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Dahlia, I'm honestly not sure. I would think for a child, she could get some sort of assistance - maybe an IEP for school? How old is your daughter? I know with Autism, early intervention tends to lead to the best outcomes. For my cousin, he was almost non-verbal for awhile, but with intense therapy and a strict diet, you can have a conversation with him. His speech is pretty monotone and he's quite awkward, but you can talk to him and he'll talk to you. He even sometimes will make eye contact (that's another thing that I really struggle with, by the way - I've adapted by looking at people's glasses, or eyelashes, or whatever other facial feature near their eyes).

It's interesting that you mention migraines - I never ever used to get migraines. Then this presumed IBD came into my life back in 2009, and suddenly I started getting migraines regularly. So I think those two must be connected for me somehow as well, the migraines and the gut issues. They started right at the same time, it would be too big of a coincidence for them not to be connected, I think.

Cmack, thanks! I'm much cooler on the internet than I am in real life. :p
 
I have had what are called "cluster headaches". They are excruciating! I feel for anybody who suffers from severe headaches. They are so awful. I had them several times a day, every day for two months before. I'll never forget it. :voodoo:
 
Cmack, I think I get those when I'm on Entocort. It's like horrendous throbbing headaches that can last for 5 days. And when I'm on Entocort, sometimes I get those headaches every week - so literally, 5 days of headache, 2 days of no headache, then another 5 days of headache, repeat. It was horrendous. That's the only real side effect I ever got from Entocort. Pred makes me chubby and crazy and moody, but no headaches - it's weird.
 
Cat - We homeschool so no IEP needed, and it doesn't seem to cause problems away from home. We did have her tested for dyslexia, which she has, and that diagnosis was hugely helpful and the things we have done differently have made an enormous difference. I'm just not sure the same is true (in her case, and at her age) for autism. It's tricky.

My migraines came before the bowel issues, but once the bowel issues started there was a HUGE increase in frequency. I had stopped taking the supplements I take to reduce frequency when they put me on a clear liquid diet, I think. AFter getting 3 in a week I had to do something. I tried harder to stay hydrated and added my supplements back in (magnesium, fish oil, co-q10) and it actually worked. They are (fingers crossed) back to my normal rate (1-2 a month). No clue if that would work for other people, but IBD can make you dehydrated and cause nutritional deficiencies, both of which can cause headaches or migraines. I hope you get some relief. They are really unpleasant, especially when they are on top of other problems.

Cmack - that sounds awful. It's so frustrating when you can't stop a headache.
 
Hi everyone, I wanted to join this forum because I'm really at a loss for what to do.

Last year, in September, I got a stool test for blood which came back positive. I was referred to a GI, who performed a colonoscopy and endoscopy, with biopsies, all which came back negative. But ever since then, I still suffer from irregular blood counts, and I suspect I'm still bleeding even though a recent stool test I did again came back negative for blood. But I still feel like I'm having bleeding even though I can't see it, I'm just judging by the low blood counts. I did have another colonoscopy with a new GI on Tuesday, and the only thing they found was one tiny internal hemorrhoid. However, I don't think the hemorrhoid is what's causing the bleeding and low blood counts because it was very small and it wasn't seen on the previous colonoscopy. Aside from this, I also have a lot of gas, increased bowel movements, and a feeling of incomplete evacuation. I'm just really frustrated that they haven't found anything and I need a real reason as to why this is happening. It's been disrupting my school and social life, because I'm constantly worried and uncomfortable.

I do have a follow-up with the GI on the 28th. Based on my symptoms, what do you all suggest I ask her? She knows I'm bleeding, and that was the reason she ordered another colonoscopy. But with it being negative again I feel like she might brush me off and just diagnose me with IBS (which I KNOW doesn't cause blood in the stool).

I really hope they're not missing anything significant. I'm only 17 and these problems started when I was around 15, but I only started getting blood last year. I'm just confused as to what I should do. My parents also seem at a loss for what's happening, and I think at this point they're just taking the hemorrhoid diagnosis as it is. But I really feel like there's something else going on. :/
 
kittykat234 said:
Hi everyone, I wanted to join this forum because I'm really at a loss for what to do.

Last year, in September, I got a stool test for blood which came back positive. I was referred to a GI, who performed a colonoscopy and endoscopy, with biopsies, all which came back negative. But ever since then, I still suffer from irregular blood counts, and I suspect I'm still bleeding even though a recent stool test I did again came back negative for blood. But I still feel like I'm having bleeding even though I can't see it, I'm just judging by the low blood counts. I did have another colonoscopy with a new GI on Tuesday, and the only thing they found was one tiny internal hemorrhoid. However, I don't think the hemorrhoid is what's causing the bleeding and low blood counts because it was very small and it wasn't seen on the previous colonoscopy. Aside from this, I also have a lot of gas, increased bowel movements, and a feeling of incomplete evacuation. I'm just really frustrated that they haven't found anything and I need a real reason as to why this is happening. It's been disrupting my school and social life, because I'm constantly worried and uncomfortable.

I do have a follow-up with the GI on the 28th. Based on my symptoms, what do you all suggest I ask her? She knows I'm bleeding, and that was the reason she ordered another colonoscopy. But with it being negative again I feel like she might brush me off and just diagnose me with IBS (which I KNOW doesn't cause blood in the stool).

I really hope they're not missing anything significant. I'm only 17 and these problems started when I was around 15, but I only started getting blood last year. I'm just confused as to what I should do. My parents also seem at a loss for what's happening, and I think at this point they're just taking the hemorrhoid diagnosis as it is. But I really feel like there's something else going on. :/
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Welcome,kittykat. I would suspect some form of IBD because of the bleeding. You keep pushing the doctor until you get answers. Let us know what you find out.
 
Sorry for the quick post, not feeling great but wanted to give a quick update.
NG tube has just gone in and I'm not going to lie, it hurts and I'm not a happy camper right now. Feeds will start sometime today but I'm getting a partially broken down feed to help with tolerance and starting at 35ml an hour then building up slowly.

The dietician was able to see the results from my gastric emptying study and I do indeed have delayed gastric emptying/gastroparesis! So that is finally an answer! I'm sure you all understand the mixed emotions surrounding that!
 
Glad it's in. Do you know what size the tube is? The smaller the tube, the less uncomfortable it will be. My daughter used a 6Fr tube.

She was also miserable the first night. Really hated the tube! Her nose and her throat hurt. But the second night was better and the third night was even better. By the time we left the hospital, it didn't bother her at all anymore.

Throat lozenges helped with the sore throat. They also had a numbing spray for her.

My daughter wasn't able to tolerate an NG tube because of the Gastroparesis, so it is possible you may need an NJ. Or you may need to keep the NG rate really, really slow (which obviously isn't ideal).

Anyway, good luck and glad you have a diagnosis!
 
Hi Kittykat, welcome to the forum. I'm sorry you had to join us but glad you found us. I agree with Ron, you know your body best and you said that you think it's more than just hemorrhoids/IBS, so do keep pushing the doctor for answers. Have you had any imaging tests, such as CT or MRE? What about pill cam (also known as capsule endoscopy - that's where you swallow a tiny camera and it takes pictures all throughout your digestive tract)? I agree that blood in the stool is not normal and should be investigated further. Yes, sometimes internal hemorrhoids can bleed a lot, but if you only have one and it's tiny, then you're right that that's probably not the cause of the bleeding. Have you had other symptoms such as night sweats, weight loss, pain or urgency waking you in the night, joint pain, eye or skin issues? Those things would all also indicate that it's something along the lines of IBD (Crohn's/colitis) but not IBS.

Sarah, congrats and condolences! I'm so happy that you got a diagnosis. I figured you must have something along the lines of gastroparesis, but I'm sure it's nice to be validated and know for sure and be able to move forward with treatment. It also of course sucks to have gastroparesis, but now at least the monster has a name so you know what weapons to use to fight the monster. Let us know how the tube feeding goes once it starts. I've had an NG tube in, mine was only for 24 hours, and I recall that I really hated it, so I definitely understand you not being happy with the NG tube right now. It's not fun, but you should get more used to it the longer it's in, and hopefully in the long run these tube feeds will really benefit you and get you some quality of life back. In the meantime, hang in there!
 
