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11-15-2016, 06:16 AM   #1
charlottem
 
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Charlotte's Updates

Last week I posted this http://www.crohnsforum.com/showthread.php?t=79533

I thought I would start a new thread which would include all my updates!!!

Thanks for following and supporting me in this horrible journey that so many of us seem to have to take
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11-15-2016, 06:25 AM   #2
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Update 1: Rang my local hospital and things have got very confused. The crap consultant I had in London managed to spell the name of the consultant I wanted locally wrong. What makes it worse is that there is a colorectal surgeon under the name which she spelt on the letter which now means Ive been referred to both consultants.

Anyway what came out of it is that ive got an appointment with the consultant i want to see (not the colorectal person) on the 14th of December. Im very surprised its so soon but happy that I may finally get some help. I am quite nervous though in case he just looks at my referral letter (which has many wrong details in it) and doesn't listen to me.

We shall see.....
11-15-2016, 09:49 AM   #3
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Hi. I hope the person listens. If not, seek out a second opinion. I hope the best for you. Let us know how you are.
11-17-2016, 11:44 AM   #4
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Update:
I've been so exhausted. I'm struggling to do anything at the moment. I'm also getting high and then low temperatures as well as bad abdominal pain and a high volume of drainage from my peg tube. I had a flu vaccine a week ago but was getting all these symptoms before this, apart from the exhaustion. I have no idea what is going on. Looking forward to the 14th of December for the gastro appointment- really hoping someone can FINALLY help me
11-17-2016, 11:46 AM   #5
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The best you.

11-22-2016, 11:31 AM   #6
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Update!!!
Still draining lots and keep being sick too! Laxatives are not really working well and pain has increased a fair bit. Still getting temperatures, mouth ulcers, fatigue etc but the fatigue has improved and im now back at school!

Spoke with the dietcian and she is going to contact my gastro and see if he wants any bloods done before the appointment. She also said 'theres no doubt about it, you have poor motility' but my old consultant never said that?

Anyway waiting anxiously for the 14th of December but have also found another consultant who I will be referred to if this one isnt good either. Oh and ive lost 1kg since my last weigh in (im already underwight unfortunately but struggling with feeds now my pains increased)
11-22-2016, 12:18 PM   #7
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Have they looked at gastroparesis??
That can caused pain and poor feeds even with a g tube .
Tagging Maya142

Hope you get answers soon
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11-22-2016, 12:27 PM   #8
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I hope you feel better soon.

11-22-2016, 12:48 PM   #9
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Have they looked at gastroparesis??
That can caused pain and poor feeds even with a g tube .
Tagging Maya142

Hope you get answers soon
Hi there! Basically I dont tolerate anything in the stomach and use my g port to vent so theyve never been able to do a gastric emptying study but my dietcian believes I have it considering I drain horrendous looking bile out my tube frequwntly. I actually feed in my jejunal port (thanks PEGJ for being a life safer!!!)

Thank you! Im hoping my gastro appointment on the 14th goes well and in the mean time Im going to look online or in a pharmacy about buying some more laxatives to see if that helps the bloating etc
11-22-2016, 02:57 PM   #10
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It sounds like you do have Gastroparesis. Any chance you're sick -- with a virus or something (based on the temperatures, fatigue etc.)? That can make your motility (temporarily) worsen. My daughter has a J tube (used to have a GJ) and we lower the rate of her feeds whenever she is sick with a cold or virus or whatever.

It does definitely sound like you have delayed gastric emptying or gastroparesis (which is poor motility of the stomach) -- especially since you do not tolerate anything in your stomach.

They can actually do the delayed gastric emptying test using formula - they do it that way for babies! They just mix the radioactive tracer into the formula, pump it into your stomach and then measure how much empties over 4 hours.

However, you would have to be able to keep the formula down - if you vomit, the test is basically worthless.

Have you considered trying motility medications? Erythromycin is often prescribed in the US. Domperidone is also an option and it is easily available in the UK. Reglan is also used.

My daughter also has pretty severe gastroparesis but with motility medications (she is on Domperidone) she is able to eat some food (and gets the rest through her J tube).

My daughter also sometimes drains bile from her G tube. That means your motility is pretty bad. That would be another good reason to try a motility medication.
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11-22-2016, 03:25 PM   #11
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It sounds like you do have Gastroparesis. Any chance you're sick -- with a virus or something (based on the temperatures, fatigue etc.)? That can make your motility (temporarily) worsen. My daughter has a J tube (used to have a GJ) and we lower the rate of her feeds whenever she is sick with a cold or virus or whatever.

It does definitely sound like you have delayed gastric emptying or gastroparesis (which is poor motility of the stomach) -- especially since you do not tolerate anything in your stomach.

