Undiagnosed Club Support Group

Crohn's Disease Forum

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Maya, I tried the alternating doses thing by 1 mg before and it didn't work for me. I tried going from 6 mg, to 5, to 6, to 5, and by that 4th day I already felt horrible. It might work better at 0.5 mg doses, though, that's something to consider.

I don't think I have endometriosis. My understanding is that pain is the main symptom of that, and I usually either don't have pain or don't have bad pain. I've never had to take pain meds for my illness, but I get tons of other symptoms like weight loss, cramping, nausea, night sweats, tons of diarrhea (35 times in one day is my record, in the worst of my flare back in July/August I was easily going 20+ times per day). I do get some abdominal pain but it's always on a level I can deal with without meds. But endometriosis is something that a laprascopy could rule out, and if I can't get a diagnosis I can at least rule things out, right? We've already ruled out a bunch of things over the years, but there's no reason why I shouldn't add to the list of stuff I definitely don't have. I think a laprascopy could also check for adhesions, so in my mind that might be something worth racking up more debt to have. I'll have to do some reading and see if DBE can for sure do biopsies - then I just have to decide, which test do I push for more, DBE or laprascopy?

Cmack, I had something similar happen to me a few years ago - I went to an urgent care clinic for IV fluids as I was really dehydrated. They're not open 24/7, they close at I think 9 PM, and it was about 8:30 when I went in. They had the nerve to try to tell me that I should come in earlier next time because they wanted to get home. Gee, I'd like to go home too! It's not like I go to urgent care for fun! Ugh. Some doctors are just jerks, period.
 
Maya thank you, I'm excited and a little nervous and keep packing and unpacking my bag! I've never stayed in hospital overnight let alone for up to two weeks so that's a bit daunting. I will be sure to drop in with any questions!

I'm starting with an NG then depending on tolerance and my GES result it may be advanced to an NJ.

My GES is with a cottage pie ready meal, the letter was even specific enough to say which supermarket own brand it is which amused me a lot. I imagine there will be some water too. I had read about having ten minutes to eat which worries me slightly but I'm hoping eating faster will mean I can eat it all before my stomach realises I'm full.

I did actually buy one of the cottage pie the other week to do a "test run" so I did the four hour fast, ate the pie and didn't eat or drink anything else for four hours. It was hell. I was still nauseous, in pain and having mince reflux 12 hours later and had a sleepless night because of it. So that's both reassuring and a little daunting. It was quite a big portion for me and I did struggle with it, but I'm going to have to power through. I'm lucky so far I've not vomited from whatever is going on.

Test is 1.30pm (GMT) on Monday and I'm still waiting for admission date specifics but gastro consultant is aiming for Monday too. I'm just hoping they won't want to start feeds after the GES I really want to be able to wait until Tuesday. I guess time will tell.
 
Oh forgot to add, my letter says the GES will take approximately 2.5 hours but up to 8 which confused me a little as I thought it could only be diagnosed as delayed gastric emptying/gastroparesis if there was 10% or more left after 4 hours? I'm hoping that the 2.5 hours is like average for a normal person with no problems and they will just keep me there until the 4 hours to be honest. I guess I will find out Monday, I just don't want it to end up not being long enough and therefore effectively be a wasted test and nausea etc for no reason
 
I had to look up a cottage pie - never heard of that!! That is very interesting - in the US it's always scrambled eggs and toast or bread.

It will probably be a pretty miserable test, but hopefully it will give you some answers.

I don't know if you will have a say in what kind of NG tube they use, but here they use infant ones, even for big kids (teenagers, young adults). The size my daughter used was 6 Fr and it worked very well. She was 17 or 18 years old and about 88 or 90 lbs at the time.

The thicker the tube, the more uncomfortable it is. Her NJ tube was 8 Fr (since that's the smallest size they come in).

The first night was miserable for her - her nose and throat were very sore. But after that she did very well and the second night, she even inserted the tube herself. Within a week, she was used to it and very good at inserting it.

Will you be keeping it in all the time or inserting it every night? Here, teenagers tend to choose to insert it at night, do the feed overnight and go to school without it during the day. It's quite easy to insert - she could do it in less than 10 seconds once she got good at it.

Anyway, good luck!
 