Cat:

That's very interesting! I know autistic children sometimes do better on gluten-free, casein-free diets, but I haven't looked at the science behind that (not disputing the diet helps, of course). Have you ever tried being casein-free? I was a bit odd as a child too (I didn't speak in full sentences until I was three, instead using mostly four two word phrases to communicate). After I spoke my first sentence, though, they couldn't shut me up! I've always had problems with constipation and intestinal pain, but it wasn't until I had my third child (now 18) that everything fell apart.

It's interesting that you began to get migraines as well; I had my first when I was 13, but they were minor annoyances until after I had my first child, then increased in frequency after my second, and became daily after my third (they are all within 3 1/2 years of each other) in 1998. I was diagnosed with celiac disease in the fall of 2000, and crohn's popped up in my duodenum in 2004. The only time the headaches have been under control is when I have been on prednisone. I respond really well to it, but am having more trouble finding a good maintenance medication. I have my fingers crossed that your current mix of LDN and lialda works for you.
 
Ron - I will definitely plan to ask about IBD, thank you.

Cat - Thank you for the advice. I have not had a CT or MRE, however I did have a Meckel's diverticulum scan. But that doesn't show all causes of bleeding, just diverticulum. I did message my GI and ask her about a CT scan, but she just said that since the colonoscopy was normal I don't need to do one. I'm seriously confused on how she, a GI, doesn't seem to understand that a TINY HEMORRHOID CANNOT BLEED THIS MUCH, especially enough to make me anemic. I am not going to just "eat more fiber" or "drink more water" because that's not solving anything. I have had weight loss, right now it's stable but it used to be higher. About the night sweats, I have been having them lately but I think it's mostly because it's getting warmer and I sleep in really thick PJs. Nothing waking me up in the night as of yet, but I do get a sense of incomplete evacuation even after having a BM. The only eye issues is pink eye here and there.
The thing is, I feel like both my GI and my parents won't take me seriously after the colonoscopy. I practically had to beg my parents to get me a new GI, and they said that the colonoscopy was the last thing we were going to do, and I think since I got a "diagnosis" of a hemorrhoid, they aren't willing to get me more tests. I also think the GI will do the same thing. She's not taking my bleeding seriously because my iron levels aren't "low enough" for there to be a serious problem, but I myself have noticed a downward trend in my blood tests, despite my increased iron intake. I really want to push for at least an MRE, if not a pillcam, but I don't even know if my GI would be willing to do that :/. It's just upsetting because she, out of all people, should know bleeding is not normal and shouldn't just brush me off because the colonoscopy was normal. I am bleeding from somewhere, and the fact that we don't even know where scares me.
 
Hi kittyKat,

Welcome, I'm sorry to hear about your troubles. I would keep asking for more testing to be done. There is something weird going on for sure. You may have to get another doctors opinion too. Don't give up, keep pushing for answers.

Welcome again. I hope you get some answers soon so you can feel better.


Your new teammate,

cmack
 
Sarah - that sound a really uncomfortable, but I hope it helps. I hope the diagnosis helps, too.

Kitty kat- I'm sorry you are going through all that. I hope your GI comes up with something to help. You're female, right? Any chance your period is contributing to your anemia? 17 is about when I became anemic and it is something I've struggled with all my adult life (long before my bowel issues). It's only now getting better bc I have an IUD as I barely lose blood now. Iron is so hard to absorb, even when you take the right kind and are careful about avoiding foods that interfere with iron absorption (and taking it with foods that help). The reason I suggest it is that if you can get your menstrual bleeding under control, if you are not anemic then great and if you are anemic then that is evidence that you are losing too much blood in your bowels. What is your serum ferritin now?
 
Kittykat, poor thing, only 17 and it sounds like your parents aren't very supportive. Unfortunately, this means you're going to have to advocate for yourself. The best way to do this is to educate yourself as much as possible - that way, when you go to the doctor and ask for an MRE, and the doctor asks why you feel you need one, you can have a response ready. (Like, if it were me, I'd say that since the scopes only see the very beginning and very end of the small intestine, and since Crohn's can manifest anywhere in the digestive tract - literally anywhere from mouth to anus - that's a whole lot of small intestine that hasn't been looked at, and the MRE can look at the small intestine - so can pill cam.)

Jabee, I haven't tried casein-free specifically. But I am lactose intolerant so I do avoid most dairy - I tend to opt for almond milk (it's safe for me and allowed on low-FODMAP) and I can do goat cheeses (also allowed on low-FODMAP and doesn't bother me like cow cheese would). I know gluten isn't an issue for me, I've tried gluten-free and it made no difference for me. If anything, I do better with gluten - some of the gluten substitute products contain corn or coconut, both of which bother me (coconut does horrible things to me, I can't tolerate it at all).

And as for the migraines, I take 25 mg amitriptyline every night before bed and that helps greatly at preventing most of my migraines. These days, I only get a migraine when I change dosage on my prednisone. Whether I taper down or am having symptoms and have to increase the dose, it doesn't matter - changing the dose either up or down will give me a migraine with aura. It's not fun, but at least I know to expect it. And honestly the aura is the worst part, the migraine itself from pred isn't too bad at all. So I can't complain too much.
 
Dahlia - my blood counts have jumped around quite a it - my hemoglobin has gone from 11.1 to 11.9 to 11.6 and my most recent one showed 11.1 again. My ferretin is 11. I have thought about the possibility of my period causing this but they're usually not heavy and only last around 3-4 days. I really feel like there's some bleeding going on in the bowels, if not the large intestine then the small.

Cat - does Crohn's usually present occult bleeding and anemia as one of its symptoms? I just hope this bleeding is caused by something that won't kill me (like cancer in the small intestine :/)
 
Kittykat - Ferritin of 11 is awful and makes you feel like garbage. Ive had several doctors say you want it above 50. It can go that low from periods, though maybe yours aren't heavy enough. My daughters was 13, I think. She took iron for a year and it is better but still too low. Now she is on BCP just to make her periods lighter (doctor said IUD is painful to insert in people who haven't had kids so she recommended BCP or the one that goes in your arm). I have a friend who can't absorb iron after bariatric surgery and she goes to a hematologist. The hematologist gives her IV iron and she gets it whenever her ferritin drops below 50. I don't see how a tiny hemmeroid could get your ferritin to 11.
 
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Kittykat, yes - everybody with IBD is a little different, so some will bleed and others won't. I'm an on-again off-again bleeder myself, and I did have some pretty bad iron deficiency anemia back in 2015 that I needed iron infusions to treat (I had a full year of bleeding thanks to some supremely nasty internal hemorrhoids that just would not go away, even when I had them banded - ouch!). Intestinal cancer in someone as young as you would be quite rare, so I wouldn't worry too much about that. (I know that's easier said than done when you don't know what's going on with your body, but it's much more likely to be an IBD than cancer at your age, I promise.)

What color is the blood that you're passing? If it's brighter/red, then it's likely coming from lower in the digestive tract - colon, rectum, or anus. If it's darker/black then it's coming from higher up, which would be another good reason to have a look at your small intestine. But in either case, the cause should be investigated further. You can't just let bleeding go without finding (and treating) the cause, especially if it's causing anemia.
 
Dahlia - I haven't had kids and I had an IUD put in back in December. It wasn't a super fun time but it wasn't horrible by any means either. It cause some cramping, but my guts cause me wayyyy worse cramping, so in comparison it was a cake walk. :p I'm 37 though so I'm sure it's probably different for a teenager.

Oh, and on the subject of ferritin - just before I had my iron infusions done back in 2015, my ferritin level was 4. I felt awful. So very fatigued! I could have slept for 24 hours a day and still been exhausted. Last time I had my ferritin checked, it's now at 87. BIG difference! That horrendous fatigue is gone and I feel like a human again.
 
4? ouch! I think the worst mine was recorded was mid-teens and that made me really tired. That's with iron supplements. That's wonderful that you are at 87 now. I'm trying to get there. Still below 50, but getting there.

Kitty-kat asking for a referral to a hematologist for IV iron is also an option, though you might want to try something milder first. I hope you can get the low iron treated, as well as finding the cause. You can get the iron up without finding the cause, though I hope you get both taken care of soon.
 
