# Charlotte's Updates



## charlottem (Nov 15, 2016)

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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## charlottem (Nov 15, 2016)

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.....


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## ronroush7 (Nov 15, 2016)

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.


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## charlottem (Nov 17, 2016)

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


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## ronroush7 (Nov 17, 2016)

The best you.


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## charlottem (Nov 22, 2016)

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):ywow:


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## my little penguin (Nov 22, 2016)

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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## ronroush7 (Nov 22, 2016)

I hope you feel better soon.


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## charlottem (Nov 22, 2016)

my little penguin said:


> 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!!!:biggrin

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


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## Maya142 (Nov 22, 2016)

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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## charlottem (Nov 22, 2016)

Maya142 said:


> 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.
> 
> ...


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!


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## Maya142 (Nov 22, 2016)

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.
> 
> ...


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## charlottem (Nov 22, 2016)

Maya142 said:


> 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


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## Maya142 (Nov 22, 2016)

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.


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## charlottem (Nov 22, 2016)

Maya142 said:


> 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!)


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## Maya142 (Nov 22, 2016)

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.
> 
> ...


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!


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## charlottem (Nov 23, 2016)

Maya142 said:


> I just read it!
> 
> 
> 
> ...


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 :ysmile:


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## charlottem (Nov 24, 2016)

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


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## charlottem (Nov 27, 2016)

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!


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## ronroush7 (Nov 27, 2016)

charlottem said:


> 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


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## charlottem (Nov 29, 2016)

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......


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## charlottem (Dec 6, 2016)

Another update!

Been feeling a lot better today in terms of energy :dance:
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 :stinks: 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 :dance:


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## charlottem (Dec 14, 2016)

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


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## my little penguin (Dec 14, 2016)

So glad you have a doc who is willing to look for answers 
Good luck


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## charlottem (Dec 15, 2016)

my little penguin said:


> So glad you have a doc who is willing to look for answers
> Good luck


Thank you :ysmile:


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## charlottem (Dec 19, 2016)

I'm feeling so fatigued its so horrible. Ive also had a phone call and Ive got an appointment with a surgeon on wednesday :eek2::eek2::eek2:

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


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## charlottem (Jan 3, 2017)

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


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## ronroush7 (Jan 3, 2017)

I hope you feel better soon.


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## charlottem (Jan 8, 2017)

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!


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## Ricky_V (Jan 8, 2017)

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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## charlottem (Jan 9, 2017)

Ricky_V said:


> 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.


Yeah unfortunately it is really slow . My dr did mention biologics actually so maybe depending on the colonoscopy results, i might go on one


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## charlottem (Jan 16, 2017)

Hi everyone. I had my colonoscopy yesterday which came back clear for inflammation but came back saying that I had Melanosis coli. I'm also waiting for biopsies as I need to see what's happening with my mast cell colitis. I'm also having my MRI on Wednesday! Thanks for all your support. At least if it's not crohns we can concentrate on the mast cell problems and dysmotility. But we've still got the upper gi tract which needs to be checked as biopsies have come back with crohns in the stomach


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## ronroush7 (Jan 16, 2017)

Wish you the best.


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## charlottem (Jan 18, 2017)

Hi there. Had an MRI today. Got an emergency appointment with my consultant tomorrow night because I'm draining so much from the gastric port. We will be discussing what to do next


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## charlottem (Jan 20, 2017)

Well it was a terrible appointment. The dr had been harassed by my old consultant via email and is listening to her even though she is terrible (she threw a pen at me) and ive basically been discharged and told to find another consultant myself. Ive got mast cell colitis/enterocolitis so im going to see a mast cell specialist and then ive found a dr who specialises in how EDS and POTS can affect the motility of the bowel. Its going to be a long road ahead and im dreading it to be honest. In the meantime he thinks the morphine is causing the dysmotility to worsen so im going to go to the gp and ask for a pain patch next friday


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## ronroush7 (Jan 20, 2017)

I am sorry for the way your old consultant treated you.


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## my little penguin (Jan 20, 2017)

Hope you find a better fit soon


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## charlottem (Jan 25, 2017)

Hiya! I saw my gp today and he was amazing! I've been put on fentanyl patches and prescribed sodium picosulphate to move my bowels. It's good to have someone who genuinely cares. He's amazing!


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## ronroush7 (Jan 25, 2017)

charlottem said:


> Hiya! I saw my gp today and he was amazing! I've been put on fentanyl patches and prescribed sodium picosulphate to move my bowels. It's good to have someone who genuinely cares. He's amazing!


I am glad for you.


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## charlottem (Nov 6, 2017)

Well its been a long time since I updated (sorry)

I'm feeling so good at the moment its incredible. Finally, the motility is under control with new medications and IM FINALLY ON STEROIDS FOR MY IBD AFTER I FLARED BADLY AT THE END OF AUGUST. I will remain on the steroids until January so I would've been on them quite a while and we need to discuss whether I progress onto azathioprine. If anyone has any good maintenance meds for IBD I'd really appreciate it! I'm scared Im going to flare when I come off the steroids but I'll just have to wait and see I guess and hope for the best, luckily the elemental largely keeps me in remission!!