Different places do the tests differently. Here, it's 4 hours. There is also a two hours mark - you're supposed to have a certain percentage emptied out of your stomach by that time. I don't know what the percentage is, since most places do the 4 hour test.
 
Maya142 said:
My kiddo is 20 and she has been on steroids so much that she has osteopenia. Interestingly, in the last two years since she has been on tube feeds and has gotten to a normal weight (from being severely underweight) her bone density has gotten a little bit better! But your bone density only increases till your mid-20s I believe.

My daughter tends to have 2 bad days when she tapers by 1 mg. BUT that is only when her disease is under good enough control - otherwise, like you, she just gets sicker and sicker.

I think you probably need a better maintenance med before you can taper. Unfortunately, it's hard to know when you'll be able to get on one :(.

Sometimes alternating doses also helps people - so 7.5 one day, 8 the next day. Then next week, 7.5 mg one day, 7.0 mg the next day.

It will take forever, but if it works, it's worth it.

I'm not sure about biopsies with a double balloon enteroscopy, but I would think so. My daughter had an enteroscopy - not a double balloon one, so it didn't go through her whole small bowel, but it did go further than a normal endoscopy. They were able to take biopsies with that scope, so I would think they would be able to with a double balloon enteroscopy.

I definitely understand about being sick of doctors and tests. I wish they could just fix you!! It shouldn't be so hard.

Have they ever considered endometriosis? I honestly don't know much about it, but it might be worth exploring.

Good luck!
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Maya 142, you mentioned a maintenance drug. I have asked my GI about Mtx. Today, the doctor's office said they were afraid of me getting an infection with this drug. Then, they connected that with the fact that I have had surgery on my scalp twice and they have had to do a skin graft during both surgeries. I am not sure I know how the connection.
 
Sarah, I don't know for sure, but I'm presuming that if you still have a large amount of the eggs & toast in your stomach at 4 hours, they might want to have you stick around and see how long it takes for your stomach to empty. That's just my guess though.

After my hospitalization last year, I now keep a "go" bag at all times just in case I need to go back to the hospital. It's got all the toiletries I'd need for an overnight stay - they had things like shampoo and toothpaste at my hospital, but they were icky and not of good quality, so I am making sure to bring my own next time. And bring lotion or moisturizer because it's very dry in the hospital. Charging cords for your phone or tablet or whatever devices you're bringing is a must. Comfortable clothes, too, if you're allowed - I was given the option of wearing a hospital gown or my own clothes, and I much preferred my own sweatpants and t-shirts to the icky hospital gowns. (My goal is to sew myself a cute, flattering hospital gown for myself to keep in my go bag - that way, if on a future hospital visit I'm forced to wear a gown, at least I'll have my own.) Slippers are also good if your feet tend to get cold (mine do so I brought fuzzy slippers). And, this might be just me, but a teddy bear was a necessity. :) I'm 37 but so what, I like having a stuffed animal. It was comforting to me to have my bear with me. And whatever distractions you can bring - books, tablet, etc because the hospital gets quite boring. I know that sounds like a lot! My "go" bag is very large, ha ha.
 
Cat,
So sorry to hear that you also have the uncertainty at work that also creates the uncertainty about medical insurance. And I know what it is like to have a doctor be dismissive of your symptoms--it sounds like your doctor has completely forgotten about your recent hospitalization. :ymad:

Try to take great care of yourself right now--you have so many stressors that you cannot control--all you can control is how you deal with them. I think you are doing a great job of accepting that you are just in a difficult situation right now and that you just have to ride out the storm for a bit to see what break there may be on the horizon. I am so glad that you came back to share--I missed you and I was getting concerned about you.

Many people on the forum care about you--you are always so supportive of the struggles of others--don't be afraid to share yours when you are hurting. :hug:
 
happy said:
Cat,
So sorry to hear that you also have the uncertainty at work that also creates the uncertainty about medical insurance. And I know what it is like to have a doctor be dismissive of your symptoms--it sounds like your doctor has completely forgotten about your recent hospitalization. :ymad:

Try to take great care of yourself right now--you have so many stressors that you cannot control--all you can control is how you deal with them. I think you are doing a great job of accepting that you are just in a difficult situation right now and that you just have to ride out the storm for a bit to see what break there may be on the horizon. I am so glad that you came back to share--I missed you and I was getting concerned about you.