Dahlia - thank you so much for the advice. I do have a gynecologist, I will probably ask her about the BCP. The last time I saw her she did mention endometriosis as a possibility as well, since I tend to get rectal pain around that time of the month as well.

Cat - thank you for the reassurance. I know cancer is less likely but I guess this whole thing has just got me very scared for whatever is going on. The bleeding is a bit complicated...I've had instances of bright red blood, as well as mucus sometimes, on the stool, but when I took the stool test the blood wasn't very visible, it was more mixed in. There were red and black flecks on it, but I couldn't tell if it was blood or undigested food. Plus the fact that I was anemic at the same time definitely isn't a coincidence. I don't actually see blood nowadays, but the anemia is what has gotten me so worried. My hemoglobin used be very steady up until September last year, and I never had to deal with anemia, even when I experimented with veganism two years ago. The blood counts were perfect. And back then my periods used to be heavier as well.
Just another question - I took a calprotectin test before my recent colonoscopy and it came back completely normal <15. Does the test reflect inflammation only in the large intestine or does it show for the small intestine as well? I'm asking this because the specialist who did my colonoscopy said that if they end up not finding anything again, I should monitor my inflammation levels with the test, and if it gets higher I should think about doing a pillcam. But I feel like even if the test didnt show inflammation I should still get the pillcam or an MRE because of the bleeding.
 
Dahlia, yeah, I only got to 87 because I had a series of 3 iron infusions, and now I take a liquid iron supplement daily. I think the liquid iron doesn't bother my stomach like iron tablets would, and it seems like it is easier for me to absorb. Also, you probably already know this, but don't take iron supplements at the same time that you're having calcium (either in supplements or in food). Apparently calcium inhibits iron absorption (so does tea which is weird - I've cut way back on my tea drinking because of that). Vitamin C/citrus helps with iron absorption, so I always add a dash of lemon or lime juice to my liquid iron or have it with orange juice.

Kittykat, it's true that blood can be barely visible or not visible in stool - that's called occult blood, and there's a test for it (and yes, that can also cause anemia if it goes on for long enough). Your doctor should be able to run a test for that to determine whether or not you do have occult blood in your stool.

I'm not sure of the answer to your question about calprotectin - I think I've only ever had mine checked once and I don't know much about the specifics of that test. I know it looks for inflammation in the digestive tract, but I don't really know more than that. I don't think it looks at specific areas of the digestive tract, but I'm not certain. That might be one to ask your doctor about. For what it's worth, my calprotectin came back normal as well, even though I was in a bad flare at the time. I do agree that you should pursue MRE or pill cam or both - they haven't found the cause of your symptoms yet and obviously you're still suffering with symptoms, so pursuing further testing would absolutely be reasonable and necessary. And if it were me, I'd pursue an MRE first. If you have any narrowing in your digestive tract, the pill cam has a chance of getting stuck, and that's not something you want to happen. MRE should be able to see any narrowing or thickening, so that would tell you at the very least if it's safe or not to have the pill cam.
 
kittykat234 said:
Dahlia - thank you so much for the advice. I do have a gynecologist, I will probably ask her about the BCP. The last time I saw her she did mention endometriosis as a possibility as well, since I tend to get rectal pain around that time of the month as well.



Cat - thank you for the reassurance. I know cancer is less likely but I guess this whole thing has just got me very scared for whatever is going on. The bleeding is a bit complicated...I've had instances of bright red blood, as well as mucus sometimes, on the stool, but when I took the stool test the blood wasn't very visible, it was more mixed in. There were red and black flecks on it, but I couldn't tell if it was blood or undigested food. Plus the fact that I was anemic at the same time definitely isn't a coincidence. I don't actually see blood nowadays, but the anemia is what has gotten me so worried. My hemoglobin used be very steady up until September last year, and I never had to deal with anemia, even when I experimented with veganism two years ago. The blood counts were perfect. And back then my periods used to be heavier as well.

Just another question - I took a calprotectin test before my recent colonoscopy and it came back completely normal
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So I have some photos from the recent colonoscopy and what leaves me concerned is the fact that my colon still looks like it has some stool left in it...I'm a bit confused because the doctor said that my colon looked perfectly clear but when I look at it there are literally bulks of stool around the sides. The main reason why we did the colonoscopy was to make sure nothing was missed on the first one, but looking at these photos...I am concerned that there may have been a small polyp or something that they weren't able to get a good look at.

Here are the photos. They are kinda gross to look at but I was wondering what you guys think. Is it possible I wasn't cleaned out enough and they might have missed something small?
http://imgur.com/HOOJgY8
The ones that make me really concerned are images 4 and 5 - you can see that there's a whole chunk of stool on the side.
Btw I'm sorry if I sound like a hypochondriac. This whole thing has just gotten me so worried and I want to make sure nothing has been missed out on.
 
It might be worth getting a second opinion kittykat234. Are you seeing a pediatric GI or an adult GI? The best pediatric GI depts. are at Boston Children's, CHOP and Cincinnati Children's. Are you located anywhere near those hospitals?

For what it's worth, fecal calprotectin tells you if there's inflammation in the whole GI tract. It does tend to be a little higher if there's inflammation in the colon vs. small bowel, but by higer, I mean in the thousands vs. the hundred.

<15 really means there is no inflammation at all. False negatives are possible but very rare. It's still worth getting a pillcam, but I wouldn't get too stuck on it being IBD. It could be any number of other things.

Also, your hemoglobin fluctuations wouldn't be considered significant - between 11.1-11.9 could be within lab error. I would not worry too much about that. However, 11 is still on the low side, but it would be considered mild anemia.

Some stool in the colon is possible during scopes. In fact, it's not uncommon! I wouldn't worry about that if your GI wasn't concerned.

Another thought - do you by any chance take NSAIDs regularly? Advil, Motrin, Aleve? They can cause bleeding.

Did they do an endoscopy AND a colonoscopy or just a colonoscopy?
 
You can also get a record review done at some hospitals - for example, I know Cincinnati Children's and Boston Children's do them. That way, they would review your scopes and all your other records but you wouldn't have to travel.
 
Thank you Maya - I unfortunately don't live near those hospitals, I see a pediatric GI at the Palo Alto Medical Foundation. My neighbor, who's also a doctor, did recommend an adult GI though, so I might consider switching if my current GI won't follow up with more testing. And I did have both an endoscopy and a colonoscopy back in September, the one I had this Tuesday was just a colonoscopy.

Today I started getting really thin, loose stools with dark blood in them. This scared me so much I started crying (I'm a wimp, I know) but my parents said it's just the hemorrhoids and it should get better. How much do I have to bleed for it to finally get better?? This whole thing is just super frustrating, and I'm honestly not sure what I can do at this point.
 
And I don't take NSAIDS or anything else that will make me bleed. My last blood tests did show prolonged blood clotting, and my GI put me on vitamin K. I have read online that low vitamin K can cause GI bleeding, but I've been taking vitamin K tablets for a while now and the bleeding hasn't seemed to stop.
 
Dark blood tends to mean blood from high up - your stomach or your small bowel. Typically blood from your rectum is bright red.

I wonder if you need another endoscopy to take a look at your stomach. And a pillcam, which would also show ulcerations in your small bowel.

For someone your age, a pediatric GI is recommended. Kids and teenagers tend to have more aggressive IBD, so if you do have it, you should be treated by a pediatric GI. That said, if you absolutely can't find a good pediatric GI, then I'd see an adult one.

Kids also have different issues from adults - for example, you may still be gaining weight and growing. Your brain is still developing. You need different nutrients from adults.

Are you near Stanford? They have a good children's hospital. There is also one in San Francisco. I'm going to tag crohnsinct because she may have a doctor recommendation for you.

My daughter was diagnosed right around your age - at 16. Seeing blood is always scary, but try not to panic.

I would tell your parents that you're scared and you don't think it's just hemorrhoids. Tell them you want to see another doctor.
 