They can actually do the delayed gastric emptying test using formula - they do it that way for babies! They just mix the radioactive tracer into the formula, pump it into your stomach and then measure how much empties over 4 hours.

However, you would have to be able to keep the formula down - if you vomit, the test is basically worthless.

Have you considered trying motility medications? Erythromycin is often prescribed in the US. Domperidone is also an option and it is easily available in the UK. Reglan is also used.

My daughter also has pretty severe gastroparesis but with motility medications (she is on Domperidone) she is able to eat some food (and gets the rest through her J tube).

My daughter also sometimes drains bile from her G tube. That means your motility is pretty bad. That would be another good reason to try a motility medication.
Hi thanks so much for your reply!

I really do not feel unwell with a virus or anything so its anyones guess what the temperatures are but I think Ive decided to book a GP appointment (I think in america you call that your primary care dr?) to get some bloods and to ask for some more pain relief as Im trying to continue at school and my life etc and I had to have two weeks off!

The last time I had a bit of formula- it was Modulen actually, into the stomach I was sick but thanks for that information- if things imporve ill ask them to do it with the feed!

I have tried motility meds- been on erythromycin, domperidone and metacloperamide but my idiot consultant stopped me from having them so Im now just on prucalopride which to be honest isnt helping. So Im going to ask for a motility medication if appropriate at my appointment of the 14th of December.

My bowel motility isnt the best either- I can only go after taking multiple senna doses- ducosol, movicol dont work and I cant tolerate lactose so cant have lactulose. They found when placing the PEG that gastografin doesnt go through my bowel quickly- and thats going down my tube!

To be honest Im often quite shocked and alarmed about the volume that can sometimes drain out the tube- its ridiculous! and ive taken pictures of when its been really bad to show to the dr and I showed my dietician and she was shocked and was like yep thats definitely pure bile!
11-22-2016, 03:33 PM   #12
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If you are draining a lot of bile, then you need to tell your doctor. You may be losing electrolytes.

This is from Feeding Tube Awareness (which is a great site - lots of info about feeding tubes!):

WHAT DO YOU DO WITH THE DRAINAGE?

Your doctor must decide what should be done with anything that drains out of the stomach. Gastric juices and bile are important for hydration and weight gain. Sometimes doctors recommend replacing gastric output with pedialyte. Blood work may be done to make sure your child’s electrolytes are within the appropriate ranges.

If the volume of output is considerable, it may be necessary to re-feed it. This sounds so much worse than it is. Bile should be collected and re-fed several times a day. Bile can be mixed with formula and run through the feeds into the J-port.

Check with your doctor on his or her recommended procedure. Some parents will re-feed in addition to the full daily formula intake. Children who are prone to dehydration may benefit from re-feeding all that is drained out.
11-22-2016, 03:46 PM   #13
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If you are draining a lot of bile, then you need to tell your doctor. You may be losing electrolytes.

This is from Feeding Tube Awareness (which is a great site - lots of info about feeding tubes!):
Thank you! I dont think I am dehydrated and I REALLY do not want to have to infuse bile back in but I'll be mentioning it to the gastro on the 14th- the GP wont really know what to do- he'll probably just say wait for the gastro. Ive told the dietitian though! Problem im having is when im that nauseous i need to drain if I clamp off the drain then Im just sick and the dietitian and I kind of agreed that if its going to come up regardless its better for my mouth and teeth for it to be drained
11-22-2016, 03:48 PM   #14
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Re-feeding bile grossed me out too . But Pedialyte might work instead - that's not so bad!

My daughter never drained enough bile for us to have to re-feed it. However, when she was dehydrated, we added Pedialyte or Gatorade to her feed and that really helped.
11-22-2016, 06:30 PM   #15
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Re-feeding bile grossed me out too . But Pedialyte might work instead - that's not so bad!

My daughter never drained enough bile for us to have to re-feed it. However, when she was dehydrated, we added Pedialyte or Gatorade to her feed and that really helped.
Yes thats going to be something I ask about (the pedialyte) because I think I suffer with dehydration because I got AKI (acute kidney injury) last christmas so I think thats made me more prone!

I dont know if you have seen my other threads but Im really hoping this gastro helps because I just want someone to help me! because I just want to feel a bit better

Anyway thank for your helpful responses tonight! I will be bringing some of these points up with my dietcian/dr (dietcian deals with a lot of my fluid intakes and things regarding draining- thankfully I have an amazing home enteral nutrition dietcian!)
11-22-2016, 07:36 PM   #16
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I just read it!

