Help needed - long and waffly!

[FruitLoop]

Hi - i am hoping to get some help here as i really am at the end of my tether!

Ok i'll try and do a re-cap as briefly as possible ?

2002 - Dx with Crohns
2005 - Re-section
2009 - Re-section which split causing peritonitis so further surgery with ileostomy, fistulas formed afterwards.
2010 (November) ileostomy reversal

1st two re-sections were about 25cm each, the reversal took 1 metre BUT the emergency surgery did not document how much so we are not sure exactly how much is missing.

Ok since the reversal my iron levels have been dropping and since May i have had 7 iron infusions and after they did not work i had a blood transfusion.

The D is constant and my GP put me on 30mg Pred BUT i hate pred so took it for 1 week then tapered to 25 then 20 4 days later.

I think i need to be on pred 30 for a while BUT how long ?

I have been on Infliximab in May but i developed drug induced Lupus so cant take that again - also many of the meds cause problems so i cant take Aza, 6-MP, Methotrexate - im basically left with pred as my only option.

I have asked to e referred to a new consultant as mine is more than useless but i am seeing the old one this week.

Basically i have to tell him what to do so this is why i need you guys ?

My symptoms are:
Chronic instant D on waking - usually about 6am
Stomach pain that gets worse and worse over the day and is accompanied by horrific bloating (i look pregnant by teatime)
Wind pain and chronic wind
Gastro transit of about 30 minutes - i rely heavily on codeine to keep things in!

Interestingly i am on Zopiclone at night and when i take this the pain and cramping eases amazingly - i am thinking this is due to the relaxant properties and was wondering if there is a Crohn's drug that would relax my insides ?

i have tried peppermint oil, charcoal etc but the bloating and pain is the same whatever.
If i dont eat i get right side "gnawing" pain - you know the pain that feels like your bowels are digesting themselves ? but when i do eat i then get horrific bloating and pain.

I follow a low res diet.

Because i was so poorly when the re-section split all my dr's seem to b of the opinion that "hey you are lucky to be alive" which yeas i am but i cannot live like this.

When i had the ileostomy i still suffered pain and D - is it possible to bypass your whole small bowel with some form of ostomy ? This is how desperate i am i would happily let them remove the lot if they could guarantee remission.


i had a gastroscopy a few weeks ago and stomach is fine, consultant wants to do a colonoscopy with stricture inflation but tbh i cant see how i could stricture just a few months after a re-section and if i have then surely it will just re-occur ?

Im not happy with the idea of balloon inflation really - has anyone had it done ?

Thanks for any help ? - medication suggestions would be great as my Dr has no idea!

 

[beth]

Okay... Zopiclone is a hypnotic which acts on the CNS, so little surprise it helps with the cramps. However taking that long term is not good, at all. So how about Buscopan (it's OTC), I know it's an IBS med but I'm thinking it might help with the cramps and you can take it daytime too.
Imodium might help slow things down in conjuction with the Buscopan. If your guts are inflamed then it may not be a good idea - it's a balancing act with getting on with life and your guts really not wanting anything in there.
Since it's your small bowel you may have a problem with bile salts not being reabsorbed properly, so something like Questran might help. You'll need to get the GI doc to prescribe it as it's a POM.

In fact, this page: http://www.netdoctor.co.uk/diseases/facts/irritablecolon.htm mentions most of those, and others, so you can find out about them some more.

I'm also wondering if you can try Humira (adalimumab), I know you've said Infliximab gave you drug induced lupus, but Humira being fully humanised rather than chimeric it might be worth the risk. Being steroid dependent is going to do you no good at all long term.

You can't bypass your small bowel, you really need it, at least some of else you get short bowel syndrome which isn't good news. A little bit of hope tho is that here in Cambridge Addenbrookes is doing small bowel transplants, which of course leads to other problems like anti-rejection drugs!

Hmm. So that has come out as rather a stream of consciousness hopefully it'll give you some ideas to pursue with both OTC drugs and stuff to talk to your consultant about!

Oh yes, and ditching the useless consultant is indeed the number 1 priority. Sounds like you really need a top notch specialist, maybe referral to the big London bowel hospital?

 

[ameslouise]

Hi Fruitloop - Cute brood you got there! You need to get better for yourself and for them!!

Beth gives very good advice above. I would add that you might want to look into amitriptyline instead of the zopiclone. It's an antidepressant that is also and antispasmodic. A few people on the forum are on it and it has really helped. I took it short term and it was like a miracle for me for the time I was on it. But it wont cure your flare, just help with the symptoms until you can get things under control.

Have you considered bowel rest with a medically supervised liquid diet/TPN?

Good luck, I hope you can find a new consultant and get a good treatment plan underway.

- Amy

 

[mizgarnet]

Hi Fruitloop-
Good advice above. One other thing- have you been tested for Celiac Disease?

Natural ways to "keep things in"- bananas, rice, marshmallows (homemade rice krispy treats are my fav.) All of these help thicken things up.

Good luck and I third the "find a new consultant".

Wendy