I actually got my colonoscopy done at Stanford. I do have a follow up with the GI, but at this point my parents have kind of given up with me. They seem to have the idea that now I'm just making excuses to avoid school, essentially I'm pretending to act sick. I don't know what else to tell them honestly. They are not going to get me another doctor. I'm just really upset that they seem to think that making them this stuff up. I've told them I'm scared but they just said that I should be relieved that the colonoscopy didn't show anything bad. I also asked them what if the bleeding never stops and they simply said that it will once the hemorrhoid heals. I also asked them about the pillcam and my dad just laughed and reminded me that we're not getting any more tests. This honestly scares me because if it turns out that I do have something in the small intestine then I need to know what is happening.

Do you mind me asking what symptoms your daughter had? Did she also get blood in the stool?
 
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I thought hemmeroids gave you bright red blood, not dark blood. Dark means it's happening further up, right?

Edited to add: you guys are too quick for me :)
 
Kittykat - any chance the blood is from the iron pills? Dark stools are a normal side effect of iron pills bc so much of it is left unabaorbed. My best advice (since you can't get more help from your GI and parents atm) is to work really hard to treat your low iron levels (and anemia) because if you aren't responding like you should be then they will again look at underlying causes. Maybe someone else will have better advice about something more direct but that's the best I can think of :)
 
Do you mind me asking what symptoms your daughter had? Did she also get blood in the stool?
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My daughter did not have blood in her stool at diagnosis - just abdominal pain, constipation, night sweats and mouth sores. The year before she was diagnosed, however, she became anemic. Her hemoglobin dropped to 9.0 and her Ferritin dropped to 3. She eventually needed iron infusions to get her levels up.

I think Dahlia has good advice - keep up with taking your iron, and if you don't respond if you, they will have to look at causes again.

Definitely tell your parents if you have any concerning symptoms - an increase in the amount of bleeding, severe abdominal pain, diarrhea, unusual fatigue, dizziness etc.
 
Maya - oh trust me, I did tell them. They took me to one of our family friend's house because she happens to be a doctor as well. All she said was that hemorrhoids can bleed and can cause dark blood and anemia. She told me I should take a suppository to reduce the swelling in the hemorrhoid. When I told her I don't think it's the hemorrhoid that's causing all the bleeding, she told me I'm overthinking this and I've had all this testing done so the hemorrhoid is the only thing that can cause the bleeding.
I personally don't think I'm overthinking this whole thing. I'm just worried that nothing seems to be helping the bleeding and I feel as if there's something else going on. Maybe I'm overreacting idk :/
 
KittyKat- I'm sorry things are so stressful. You might want to ask your normal doctor how much iron you should take. I've always been told to take iron in addition to the amount in my multivitamin. The one my daughter uses is the Zahler brand of Iron Bisglycinate. It costs about 10 bucks for 100 capsules on amazon. Liquid iron supplements are good, too. Just make sure you find out how much you should be taking and when you should come back to recheck etc. :)
 
When I told her I don't think it's the hemorrhoid that's causing all the bleeding, she told me I'm overthinking this and I've had all this testing done so the hemorrhoid is the only thing that can cause the bleeding.
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That isn't true - you could have something in the small bowel that is causing bleeding. It does seem unlikely to be IBD with an FC that low but it should still be investigated.

Keeping a symptom journal might help. Track the number of BMs you have a day, if there is blood and how much blood, and other symptoms (pain, diarrhea, nausea etc.).

Then your parents can look at the record and see that this is really bothering you and you're not just trying to get out of school.

Try not to obsess about it though - that will just make you more worried and anxious. I know it's scary and it must be so frustrating that no one is listening. But your hemoglobin isn't too low and you are being monitored, so you will be ok.

When do you turn 18?

Good luck!
 
I also wanted to add - you should follow the doctor's treatment plan. Suppositories (steroid ones) can be very effective for hemorrhoids/rectal bleeding. They stopped my daughter's bleeding in 3 days! It's worth trying, just in case.
 
Maya - I have been and will continue to follow the plan. You said it's unlikely to be IBD, but what else do you think could it be then?

I turn 18 next March
 
I honestly don't know. It could be IBD, but it would be rare to have such a low FC. But it can certainly happen.

I assume infections have been ruled out?
 
Maya - what kind of infections? I have taken a stool test for parasites, which came back negative. I don't know if I have been tested for any bacterial infection.
 
E.coli, campylobacter, shigella, CDiff - all of those cause diarrhea and can also cause bleeding. Usually it's one of the first things a doctor would test for.

Here's a list of tests that can be done when a patient has diarrhea. Some of them overlap with tests that would be done if there is bleeding.

https://labtestsonline.org/understanding/conditions/diarrhea/start/2

Have you been tested for Celiac?
 
I have done a stool culture and ova and parasite test. I have been tested for celiac both by biopsy and a blood test, both which were negative.
 
Maya it's an 8f tube so not too bad really. On Friday the tube became too painful and the nausea too much and I had a complete meltdown and made them take the tube out...
Had a good sleep Friday night and agreed to try again yestersay. The tube was placed better and isn't as sore, still the obvious discomfort but I'm getting pain relief now too which helps. It's still making me gag a lot but it's getting easier. Hoping within a couple of days it will be barely noticeable!
Feed didn't go too badly but I do have some reflux and stomach pain, nausea is being controlled with meds for now but I only had 35ml an hour yesterday and going up to 45ml an hour today.
So better than it was but still a bit of a struggle! Hoping on Monday ward round I will get a bit more information about the gastric emptying study results :)
 
sarahfh said:
Maya it's an 8f tube so not too bad really. On Friday the tube became too painful and the nausea too much and I had a complete meltdown and made them take the tube out...
Had a good sleep Friday night and agreed to try again yestersay. The tube was placed better and isn't as sore, still the obvious discomfort but I'm getting pain relief now too which helps. It's still making me gag a lot but it's getting easier. Hoping within a couple of days it will be barely noticeable!
Feed didn't go too badly but I do have some reflux and stomach pain, nausea is being controlled with meds for now but I only had 35ml an hour yesterday and going up to 45ml an hour today.
So better than it was but still a bit of a struggle! Hoping on Monday ward round I will get a bit more information about the gastric emptying study results :)
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Hoping the best
 
Sarah:

That all sounds really tough. Have they thought about switching to a nj tube (I think it's just longer) since you do have gastroparesis? I'm glad it's a bit better on the second try, and I really hope the pain and nausea subside.
 
Yes, my daughter needed an NJ tube (she would throw up NG feeds). It's kind of a pain because it needs to be placed by interventional radiology.

For kids and teens they do it with light sedation because it takes a quite a bit of maneuvering to get it to the jejunum.

It did work very well for her though - for comparison, for NG tube feeds she could not tolerate more than 25 mL/hr. At that rate, she would never have gotten enough calories to gain weight.

With the NJ tube, she went all the way up to 100 mL/hr and was able to get enough calories without being nauseous.

My daughter also had an 8 Fr tube when she had an NJ tube (it's the smallest size NJ tubes come in). She did get used to it, so hang in there.
 
Haven't posted for a while as not much has been happening

Well tomorrow I am due for a pelvic ultrasound to check there is nothing else going on that is causing my pain and then on 5th April I have an appointment with a different hospital for a second opinion

Been doing some reading so that I can be prepared for my appointment in April and found out that a aphthoid ulcer is the earliest sign of Crohns disease so going to bring this up with the new doctor as my previous consultant brushed it off and said it was normal xxx fingers crossed I get some real answers other that it IBS
 
Sarah, just an idea for you now that you know you have gastroparesis - I know a girl who has really severe gastroparesis (I suspect yours is severe too), and she got some sort of implant which stimulates the stomach. She said it helps somewhat - she's still considered permanently disabled, but she said it helps her feel somewhat better than she was feeling. I googled to find out more about the implant and came up with this:
http://www.cpmc.org/about/e-health/11-05 ges.html
I think it's a relatively new type of technology, or at least I hadn't heard of it until my acquaintance told me about hers.

Blu, good luck tomorrow! I hope you can get some proper answers very soon.
 
A gastric stimulator is what Cat is talking about. We have not discussed it for my daughter, but they are less likely to use it for pediatric patients. We did see a motility specialist though, an adult GI, and he was more inclined to put in a permanent feeding tube for her (at the time, she had an NJ tube).

I do know of one kiddo who was in the pediatric trials for the stimulator and has done REALLY well with it. She was vomiting many times a day from very severe Gastroparesis, and it really changed her life.