Small bowel: There is patchy mild acute inflammation

Ileum: Fragment of granulation tissue. Shows an area of active chronic inflammation with ulceration. There is patchy mild-moderate inflammation.

Colon: focal cryptitis

comments: features are those of a patchy mildly active ileocolitis. The appearences are non-specific

Gastric: focal mild increase in inflammatory cells within the lamina propia with occasional intraepithlial neutrophils and a single crypt abscess. The features are those of a focal active chronic gastritis suggestive of upper GI tract involvment by crohns disease
Your biopsy results actually suggest Crohn's! Why is your doctor not considering that any more? What do they think is causing the inflammation in multiple places in your GI tract, if not IBD? IBS does not cause inflammation and ulcerations.

Can you get a second opinion? Improving on Prednisone suggests that it is inflammatory. EDS, POTS and Gastroparesis are not inflammatory so it has to be something else.

You have some of the same issues as my daughter. I'm not sure if you know this, but Morphine can actually cause or contribute to Gastroparesis. My daughter is on Morphine too. In her case, she had delayed gastric emptying before she was put on any pain medications, so hers is not caused by Morphine. But I am sure Morphine makes it worse.

She tries to take as little Morphine as possible and that helps a lot.

She also often has gastritis. She is on a daily PPI, Carafate (sucralfate) and Pepcid. She also takes Maalox as needed. Reflux is very common with Gastroparesis/poor motility and can cause gastritis. Crohn's can also cause inflammation in the stomach. That would also be treated with PPI's but to control the Crohn's you need an immunomodulator or biologic, which you can only be prescribed if you have an official Crohn's diagnosis.

I would try to see a different GI as soon as possible.

Good luck!
11-23-2016, 11:04 AM   #17
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I just read it!



Your biopsy results actually suggest Crohn's! Why is your doctor not considering that any more? What do they think is causing the inflammation in multiple places in your GI tract, if not IBD? IBS does not cause inflammation and ulcerations.

Can you get a second opinion? Improving on Prednisone suggests that it is inflammatory. EDS, POTS and Gastroparesis are not inflammatory so it has to be something else.

You have some of the same issues as my daughter. I'm not sure if you know this, but Morphine can actually cause or contribute to Gastroparesis. My daughter is on Morphine too. In her case, she had delayed gastric emptying before she was put on any pain medications, so hers is not caused by Morphine. But I am sure Morphine makes it worse.

She tries to take as little Morphine as possible and that helps a lot.

She also often has gastritis. She is on a daily PPI, Carafate (sucralfate) and Pepcid. She also takes Maalox as needed. Reflux is very common with Gastroparesis/poor motility and can cause gastritis. Crohn's can also cause inflammation in the stomach. That would also be treated with PPI's but to control the Crohn's you need an immunomodulator or biologic, which you can only be prescribed if you have an official Crohn's diagnosis.

I would try to see a different GI as soon as possible.

Good luck!
I know they do thats why I left that terrible consultant and seeing a new GI on the 14th (although I knew him very well before and he was amazing so hoping hes amazing again!)

Yeah the morphine is not good but I was throwing up lots before I was on morphine so its not that and even in my local when i was on TPN i was on a lot less morphine but throwing up so yeah its not the morphine- that actually doesnt make my nausea any worse surprisingly!

Im on pantoprazole and a high dose of it, ranitidine and sucralfate (which i think is carafate- or something very similar) and that helps the burning sensation. See i think it might be more that just gastritis because it will not go away despite everything im on! and its so much worse if i eat anything- it flares. They also found i had something called GAVE or sometimes its known as watermelon stomach which can make the stomach more prone to bleeds. Mast cells can cause inflammation but to be fair im on the medication already for that and its ineffective now. The idiot consultant was very sure it was just functional but i dont believe it for one minute- this woman was appaling- she wrote 'theres no chance of SIBO' guess what did the test and had it. Refused to listen to my POTS symptoms so went to my GP and he diagnosed it after tests, told her i was throwing up lots of bile, she didnt believe me until she was in the scope and saw a pool of bile sitting there! The woman was a complete nightmare!

Im ringing my GP everyday to get slotted in so I can increase painkillers and I will say about the drainage as Im worried as I have lost weight because struggling with my feed at the moment. Also when the dietitian gets back to me hopefully ill have some bloods ready for the GI in december, problem is I dont show things in my bloods through markers such as CRP etc- even with sepsis it wasnt raised much at all!

Thanks for all your help- sorry the time difference in the UK meant I didnt reply last night
11-24-2016, 07:13 AM   #18
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Update:

Went to my dr and hes prescribed a short term course metoclopramide (reglan) to try and get things under control and his impression is gastroparesis and enteroparesis. He said i cant take any more morphine because otherwise it will affect bowel motility more
11-27-2016, 03:11 PM   #19
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Hi there! Hope noone is getting fed up with these updates- let me know if you are but this is actually quite theurapeutic for me!

