms are caused by Chiari malformation, but overall, I don't think I'm having a lot of problems with it right now. For a while, I was having constant migraines and that may have been Chiari-related, but with acupuncture, my migraines are only a couple of days a month usually. I remember that Bozzy has this dx and that she had surgery. I'm glad she's doing well. Chiari surgery is risky for anyone, but for a person with a bleeding disorder, having any kind of surgery involving the brain stem, brain, or spinal column is extremely dangerous. It's not a risk I want to take. Even to have a colonoscopy, I have to be pre-treated by the hematologist and have a bleeding management plan.

I actually have a good doctor for ME/CFS, but it's true that there are not a lot of treatment options. In fact, there's not a single FDA approved medication for the condition. We have really been shafted in terms of research funding. Still, there is some research going on at Stanford regarding antivirals for the treatment of ME/CFS, which some believe may be caused or triggered by a virus. Some people are doing well on the antivirals, but they can cause some really scary side effects. Also, they have a lot of GI side effects. Oh, and they cost $4000-8000 per MONTH, which insurance may not cover because it's an off-label usage. Very frustrating. A former Harvard grad student who became ill with ME/CFS is making a documentary about all of this: http://www.canaryinacoalminefilm.com/
 
Nicki31 said:
Thanks cat :) I had a colonoscopy and endoscopy beginning of this month which is when they found the ulcers, the CT scan was clear which is why the dr said suspected mild crohns but no definite diagnosis. I too have the arthritic pain in my hands hips back and feet, also the headaches, migraines only a few times a year thankfully, I hope you feel more normal ( well more normal than now), I was told to go back when it gets bad again, really helpful :-/
Click to expand...

Tests are not 100% sensitive, particularly ones like CT scans and MRIs. They don't pick things up 100% of the time. Ulcers in your TI don't happen for no reason... Maybe a second opinion?
 
Hey guys.... missed you all for the last few days. Got busy with the hubs after his shoulder surgery. He's been in a lot of pain and not sleeping well, and you know, that means I'm not really sleeping well either. My belly has been super unhappy as well. Friday night I ate green beans, fresh, which I could swear I could eat before.... well, not anymore. After hours of agony (literally, curled up, groaning, shaky, crying), I finally took a Vicodin, which doomed me to migraine land on Saturday. Ugh. And I still felt like crap all day.
 
Sounds like a bad news weekend Cindy, that's no good.

Mine was a little more of a good/bad split. The bad news is I had a godawful attack of stomach horribleness on Saturday after my boyfriend made me some hot cocoa. The good news? I KNOW something now! I'm definitely lactose intolerant. (Turns out the cocoa has a ton of whey in it, which is apparently, like, distilled lactose. Ooops. Lesson learned, lol.)

Not that lactose intolerance is good news, per se, but what's positive is that I've figured out the single thing that wreaks the most havoc on my gut. I eliminated dairy a couple weeks back as an experiment, then started reintroducing stuff -- first low lactose things, then higher. I wasn't convinced about the lactose thing until the cocoa set me off. Stuff like that and milk -- the lactose bombs -- are badddd news.

So, it's NOT IBS after all.

Now I just have to ask my doctor how the heck I developed lactase deficiency, which is almost always hereditary unless something else is wrong, when literally no one in my family has issues with dairy. Not one. And my folks were both raised Catholic -- so there's A LOT of extended family in my reference sample, haha.

OH. ANOTHER WEIRD THING.

I bought an EZDetect occult bleeding test kit -- the kind you just toss in the water -- to figure out if the stuff I see so often that I swore must be blood was, in fact, blood.

It isn't. It really, really looked like there was blood, but the test was negative (well, one of four had some tiny tiny flecks of positive color). So. Hm. Weird.
 
BN, I'm lactose intolerant too, but certain types of dairy are worse than others. Milk and cheese are out, but I can sometimes tolerate ice cream (the worst it does to me is give me the farts). Butter is always okay on my tummy for some odd reason. It's very strange. Most of the women in my mom's side of the family are lactose intolerant, so for me it is a family thing.

The good news is, there are lots of dairy alternatives. Lactose-free milk, soy milk, almond milk, rice milk, hemp milk, etc. I can tolerate goat cheese and I love almond milk. So give some of those things a try and see if you like them & can tolerate them.
 
BureaucraticNightmare said:
Sounds like a bad news weekend Cindy, that's no good.

Mine was a little more of a good/bad split. The bad news is I had a godawful attack of stomach horribleness on Saturday after my boyfriend made me some hot cocoa. The good news? I KNOW something now! I'm definitely lactose intolerant. (Turns out the cocoa has a ton of whey in it, which is apparently, like, distilled lactose. Ooops. Lesson learned, lol.)

Not that lactose intolerance is good news, per se, but what's positive is that I've figured out the single thing that wreaks the most havoc on my gut. I eliminated dairy a couple weeks back as an experiment, then started reintroducing stuff -- first low lactose things, then higher. I wasn't convinced about the lactose thing until the cocoa set me off. Stuff like that and milk -- the lactose bombs -- are badddd news.

So, it's NOT IBS after all.

Now I just have to ask my doctor how the heck I developed lactase deficiency, which is almost always hereditary unless something else is wrong, when literally no one in my family has issues with dairy. Not one. And my folks were both raised Catholic -- so there's A LOT of extended family in my reference sample, haha.

OH. ANOTHER WEIRD THING.

I bought an EZDetect occult bleeding test kit -- the kind you just toss in the water -- to figure out if the stuff I see so often that I swore must be blood was, in fact, blood.

It isn't. It really, really looked like there was blood, but the test was negative (well, one of four had some tiny tiny flecks of positive color). So. Hm. Weird.
Click to expand...

Hey BN what's that test you mentioned? Quite often the water in the toilet goes a reddy pinky colour around the stool which I think looks like blood, I wouldn't mind finding out for sure.

I've been trying to keep up with reading the thread and would like to participate more but I'm not getting the chance atm. My dad is still in hospital and we had a really bad day yesterday, he fell out of bed and have himself 2 black eyes and also we've learnt a bleed on the brain, plus he's developing some heart issues which they would like to give him aspirin for but can't cos is the bleed, it's so very complicated due to his personality disorder and possible dementia. I've stayed in Belfast for a few days until I see what's happening.