For my daughter, Domperidone helps a lot. sarahfh - Domperidone is easily available in the UK (we have to get it from Canada) and she doesn't have any side effects from it. Other options are Erythromycin (worked well for a while), Reglan (we were too scared of the side effects) and Cisapride (but that's hard to get in the US, not sure about other countries).

Let us know how you're doing, when you can.
 
I have a gastric pacemaker for gastroparesis. It has helped reduce vomiting from in the 20's down to 3-5 times a day, though I do still have bad days. It is worth asking about if you have lots of vomiting but it doesn't help with gastric emptying...just interrupts the vomit nerve impulses.

It is worth having the temporary pacer to see if it works before having the permanent implant. But getting funding in the nHS is VERY difficult/almost impossible.
 
Question: Allergy testing? Anyone had any luck/done it? I am in a bit of shock, but the allergy/immunology referral that my GP put in actually went through, I have an appointment tomorrow, and they have me scheduled for 1.5 hours, to include allergy testing. I have no idea what I'm in for!
 
Wildmtnhoney said:
Question: Allergy testing? Anyone had any luck/done it? I am in a bit of shock, but the allergy/immunology referral that my GP put in actually went through, I have an appointment tomorrow, and they have me scheduled for 1.5 hours, to include allergy testing. I have no idea what I'm in for!
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Wish you the best
 
Wildmtn, I have no experience with that so I have no idea. I hope it's a relatively easy test to go through. Keep us posted! And I hope it gets you some more answers!
 
Wildmtnhoney - I have had allergy testing and it wasn't bad. Mine was more focused on environmental allergies which means you pop your forearm out, get drops of allergens placed on you, and then get pricked in each spot. It can get pretty itchy but it doesn't last too long and they give you antihistamine cream when they finish. The food allergy testing I had done was just a blood draw. I hope the allergist is helpful!

Edited to add - just looked it up and some do a skin prick test for food allergies, too.
 
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Thanks all! It seems I am getting skin-prick food allergy testing, which is why it'll take so long.

In looking up food allergy symptoms, I had NO idea what some of them were!!

Redness around the eyes - I just have dry eyes and rub them too much, right? Then, itchy ear canals! I always have itchy ear canals. Like, most days, at least. But I just thought that was "normal" -- never knew it was "abnormal" for sure (ummm, most people don't get itchy there on a daily basis?). Nausea - check. Diarrhea - check. Stomach pain - double check....then some I don't think I have...but then "uterine contractions" -- I had unexplained contractions throughout ALL THREE pregnancies, to the point that I had had to have meds to control them, but was never truly "in labor" - just contracted. A lot. And I have cramps, randomly, all month. I blame the mid-month pain on ovulation, but at other times, I just get annoyed with my girly bits, since I've never had signs of fibroids or any other reason for these pains.

Tomorrow could be enlightening.

Or I could find out that all these symptoms are unrelated!! LOL
 
Blu's Tale said:
Haven't posted for a while as not much has been happening

Well tomorrow I am due for a pelvic ultrasound to check there is nothing else going on that is causing my pain and then on 5th April I have an appointment with a different hospital for a second opinion

Been doing some reading so that I can be prepared for my appointment in April and found out that a aphthoid ulcer is the earliest sign of Crohns disease so going to bring this up with the new doctor as my previous consultant brushed it off and said it was normal xxx fingers crossed I get some real answers other that it IBS
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Update: had my pelvic ultrasound today nothing showed up to account for the pain which is good so now just got to wait for my other appointment in 2 weeks with the new gastro hospital hoping they are better than my last
 
Thank you everyone for the info it's been great!
Ward round was yesterday but I've not been able to concentrate enough to read and post!
Summary is: my emptying was almost double what it should be, I'm starting erythromycin (domperidone and metoclopramide have been tried but I had dangerous side effects on both) so I have my first one tonight! Tube feeds are giving me bowel trouble (diarrhoea) but we are persevering in the hope my body just needs a bit of extra adjustment time. I'm on 50ml/hr feed for 20 hours and can eat little bits if I want to. I've had antisickness changed to ordansetron which has helped but I'm still getting some nausea, pain and reflux from just the feed and more when I do eat bits.
No long term plan yet, we are seeing how the erythromycin goes then will work on a plan! But I'm not expecting to be heading home until the weekend at the very earliest.
Because I don't vomit I don't think they will bother with the NJ but we will see!
 
Wildmtnhoney - I wouldn't have thought those were food allergy symptoms either. That would be great if it turned out that you can avoid certain foods and it would make you feel better. I'm sure food allergies are a hassle, but it's still better than feeling bad all the time and not knowing why or having a solution.
 
Sarah, thanks for the update, and I'm glad to hear that it sounds like you're making some progress. I hope the new med helps! Ondansetron is the generic version of Zofran, that's what I take for nausea and it really helps me a good deal (I honestly don't know how I'd get along without it, it's the one med that I absolutely make sure to take with me everywhere I go). It's pretty strong and can cause constipation if you overdo it, but I'm sure while you're in the hospital they're keeping an eye on how much they're giving you so as to avoid that. And if you're having diarrhea anyway, then the Ondansetron might help slow things down a little bit.

Wildmtn, I didn't know food allergies could cause those types of symptoms either! Hopefully the allergy testing will be enlightening so that you can get answers and also get relief from at least some of those symptoms.
 
Thank you everyone for the info it's been great!
Ward round was yesterday but I've not been able to concentrate enough to read and post!
Summary is: my emptying was almost double what it should be, I'm starting erythromycin (domperidone and metoclopramide have been tried but I had dangerous side effects on both) so I have my first one tonight! Tube feeds are giving me bowel trouble (diarrhoea) but we are persevering in the hope my body just needs a bit of extra adjustment time. I'm on 50ml/hr feed for 20 hours and can eat little bits if I want to. I've had antisickness changed to ordansetron which has helped but I'm still getting some nausea, pain and reflux from just the feed and more when I do eat bits.
No long term plan yet, we are seeing how the erythromycin goes then will work on a plan! But I'm not expecting to be heading home until the weekend at the very earliest.
Because I don't vomit I don't think they will bother with the NJ but we will see!
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sarahfh, my kiddo has been on Erythromycin too. It worked well for her for a while. We found that the liquid form worked much better than the pills and in the US, for Gastroparesis, primarily the liquid form is used.

My daughter also had trouble with diarrhea with tube feeds at first. We waited it out, thinking it would go away, but it didn't. Eventually we switched formulas and that worked for her. I would wait, but don't wait a whole month, like we did!

An NJ tube would help with nausea and fullness - here it's not used necessarily for vomiting. In fact, if you vomit a lot, an NJ wouldn't work because it wouldn't stay in place. I know the system is different there, but if you are very nauseous and can't deal with it on an NG, I would really push for an NJ.
 
Hey Wildmtn, I hope today went okay? You might still be doing the testing, it's just past 3 PM here so I think it's only 1 or 2 PM where you are? I hope all goes well today.

Sarah, I hope you're doing okay today too. How's the new med going?

I hope everybody else is doing okay too. I'm meh - a bunch of people at work have been coughing, so of course now I've caught a cold too. Yuck. I'm stuffy and fatigued and feeling a bit bleh. But certainly it could be a lot worse so I can't really complain. I hope you guys are all feeling as well as can be.
 
Thanks for asking Cat!

So I went in for allergy testing...stayed for a CT scan to see if I have a kidney stone :( (results pending this morning, it wasn't an ED visit)

First, the allergy testing -- I may only have tree nut allergies! That was the ONLY thing the skin prick testing showed - amazing! So, I'm on a strict, 6 week elimination of all things tree nuts, to see if it helps - she isn't super hopeful, as I don't eat tree nuts every single day, but it's worth a try. If it doesn't help symptoms in 6 weeks, I'm free to add them back to my diet.

However, the allergist didn't stop there. Going over *everything* in my chart (she was super amazing!) she decided that it was possible I may have Mast Cell Activation Syndrome, so she ordered a blood test for Tryptase (have to go back and get that drawn, the possible kidney stone interrupted things). If that comes back "off" we'll talk about what that means (and I'll be reading about MCAS on the 'net I'm sure!).