Many people on the forum care about you--you are always so supportive of the struggles of others--don't be afraid to share yours when you are hurting. :hug:
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Amen
 
ronroush7 said:
Maya 142, you mentioned a maintenance drug. I have asked my GI about Mtx. Today, the doctor's office said they were afraid of me getting an infection with this drug. Then, they connected that with the fact that I have had surgery on my scalp twice and they have had to do a skin graft during both surgeries. I am not sure I know how the connection.
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I think they are worried that your immune system may be weakened by certain drugs, therefore more trouble may start. It would be harder to get any trouble that may arise under control with a compromised immune system. I'm not totally sure, but I think that's the reasoning behind it.

Your bud,

cmack
 
Maya it seems that scrambled eggs and toast is the standard but the general idea is that it's the same meal for each patient so they can standardise the results. Cottage pie is pretty traditional here and actually I am happier about cottage pie than eggs, I hate eggs.

A quick look on my hospitals website makes me pretty sure they stop the test at 4 hours max and the 8 hours is only if you're having the small bowel transit recorded too so that's a relief! But it still doesn't really tell me whether I will be there 2.5 hours or 4 but never mind I can deal with that. I will take my kindle :)

I'm hoping they will use a fairly small tube, although I'm 25 and fairly tall, I'm pretty petite, when I had my mouth guard made for my teeth grinding they had to use the paediatric mould for it! I'm still at 14.9 BMI, not sure what my weight works out in pounds but in kilos I'm 42.9kg so still tiny.

I've bought some throat sweets with a numbing agent in so hopefully they will help!

The tube will be left in, at the moment I'm not too sure how long for yet, I don't think there is a set plan. But I'm not too bothered really, I'm not working right now (health meant I had to leave, they were trying to sack me) so it shouldn't be too bad. I'm a little unsure yet how I will feel about going out in public but I'm sure it will be fine. I've had my hair every colour under the sun and dreadlocks and stuff so staring doesn't phase me!

Cat I think I've got everything covered, I don't have to wear a gown so I've got pyjamas and some leggings and tshirts for during the day, colouring books, crochet, kindle, towel, shampoo etc, fluffy socks, dressing gown, chargers, all that stuff. I'm also going to take my V shape pillow and a fluffy blanket.

I'm sorry you're still having so much trouble with the pred taper that sounds like such a nightmare! I'm sorry your GI has stalled with being helpful, that's the last thing you need and I totally get the hesitation with seeing another doctor. I think when you've encountered enough bad doctors you get scared of all of them!

In terms of endometriosis pain and very heavy bleeding are the main symptoms and the pain generally gets worse over time as more tissue builds up. It can affect your bowel, it can cause diarrhoea or constipation and pain during bowel movements, but it wouldn't respond to steroids. For me I can distinguish between my endometriosis pain and my bowel pain easily, with endometriosis it's lower down and in my back and tops of my legs plus it's just a different kind of pain but so hard to describe. I don't think it would cause any harm to have a laparoscopy to be sure, but I would be surprised if you ended with an endometriosis diagnosis from it.
I hope you can get a proper diagnosis soon, 7 years undiagnosed is insane!
 
Maya 142, you mentioned a maintenance drug. I have asked my GI about Mtx. Today, the doctor's office said they were afraid of me getting an infection with this drug. Then, they connected that with the fact that I have had surgery on my scalp twice and they have had to do a skin graft during both surgeries. I am not sure I know how the connection.
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I'm not sure either Ron - it's an immunomodulator like Azathioprine/Imuran. I would assume the risk is about the same. I know the cancer risk is higher with Azathioprine. Most pediatric GIs are moving away from using Imuran and are using MTX more and more. It's a very safe drug - it's been used and studied for years by rheumatologist.
 
It could certainly be that the particular kind of infection you got is more common on MTX. I don't think it causes MORE immunosuppression than Imuran though. But I honestly am not quite sure - that's really a question for your doctor.

It is also be very individual - for example, my daughter got many more infections (including staph. and CDiff) on Imuran, but no infections on MTX.
 
cmack said:
I think they are worried that your immune system may be weakened by certain drugs, therefore more trouble may start. It would be harder to get any trouble that may arise under control with a compromised immune system. I'm not totally sure, but I think that's the reasoning behind it.