Take care everyone :) :ghug:
 
BN, I was never lactose intolerant until my mid-30s, then it just happened over about 6 months. No one else in my family was, but my oldest son now is, oddly enough. My doc said it can just happen? I dunno if it's linked to my GI stuff, but with all the new intolerances I've developed now, I've gotta wonder, and hope to hell that my son isn't going to develop the same stuff, bc he's starting a lot younger than I did.
Yeah, cocoa is the devil for me! If I want hot chocolate I buy dark chocolate and melt it into soy milk or almond milk (it's actually richer and yummier than the powder anyway!).

I'm like the ultimate lactose intolerant type that can't even eat foods that have milk in them. i can only eat hard, aged cheeses and specifically lactose-free foods. It pretty much sucks, especially when you throw in the gluten intolerance and the fact that I can't eat corn, legumes, corn syrup, or pretty much any fresh vegetables. <sigh> Oh, yeah, or beef. And the GI says he has no idea why, it's just intlolerances, so just don't eat that stuff.
 
Cindy, that's interesting about you not developing lactose intolerance until your 30s. I developed it very suddenly in my early 20s. Literally one week I could drink milk just fine with zero repercussions, but the following week it made me very ill. Hubby and I were dating at the time I suddenly became lactose intolerant, and he was living in Chicago at that time. I went down to visit him, and he took me out for sushi. So I had sushi and a glass of milk for dinner, and I felt so nauseous and awful afterwards. I thought I had gotten food poisoning from the sushi. I rested up, and about a day later my appetite came back. Hubby was at work and I was hanging out in his apartment, so I searched through his cabinets to see what he had to eat. He didn't have much, but I scrounged up some girl scout cookies, and I thought I'd dip them in milk. I immediately started feeling ill again when I had that snack, and that's when it dawned on me that it must be the milk making me ill. Sure enough, my mom's lactose intolerance came on the same way - rather suddenly, in her late teens or early 20s. Same for my aunt, female cousins, etc. It's weird, though, we all have different things that bother us the most. For me, it's milk and cheese. For my cousin, it's whipped cream. For my mom, it's creamy foods like cream-based soups. So we're all similar in that it hit us at similar ages, but we're all different in terms of what foods are no-nos and what foods are sorta-safe-ish.

I don't think there's a relation, in my case anyway, between the lactose intolerance and the presumed IBD. The lactose intolerance hit in my very early 20s (I think I was 20), and the IBD didn't come along until a couple weeks before I turned 30, so there's nearly 10 years in between the two happening to me. Plus like I said, most of the women on my mom's side are also lactose intolerant but none of them have IBD. I'm the only one with IBD in my family, unless you count my great-grandfather (on my dad's side) who had UC. I don't know if he was lactose intolerant or not, he died like 30 years before I was born. Anyway, I don't think there's a link, at least not in my case.
 
To those who asked about the occult blood test -- this is the brand I used. I bought mine on Amazon. It was a lot cheaper than expected and came as a Prime add-on item, so it was a pretty good deal. You can get it in some pharmacies too -- no prescription required, at least in the U.S. The only one I've seen it in around DC is Walgreens. It can be kind of tough to find -- at my store it was by the DIY drug test kits, hahaha.

Anyway, it's a pretty cheap price, whether it gives you peace of mind or equips you with extra evidence when you're getting treatment. They're supposed to be pretty accurate and more likely to give false positives than false negatives. (So I'm inclined to trust a negative result -- whatever it is I'm seeing that looks like blood, it's not blood.) Apparently you don't need to modify diet much to take the test either, but if you have a lot of vitamin C it can cause a false negative. (Now I'm wondering ... I drink energy drinks with a lot of citric acid. Wonder if that could mess anything up.)

Cat, sounds like you're probably right about genes giving you the dairy trouble -- pretty strong pattern there. But I can't imagine the other stomach issues help matters.

Cindy, I'll try the alternative hot chocolate. Sounds really good! It's interesting your doc is so adamant about these food intolerance things just happening for no real reason. I'd be frustrated. I mean, should you really go to the doctor and say "I can't digest X, Y, and Z, help," and come out with nothing but a slip of paper that says "Patient can't digest X, Y, and Z"? ("Uh, thanks. Do I still have to pay you?")

I mean would anyone be okay if they went into the doc and asked "Why does my skin turn green when I walk backwards?" and got nothing but "You have walking-backward-green-skin-syndrome" in response. How is that helpful?

Oh dear. I'm ranting. Better take off before I go completely off track :).
 
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I'm new here... also a part of the "undiagnosed club." I guess mostly because I "got along" okay after an emergency gut surgery 30 years ago...(I had no idea that the stuff I was going through was related to the effects of losing an essential part of my digestive tract. I attributed it all to "just scar tissue, probably," and literally gritted my teeth and stayed close to the toidy-- I know where ALL the decent restrooms that are quickly accessible in my town and on the freeways are... and I'll bet I am not alone in that knowledge!

My Doc rebuked me, saying, my cholesterol was a bit high (I learned later that it is an indicator of the troubles I was having) My colonoscopy came back "clear" (praise God!!) except for one diverticula, which is currently not inflamed, and an endoscopy indicated a bit of swelling right at the juncture between esophagus and stomach. (I am not good with the technical terms, and I don't plan on getting good at them, so sorry for the broad terms used.)

Actually, it was the pictures from the colonoscopy that made me start researching...the caption under one of the pictures gave me an indicator to look up...the research began, and now I am going to see him (the gastro) and grill him with questions.

I am fortunate, however, that at this stage, I am not in dire straits healthwise, but I'd like to get a handle on this as well as I can before I get older--it will be much more difficult, I am sure!

So my plan, based on what might be called mid-level general symptoms, is to try the Vit D and get some B (probably by injection--it's water soluble) and I'm using a small amount of inulin as well, along with general vits and lactaid. If I can get to the point where I can go out and not worry about potty breaks ruining everyone else's time (while they wait for me...) I will consider this acceptable at this time.

I am also dealing with a lot of inexplicable pain in my hands and feet... mostly right side, and it's not the joints, it's the area between the joints... any suggestions?
 