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## ronroush7 (Nov 6, 2017)

Thanks for the update.  Glad you are doing well.


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## my little penguin (Nov 6, 2017)

Keep in mind ibd meds take a while to become effective 
So most start them when they start steriods
So when they wean the meds are working 
Aza takes 3-5 months


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## my little penguin (Nov 6, 2017)

Remicade takes6 weeks
Humira 3-5 months
Mtx takes 8 weeks

Most ped GI will only use mtx in kids vs aza or 6-mp due to the higher lymphoma risk 

Ds has tried them all 
And is currently on Stelara mtx and ivig


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## charlottem (Nov 6, 2017)

my little penguin said:


> Remicade takes6 weeks
> Humira 3-5 months
> Mtx takes 8 weeks
> 
> ...


Hi there! thanks for this! i was wondering that actually about the whole taking a few months to work but I think where my GI is a new one he wanted to review everything before making a decision about azathioprine. I don't think I will need anything like humira or methotrexate because things aren't that bad- like my last colonoscopy was good as was my MRI- only at a microscopic level but I wasn't flaring then but I did flare badly in september and my calprotectin showed that and my ESR doubled too so thats why I went onto the steroids but as ive said my elemental helps a lot thankfully. For me the motility is probably the worst thing I deal with gastro wise rather than the IBD but I think whats worrying is how my IBD isnt really classified and my dad had this at my age and he ended up getting really sick but anyway Im rambling now! I'm just going to see what he says at the next appointment and hopefully it'll all work out. I'm keeping a symptom diary whilst im tapering and I definately noticed that when I reduced, I found I had like a tiny flare so I'm really worried when I come off completely but luckily i can schedule appointments quickly! Regarding the cancer risk, I am over 18 so I don't know if that changes things?


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## my little penguin (Nov 6, 2017)

methotrexate and aza are the same level of drug 
Are both One tier below biologics


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## charlottem (Nov 6, 2017)

my little penguin said:


> methotrexate and aza are the same level of drug
> Are both One tier below biologics


Oh really thats very interesting. Maybe I can ask for a low dose of methotrexate then?


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## charlottem (Jan 5, 2018)

Hello everyone

Was wondering if I could have some advice really as I am due to see my specialist soon and I need some advice. 

So I am on steroids atm and I am decreasing my dose... I felt great at the top dose and symptoms were greatly reduced.. now I am reducing I am getting symptoms again and I have passed blood a couple of times and also on a couple of occasions I have passed something very strange.. basically looked like a piece of disected liver/bowel (I do biology so I am very aware of what organs look like... I have disected stuff including a whole rat) . Funnily enough my dads family pretty much all have bowel problems- my great great grandmother had colitis, great grandmother had inflammation, grandmother has had inflammation, uncle tested for crohns, other uncle has undiagnosed problems and then we get to my dad.... he almost died because of IBD because noone took him seriously and his bowel became ischemic and burst. My dad told me he passes these odd things too. Problem is with my dad they biopsied his resected bowel but noone knows what IBD he has... like me.... so I can only presume we have a weird subtype that isnt really documented as such... anyway... I need to know if theres any advice on meds because although further up on the thread we have talked about azathioprine/imuran the problem is that tends to be only given for crohns in the UK and as I havent officially got that diagnosis theyre not particularly keen in starting that... I haven't asked about methotrexate so I might do that but is there anything else??! my specialist is saying we do not need to start biologics atm and to leave them in case I do need to start them and I agree with that as I have witnessed a friend who has run out of options. I also am considering bringing up staying on steroids long term which I know is not ideal but I think it buys me more time to consider long term options.... my local gastro is happy to go with whatever my specialist says but he said that the steroid i am on is the best for microscopic inflammation which is great but I have also had multiple ulcers. The other thing to consider is that my stomach has shown inflammation and considering the steroid is targetted for the ileum and colon then it wont help so maybe it would be better to go on something like azathioprine or methotrexate...... gosh this is a minefield


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## my little penguin (Jan 5, 2018)

Steriods can cause life threatening issues of used long term including adrenal insufficiency.
Saving biologics is great except this can mean you are left on steriods which isn’t an option 
Since you don’t have a ibd dx - biologics and immunosuppressants would be out
Do scopes not show damage or biopsies 
Is there a reason they haven’t given an ibd dx 
Do you have an egids dx ?
Eosinophilic gastrointestinal Disease dx such as EoE /egdor Ec ?
These respond to steriods
But are treated differently than ibd 
Eosinophilic colitis (EC). can use some immunosuppressants


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## charlottem (Jan 5, 2018)

my little penguin said:


> Steriods can cause life threatening issues of used long term including adrenal insufficiency.
> Saving biologics is great except this can mean you are left on steriods which isn’t an option
> Since you don’t have a ibd dx - biologics and immunosuppressants would be out
> Do scopes not show damage or biopsies
> ...