Your bud,

cmack
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Thanks all
 
Colonoscopy results back. The biopsies were negative - it isn't microscopic colitis, which makes sense as it doesn't match my symptoms (undigested food can't be only the colon not doing its job). Now my GI will do more tests but I don't think she will order them till Monday.
 
Ron,
I have long term auto immune problems after having chemotherapy for stage 3 colon cancer in 1998. I have psoriatic arthritis, auto immune hepatitis and auto immune nephrotic syndrome of the kidneys. My kidneys were a mystery. The only way to diagnose them was by kidney biopsies. The first one was done by an inexperienced nephrologist and he came up with minimal change disease of the kidneys. The treatment for that is high dose prednisone. I was on 75mg a day for over a year and a half plus a six month taper. My next two biopsies showed problems that did not relate to any known kidney problem so it was dxed as auto immune. The treatment was mtx. I spent around 3-4 years on mtx both oral and self injected. At the time my protein loss was around 3.5 grams a day up to 3.9 grams It did not qualify me for cyclosporine. Mtx is also a chemo agent and apart from making me tired and nauseated it makes you extremely sun sensitive and caused rapid advancement of skin cancers. I had a couple of nasty ones removed. I had to go off mtx because of worsening side effects. After a year on no meds I was hospitalised for a chest infection. I had a 24hr urine collection (the most accurate way to access protein loss) I was up to nearly eight grams a day. I have been on cyclosporine now for around three years. I have to avoid the sun and my nephrologist has told me no operations so my hips knees and spine have to stay in a decrepit state. I have type two diabetes from the prednisone and severe peripheral neuropathy from the hips down from chemo. I once asked my oncologist what most of his transplant patients finally died from, his reply, mostly cancer. What keeps you alive isn't always your friend. All the best ,Ron50.
 
akgirl said:
Sarah, I had eggs and toast with my test, and they were nasty, so maybe it's a good thing you get something else! The bread was so dry that it was hard to swallow. And to be honest, I didn't even eat all the food they gave me. I know you're supposed to, and the lady who gave me the food was really rude, telling me I had to eat it all, but they could still see everything going through me so whatever! They really should be more considerate. Forcing someone to eat a ton when they're nauseous is just mean. Also, I had to go back the next morning for my test. They said that some people do and some people don't, depending on how quickly it moves through you. But this was when I was at the Mayo Clinic, so I was at the clinic every day for a week for a bunch of different tests. So I'm guessing that's not typical. I hope everything with your test goes well. Just remember that all you can do is your best.

Cat, I hate hearing that you're having a rough time right now, but as always, I can relate to so much of what you said. I've told my husband that we should move to a sketchy part of town because then I'll have a better chance of getting murdered. I know that's such a messed up way to think, and I was mostly kidding and don't actually want to get murdered, but sometimes life is just too much and it'd be nice to have a break. On top of everything else, I'm pretty sure I have my first cavity. I've never liked the dentist (I like my actual dentist just not being at the dentist), but it's so much worse now that I'm sick. Having someone stick stuff in your mouth when you're nauseous could be a form of torture. So now I'm freaking out and have cried a bunch about it. I think I'm going to see if I can get IV sedation for it. I know that's kind of wimpy, but I don't even care at this point. If they could just put me in a coma for a couple years while they figure out what's wrong with me, I'd be all for it. I also forgot to mention that I don't have dental insurance right now. My husband and I decided to cancel mine because it's cheaper to pay out of pocket for cleanings than to pay the monthly insurance fee. And since I never get cavities, it made sense......
Do you guys ever feel like life hates you? I wonder what I could've done to make God/the universe/life so mad at me.
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I totally get what you are saying. You are allowed to be mad or angry. Sometimes I have felt like I am being punished for something(what I don't know). Sometimes we have these weird emotions. I'm glad you are talking about your feelings, I find that usually helps me. I know it is hard but the world is a better place with you in it. :)

You can talk to me here or pm me any time and we can have a good old rant!

Sometimes it feels good to get it off your chest.