Hi Mlits, welcome to the forum and to the club. If I read your post right - you had an emergency gut surgery many years ago but are still having IBD-like symptoms and are still undiagnosed? What specifically was the surgery for initially, did you have a blockage or appendicitis or something like that? And what was the indicator in the caption on your colonoscopy pics?

How's everybody else today? My hip HURTS. There's a huge snowstorm going through just south of here, I heard Chicago & Indianapolis are getting slammed by it, but it's largely missing my area. Still, a storm that big and that close by is enough to make my arthritis ache quite a lot. It's been bad all day. I'm thiiiiis close to getting my cane out, but then I'm also determined to go to the gym tonight and lift weights (which doesn't hurt my bum hip fortunately). What an odd in-between place I'm in, somewhere in between fit & healthy and using a cane & limping. :p Ugh.
 
Hey all. Just wanted to say hi. I took some antibiotics for SIBO, which helped a little. But I still have the IBS/sibo stuff happening. My gut is just messed up, and I need to get out of my stressful situation as a caregiver.

I've been at a stand still about getting my mother and uncle into assisted living. My lawyer just gave me some really bad news about my situation and I'm kinda freaking out inside. Bottom line is I will have to leave home to save myself soon.

I think my guts are worse today because of the stress. I'm sort of blaming it on my diet, but I think when I'm stressed, I make bad diet choices. Please forgive my rambling. :) Hope you guys are doing OK today.
 
Oh, Moogle, that's awful, I'm so sorry to hear. I had hoped things were improving for you.

Cat, I'm glad to hear the snow is missing you. Is it cold there? We're still getting the below zero temps at night/early morning, but it's getting above during the day (kind of, if you ignore the wind chill). That hip thing.... hopefully if it ever warms up it will improve for you.
And the lactose thing - yeah, you're right, it probably is unrelated to the IBD stuff, my aunt became lactose intolerant in her 30s as well, so it's most likely a genetic thing.

Welcome, Mits, congrats on the clear colonoscopy!

BN -yeah, my GI really does tick me off. It's like, I say, hey, I've got night sweats, and he goes, hey, maybe it's peri-menopause. and I say, hey, I've got rashes and mouth sores, and he goes, hey, I don't know why that would be. And I say, hey, I can't eat beef, and he goes, hey, you should be able to. Seriously? And I keep losing foods that could eat before. And he'll say, well, if your GI tract is calm for a few days, try reintroducing a food. Sheesh! It's never calm for a few days...... and reintroducing! I'd like to not suffer for three or four days thank you very much. Quack. Is it illegal to call a doctor a douche to his face? :p


oof, now I ranted. Sorry all!
 
You could probably get away with calling the doctor a douche as long as you say "doctor douche". Gotta be respectful. :p

I'm probably lactose intolerant too. I feel pretty bad after having milk. Sometimes the bloat and gas doesn't hit right away but some hours later. Lactose is easy to avoid, but it can be hidden in baked foods and snacks. Look out for added whey in foods! That's high in lactose. I miss cheesy snacks like Doritos, but it's got added whey in them.

I've been getting Lactaid milk and it doesn't bother me. Cheddar and provolone cheese doesn't have much lactose so I think it is safe on a sandwich.

Check out this website. Really good information on lactose.
http://www.stevecarper.com/li/superguide_to_dairy_products.htm
 
I got my test results back from my hematologist, and right now, it doesn't look like I have another bleeding disorder. It's not 100%, but still....good news. My hemoglobin is great, but my iron is kind of low. I'm not sure what that's about.

I think I mentioned here that I tested positive for a Clostridium GI infection? I'm supposed to be taking vancomycin, but my insurance co. denied it. I have filed an appeal and am waiting to hear back the results. In the meantime, my GI symptoms (diarrhea, cramps) have been worse. I don't know if it's due to the Clostridium or something else. I've been waiting for the vancomycin for 3 WEEKS though! It costs over $1500 so I can't pay for it myself. The drug that the insurance co. wants me to take is the generic of Flagyl, but it has an interaction with one of my other meds. The reason they denied the authorization is because my doctor didn't get back to them in the allotted time. The insurance co. sent a fax on Friday afternoon to the doctor's saying that they had to respond by Sunday! Well, the office is closed on Friday afternoons so the doctor's office didn't get that notice until Monday, at which point the insurance co had already denied the med. Doesn't that sound like it should be illegal?

Cat-- I'm sorry your hip is hurting. Do you like swimming or water exercise? I wonder if that would be easier on your hip? (Maybe not, if kicking your legs aggravates the pain.....)
 
Chickadee, the hip is doing somewhat better now that the snow has passed. The worst things for my hip are weather events (bitter cold & rain are bad, snow is the worst for it) and jogging or walking (jogging is worse). Other forms of cardio are okay though - I haven't been swimming in a couple years as my gym doesn't have a pool, but I can do the bike, elliptical, arc trainer, etc at the gym. The bike sometimes makes my left knee hurt, but the hip is fine with it. When a really bad snowstorm rolls through, though, the hip can end up in tremendous pain, and that's what happened yesterday. I need to find somewhere to move that doesn't have snowstorms nor hot & humid summers. Heat and humidity cramp up my guts terribly, and cold snowy weather is bad on my joints - I can't really win no matter what season it is.

And that totally sounds illegal, giving your doctor two weekend days to contact the insurance company! Ridiculous! They should at the very minimum have given him business days, not weekend days. And 2 days is very little time for a busy doctor to respond - my GI sometimes takes over a week to respond to my calls/emails. I would definitely complain, talk to a supervisor, do whatever you can do to get them to approve it. Sheesh, isn't it fun how everything to do with chronic illness turns into something you have to fight for? Ugh!