Finally, about the kidney stuff -- around midnight Wednesday I woke up thinking I was sleeping weird because my was sore on the right side. I also felt that I had to pee. When I went to the bathroom, I couldn't go. So back to bed...but 10 minutes later, the urge to pee was back, back to the toilet, and just a dribble. Back to bed, only to be woken up shortly *again* thinking I really had to go this time...rinse repeat for an hour, until I finally gave up and stayed up. Around 2am I decided that maybe if I started a lot of water, I would be able to MAKE myself go, and that if this was the beginning of a UTI, that was the best idea anyway, so that's what I started doing. Still just dribbles, with the near constant urge to go, and waves of back pain, until nearly 6am!! Finally, at that time, I went a full stream, and went back to bed, sleeping a bit restlessly until 9am (dh stayed home from work to get the kids to school for me, sweet man <3 ). When I got up, I called my GP, and begged for a same day appointment, but made it clear I didn't want to cancel my allergy appointment - lucky everything is located in the same hospital offices, so it worked out.

When I got the hospital, the first thing I did was buy cranberry juice to drink during the allergy test. After allergy appointment, went straight to the Internal Medicine offices and gave a urine sample. Amazing to me and dr, it came back perfectly normal. But when he whacked (lightly) on my back on the right side, man did it hurt! So he sent off an urgent request for a kidney CT, told me what to watch for in case it ends up being shingles instead (oh I hope not!), what to look out for in terms of infection if it is a stone, etc. Then sent me down to radiology to see if they could fit me in ASAP.

Again, things were in my favor! They have extended hours (by this time it was near 5pm) and they were able to schedule me for a "same-day" evening CT! So I hung out in the cafeteria for a bit, then went and got scanned before heading home. -- As a side-note - they make you lie on your stomach for the stone scan, and OMG the pain in my back while laying on my belly! I never expected that! -- Then told me the Dr will have my results this morning and sent me on my way home (after being at the hospital for half the day, I was thrilled to have dh finally pick me up!!).

Last night I took pain meds (that I have for my joint pain, Dr told me to use them for the back pain) and was able to sleep! But now I'm back with the urge to pee after just going again. Ugh! I really hope it's nothing.

So that's my super long update!
 
Wildmtnhoney - Oh yikes! I'm sorry you are hurting so much. Oddly enough, I have a friend who had similar symptoms and thought she had a UTI and it turned out it was her back. Pretty serious, too. It's so weird how symptoms like that can mean so many different things. Oh, I've had shingles and getting the antivirals quickly helps a lot. It hurt, but it wasn't excruciating. It sounds like your allergist was really great. How nice!
 
Wildmtnhoney said:
Thanks for asking Cat!

So I went in for allergy testing...stayed for a CT scan to see if I have a kidney stone :( (results pending this morning, it wasn't an ED visit)

First, the allergy testing -- I may only have tree nut allergies! That was the ONLY thing the skin prick testing showed - amazing! So, I'm on a strict, 6 week elimination of all things tree nuts, to see if it helps - she isn't super hopeful, as I don't eat tree nuts every single day, but it's worth a try. If it doesn't help symptoms in 6 weeks, I'm free to add them back to my diet.

However, the allergist didn't stop there. Going over *everything* in my chart (she was super amazing!) she decided that it was possible I may have Mast Cell Activation Syndrome, so she ordered a blood test for Tryptase (have to go back and get that drawn, the possible kidney stone interrupted things). If that comes back "off" we'll talk about what that means (and I'll be reading about MCAS on the 'net I'm sure!).

Finally, about the kidney stuff -- around midnight Wednesday I woke up thinking I was sleeping weird because my was sore on the right side. I also felt that I had to pee. When I went to the bathroom, I couldn't go. So back to bed...but 10 minutes later, the urge to pee was back, back to the toilet, and just a dribble. Back to bed, only to be woken up shortly *again* thinking I really had to go this time...rinse repeat for an hour, until I finally gave up and stayed up. Around 2am I decided that maybe if I started a lot of water, I would be able to MAKE myself go, and that if this was the beginning of a UTI, that was the best idea anyway, so that's what I started doing. Still just dribbles, with the near constant urge to go, and waves of back pain, until nearly 6am!! Finally, at that time, I went a full stream, and went back to bed, sleeping a bit restlessly until 9am (dh stayed home from work to get the kids to school for me, sweet man <3 ). When I got up, I called my GP, and begged for a same day appointment, but made it clear I didn't want to cancel my allergy appointment - lucky everything is located in the same hospital offices, so it worked out.

When I got the hospital, the first thing I did was buy cranberry juice to drink during the allergy test. After allergy appointment, went straight to the Internal Medicine offices and gave a urine sample. Amazing to me and dr, it came back perfectly normal. But when he whacked (lightly) on my back on the right side, man did it hurt! So he sent off an urgent request for a kidney CT, told me what to watch for in case it ends up being shingles instead (oh I hope not!), what to look out for in terms of infection if it is a stone, etc. Then sent me down to radiology to see if they could fit me in ASAP.

Again, things were in my favor! They have extended hours (by this time it was near 5pm) and they were able to schedule me for a "same-day" evening CT! So I hung out in the cafeteria for a bit, then went and got scanned before heading home. -- As a side-note - they make you lie on your stomach for the stone scan, and OMG the pain in my back while laying on my belly! I never expected that! -- Then told me the Dr will have my results this morning and sent me on my way home (after being at the hospital for half the day, I was thrilled to have dh finally pick me up!!).

Last night I took pain meds (that I have for my joint pain, Dr told me to use them for the back pain) and was able to sleep! But now I'm back with the urge to pee after just going again. Ugh! I really hope it's nothing.

So that's my super long update!
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Hope you get some relief soon.
 
Wildmtnhoney- I hope they figure out what is going on, soon. When is your followup?

I'm feeling pretty crummy at the moment - caught the flu on top of everything else. All the kids got it too. All the fevers have broken and I know I'm getting better, but I am still really tired and not feeling well. Still no appetite and losing weight from the GI issues and can only eat safe food. Having a pity party here :). I know I will feel a lot better once I get over the flu.
 
Dahlia, I'm similar - I didn't catch the flu, just a cold, but catching a cold/virus always affects my guts. It feels like, my immune system turns on to fight the cold/virus, and while it's on, it also attacks my guts because that's just what it does now. So I always get an increase in gut symptoms whenever I catch a cold. I've been crocheting all morning with my heating pad on my belly, trying to get my guts to calm down. Ugh. I hope you and your family feel better soon! And I am attending your pity party in spirit (I brought my own party hat and everything as I am an experienced pity partier myself). Hang in there!

Wildmtn, if it's not a stone, did they have an explanation as to why you're having these symptoms? Hopefully they can provide some answers at your follow-up. I know sometimes gut and bladder issues can go hand in hand - I was a bed-wetter up until about age 12, and now new research shows that it's almost always constipation that's causing childhood bed wetting. Apparently the colon is too full of stool (even if the kid is going regularly, and the kid may not realize they're constipated) and that pushes on the bladder and forces bed wetting episodes. So I guess I've had gut issues since I was a kid, if that's the case! And I have had recurrent UTIs since college, and of course presumed IBD now. I don't know for sure if my gut and bladder issues are connected, but I'd wager they are. So maybe there's a connection there for you as well. Just a thought anyway. Good luck at the follow-up, let us know what they say.
 
Do any of you have problems with your teeth? I haven't had a cavity since I was a kid and I had baby teeth. I think I take pretty good care of my teeth.....I brush, floss, and use mouthwash twice a day. I'm one of those strange people who actually enjoy flossing. But now I have a cavity! Actually cavities, I'm pretty sure. I haven't been to the dentist yet, because I have to wait for my dental insurance to get reinstated, which won't be until May, unfortunately. My cavities are along my gum line. I'm just wondering if my new teeth issues are related to everything else that's going on in my body.....or does life just really hate me?! 🤔
 
akgirl, I've got a lot of sudden cavities, and actually needing to get crowns :( but it is mostly due to the months I went with untreated Sjogren's and super dry mouth - saliva prevents cavities, so my lack of it caused a really bad "outbreak" in cavities.
 
