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Crohns/Collitis - general advice needed
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Ellealaw posted:
Hi,

I'm a 27 year old female who has suffered with tummy problems for the past 10+ years. In Feb 2010 I was diagnosed with coeliac disease but symptoms didn't improve. I need to take calcium, ferratin, Vitamin D and B12. I need ferratin infusions and seem to break bones with little difficulty.

When I was first diagnosed with coeliacs my GP at the time thought I had some sort of Collitis but the consultant said nope it's IBS. It was only through her persisting I had a biopsy that proved coeliac.

I have since moved house and have a new GP and she too believes I have some sort of Collitis.

I've had various flare up and a particularly bad flare up in April seems to have triggered. Never ending nightmare. Every night I go to the loo and use the toilet numerous times a day. Nothing eases the pain which is primarily right sided but can sometimes be felt elsewhere. The most horrific pain is in the back passage. I saw the consultant a few weeks ago and had planned to question if I had a fistula but he had med students with him, didn't ask me if I was ok with them being there and as a result I got embarrassed and froze. He's agreed to do a scope but told me crohns never causes pain?!!!!

A week or so prior to seeing him I was going away on business and was terrified because my life is sort of ruled by toilets. My GP gave me a week of prednisalone and life was fantastic. I came back from work and everyone said I looked so well then the course stopped and I was Bak to square one.

Was given another dose which ended last week and have been in severe flare since Tuesday.

I get sudden need to empty my bowels, horrific pain, sweating but clammy, my tummy distends and becomes hot to touch and I have felt generally poorly. On Tuesday I was unale to stop the diarrhoea and there was some bleeding. I felt terrible all day Wednesday and on Thursday at about 7pm out of nowhere the pain returned along with all the other symptoms. The bleeding increased a little. Today I have slept for a few hours in the afternoon but in the last hour full symptoms have returned though the pain isn't as bad the bleeding is severe. I'm not panicking about the blood as its bright red but I just don't know what to do.

Do these symptoms sounds like Collitis/crohns/UC to you or something else. The scope is being done but there's a 16 week waiting list though my GP was calling the hospital as he said this wasn't on. I get told to go to e hospital but can't leave a toilet to do so and am embarrassed as I will be working there. The GP understands this, he has given me the steroid enema in foam which I'm going to try tomorrow. I'm just panicking because I'm taking steroids (GP taken me off pred due to risk of fractures, I have low calcium hv gd to short doses recently and broke my wrist two weeks ao) If the scope is done whilst I take steroids and it doesn't show where do I go from there?

My GP's seem convinced it's something. Do you think the treatment they are giving suggests they think it's Collitis of some sort and what do I d if the gastro consultant says no? Life as it is can't go on like this - I'm afraid to start a relationship, hardly go out with friends and seem to spend my life linked to the toilet. I just want to live again but am fearful as to where I go next if nothing shows on the scope

Any advice, opinions or stories would be most grateful!

BASIC SYMPTOMS :

Pain in tummy (severe cramps) Temp Generally feeling poorly Severe pain in back passage Tummy distended Tummy hot to touch Clammy
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miserable_sob responded:
I had Ulcerative Colitis and many of your symptoms sound like what I went though. Although my bones never break and I take a lot of mean falls. Perhaps your bones are just more susceptible than your average person. I can't forget how I saw this woman running a race and right before she got to the finish line she broke her leg just from running. That's just proof of how easily bones break in some people. A lot of your other problems do sound familiar to me though. Although if you've had these problems for 10 plus years, I don't see how a specialist could not have discovered Colitis after all these years. I was diagnosed with Ulcerative Colitis almost as soon as possible. And when I had my flare ups, my condition became so bad, I was hospitalized more times than I can remember. I even remember dropping to somewhere near 80 pounds once. It was pretty much the same for me everyday or just blood and diarrhea. I can't say I'm familiar with coeliac. I did look it up though and noticed a Gluten free diet will really help it. So my first question is have you tried that yet?
 
