Today was hospital day

[natythingycolbery]

And I'm not sure what to make of it.

I mean the good news is I haven't gained or lost weight, but it means my BMI is stuck at 17, they are not sending me to a dietician because they think the reason I haven't yet gained weight (In terms of their figures) is due to the fact that I'm only a month into taking the Pentasa and it is only really starting to have the required effect. They want me to stay on the 4g of pentasa until 8th Oct (2 months since i started takin them) at which point they want me to go down to 2g a day till i see them in oct/nov.

But they have asked me to keep an eye on my weight by weighing myself weekly which confused me... any ideas why?

I have to keep a poo diary too!

I might also have to have a endoscopy for biopsies at some point, which will be interesting, i have the worst gag reflex every!

They also said that I should be cured in 6 months, I thought it wasn't a cureable disease???? (although i didn't see my actual GI today, it was his right hand woman who is training)

Then they stole my blood! I hate having blood stolen.

[tex]

They also said that I should be cured in 6 months, I thought it wasn't a cureable disease????

Well, that's a very bad sign. It's an indication that they have a very poor working knowledge of the details of MC. There is no way that you will be "cured" in 6 months. It's not impossible that in 6 months your clinical symptoms might be gone, (although even that is unlikely), but the cellular histology of the mucosa of your intestines will most definitely not be restored to "normal", in such a short amount of time - that takes years.
The fact that they are asking you to monitor your weight, and to keep a diary of some of your symptoms, (diarrhea), suggests, (to me at least), that they are using you as a guinea pig - IOW, they don't know much about the disease, and they want to learn about it by observing you.

Sorry about not being able to gain any weight. IMO, you're not likely to gain any significant amount of weight, until you get your symptoms under control, no matter what you eat, so you would be better off eating a bland diet, composed of non-inflammatory foods, in order to stop the inflammation. The inflammation causes malabsorption of nutrients, and that's why you're unable to gain weight.

An upper endoscopy shouldn't be a problem, because if they do it right, you will be under anesthesia when it takes place. I predict that if they do an upper endoscopy, they will find either intraepithelial infiltration of lymphocytes in your small intestine, (I'll call it lymphocytic sprue, for want of an official name), or some degree of villus atrophy, (a marker of celiac disease), or both.

Tex

[natythingycolbery]

There is no way that you will be "cured" in 6 months. It's not impossible that in 6 months your clinical symptoms might be gone, (although even that is unlikely), but the cellular histology of the mucosa of your intestines will most definitely not be restored to "normal", in such a short amount of time - that takes years.
The fact that they are asking you to monitor your weight, and to keep a diary of some of your symptoms, (diarrhea), suggests, (to me at least), that they are using you as a guinea pig - IOW, they don't know much about the disease, and they want to learn about it by observing you.

Thinking back I don't think she meant cured, i think she meant under control, I really need to pay more attention.

When I saw my GI the first time he did say that he had never come across anyone getting MC it this way maybe they are using me as a case study/guinea pig? Not that I mind if it helps anyone in the future really.

They think that as I'm only 4 weeks into the treatment though that they can't tell if I've gained from whatever i lost (I dont own scales so I don't know if i lost weight in between hospital visits)

BTW I saw my GI's trainee person today as she read my casenotes and is intregued as to how i've contracted MC as I am the third in the UK to get it this way apparently. I'm not sure how long she has worked with speaking to people first hand about these things so maybe when she said cured she meant 'under control'

But they were positive about things, I have to go back in October. And before then I need to buy scales....

[Gabes-Apg]

Naty

you might consider expanding the scope of the poop diary to include food / reaction / activities not for everbut just for a few weeks

it was via this diary that i figured out the foods that are definate no no's and the ones that i can have here and there
doing this diary was also how i figured out that i cant have carrot and cauliflower at the same meal (weird hey!) (gotta love the mystery that MC brings into your life)

It was also how i figured out that stress at work was one of my worst triggers. ie - stressful situation at work 4 - 6 hours later i do a very soft texture very smelly poop.

if i start to feel unsettled at work i take a walk outside and clear my head etc
any meetings that have the potential to be intense, i schedule them after lunch so that if my body is going to react - i am at home

understanding how MC affects you gives you the power to control the MC monkey
(some days it can be a very cheeky misbehaving monkey!!!)