AKgirl - I didn't get my first cavity until I was 35. I figured I just wouldn't get them as I never had before but I did. It wasn't bad but did need fixing. If you have to wait to go to the dentist, you might want to try to fight it off a bit. My hygienist once told me that when she could feel a cavity starting, she would start to use a flouride rinse like ACT. my kids dentist also had them use a strengthening calcium product called MI paste to reverse beginning cavities but I don't know if you can get it without a prescription. I think those only work if the cavity is making the enamel thin, but it's still only in the enamel. Sorry about your cavity and good luck.

Cat - Thanks for joining me in my pity party :). I'm sorry you have a cold and I hope you feel better soon.
 
Thank you everyone for the well wishes!
I'm home! :D

I was discharged with my NG tube today, I've been setting my own feed up for the last three days and I've finally got my feed changed to Vital 1.5kcal which is what I have as a supplement drink so known it agrees with me. It came as no surprise that the diarrhoea settled down within 48 hours!

I've been on the erythromycin for a few days now, I'm not really sure if it's helping or not yet if I'm perfectly honest, it is giving me reflux/nausea (very hard to describe) but all antibiotics do this to me. I suppose we will see.

There's not a long term plan yet but I know they are hoping to get me off tube feeds and eating enough orally sooner rather than later which makes me a little nervous if I'm perfectly honest. I'm worried that they will stop the tube feeds and I will just start to lose weight again. I guess time will tell!
 
Sarah - that's great that you are home safely and can do the feedings yourself. Being pushed to normal food does sound a bit nerve wracking - hopefully you can be on the feedings as long as you need to be.

I have my MRI this week. They are looking for bowel thickening. I don't know if that is from scar tissue or current inflammation, but if it is scar tissue I wouldn't expect to have that as I haven't been having weird GI symptoms for very long. I hope they aren't doing it too soon.

One thing that is nice is that they willl (I think) be able to see if there is anything weird going on with my appendix. I still don't have an appetite (7 weeks now) and it did look like a mild appendecitis at first, and appetite loss goes along with that. They will also just get a nice look at everything and maybe that will help. I think it is looking less like Crohn's as time goes on, but I still don't know what is going on and I really appreciate all the support here!
 
Dahlia said:
Sarah - that's great that you are home safely and can do the feedings yourself. Being pushed to normal food does sound a bit nerve wracking - hopefully you can be on the feedings as long as you need to be.

I have my MRI this week. They are looking for bowel thickening. I don't know if that is from scar tissue or current inflammation, but if it is scar tissue I wouldn't expect to have that as I haven't been having weird GI symptoms for very long. I hope they aren't doing it too soon.

One thing that is nice is that they willl (I think) be able to see if there is anything weird going on with my appendix. I still don't have an appetite (7 weeks now) and it did look like a mild appendecitis at first, and appetite loss goes along with that. They will also just get a nice look at everything and maybe that will help. I think it is looking less like Crohn's as time goes on, but I still don't know what is going on and I really appreciate all the support here!
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Hope you get answers soon.
 
Hey everyone, just wanted to give you guys a little update on my situation.

So I got the biopsy report back from my colonoscopy and it said all samples taken from the colon and end of the small intestine (terminal ileum, cecum, ascending colon, transverse colon, descending colon, sigmoid and rectum) were normal. I'm glad that no disease was seen microscopically, but now I'm more confused than ever. If there was crohn's in the small intestine, wouldn't they have seen it on the biopsy? I'm wondering this because I do have a follow up with my GI next Tuesday and I was considering asking about an MRE, but now I'm not totally sure she'll agree based off all the negative reports.

As for the current symptoms, I have been having some nausea and vomiting. This is pretty unusual for me, as usually I experience stomach pain and discomfort, but never actually got physically sick. I honestly don't know if this is connected to my existing stomach issues or if its just a bug that'll go away in a few days. I really hope it's the latter because I don't want to have to deal with another problem along with everything else :/
 
I had that happen to me too, kittykat. I was getting a lot of general diarrhea that wasn't a response to food (as mine normally is) and it was weird and confusing... and then I found out my husband had it too and it went away a few days later. It was a relief that it wasn't the new normal for me, just a bug :)
 
I had my MRI yesterday. The good news was that the barium drink was clear, not the nasty liquid chalk stuff. It ended up being tough in other ways, but the drink was a great surprise.

The results were negative so I think they are going to go with the post infectious IBS diagnosis, though I won't know until my appointment in a few weeks. I am going to ask about gastroparesis. I looked it up and it doesn't explain the weird bowel issues, but it would explain my lack of appetite, nausea, weight loss, and complete inability to eat anything but small portions. I'm down 19 lbs in 7.5 weeks so *something* is happening darn it. I think they are probably right that my bowel issues are IBS, not Crohn's, but all the issues eating don't seem like IBS to me.

I won't see them for a few weeks so for now I will just keep doing what I am doing, eating small meals and staying on a low residue diet. If anyone has any advice or good resources, please share them!
 
Dahlia, gastroparesis is what I have just been diagnosed with during my hospital admission. I had the gastric emptying study done a few days before as an outpatient and got my results while there. It's definitely worth bringing up with your doctor, there are a number of medications they can try to help your motility and they can prescribe things like Ensure drinks which are liquid nutrition with a load of vitamins, minerals and calories in. My dietician at the hospital recommended low fibre, low fat, little and often foods as they are easier to digest, as well as things like soup, mashed potato etc that are soft and gentle on the system. Also Maya has tons of experience with gastroparesis from her daughter so she might be able to offer more insight than I can given my newly diagnosed status!

Maya how long before your daughter noticed a difference on the erythromycin? I'm on 250mg twice a day and approaching the two week mark with no noticeable difference if I'm honest. It's a little disheartening. I'm struggling a bit with tube feeds over the last couple of days which again is disheartening, if it keeps up I think I will ask about an NJ even though I don't vomit. My follow up with my consultant isn't until June though so it might be a long road to progress!
 
Going for my follow up tomorrow morning. I'm going to try to push for a small bowel study. I just hope the GI doesn't try to convince me that it's "just IBS". The problem with me is that I tend to agree with the doctors when I'm with them and just take whatever they tell me, and then I leave the room feeling like I just wasted my time. I also don't know how I'm going to convince her that the bleeding isn't just from hemorrhoids, because that seems to be my "diagnosis" atm. I need to work on being consistent, I'm not leaving the office until I get a referral for a small bowel check.
Wish me luck everyone!
 
Hi kittykat,

Best of luck to you. Keep us posted and remember to make a list of things that you need to discuss to take with you. Don't leave until you go over the whole list with the doctor. You have to stand your ground and anticipate some of the questions that may be asked of you and have a firm response for them ready. Try to think of some things that may be asked, like why do you think you need this particular test? etc. Then think of an educated response that would justify you requiring such a test. Hope this helps.

Give me a shout on here if you need any help,

cmack
 
kittykat234 said:
Going for my follow up tomorrow morning. I'm going to try to push for a small bowel study. I just hope the GI doesn't try to convince me that it's "just IBS". The problem with me is that I tend to agree with the doctors when I'm with them and just take whatever they tell me, and then I leave the room feeling like I just wasted my time. I also don't know how I'm going to convince her that the bleeding isn't just from hemorrhoids, because that seems to be my "diagnosis" atm. I need to work on being consistent, I'm not leaving the office until I get a referral for a small bowel check.
Wish me luck everyone!
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You know your body better than anyone else. Keep pushing for answers and get the small bowel study. Sending support.
 
Maya how long before your daughter noticed a difference on the erythromycin? I'm on 250mg twice a day and approaching the two week mark with no noticeable difference if I'm honest. It's a little disheartening. I'm struggling a bit with tube feeds over the last couple of days which again is disheartening, if it keeps up I think I will ask about an NJ even though I don't vomit. My follow up with my consultant isn't until June though so it might be a long road to progress!
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She got better almost immediately with it. It helped her eat a little more (but like you, she definitely needed the tube anyway). She did also have increased reflux with it. So we only gave it once a day - before dinner, which is her big meal. Before breakfast and lunch, she had Bethanechol, which is used off-label for GP sometimes.

Are you using tablets or the liquid? We tried both and the tablets did nothing. The liquid is meant to be used for Gastroparesis.

An NJ tube made a huge difference for her. She didn't vomit a lot, but she did vomit whenever we tried to do NG tube feeds, so the NJ made a lot of sense and REALLY helped.

