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Crohn's Disease
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Posted 6/6/2013 9:32 PM (GMT 0)
Hi all

I've posted before about problems with fissures and fistula's which won't heal.

I haven't been diagnosed as my colorectal surgeon has been occupied with operating on my fistula - which has been a bit of a nightmare as I've had a seton then a plug and most recently a fistulotomy and if that hasn't worked then I'm on going to have an advancement flap.

I'm currently having a really difficult time with frequent bowel movements (up to 20 a day) of loose stools, severe abdominal pain on the right side, tonnes of mucous and some blood. It's left me so physically drained and I'm struggling to stay awake ( I've always been ridiculously active) my legs feel like someone has been pulling them out of their sockets. I just need to get some tips of how to cope and del with this as I only see my surgeon to investigate these issues further in three weeks time ( I haven't had a colonoscopy).

Is there anything I can be doing to a least lessen the symptoms, get more energy and reduce the amount of mucous and bowel movements. At the moment I'm avoiding all sugars, grains, gluten, spices and dairy but nothing is working and I'm getting desperate :(
Posted 6/6/2013 9:57 PM (GMT 0)
You can try going on an all-liquid diet. Drinks like Ensure will do or you can make your own drinks: the only requirement is that they are smooth and low residue: no bits.

That might alleviate symptoms. Liquid diets are clinically proven for Crohn's disease; more so for small bowel disease than large bowel disease. However, any relief will be temporary and will not resolve the underlying disease, so you do need to get diagnosed and onto medical treatment ASAP.

Best of luck.
Posted 6/7/2013 3:39 AM (GMT 0)
Please, please get an appointment with a gastroenterologist immediately! Your symptoms all are characteristic of Crohn's disease. Your increased weakness might end up putting you in a real medical crisis. If it is difficult to get into a GI quickly, please have your primary care doc/GP intervene and get you in more quickly.
Posted 6/7/2013 11:51 AM (GMT 0)
Unfortunately I can’t get in to see my consultant any sooner – all his clinics up until my appointment are overbooked – and I would rather stick with him as he’s one of the best.

My GP hasn’t been of much assistance in this respect with his view that there is a strong chance it’s crohn’s but he also thinks that although the wait is unfortunate it may also be useful because I can monitor my symptoms which will give them a clearer picture of what is going on and thus a faster diagnosis – I don’t quite know his reasoning for this. In the mean time he’s ordered a battery of tests so I can take the results to the surgeon i.e. ESR and CRP which show mild inflammation (these were taken in April when I was going through a period of being okish and not this extreme), Iron levels are low, and a stool sample which doesn’t show any infection.

It’s just taken a very long time – I was originally referred to see my CRS last year based on having these all these symptoms for a very prolonged period and subsequently when he examined me he found a fissure and an abscess which led on the fistula which has been their priority given the pain and discharge it has caused. My GP also suggested that I didn’t have a colonoscopy until the fistula is healed – again he felt the area was too sensitive to go through the whole prep required.

I’m going to give the liquid diet a go this weekend – I’m willing to try anything that will at least alleviate the number of bowel movements I’m having and get a bit more energy as I feel completely drained and lethargic.
Posted 6/7/2013 12:08 PM (GMT 0)
Have you seen your consultant before or will you be seeing him for the first time? When is your appointment? If it's months away, I am inclined to say go to A&E (apologies if you are not from the UK). If you get admitted, you will get much faster access to tests and maybe an earlier appointment with the consultant.

It sounds like you have lived with severe disease for too long already and it's not acceptable you should have to carry on for a few more months like this.
Posted 6/7/2013 3:46 PM (GMT 0)
Yes I’m in the UK and I’ve seen this consultant before as he’s the same person who has seen to my fissures and fistula. I’m considering A&E if it gets worse but to be honest my biggest fear is not trusting a new consultant who doesn’t know the full extent of my history and my current one specializes in Crohn’s and IBD. I guess my biggest fear is that as things are a bit of a mess with the current shake up in April I will get lumbered with a less competent/ less caring consultant. I guess it’s a complete catch 22 situation.
Posted 6/7/2013 5:13 PM (GMT 0)
So is the consultant also the colorectal surgeon? Colorectal surgeons aren't usually involved in treating Crohn's disease until a surgical consult is required. It seems like the cart has been put before the horse here: you should have had a referral to a gastroenterologist before a referral to a surgeon. Usually medical options are tried before surgery. There are meds which can heal fistulas, such as Remicade.

I do understand the lack of trust issue. Finding a decent GI is a crapshoot in all honesty. I can recommend my one - he's very good and knows a lot about Crohn's - but the previous ones have been useless. I'm sorry; that's not very encouraging :-/ But I would still strongly suggest getting a referral to a GI and getting a diagnosis. If a colonoscopy isn't suitable, there are other imaging tests which can be done. This sounds like a situation where it might actually be worth paying a one-off fee to see a GI privately. The tests can all be done on the NHS (most private docs also work for the NHS and vice versa), but you don't really want to be hanging around for 6 months to see a gastroenterologist.

Good luck....
Posted 6/7/2013 7:13 PM (GMT 0)
I agree with NiceCupOfTea. They should have sent you to a GI before the surgeon. They need to see why you're getting these fistulas and fissures (getting you diagnosed if it's Crohn's). There are treatments besides surgery. I was undiagnosed when I had my fistula surgery. At the time I had no clue it could even be Crohn's (even though I had all the signs). It took a whole year for my fistulotomy to heal. I wish now I would have seen a GI and got diagnosed sooner so I could have went the medical route with it first. Guess it depends on how soon you can get in to your GI, and if you really can wait that long. I know so much with this disease is a catch 22! Hope you get the help you need soon!
Posted 6/10/2013 4:07 PM (GMT 0)
Thank you all – this makes a lot of sense. I feel like I’ve been going round in circles – I think my GP’s expectation is that the CSR orders the necessary tests so we can move forward with getting a diagnosis. Although it worked out to be a massive benefit in terms of the fissure/fistula issues (I didn’t know I had them and neither did my GP) I have no idea why my GP referred me onto a CSR in the first place as the referral over a year ago was for the mucous, blood, frequent bowel movements combined with anaemia etc.

I will speak to my CSR about an internal referral to a Gastroenterologist as it will be a lot faster than getting a primary care referral at this stage. I’m just hoping I can get to the bottom of it as soon as possible as it’s just so draining and painful.
Posted 6/10/2013 4:53 PM (GMT 0)
NiceCupofTea is absoulutely right. Get to the GI and save the surgery for last. If you do have Crohn's, like I do, fistulas can be hard to close due to the inflamation. I've had surgeries on my fistula like fibrin glue... Failed, Fisula Plug...Failed. Remicade is the only thing that can close mine. My track is so deep I'm not going to let them cut through all the muscles leaving me incontinence the rest of my life. Good luck these things can really be nerve racking to say the least.

Steve
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