Your teammate in this game called "LIFE",

cmack
 
Hi,everyone! reading thru these messages breaks my heart! I am also in the undiagnosed club, but, had good news last week.
Apparently, if they cannot find the cause of our problems during a colonoscopy, there is a procedure call "DOUBLE BALOON ENTEROSCOPY". This procedure is done by a balloon system going thru the mouth, to the part of the ileum that they cannot reach from colonoscopy from the bottom. Great news for me! Now, to get to GP for referral, to the GI who does this procedure. Apparently, not all GI do the procedure, so, finding one who will. Good Luck everyone!!!
 
Eurgh it's my gastric emptying study in just under two hours and I'm really not sure how I'm going to be able to do it. Yesterday the nausea was awful, I spent most the day thinking I was going to throw up and didn't eat anything. Plus my bowels were angry too, so that didn't help.
Today I'm still not feeling great, I'm still nauseous and I've still got disgruntled bowels. I just don't want to do the test today even though I'm sure it's almost one of the best days to do it :(
I just know the rest of today and tomorrow are going to be awful and I'm not sure I'm prepared for it. Plus I still haven't heard from the hospital about my admission and I just want to know what is happening. I would totally prefer to be home the rest of today and sleep in my own bed though so I'm mostly hoping I don't hear today!
 
sarahfh said:
Eurgh it's my gastric emptying study in just under two hours and I'm really not sure how I'm going to be able to do it. Yesterday the nausea was awful, I spent most the day thinking I was going to throw up and didn't eat anything. Plus my bowels were angry too, so that didn't help.
Today I'm still not feeling great, I'm still nauseous and I've still got disgruntled bowels. I just don't want to do the test today even though I'm sure it's almost one of the best days to do it :(
I just know the rest of today and tomorrow are going to be awful and I'm not sure I'm prepared for it. Plus I still haven't heard from the hospital about my admission and I just want to know what is happening. I would totally prefer to be home the rest of today and sleep in my own bed though so I'm mostly hoping I don't hear today!
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Sending support and prayers.
 
Sarah, you're probably undergoing the test right now. I hope it's as easy on you as possible. You can do this! Keep us posted about the hospital admission too.

Thanks everybody for the messages of support. My guts were suspiciously calm all weekend which has helped my mood a lot (I don't trust it, though, I think my guts are plotting something). Akgirl, I'm not religious, I don't believe in any sort of higher power, but I do wonder why I got such a crappy mix of genetics and bad luck. I didn't even know that I have a family history of IBD until after I got sick - when I first started having symptoms, that's when my grandma told me that her father had UC. Oh, great. And I've taken a lot of antibiotics over the years thanks to recurrent UTIs, I'm sure that messed up my gut flora a ton. And the summer before I got sick, I was taking a lot of ibuprofen because we were kayaking a ton and my muscles got very sore. I'm sure that messed up my GI tract too. Put all those things together, the family history and the antibiotics and the NSAID use, and in hindsight it's not hard to see how I got sick - at the time, though, I was totally clueless. But I do get mad - like, my dad would also have the UC genes from his grandfather, and he eats a terrible diet and never exercises. I was eating a lot of salads and exercising a lot prior to getting sick. Why did I get IBD and my dad didn't? My brother is a grade-A jerk who has done a lot of drugs, why can't he get IBD? Why did it skip several generations and every other family member, and only I got it? It's really unfair.

But I try not to dwell on that too much. It is what it is. I have (presumed) IBD and I have to deal with it. It sucks, and some days it sucks more than others. Some days I wish I wasn't alive, and other days I'm mostly okay. (I'm never totally okay, I can't ever seem to make peace with it completely or put it out of my mind.) Fortunately, today I'm mostly okay. We'll see what tomorrow brings.

Akgirl, do you ever read Hyperbole and a Half? She's written some really great stuff about depression. This might help. She doesn't sugarcoat things - and I really like the ending, where she says, "Maybe everything isn't hopeless BS". Give this a read, I think you'll like it.
http://hyperboleandahalf.blogspot.com/2013/05/depression-part-two.html
 
Good luck, Sarah. I hope it wasnt too awful. I second the recommendation of hyperbole and a half. Both the depression article and the stories about her childhood which are very funny.
 
Thank you Ron, Cat and Dahlia!

I'm home, I survived! The cottage pie was mostly mash with very little mince so that helped, and the technician said if I was struggling to just eat the mash as that was the radioactive bit. She was really nice actually.
The test was okay and I could actually see one of the monitors from the scanner so that was pretty cool!