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Ellealaw replied to miserable_sob's response:
Hi,

Thanks for your reply. Yes I went gluten free as soon as I was diagnosed and in recent weeks have even had my meals made for me by a chef completely gluten free. My bones break because I am low on calcium but also because I've had a few short sharp steroid doses recently. Been poorly again this evening and looked like a blood clot has cm away. I know I hv coeliac disease as it was confirmed by biopsy and I now have prescription food but these symptoms seem to have become increasingly worse over the past few months. I did have food poisoning which I know can be a trigger but I just don't know what to do anymore. Have had diarrhea since last Tuesday and have lost 6lb, just wondering if I can justify an emergency appointment at my docs?

Hope your well at the moment and thanks again for your reply.

Gem x
 
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kmp04 responded:
Hi Ellealaw,

I would also say that your symptoms sound much like mine and I have had UC for 4 years. Most of my inflammation is in the lower colon and rectal area as well, and it also tends to cause severe abdominal distention. If I understood your 2nd question correctly, you are concerned about the steriods calming the inflammation and that it won't be obvious to the dr. during the scope? My understanding is (at least my dr. did this during my 2nd scope) that when the dr. takes biopsies, they can tell whether or not inflammation has been ongoing despite medication use, even if part of the colon is not inflamed at the time of the scope. I hope that helps!

I really hope that your scope gives your dr. some answers and allows you to get on a path of trying to calm the inflammation.
 
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Ellealaw replied to kmp04's response:
Hi,

Thanks so much for your reply, t is greatly appreciated.

Well this flare up started a week last Monday. Sunday was ok as was Tuesday buy every day other than those has been a nightmare. I can understand why people want to stop eating altogether.

I'm concerned about my consultant. The first consultant (different health board as I've since moved) diagnosed with me with IBS it was only because my GP insisted there was something more sinister that he agreed to take biopsies which confirmed coeliac.

My newer consultant said you DON'T get pain with crohns or any form of Collitis so it's probably IBS but he'll the camera because I shouldn't be bleeding.

My life's being taken over and if this is IBS I think I'd rather not be here as I seem to be doing anything but living at the moment, I'm a student nurse and the thought of doing 12.5 hour shifts on the ward in a few weeks terrifies me. What do I do? Have any of you been told IBD diesn't hurt or have you faced doctors trying to 'fob you off' with IBS?

I'm seeing my routine doc tomorrow after I've seen my haematologist (funnily enough I'm always anemic) I'm even considering asking her to admit to get the scope dne quicker as this pain is horrendous. The fact the GP gave me oral steroids then steroid enema and called e consultant would lead me to think he's quite convinced I have some form of IBD and not IBS - would you think the same if your GP did this?

Thanks in advance x
 
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hannahleigh89 replied to Ellealaw's response:
Both Crohn's and Colitis can be extremely painful, although it is the opinion of many doctors that colitis causes more pain. You get more pain than with IBS because there is actually damage being done to your intestines. You need to find a new doctor if they don't understand that concept, because they obviously are not well trained in digestive disorders.

I'm also a student nurse and I can completely understand what you're going through. I no longer have a colon because I had both Crohn's and UC after fighting with doctors for years to recognize it. Don't be so afraid of the steroids for now- I know they cause problems with bone density but you have that anyway, so try to focus on getting one problem taken care of at a time. I know you said you're on gluten free diet, but do you take calcium supplements or vitamins or anything like that? I have to take two prenatals a day or my hair falls out, and it's getting back to where it falls out anyway so I'm not sure where to go from here, but I'll figure it out. Steroids can be your best friend during a flare, was my main point. Just be cautious.

Maybe try to add some Ensure or something like that to your diet. Should help with the calcium issue also. Just be prepared because they make my stomach hurt when I drink them, but it's worth it for the nutrition sometimes.


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