Speaking of fighting for things, I had a GI appointment today. I've been having bad days off and on, and today has been a pretty bad day. I had no appetite earlier today but I knew I should eat something, so I just had some ramen noodles which are a safe food. But my stomach didn't want any food, so I got really nauseous after eating. Face was pale, and I felt kind of exhausted too. Just bleh in general. So when I went to my GI this afternoon, I was already in the kind of mood where I knew I wanted to fight to have a better quality of life in general and less days like this. It took a lot out of me - my GI came up with several ideas, and each one I'd have to explain in detail why that wouldn't work for me. Like, he wanted to increase my amitriptyline dose, but I reminded him that he did that once a couple years ago and my recurrent migraines came right back on the slightly higher dose. (I still get migraines, but not nearly as often, on my usual 25 mg of amitriptyline.) We discussed more tests but he said that given my history of normal test results, he doubted another test would show anything. I asked if I could go back on Entocort again to try to get me out of this mild flare or whatever it is, and at first he said no. He then said maybe I should stop taking Pentasa and see if that'd do anything and I said NO! When I was in between maintenance drugs after they stopped making Asacol, my symptoms came back very quickly (technically I was on Asacol HD at the time, but I couldn't digest it, so I basically wasn't on anything and I think that's when this flare first started). It was actually a pretty long appointment, with him throwing ideas out there and me saying why that won't work for me. I was getting frustrated and I was on the verge of tears and my GI was obviously getting frustrated too.

The nice thing about my GI is that he's usually willing to try some sort of compromise. After brainstorming ideas got us nowhere, he finally relented and said I can go back on a low dose of Entocort for awhile - the compromise is that he doesn't want me on the full dose, but he's okay for now with a low dose. The max dose is 9 mg - he's putting me on 3 mg. (If this dose doesn't do much for me then at least I'll be able to argue my case to go up to 6 mg.) I'm pretty hopeful about this, though. Even though it's a low dose, I respond well to Entocort. When I was at my sickest and skinniest several years ago, 9 mg of Entocort turned that right around and got me feeling tons better. I'm not at my sickest now, I'm not great but I'm not horrible either. So 3 mg holds potential for sure.

Oh! And when I was on Entocort 3ish years ago, only the name-brand was available and it was expensive, $75 a month with insurance. I already pay $75 a month right now for Pentasa, so the cost of Entocort was the one thing I wasn't looking forward to and I wasn't sure how I was going to afford $150 every month for just 2 of my meds. But they apparently make a generic version of Entocort now, just generic Budesonide, and it was only a $10 copay! Woo hoo! I get to be on a medication that will hopefully get me out of this mild flare finally, and I don't have to pay a ton for it. That's awesome! So my bad day is getting better. I'm feeling pretty optimistic now. My appetite came back, too - I'm eating a chicken wrap and so far no nausea. Things are looking up, although I had to fight for it quite a bit in that appointment! I should be a lawyer, I've gotten very good at arguing my case. :p
 
Chickadee - I started on Xifaxan 550 2x a day for two weeks. I think about four days in, I had two days of some D. The instructions said to let the doctor know if I had D for two or more days. She didn't want to take the chance that it could be C. diff, so she switched me to Flagyl. So I took 10 days of Flagyl (which has been used for SIBO too). By the end of it, I felt some relief, but symptoms came back. So I probably have an underlying cause, probably slow motility allowing the bacteria to stay in my small intestine. My diet isn't great either. I know for SIBO, I should be on a low fermentable carb diet like FODMAPS. That's probably why my symptoms came back. I probably allowed them to munch on some wheat and other tasty sweet stuff. :p

I'm not really looking to do the antibiotics again. I can't afford the Xifaxan. But it's OK, I'm starting to slowly do a low fodmap diet. Being a caregiver is so stressful, it's hard for me to make drastic changes in diet while having the other stress at home.
 
There is no such thing as a dx of IBS. IBS is just something the docs say you have when they haven't a clue. Get a new doctor! Colonoscopies should always have biopsies done if the patient is having problems. What is wrong with the doctors?
 
Guess who thought it was ok to eat Chili cheese fries yesterday because it was early in theday and thought "oh no problems, I'll pass this before work " and now is in the bathroom l. <----this guy
 
I mean absolutely no disrespect here, but I must laugh at the things we all have in common:
1-"Oh crap, there's a line..." (that's a recurring nightmare for me, actually)
2-People thinking that it's all in your head... (I don't know how in the world "just being depressed" could make you so violently diarheaic that you cannot leave your home...)
3-Fear of the "accident," or, conversely, memories of the "actual accident." For me, this has curtailed a lot of the activities I used to enjoy.
4-(for many) trying all kinds of stuff just to get the symptoms manageable, so we can go on living. A friend of mine with MS said that (Crohns/ IBS/etc) is like MS in the way that it works its way out differently in everyone's life, with eerie similarities but just enough differences to make it hard to track.

That's where I am right now. Feeling "normal," which was so weird to me (I have dealt with the symptoms on and off for over 30 years...so THAT was normal.) and not realizing that that's what "normal" might feel like...That happened to me this morning, and so far, tonight, I am still there.

So, I am literally here to bleed you guys for information. I am attempting to deal with this thing without chemicals for as long as possible, knowing that it is probably going to end up with me on meds anyway. I refuse to think about that right now.

So far, from you folks, I have gleaned these things:

Vitamin D3 deficiencies are common. Check. Found some stuff at walgreens. That's what put me on the path to "normal, " I think. Took about 3000 units several days in a row.

Inulin vs. psyllium husks: check. I have what I call a "dumping syndrome." For some reason, the psyllium husk stuff gasses me up and I can't get rid of it for days, and then-- well, then, the dump starts. (By then I am deathly ill.) But I've found that I can take a teensy bit of the Inulin stuff (with the vitamin D3 liquid) and somehow between these two things or whatever, the effect is a formed but soft product. It took a few days for that to happen, that's why I am guessing it might be the combination of the two. I was already using the Inulin stuff.

Lactaid: Check. Amazing. I use the Costco brand, because its cheaper. I don't just take it if I am going to have dairy-- I take it any time I have a food that is on my "suspect list." Cheap. Working for me.

Papaya Enzyme: Check. Again, it just seems to work on the gassy aspect low in my gut. Can't hurt me, so I am willing to do it.

Last one: pectin: Check. This one is new to my arsenal. I decided to try that in the form of a spoonful of apple jelly. (Apples already have the stuff, and jelly, well, jelly has it too.) Again, It's natural, so I figured, why not? I am skinny so I can afford the calories in such a minimal amount anyway.

Let me know what "home grown" remedies you may have discovered that seem to help you manage your symptoms...especially while you are in the undiagnosed, unable to get a whole lot of formal support state!
 