I would push for that, definitely.

She also did much better on Domperidone vs. Erthromycin. They allowed her to try Domperidone even though she developed an arrhythmia in the hospital, when she had Refeeding syndrome. She is just monitored VERY carefully by a cardiologist - with EKG's and echocardiograms several times a year.
 
Sending well wishes first thing to everyone!! KittyKat, sending you good thoughts this morning!!

Sorry I've been away awhile again! So my follow up was that I seem to continue to be an enigma. Joy. No kidney stone for sure (yay!). But continuing pain (boo!) with "normal" test results.

Severe enough pain, though that I found myself BACK in the ED this past weekend, on morphine this time. Test results? A cyst on my right ovary (not enough to cause the pain). Everything else was fine, except I had a ketone level of 80 in my urine, and my TCO2 was a bit low (so I might have been heading toward an acidotic state, which can also cause belly pain). Now, I hadn't eaten in over 18 hours, due to nausea from pain, but that isn't the first time I've been in the ED and haven't eaten in that long, and they always test my urine. Never before have I had more than "trace" ketones. However, this time, my blood glucose was also one of the LOWEST readings I've had, at 79mg/dL [I think that's about 4.3 or 4.4mmol/L -ish for European friends] (I'm normally in the mid 80s to low 90s when fasting). So strange! They just told me to follow up with GP. Which I'm doing today, because I slept through most of yesterday (whoops). However, I did buy ketostix at the pharmacy, because I was concerned (I have a type 1 diabetic aunt! I don't want to get caught off guard, although with low blood sugar, I have no idea what ketones would mean other than "starvation") and I have been testing myself for ketones. I drank a TON of water, and ate some simple carbs (rice), per instructions, and saw the sticks go from dark to light, and since then haven't seen more than "small" now that I'm home and trying to eat occasionally. I also grabbed a cheap glucometer, but the strips are pricy, so I'm only checking a couple times a day, 2 hours after my "big" meals. No high readings yet (knock on wood!).

On a different note -- my belly, that has been SO big for SO long, has suddenly SHRUNK! Like, overnight! And I lost weight after being given fluids at the ED!! That NEVER happens to me -- I'm on florinef, which is "salt sparing," so getting a saline drip is almost always guaranteed to make me gain 1-2 pounds in water weight for a day. But this weekend, the morning after my ED trip (yes, I'm one of those who steps on the scale every morning, I nearly do it in my sleep...wake up, pee, step on scale...) my weight was a few ounces *less* than it had been the morning before. I think I stared at the number for a few moments waiting for it to change. However, even before that, when I had gone to bed that night, I had said to dh, "look! I can see my ribs! and there is a dent before my pooch!" -- I have had 3 kids, 2 by c-section, and have a lower belly "pooch" -- but between my lower ribs and that pooch? Now when I lay flat, instead of being "puffed up" like it has been for months and months, or even just level with the pooch, that part of tummy *sinks in*! It is so weird! And when I look in the mirror? My waist is defined! All my life I have been somewhere between an hourglass or pear shape, but for a year or more now, I've just been fat. Until the past 3 days. Since Sunday, I'm still obese, but with defined curves. To top it all off, I weigh another full pound less again today than yesterday (don't worry, that's a little bitty fraction of my total body weight, I can handle it for a day).

Now, I have been *slowly* losing weight since September. Like, two-three pounds a month slow. By trying to walk more, and eating a bit less sugar (putting stevia in my coffee, drinking sparkling water instead of soda when out, etc) but not trying too hard. But to drop a pound in a day? And lose my belly like that? Oh! And I know my belly was there the day before, because I had asked dh to bring me the heating pad before we decided to head to the ED, and before I put the heating pad on, he was laying in bed next to me, and I started to cry, because my belly was taller than his with us both laying on our backs, and he hugged me, but then said (in not so smart guy way) "yeah, but I think it's getting smaller lately!" :mad: (I can laugh about that comment now at least!)

One other note -- I am doing one thing different since the 23rd (so today would be day 5) -- my old B complex vitamin had Biotin in it, but I accidentally picked up a different one, that didn't. Noticed that when I got it home, but had already opened the new one, so I decided to just try a Hair, Skin and Nails vitamin w/Biotin. Been on that since the 23rd, and it does have more biotin than my old B Complex, and a few other minerals (but not too much of them, and they are also found in my multivitamin). I did some quick research online, and a few people mentioned weight loss w/really high doses of biotin, and I'm only taking 2500mcg once a day, but that is up from 100mcg once a day. Just thought I'd throw that in this post, in case it is a factor.
 
Ugh I'm so disappointed. I just had my follow up with the GI and it went nowhere. I told her about the blood and how I don't think it's just a hemorrhoid, but she said that hemorrhoids can cause a lot of bleeding even if it's small. She also said a hemorrhoid shouldn't cause anemia, but she just told me that my slight anemia is only caused by not taking enough iron. She said from a medical standpoint, the bleeding isn't too much of a worry. She put me on more fiber and will refer me to a colorectal surgeon to remove the (very tiny!) hemorrhoid. I even asked if there was a possibility of something happening in the small intestine, but she said that she doesn't think that a pillcam is necessary after the endoscopy I did 6 months ago and the Meckel scan. I asked about an MRI as well but she said that it's not necessary.
I'm SO frustrated and nearly cried. I really don't know what to do. The only thing I can think of doing is getting the hemorrhoid removed and then seeing if the bleeding stops. If it doesn't, then we will know for sure the bleeding isn't just coming from there. This just means more waiting though. I don't know guys, I'm fed up and scared and angry and I feel like I know what tests have to be done, everyone on here knows what tests need to be done, but the GI doctor herself doesn't know. Like what do I need to do?? Do I literally need to argue with her and force her to get the small bowel study? Being persistent didn't work in my case.
 
kittykat234 said:
Ugh I'm so disappointed. I just had my follow up with the GI and it went nowhere. I told her about the blood and how I don't think it's just a hemorrhoid, but she said that hemorrhoids can cause a lot of bleeding even if it's small. She also said a hemorrhoid shouldn't cause anemia, but she just told me that my slight anemia is only caused by not taking enough iron. She said from a medical standpoint, the bleeding isn't too much of a worry. She put me on more fiber and will refer me to a colorectal surgeon to remove the (very tiny!) hemorrhoid. I even asked if there was a possibility of something happening in the small intestine, but she said that she doesn't think that a pillcam is necessary after the endoscopy I did 6 months ago and the Meckel scan. I asked about an MRI as well but she said that it's not necessary.
I'm SO frustrated and nearly cried. I really don't know what to do. The only thing I can think of doing is getting the hemorrhoid removed and then seeing if the bleeding stops. If it doesn't, then we will know for sure the bleeding isn't just coming from there. This just means more waiting though. I don't know guys, I'm fed up and scared and angry and I feel like I know what tests have to be done, everyone on here knows what tests need to be done, but the GI doctor herself doesn't know. Like what do I need to do?? Do I literally need to argue with her and force her to get the small bowel study? Being persistent didn't work in my case.
Click to expand...
Maybe you need a second opinion.
 
Hi kittykat,

I agree with Ron. I think you need a second opinion, but really the referral is going to be with a specialist, so that is a good thing. That visit to the surgeon is actually going to result in a second opinion. Surgery for a small hemorrhoid seems a bit much, I could be wrong. I tend to think the surgery is more dangerous than the existing problem of a small hemorrhoid. All my hemorrhoids(several) with the exception of one have been internal and healed with no surgery. It is good that you got a referral to a colorectal surgeon, I think you should go to the consult with him/her. They will be a way more helpful to you. I doubt they would operate on something like that.

Just my thoughts.

All the best, keep in touch,

cmack
 
Thank you so much Ron and cmack, both of you have been incredibly helpful and understanding. I also don't see the reason for the colorectal surgeon, but I do think that if I consult with him/her they will agree that this hemorrhoid should not have to be removed by surgical means. I mean, just why is it so difficult for my doctors to see that this could be caused by something other than a hemorrhoid and shouldn't it be their job to make sure they're covering all bases? I just don't get it, even after I told her my concerns about the bleeding and the anemia.
 

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