At the start I asked how long I would be there, she told me it would depend on how well my stomach emptied but no more than 2 hours 20 minutes. She said some peoples stomachs will empty in an hour, some take the two hours so she couldn't say for sure.
At my last scan/picture I could still see white in my stomach so that was at the 2hr20 mark.
Obviously I have to wait to see my consultant for the results though so I guess time will tell!

I'm a little confused/concerned that it wasn't the full four hour test but maybe because it was basically mash potato it empties quicker because of being a soft food? I don't know.

No call from the ward yet so I get to spend the night in my own bed. Feeling rough now so just chilling with the cats now :)
 
I'm glad the nurse was nice. It makes such a difference. I hope the results help you get the care you need.

Also, just realized my comment about hyperbole and a half was a bit odd... the depression page isn't funny, it is very good and her other stories which are mostly about her childhood are very funny.
 
Sarah,

I'm sorry to hear about the troubles you are experiencing. Don't be afraid to go see a doctor. If you think you need one you probably do. I hope things improve.


All the best and prayers as well,

cmack
 
sarahfh said:
Thank you Ron, Cat and Dahlia!

I'm home, I survived! The cottage pie was mostly mash with very little mince so that helped, and the technician said if I was struggling to just eat the mash as that was the radioactive bit. She was really nice actually.
The test was okay and I could actually see one of the monitors from the scanner so that was pretty cool!

At the start I asked how long I would be there, she told me it would depend on how well my stomach emptied but no more than 2 hours 20 minutes. She said some peoples stomachs will empty in an hour, some take the two hours so she couldn't say for sure.
At my last scan/picture I could still see white in my stomach so that was at the 2hr20 mark.
Obviously I have to wait to see my consultant for the results though so I guess time will tell!

I'm a little confused/concerned that it wasn't the full four hour test but maybe because it was basically mash potato it empties quicker because of being a soft food? I don't know.

No call from the ward yet so I get to spend the night in my own bed. Feeling rough now so just chilling with the cats now :)
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Good news
 
Sarah, I'm glad it wasn't too awful and you made it through. I'm not sure why they wouldn't keep you the full 4 hours but I'm sure they have their reasons - every doctor/hospital seems to do things a little bit differently. I hope you get the test results back soon and that they lead you to a diagnosis. Did they say how soon you might get your results back?
 
Sarah, I'm wondering if they use the 2 hour 20 minutes mark as a sign of definite slow emptying. So if you still had food in your stomach at that point they didn't need to keep you. Just a thought.
 
Sarah - I think the protocols must just be different. The 4 hour thing is definitely what they do for pediatric patients in the US. I don't even know if it's the same for adults, but I suspect it would be. But even here, different hospitals have different protocols.

You're in UK so it honestly may just be different. As you said, it's a different meal that they give you, so that may factor in to it.

Anyway, glad it is over and you survived! Hope it gives you some answers!
 
Thank you all.

Cat I'm not sure when I will get the results but I'm hoping that I will get them while I'm inpatient to be honest.

Jabee that's what I'm hoping for but I guess time will tell!

Maya I'm hoping that it's just a different protocol with it being a different meal, I'm hoping it won't be that I then end up having to have a 4 hour one at a later date. I just hope it was enough time etc to give me a yes or no result that is accurate. I'm already worrying about the results but there's nothing I can do about it.
I'm glad it's out the way though, now I just need to get the admission and tube feeding out of the way!
 
Hi

I am new to the forum and wanted to share my story to see if you think I may have Crohn's or a related illness. I am a 30 year old male normally fit and well.

I have been unwell for 10 months now:
Abdominal pain, mainly right sided can travel into side and back.
Lower stomach/pelvic area pain and cramps.
Pain in right testicle.
Problems passing urine, slow start, jittery during, do not feel like I have emptied my bladder once finished, leaking after finished even though I stand a couple of minutes afterwards. I have had blood in my urine too, and a couple of UTI (uncommon in men I believe).
Headaches.
Dizziness.
Eyes - gritty feeling, bloodshot, general pain and discomfort, flashes of white and some black dots.
Bad appetite on some days.
ZERO energy.

I was a healthy fit guy before all of this started attending the gym 6 days a week and a clean diet. Now I do nothing.