Cat-a-Tonic said:
Hi Mlits, welcome to the forum and to the club. If I read your post right - you had an emergency gut surgery many years ago but are still having IBD-like symptoms and are still undiagnosed? What specifically was the surgery for initially, did you have a blockage or appendicitis or something like that? And what was the indicator in the caption on your colonoscopy pics?



Hi there Cat-a-tonic-- thanks for asking-- I don't really know yet how to navigate this site, and yours is the only item that refers to a post I've written--(kind of like when you're trying to tell somebody about this blasted condition, isn't it? Sometimes feel like your talking into a wind tunnel!)

Anyway, here's what you asked for: Emergency surgery 30 years ago, I was told NOTHING. At least nothing that I remember. Dealt with severe constipation only ONE time before that surgery--that's what landed me in the hospital doubled over in pain.

After the surgery, I had labor-like pain any time I had anything in my stomach at all, and when the "poohs" came, it hurt like hell.

Now, many years later, I can look back, and see the progression from that part to extreme diarrhea (liquid shooting out, I know: TMI.) and seldom any constipation at all. Can't usually keep anything in me long enough to get constipated!!

As to the comment on the colonoscopy photos: it said, "Anastamosis, side to side, surgical changes, terminal ileum." There are two pictures.

So that's the phrase I typed into the search engine...did a little more reading; then I read the Rx sheets that come with the prescriptions which I had not yet started, and, frankly, they both scared the hell out of me. Decided to call the doc and reschedule the "follow up visit" which is TWO MONTHS out, and ask, instead for a consultation. (He's probably gonna throw me out-- I do not want to take those meds, unless there is no other way to arrest the symptoms.)

I want to know what happened to me 30 years ago, and what the best route to deal with it is--even at this late date.

Because mine is intermittent at this time, I would prefer to control it if possible without chemicals. Yeah, there's pain. When it's bad, it's an 8, but, praise God, that isn't that often. Mostly 3-5. Today is not a good day-- staying close to the potty--:poo: but taking something, that according to the folks who make it is somewhat known for causing an obstruction??--Naaah.

Does that make sense?

The meds are omeprazole (I don't have upper GI symptoms, other than a restricting of the esophagus--we did an endoscopy this time) and questran. I admit liking the IDEA of the questran-- I want a similar result without the danger!!

Thanks for asking. Its nice to talk to somebody who doesn't think you're just exaggerating. Frankly I am trying hard NOT to exaggerate. It's bad enough as it is!!

Blessings to you and yours.
Click to expand...
 
Hi Cat-a-tonic. I just want to send a quick note on Entocort. I was on it for 6 months total. From many people on the MC forum, we have discovered that for the drug to have good results, it must be taken for at least 4 months and it MUST BE WEANED OFF OF SLOWLY! A flare is likely to happen if you don'y follow those rules.

Also, there seems to be confusion about lactose ( the sugar in dairy) intolerance and casein ( the protein in dairy) intolerance. When ANYONE has gut inflammation, the body doesn't produce the enzymes to break down the sugars/lactose in dairy. It therefore ends up in the large intestine and ferments causing bloating, gas, pain and D. If one is dairy intolerant, they are reacting to the Casein in the dairy and will react with an inflammatory response ( IgA or Mast cell). If one is dairy intolerant, they should completely stay away from it ( just like gluten) because it will continue to cause inflammation in the gut.

By the way, if mast cell degranulation is part of your problem, then an OTC antihistamine can help tremendously. After weaning off of Budesonide, my once a day stool was still very soft. I was still sticking to my strict diet, so was wondering what I was missing. As soon I tried taking an antihistamine, my stools solidified to normal! I now know that I have to keep my histamine levels down by doing a few things. I take an Allegra in the am. A Benadryl in the pm. Don't eat food that has been left over for more then a day ( high histamines) and If I am eating out or going to a party or knoW I am drinking a little wine ( high histamine), I take an H-2 antihistamine ( like Pepcid) to make sure all the histamine receptors are being blocked. They are the only drugs I need now. Maybe some of you would do well with this protocol?
PS. If you google " high histamine foods", there is a list that is a good guide.

Leah
 
Mlits - you got a notification because I used your name in a post, that's all. :) To "tag" someone in a post like that, just type their username, that's all there is to it. (I think Cindy misspelled your name in her response to you and that's why you didn't get a notification on that one.) The forum isn't too difficult to use once you get used to it, but feel free to ask me any questions you might have about the forum itself.

Another thing, nothing is ever TMI on the forum. Don't feel embarassed to talk about that kind of stuff here, we all go through similar stuff and this is a safe place where we can talk about it without any embarassment. :)

As for the medications - Omeprazole and Questran are both fairly safe medications. The warnings on them will sound scary because the drug manufacturer is required to list any side effect that ever happened, even if it only happened to one person out of millions that have taken that med. You won't get all side effects, you won't get most, you might not get any side effects. I haven't taken Questran myself, but I was on Omeprazole for awhile. It's the generic name for Prilosec, it's an acid reflux drug. Do you have issues with reflux or with gastritis? I have severe GERD (basically chronic recurrent reflux) and Omeprazole worked well for me for awhile, but over time lost effectiveness. I'm now on a combo of Nexium, Zantac, and Tums. If you do take the Omeprazole on a long-term basis (longer than a few weeks), I'd recommend that you take a calcium supplement if you don't already, and do some weight-bearing exercise if you can. Most acid reflux meds are bone-robbers, so adding calcium and/or exercise will help counteract that.

Can anybody who's taken questran weigh in on it? I believe it's similar to Psyllium but I'm not sure - I do take psyllium with good results.

Anastomosis just means the surgical site, I'm presuming it's the site of your emergency surgery. When they resect a section of diseased bowel and sew the healthy bowel ends back together, that creates an anastomosis. So nothing worrisome in that comment. The terminal ileum (TI) is the last part of the small intestine, so it sounds like they may have resected your TI when they did the emergency surgery? That's interesting to me, as the TI is the most common area of intestine for Crohn's to manifest in. As for tracking down the information on your emergency surgery, that information is probably gone by now unfortunately. I'm not sure if it varies state by state, but I've heard that doctors are legally required to hold onto medical records for 10 years. But files from 30 years ago have probably been tossed out long ago. What you can do is ask your doctor about the anastomosis at your TI - ask if it appears your TI was removed, and if so what would that implicate. Oh, and 2 months isn't too bad a wait time for a follow-up appointment, sadly. It takes 3-4 months for me to get an appointment with my GI. (Although if I'm really doing poorly, he'll shuffle things around and get me in much sooner.)