FINALLY been to the toilet and there was some dark red blood clots in my stool and ive come over extremely tired and fatigued and needing constant naps throughout the day etc, so looks like ill be visiting my dr in the monring possibly for a blood test- just really hoping they dont send me to the hospital! this appointment on the 14th cant come quick enough!
11-27-2016, 03:16 PM   #20
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Hi there! Hope noone is getting fed up with these updates- let me know if you are but this is actually quite theurapeutic for me!

FINALLY been to the toilet and there was some dark red blood clots in my stool and ive come over extremely tired and fatigued and needing constant naps throughout the day etc, so looks like ill be visiting my dr in the monring possibly for a blood test- just really hoping they dont send me to the hospital! this appointment on the 14th cant come quick enough!
Wishing the best for you. Prayers

11-29-2016, 01:04 PM   #21
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Hi there! Got my blood results today.

My red cell count and things like the haemoglobin and haemotocrit are low and strangely enough my white blood cells and lymphocytes etc are also low too. Was told by the GP to wait until I see my GI on the 14th so Im just resting as much as possible (to be honest i genuinely do not have the energy to do anything else) and hoping to go into school next week even if its just for my mock exams as ive been working towards getting a good grade literally cannot wait till this appointment and praying it goes well- 15 days to go......
12-06-2016, 10:47 AM   #22
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Another update!

Been feeling a lot better today in terms of energy
Im managing to go into school for some of the day and was reassured by my history teacher today that my predicted grade for university will be good no matter what I get in the mock because where im unwell at the moment, thats made me feel 100x better in itself because I will probably study history so a good predicted grade is obviously quite essential!

I havent had anymore bleeding but some really bad pains recently- i was in a lot of pain last night actually I also keep being sick whilst asleep which is quite worrying but Im not really sure how to solve that problem unless I drain during the night- Ill make sure to tell the gastro and possibly my dietcian- anyone else have that where theyre sick whilst sleeping?!

and finallyyyyy....... JUST OVER A WEEK TILL THE GI APPOINTMENT
12-14-2016, 12:42 PM   #23
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Hi there! Saw my GI today and HE WAS LITERALLY AMAZING!!!

he was really concerned about my situation and im having an urgent colonoscopy asap. Also going to be having an MRI or a CT scan. If all comes back clear for crohns in the bowel then he might still start on a steroid anyway. He is also asking for all biopsies from the other hospital and will review them to see whether I have upper gi crohns.

If nothing comes back then he is putting it down to the dysmotility.

He has also increased the metaclopramide dosage and added in erythromycin.

SO GLAD IM FINALLY BEING TAKEN SERIOUSLY!!!!! I am a bit worried though because my last biopsy on my stomach was done when I was in remission and i wasnt flaring but i explained this to him
12-14-2016, 10:02 PM   #24
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So glad you have a doc who is willing to look for answers
Good luck
12-15-2016, 10:40 AM   #25
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So glad you have a doc who is willing to look for answers
Good luck
Thank you
12-19-2016, 07:33 AM   #26
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I'm feeling so fatigued its so horrible. Ive also had a phone call and Ive got an appointment with a surgeon on wednesday

My colonoscopy will be in the new year sometime and so will the imaging but im really not feeling good at the moment at all and im im confused as to why i need to see a surgeon?! I rung them up and they said that my new consultant has referred me to see them and i do need to see him so i pretty much have to go which is odd because we never mentioned a surgical referral during the appointment
01-03-2017, 07:52 AM   #27
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Hi everyone! Hope you have all had a good christmas holiday!
I've been so fatigued its ridiculous and ive been needing multiple naps to get through the day . Also found out today that my colonoscopy wont be until the end of january which is so annoying because im getting increased symptoms and pains etc, so I think Im going to try and get a message to my consultant
01-03-2017, 09:52 AM   #28
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I hope you feel better soon.

01-08-2017, 06:02 PM   #29
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Hi everyone!

Ended up in hospital today because of severe pain around my PEGJ site! They ran some bloods and found they were normal and my inflammatory markers were fine (they always are) so doesnt look like a peg infection. Interestingly my white blood cells have doubled since my last bloods and thats whilst being on steroids (for POTS not for IBD). Just want this colonoscopy out of the way now to know whats going on!
01-08-2017, 07:25 PM   #30
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Wow... the UK health system and your health team seem really slow. We can get a colonoscopy and see a doctor same day or within a few days. Reading your posts makes me feel you should already be on a biologic. Good Luck.
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