I have had blood test after blood test done. All okay. Kidney function wasn't great a couple of months ago but has climbed slightly.
X-ray, Ultrasound of abdomen, cystoscopy all normal.

I am scheduled to have a flow test tomorrow (checking if my bladder is emptying correctly). I am also waiting to be listed for Endoscopy and Colonoscopy and CT with contrast.

Do people think I may have Crohn's I just want some answers now.

I am taking 20mg Amitriptyline at night to help with the pain.

I look forward to your replies.

I
 
Cat-a-Tonic said:
Sarah, I don't know for sure, but I'm presuming that if you still have a large amount of the eggs & toast in your stomach at 4 hours, they might want to have you stick around and see how long it takes for your stomach to empty. That's just my guess though.



After my hospitalization last year, I now keep a "go" bag at all times just in case I need to go back to the hospital. It's got all the toiletries I'd need for an overnight stay - they had things like shampoo and toothpaste at my hospital, but they were icky and not of good quality, so I am making sure to bring my own next time. And bring lotion or moisturizer because it's very dry in the hospital. Charging cords for your phone or tablet or whatever devices you're bringing is a must. Comfortable clothes, too, if you're allowed - I was given the option of wearing a hospital gown or my own clothes, and I much preferred my own sweatpants and t-shirts to the icky hospital gowns. (My goal is to sew myself a cute, flattering hospital gown for myself to keep in my go bag - that way, if on a future hospital visit I'm forced to wear a gown, at least I'll have my own.) Slippers are also good if your feet tend to get cold (mine do so I brought fuzzy slippers). And, this might be just me, but a teddy bear was a necessity. :) I'm 37 but so what, I like having a stuffed animal. It was comforting to me to have my bear with me. And whatever distractions you can bring - books, tablet, etc because the hospital gets quite boring. I know that sounds like a lot! My "go" bag is very large, ha ha.
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I would have to agree with seeing a IBD specialist at a IBD clinic. That's how I got diagnosed. Usually a double ballon scope is only done by specialists and is reserved for looking for GI bleeds. Because of the risk of peroration...There's other tests that can be done at a bigger hospital that aren't the norm for a regular GI.
 
concerned1,

I am concerned about you. I also take Ami 40-50mg an hour before bed. It helps me to sleep without all the nerve pain. I certainly don't have all the answers, then again who does right? I hope you keep talking to us and also the medical professionals. You have to communicate your struggles. Nobody hears someone who doesn't speak up. Talk to any medical professional that has an ear to listen to you. I will certainly lend you my ear.



May things get better for you, I wish you the best,

cmack
 
cmack said:
concerned1,

I am concerned about you. I also take Ami 40-50mg an hour before bed. It helps me to sleep without all the nerve pain. I certainly don't have all the answers, then again who does right? I hope you keep talking to us and also the medical professionals. You have to communicate your struggles. Nobody hears someone who doesn't speak up. Talk to any medical professional that has an ear to listen to you. I will certainly lend you my ear.



May things get better for you, I wish you the best,

cmack
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Amen
 
Concerned - I hope you get some answers. I am new to all of this and don't know if that sounds like IBD. It does sound difficult, no matter what it is and whether or not there is a name for it. I hope the tests and your doctors help you get the help you need.

Little update for me - it's looking like it may be Post-infectious IBS. That is good news, I guess, I just wish there was something that could help. The colonoscopy was clean but they are ordering a couple more tests and a trip to the nutritionist. I think the tests are to look for IBS. I think it looks like IBS or IBD. I was wondering about SIBO, too, but forgot to ask. I'm hopeful, as the nutritionist specializes in GI patients, that she can help. So far it's been tests (which is good, as I am glad they are listening and trying) but nothing that changes things. Maybe the nutritionist can help. Have you found nutritionists to be helpful to you?

Edited to fix typing error.
 
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Dahlia,

I only had a nutritionist while in the hospital, however by going to a different diet, I achieved remission. The nutritionist sounds like a good idea to me. Ask about GMO'S in particular, and how to avoid them.