I hope that helps or at least gives you something to go on. And I know you're not exaggerating! I've heard that one too - my father-in-law once told me I must be exaggerating or faking because he couldn't wrap his head around being so sick all the time. Ugh. (He's fortunately been much nicer to me since then.)
 
Leah H, yep, I was on Entocort a few years ago too so I know what to expect with this medication. Since I'm starting out at 3 mg, which is the lowest dose, there will be no need for me to taper. I had great results from Entocort several years ago so I hope it'll get me back into remission this time around, too. :)

Melibean, :( Chili cheese fries sound so good and yet so bad! I would surely be in the bathroom for ages too if I ate something like that. Well, now you know, definitely avoid those especially before work!

Moogle, didn't you try a gluten-free diet awhile back? Did that do anything for you? I don't know a lot about the low-fodmaps diet, but I wish you lots of luck in trying it. How's the situation with your mom & uncle going, any improvement since we last chatted?

Hey Cindy, how is your hubs doing? And how are you doing as caregiver? Are you guys back to double digits below zero wind chills, too? It was something like -20 wind chill here last time I checked. So sick of winter!

How's everybody else today? I'm pretty well. So far so good with the Entocort, it hasn't kicked in yet (it took about 9 days to start working the first time I was on it), but no side effects either. When I was on it a few years ago, it gave me some wicked headaches at first which were stopped in their tracks by Amitriptyline. Ami still seems to be doing its job, as so far no headaches this time around, so that's good. The sun is shining, my appetite is pretty good today, no pain although the guts are still a little grumpy but not too bad. I made it to the gym last night and had a good workout and was able to eat dinner, all good stuff. I feel like I have slightly better energy today, not sure if that's a placebo effect or if it's the Entocort starting to do its job. At any rate, I'm pretty good all things considered. How's everyone else? Everybody going to veg out tonight and watch the Olympics? That's my plan!
 
Cat-- Thanks for the support. I was supposed to get an answer about the vancomycin today, but now the insurance co says they never received my appeal OR the one my doctor faxed in. I don't believe that. My doctor was going to call them today or tomorrow. This is ridiculous.

Moogle-- I remember now that you had the problem with possible C Diff. I took two rounds of Xifaxan/rifaximin. I didn't have any problems, but I didn't have any improvement either. I'm glad you say some improvement with the Flagyl. Caregiving is EXTREMELY hard work. I helped care for my grandmother (who had dementia) for a short time before she passed away, and just for a short time, it was really hard. And I loved my grandma a lot, but it was exhausting. Bless you for doing this.

Mlits-- I've been on Questran (cholestyramine) forever. For me, it helps with diarrhea quite a bit, and by slowing things down, the cramps are not as severe. Although the powder does not have a pleasant taste, the fact that it's a powder means that you can personalize the dose. Perhaps you could try starting with 1/4 of a scoop/packet and see how that goes. You probably won't see a change the day you take it, but rather, the next day. If it helps at all or doesn't cause constipation, maybe try 1/4 of a scoop again...or half a scoop...and work your way up to a dose that reduces diarrhea but doesn't cause constipation. ETA: My guess is that most of the adverse effects occurred when it was being used as a cholesterol medication and with people who already had a tendency towards constipation.
 
Cat - To be honest, I flirted with a gluten free diet. It feels like I never stick with "diets". I get discouraged easily. Same thing with fodmaps. Things are at a standstill with my mom and uncle. I'm meeting with my lawyer and another person who may have answers we need about medicaid. Hopefully today, I'll have an idea of how long things will take. I can't wait forever, I need a job asap.

Chickadee - I'm glad you are talking about Questran, because I'm trying it again. I tried it a few times, and by day three, I'm usually really gassy and bloated. I think my gut is really sensitive to any binding agents (fiber, questran, or calcium) and get constipated. I think the reason is, is that SOMETHING is being malabsorbed and causing dumping and if all that is getting solid, it's going to clog things up. I just tried benefiber and it was painful, and trapped gas kept me up at night.

I've heard some people with IBS say questran worked great for them (assuming they were having bile salt D), but it took two weeks for the gas and bloating to go away. Did you notice anything like that? I may try 1/2 pack in the morning for two weeks and see if it gets better. I'm honestly being stubborn and not wanting to be on a FODMAP diet and hoping this would let me eat normally.
 
Hey, everyone!
Cat - hubs is slowly getting better, less pain finally. He's getting more sleep,still on the couch. I had to learn from his PT how to help with his stretching exercises as he can't use the arm at all. It's definitely going to be a slow process. We're bumping heads too cuz he wants to do stuff for me and I want to do stuff for him, it's a little silly but we're working it out. :p Given what you need for weather conditions, it sounds like you need to move to Arizona! No snow and cold, no humidity either. It's not very pretty there but would probably be more comfortable for your hip and your belly both.
Yeah, we're back in the deep freeze these last couple days. I did hear that we might be back to 28 above by next Wednesday though, so that's exciting!
Leah - definitely spot on with the lactose/casein thing. I'm lactose intolerant, but taking Lactaid doesn't help me. I can still eat hard cheese like aged cheddar and swiss, because the lactose ages out of cheese, and lactose-free foods, but if there's lactose in the food, the Lactaid doesn't work fast enough. I have to check every label on every food I buy because there is milk/whey/lactose in a lot of food you'd never suspect. I have an app on my phone called ipiit that has a lot of foods in its database, you just scan the barcode and it tells you if the food is safe for you based on ingredients you need to avoid (for me, gluten/dairy/corn syrup).

Melibean, one thing I've learned is never eat a food I know is questionable for me, because I never know how long it will affect me. If I eat beef it will hurt me for 3-5 days afterward and it's just not worth that kind of suffering. Easier just to avoid it, even though it tastes good and I miss it.
 