I have an inflammation diagnosis... its just not known whether its crohns. I've been diagnosed with mastocytic enterocolitis but its unresponsive to the normal treatment with mast cell stabilisers... in fact the mast cell numbers have actually increased. But where it gets complicated is that macroscopically I have had multiple ulcers in the stomach, duodenum and ileum. Biopsies have showed moderate inflammation with abscesses and stuff like that... I can dig out the official report.. give me 2 mins and ill copy and paste. But i havent had a granuloma so no crohns diagnosis. But as I said this happened to my dad and he ended up almost dying because noone took him seriously and as I said even when they biopsied his bowel it was indeterminate so theres obviously something genetic considering my entire dads side of the family have bowel inflammation of some description. also my dads inflammation is the exact same place as mine and started at the exact same age... I dont believe in coincidence. 

They have said about next stage is immunosuppressants if I flare after steroids which I wouldnt say Im flaring but Im getting there... but we are all hoping the elemental will keep things in remission because I use that for my motility problems and I am fed jejunally.


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## charlottem (Jan 5, 2018)

my little penguin said:


> Steriods can cause life threatening issues of used long term including adrenal insufficiency.
> Saving biologics is great except this can mean you are left on steriods which isn’t an option
> Since you don’t have a ibd dx - biologics and immunosuppressants would be out
> Do scopes not show damage or biopsies
> ...


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

Mast cell numbers are also high


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## charlottem (Jan 21, 2018)

So a quick update...

I had some bloods done not too long ago.. good news and bad news

good news- My haemoglobin has increased by a large amount because im actually being treated and the steroids had helped reduce bleeding 

bad news- because now im off the steroids I am not absorbing my potassium supplement and my feed because i think im in the early stages of a flare.. my WBC is also a bit high for me... 

off to the consultant tomorrow to discuss what to do because i feel awful... i had forgotten how bad I felt before steroid!


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## ronroush7 (Jan 21, 2018)

charlottem said:


> So a quick update...
> 
> I had some bloods done not too long ago.. good news and bad news
> 
> ...


Sending support.


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## charlottem (Jan 24, 2018)

Back on steroids till June 

If i need to increase them then I can

Will be discussing long term things in june im guessing


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## ivan.fiedoruk (Feb 2, 2018)

Keep fighting! I live in Brazil and had a lot of trips to Hospital. Eventually things will get better.

Fatigue, at least to me, comes and goes.


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## charlottem (Mar 27, 2018)

I don't know if anyone is still following this but I thought I'd post an update anyways

Had my tube change and that went well 

My consultant is supposedly going to move me on to azathioprine because im steroid dependent and then i will wean off steroids gradually 

I need the TMPT blood test first and awaiting a clinic appointment 

Im really angry as found evidence from 3 YEARS ago that I had crohns so gonna give the biopsies to him when i see my consultant as 3 SEPARATE HOSPITALS have all said I have IBD and crohns so im prety pissed off actually 

and im flaring at the moment so steroids have increased which have made things better and ive also put on weight thankfully


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## ronroush7 (Mar 27, 2018)

I hope you feel better soon, Charlotte.


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## charlottem (Apr 25, 2018)

Started azathioprine today and remaining on steroids until the summer and then hopefully I will be able to come off the steroids after what will be almost a year


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## ronroush7 (Apr 25, 2018)

I hope the steroids and azathioprine work.  Sending support and prayers.


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## charlottem (Nov 24, 2018)

what a journey! I first posted this 2 years ago! 

I have just had a phone call today to arrange my first humira deliveryy

unfortunately I have flared a lot recently and am on prednisolone. I have also found out I have reactive arthritis and also I have severe osteoporosis and currently have multiple spinal fractures and rib fractures so life is a bit painful at the moment but i am looking forward to hopefully feeling better with humira


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## Beach (Nov 25, 2018)

Ouch Charlotte!  There should be a law against having so many painful conditions all at one time!    Hope the Humira works it's magic and you get to feeling better soon.


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## Mountaineer01 (Dec 1, 2018)

I'm cautiously optimistic about Humira. I just started a couple of weeks ago myself and today I had the energy to change the brake pads on my vehicle, which I have not had the energy to do in a couple of years. I was somewhat fatigued when I finished, but the important part is I was able to do it.



I went the whole corticosteroid and mesalamine route for a while. They were effective for a week or two, then they became less effective. I can't be on any corticosteroid for very long or I start having insomnia, profuse sweating, and restlessness. I had to change doctors to get the Humira.


Good luck - if my experience today is indicative of what Humira can do, I think a lot of us can expect good things from it.


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