Your bud,

cmack
 
Dahlia, I can't remember if she was a nutritionist or a dietician, but when I was in the hospital, they had a woman speak with me about my diet. At the time I was hospitalized, I couldn't digest anything (even eating just one banana sent me running to the bathroom 10+ times with urgent watery diarrhea), so I discussed liquid elemental diets with this woman as elemental diets are designed for when you can't really digest food. Some of them have coconut oil, which I cannot tolerate (coconut is my #1 trigger food, it makes me ill for days) but we found that Vivonex is an elemental drink that does not contain coconut oil, so she had me do a 2 week liquid diet of that and then she had me slowly start to re-introduce foods, and specifically she had me doing a low-FODMAP diet. That worked out well - the liquid diet seemed to help, and most low-FODMAP foods are pretty friendly to my guts. So in my experience, it was helpful. The Vivonex was unfortunately super expensive (over $600 for a 2 week supply) and my insurance wouldn't cover it, but it did help, and low-FODMAP has helped as well.
 
Well I'm all settled into my hospital bed, NG tube goes down tomorrow and I'm hoping while I'm here I will get my gastric emptying study result :)
 
Yay Sarah! I'm so glad you're finally able to get some tube feeding. I hope it helps a ton! Get some rest and keep us posted.
 
Sarah, with all your conditions, have you ever been evaluated for Ehlers-Danlos? I have a couple of friends with the hypermobility type, and another whose case is a bit more complicated. She has POTS, a great deal of pain, celiac and other digestive issues, as well as significant pain. I have read that mast cell disorders and dysmotility can accompany the syndrome. It's just a thought. With my own issues (celiac, crohn's, chronic migraines) I keep searching for a unifying factor (aside from the fact that my third pregnancy and child--whom I adore, of course--preceded all three issues). Just a thought. And good luck with the tube placement and feedings. Is there a thought they will bypass your stomach if you have gastroparesis?
 
Jabee, that's interesting that you mention looking for one unifying factor. I've often wondered similar for myself - but for me, I wonder if I might be on the Autism spectrum or have Asperger's. I know that risk factors include having a family member with Autism - I have a cousin who is on the spectrum. And many, many people with Autism have digestive issues. My cousin has a ton of food allergies and is on a very restricted diet. I fit a lot of the criteria for Asperger's - I'm extremely introverted, I was a highly intelligent child but not really any social skills to speak of, I tend to obsess over certain subjects, I have some sensitivities (as a child I screamed whenever the vacuum was turned on, and I cannot tolerate tags in my clothes - I have destroyed shirts trying to get every little bit of tag removed). I often wonder if that's the piece of the puzzle that I'm missing, but I'm also not sure exactly what I'd get out of an Autism/Asperger's diagnosis. I mean, I don't really need assistance - I work full-time and own a home and drive and am married, I lead a pretty normal life. Plus, if I tried going for a diagnosis and it turns out I'm not on the spectrum, then I guess that just means I'm an anti-social jerk, and I don't really want to be that. So I haven't really pursued that, but I've often wondered.

(I mentioned that I was a highly intelligent child - there was a lady from the county who would go around testing the intelligence of all the local 18 month old children. I tested off the charts - the thing my parents remember is, the lady showed me a picture of a dog. Most kids would say "doggy" or "woof woof" or whatever. I said, "Collie!" At 18 months, I identified the breed of dog correctly. So apparently I was a genius back then - now, not so much. The same lady came back a few years later to test my brother when he was 18 months old. She had such high expectations for him, but sadly for her, he was a very typical toddler and said "woof woof" at the collie picture. Now, as adults, my brother's IQ tests higher than mine, although he lacks in common sense, and neither of us are geniuses. But anyway, I know that sometimes high intelligence is found in children with Autism/Asperger's which was my long and rambly point.)

Edited to add: I've also taken some online tests, obviously none of them official, but all of them indicate that I "most likely" have Asperger's. So there's that.
 
Sarah - that's great that they can start helping you in hospital. I hope that the feeding makes a big difference.

Jabbe - all my medical craziness started with baby #3 as well. Pain issues for me, then migraines and now digestive problems. It was really weird. I don't blame my kids of course, but pregnancy is a lot of work for the body. Maybe it would have happened either way. The whole thing is just strange.

Cat - We're going through the same thing with my daughter, not sure whether to test or not. I'm not sure a diagnosis would help - If she is autistic I think it's mild. I can see why you are wondering if it's related to the digestive issues. Is there anything they do differently with an Autism diagnosis?
 
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?
Click to expand...

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.
Click to expand...

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 :)
Click to expand...
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
 

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