Moogle, what you said about questran causing gas & bloating for the first few weeks - psyllium was similar to that for me. The first few weeks, I had more cramping than usual as my body was adjusting to it. But after that, I had much less cramping, like significantly less. I'm always kind of bloated so I don't think there's much difference there, and I didn't really notice a change in the amount of gas I pass either - the big difference for me was the cramping.

Huh, that's interesting about Questran initially being used for cholesterol. I've heard that psyllium can help lower cholesterol too. For some odd reason, even though I'm thin and eat an okay-ish diet and work out a lot, I have borderline-high cholesterol (both my good and my bad cholesterol are a bit high, which is also odd to me!). So I'm glad to be on psyllium, I hope it's helping me in the bad cholesterol. I'm due for my annual physical with my GP in the next month or so, and I'm pretty sure he'll want to check my cholesterol again. I'll be interested to see what that result is like. High cholesterol seems to be a genetic thing with women on my mom's side, though, so it may still be kind of high.

Chickadee, make sure you write down the names of who you speak with at the insurance company, write down all the pertinent info. If you have to make some type of formal complaint against them, having names, dates, etc will help your case. I can't believe they lost both your appeal and your doctor's - they sound totally incompetent! I hope your doctor can straighten them out and get you on this med already without any further stress or aggravation.

Cindy, I actually think Arizona is beautiful - the mountains in the Tucson area are gorgeous! But I don't think I could survive a summer there. Even without the humidity, the insane heat is just not something I think I could do. I have a friend who lives in the Phoenix area, and she's mentioned something to the effect of, when the temp gets above 120, all the cockroaches start coming up out of the sewers and swarming into the streets - yeah, no thanks. :p I'll take snow and cold over being in an oven with swarms of roaches any day! I could maybe see myself living somewhere like Flagstaff, as it's up in the mountains and they get somewhat cooler weather, I think they sometimes get snow in the winter and they don't get crazy ridiculous hot weather in the summer like the rest of AZ does. Plus it's beautiful, being so near the Grand Canyon. So if I ever get to retire someday (not likely) and have the funds to move somewhere warmer, Flagstaff is on the list of potential places to go. That's a big IF, though, I doubt I'll be able to retire. We still have 12 years on the mortgage, 11 years on hubby's student loan, a pile of various other debts like credit card, doctor bills, etc. IF I can get all that paid off and somehow save enough to retire, that would be amazing - I don't forsee it happening realistically though. My grandpa has advised me several times that there's not much point in living past age 75, as quality of life and health went wayyyy downhill for him around that age. My health obviously went downhill way earlier than that age, and it's hard to even imagine living until 75. So, maybe I'll retire at age 74 and a half. ;)

I hope everybody has a good weekend. Rest & relax, stay warm!
 
I'm sitting here crying because I just got off the phone with the insurance co. again and am STILL getting the run around. My doctor's office called this AM and was told even different info. I have asked for a supervisor to call me, but they said that will be 24-48 hrs. I'm so angry and discouraged. :(

Moogle, I've been taking Questran for so long that I don't remember what it was like when I first started. However, I have trouble if the generic company (there are a few) is one that uses sorbitol.

Cat-- I used to live in Tucson and loved it. It does get hot in the summers though.
 
Aw, Chickadee. :( Big hugs! What a sucky situation, I hope the supervisor actually calls and that you can get this worked out. But seriously, they didn't have a supervisor on duty that you could speak to or get a call right back from? I've worked in a couple different call centers, and if a caller wanted to speak to a supervisor, there were usually a couple on duty so that if one was busy then the other one could take the call. It would have been unthinkable to make someone wait that long for a call back. That's just ridiculous that they're making you wait potentially 2 days to hear back from a sup! I'm angry on your behalf, that's terrible. Hang in there.

Just a thought while I'm reminiscing on my call center days - is that insurance company of yours open on weekends? Maybe the supervisor took off early today and won't be back till Monday and that's why they're saying 48 hours. That'd still be pretty bad of them, but that's the only feasible reason I can think of for them giving you that ridiculous callback timeframe.
 
Moogle, I hate to say this, but making diet changes is the safest and surest way to healing your gut. If you don't eventually stop eating the foods that cause inflammation, and irritation, you will always be looking for the next drug to help cover up the fact that you keep eating foods that are hurting you.
 
Thanks for the hugs, Cat! Yeah, I just don't know what else to do. The insurance co. is open on the weekend. (They called me last Sunday to tell me the Prior Authorization was denied.) However, maybe the supervisors don't work on the weekends? I really don't know. I called at around 3:00 EST today, which seems like a time a supervisor should be there. Like I said, everyone I have spoken with has contradicted what the others have said. I have my membership manual, and I've been trying to go according to that, but it's not working.
 
Leah - I understand what you are saying. What you don't know is that I'm in a VERY stressful place in my life as a caregiver. I'm about to place two family members in assisted living and about to leave my home to look for work. I don't want the added stress of making diet changes right now. I'm VERY underweight and need to eat. The anti-D meds help enough for me to get through the day. I'll make the diet changes when I'm in a better position in my life to take care of myself.
 
By the way, it's not like I haven't tried changes in my diet. I've tried to quit caffeine, gluten, dairy, tried vegetarian.... there wasn't a perfect answer. My gut is messed up. It'sg going to take time, and trial and error. Right now, I have too much to take care of in my life to focus on "elimination diets". Leah, I'm sure you don't know me or what's happening in my life. It's not a good time for me with the stress and change I'm going through. Thank you.
 
So sorry Moogle. Didn't mean to add more stress to your life. I hope things settle down enough for you down the road. I only meant to say that healing our guts takes a long time… even when we are strictly watching what we eat. It took 2 years for me to get where I am. Clearing the body completely of gluten ( half life) antibodies takes 4 months! I'm sure you will do what needs to be done when you can concentrate more on you. Again, sorry and I hope things get better for you soon.
 