Loving your spirit and attitude - keep smiling

[natythingycolbery]

Loving your spirit and attitude - keep smiling

I'm amazed that I am quite happy, given that I suffer from depression too, but I think that although I still feel like I may be in denial, when I do finally accept this condtion I have a support group ready and waiting for me online (Something I have lacked for other conditions in the past (Random goolge searches for the win). Althouh tbh I think the main to being so happy is that I asked if I would be ok to go to Borneo to help with Orangutan conservation and they said yes

Reguarding the 'Poo diary' (It needs an awesome name, suggestions anyone?), they do want it to cover everything thing like what i am doing, how my emotional health is, what i have eaten etc. I'm starting it tomorrow when I have bought a little notebook after work.

[Gabes-Apg]

Finding this site is better than any drug (legal or illegal), to find this group of wonderful, intelligent, genuine people is way cool

- people that truely understand what a 'bad day on the toilet is'

- people that have had the same symptoms as you and the awareness you are not going insane!

- the one place that when you have a good day and your poop is improving you are allowed to broadcast it and celebrate it!


as you get control on the MC, your weight and your digestive health in general you will be suprised how fast the dark clouds of depression will move away.
as i mentioned in rich;s post yesterday, if your digsetion is not happy and not working properly it has a huge impact on every cell of your body.

[tex]

BTW I saw my GI's trainee person today as she read my casenotes and is intregued as to how i've contracted MC as I am the third in the UK to get it this way apparently.

I don't understand. How did you "contract" MC, that makes your case unusual?

Tex

[natythingycolbery]

Hi Tex,

To cut a long story short, I was diagnosed with Depression in May this year, put on setraline 50mg then upped to 100mg a few weeks later, about 6 weeks after starting taking it the WD started.

Basically they think the Setraline was what caused my MC, this is backed up by the evidence that as soon as I was weened off the Setraline when I was diagnosed with MC my bowel movements became semi-solid. (However this may also be due to the pentasa.)

That make sense?

Although I have no idea if this is a rare thing or if it is just a case of it hasn't been seen by my GI before

I apologise if I make no sense but I'm also an insomniac and am currently banned from getting into bed until I am tired, which means i'm getting little sleep and thus make little sense to me!

[tex]

That make sense?

Sure. Sertraline is a well-documented cause of MC. It is classified as having a high-likelihood of causing MC. Evidently, as you say, your GI doc is just not well acquanted with drug-induced MC. Many people with drug-induced MC are lucky enough that when the drug is withdrawn, their symptoms resolve, without further intervention. If your symptoms resolved when you stopped taking the sertraline, but then resumed, perhaps another drug is now causing the problem. Did you start taking another anti-depressant about then? The key to remission may be to simply find an anti-depressant that does not trigger the disease.

I understand your situation, because MC is definitely linked with depression, and related issues.

Tex

[natythingycolbery]

Sertraline is a well-documented cause of MC. It is classified as having a high-likelihood of causing MC.

When my GI said at my SF in July that he thought it was the setraline that caused it and wanted me off it there and then I figured it happened a lot, but then when I saw him again a week later he said it was rare for it to happen, i thought he meant that setraline causing it was? or maybe he meant compared to how people develop MC it is uncommon. So I now have no idea why he was saying what he did really and thus my brain is as confused as me!

And when he told me it might be the setraline that was causing the D, i don't think he actually meant it was casing MC, I think he just meant chronic D (I think the MC was as much of a shock to him as too me)

I'm totally off the anti-depressents now. I can't decide if this is a good thing or not.

However it has been established (I don't know why i didn't say this in my last post) that the use of NSAID's may have contributed to me developing MC, because of overdosing and so on and so forth.

Still to early to tell if I am one of the lucky ones who only has to avoid certain drugs, however, I had a pasty from work the other day and I felt a bit so i wonder if maybe i do have intolerances.

I'd best get started with this Poop/food etc diary to see if it is anything else.

[mia]

Good luck to you on that poo diary Naty! : )
Gabes- I love your points on why this is a great site to be.
Mia

[tex]

Naty,

Yes, NSAIDS have an even worse track record for causing MC, so if you were using a lot of them, they are the likely culprit. The sertraline may have simply been the "straw that broke the camel's back".

According to Dr. Fine's research, when the genes that predispose to MC are triggered, the genes that predispose to gluten-sensitivity, (and other food sensitivities), are also triggered at the same time. However, this doesn't happen for everyone, so some individuals do not develop food sensitivities.

Tex

[natythingycolbery]

Good luck to you on that poo diary Naty! : )

, thanks it started today (about 6 hours ago) so far its all food yey!

[ant]

Reguarding the 'Poo diary' (It needs an awesome name, suggestions anyone?)

How about "Winning the Poo"
Is that a terrible pun or what!

Best, ant

[natythingycolbery]

It is now called that!