Hey, everyone. It was quite a weekend for us, we had to go to WI and clean the rest of our stuff out of our old house. It was single digits cold and of course we have the heat and power off there. I tried to help with some of the cleaning and hurt my back, and then my hubs was going down in the basement and slipped on the concrete steps and fell on his back and (of course) the back of the shoulder he just had surgery on..... :(. We're hoping he didn't do any additional damage. We won't know until tomorrow afternoon when he sees the surgeon. Ugh. We were both exhausted by the time we got home yesterday. I didn't eat enough with all the travelling and what not and ended up down another pound for the week. Boo. And even though I've been pretty careful, my belly was pretty darned uphappy with me last night. My hubs made me homemade pizza with gluten-free crust and lactose-free cheese and I could only eat a little bit of it.
So we're hoping for a better week, thinking we'll try going out to eat to the Japanese restaurant we both like and a movie this Friday for Valentine's day. And a nice, relaxing weekend at home.
It sounds like many of you have been having rough times too. I've got hugs for all of you, and especially for Moogle, with all you've got going on, it's just not fair that you can't get one thing to go your way!
 
Moogle, big hugs. Thinking of you today.

Chickadee, any word from the insurance company? I hope you were able to make some progress with them and get the prescription approved already!

Cindy, ouch and brr! Hopefully your tummy behaves and lets you enjoy some yummy Japanese food (sushi I presume?). Sushi is usually easy on my tummy, so is miso soup. Rice is always easy on me. Now I'm making myself hungry! :p Hope your back feels better and I hope your hubs didn't aggravate or undo anything from the surgery!

How's everyone else doing? I'm pretty good - had an active weekend (went snowshoeing twice!), and I feel pretty well. I think this low dose of Entocort is just exactly what I needed. It's giving me the healing and energy I need without affecting my sleep or moods. I lucked into the right balance - I wasn't sure a low dose (3 mg) would do much, but it's doing just enough. :)
 
Still no word from the insurance co. :( The supervisor never called me. I sent an e-mail to my doctor asking how he wants to proceed. I found info online about using the generic IV solution of vancomycin (which is cheaper) and having it compounded into an oral solution. We'll see if my doctor thinks that's a good idea or not. I will be filing a complaint regarding my insurance company to any agency that takes complaints.

Cindy, sounds like a really tough weekend! I hope you both and rest and heal this week.

Cat, so glad the Entocort is working! That's actually a med of last resort for Mastocytic Enterocolitis. I've considered asking my GI about it, but since I'm already at osteopenia concerns, I'm not sure if it's a good idea.
 
Do you ever feel like life is like a juggling act trying to balance everything?

Chickadee I do hope you can get something sorted with your insurance and get the drugs that you need and don't rather than later.

I've had a really bad weekend with pain and diarrhoea, (warning of tmi now) I was expelling what looked like strips of something and have no idea what it was and couldn't relate it back to something I had eaten. I will def be telling my gastro cos it really alarmed me. I'm away from home again cos dad still in hospital, we found out earlier that the bleed on his brain has got worse and he needs surgery to fix it so he's to be moved to a different hospital asap.

Cindy your weekend didn't sound like much fun, I hope you're both ok. Having had shoulder surgery followed by a tear in the bicep I cringed when I read your hubby had slipped on the stairs and really hope he didn't do any damage.

Glad the entocort is working for you Cat, it's great to hear some good news.
 
Chickadee, interesting to know about Entocort and mastocytic enterocolitis! Entocort works for me, it got me into remission the last time I took it (from Oct 2010 - April 2011). This is my 2nd time on it, and I'm just on a low dose this time - last time I was on 9 mg for 3 months and then 6 mg for 4 months, and I slowly but surely went into remission over those 7 months. I'm now on the lowest dose, 3 mg, but I think my ongoing flare is mild enough that 3 mg is enough to get me feeling well. I'm on day 6 of Entocort, honestly it really shouldn't have even kicked in yet (it usually takes a few weeks), but I haven't had d in the last 6 days, no blood, I have had good energy and I've exercised every single day since starting Entocort. I don't know, maybe it's placebo effect or maybe it kicked in super fast this time around, not sure. But whatever's happening, it's a good thing! I really hope this gets me back into remission. My GI did mention that he's got a few patients who are on 3 mg indefinitely as a maintenance dose, so that leads me to believe that he'll let me stay on 3 mg as long as I need to. I see him again in May and we'll re-assess then, so it sounds like I get to be on Entocort at least until then.

Back to the mastocytic enterocolitis thing, I totally blanked at my GI appt last week about asking him if he stained the biopsies for ME. I was having such a bad day and I ended up being on the verge of crying the whole time and asking him for ideas on what we can do to get me a better quality of life, and after much discussion, we agreed on a low dose of Entocort. I felt such relief once we decided on that, I forgot to ask him my other questions! I was going to ask him about testing my vitamin levels, too. Anyway, that's interesting to know that Entocort can work for ME. My GI has been leaning towards microscopic colitis (given the lack of visual evidence of inflammation on all my test results) and I know Entocort works for microscopic colitis. It also works for TI Crohn's. And it doesn't work on much else besides those things - so surely I must have some form of IBD since I respond so well to Entocort.

Osteopenia sounds scary and I'm not even totally sure what it is - I had to google it just now. I was probably getting borderline close to that myself after my first round of Entocort. I had been sick sick sick for a year and had lost a lot of weight and I'm sure I lost some bone & muscle mass just from being ill and having malabsorption. Then I was on Entocort for 7 months, and as you alluded to, corticosteroids like Entocort can rob bone & muscle mass. I developed hip pain around the time I was coming off Entocort and it was diagnosed as arthritis by my GP, and he sent me to physical therapy. My physical therapist confirmed that I had hardly any muscle mass - my bone mass wasn't checked, but I'm guessing it was similarly bad. My physical therapist was great, and she got me exercising and enjoying it, and then I started lifting weights which became my favorite thing. I've built back up my muscle mass and then some, so hopefully my bones are better now too. So long story short, if you're well enough to lift weights or do some weight-bearing exercise of any type, that could help both your muscle and bone mass. Now that I'm back on Entocort, I'm working out as much as I can because I know that now for sure I need to really maintain my muscles & bones. I'm already on GERD medications which can rob bone mass too, so I really have to hit the gym! But as I said, the good news is that I'm feeling well enough to work out multiple days in a row without getting exhausted. I'm rambling now, but in a nutshell, weight-bearing exercise is a good thing if you're well enough to do some. (Obviously don't push yourself if you're not well enough to exercise!)
 

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