Tiny bowel perforation after flare up. Feeling scared

Thanks for your reply and apologies for taking a while to get back to you. It's been quite a difficult time over the last few weeks but I hope I'm heading in the right direction although now I've started eating more solid food I am experiencing a little bit of discomfort. I suppose it will take time to settle completely. The last and only time I've taken antibiotics for this horrible condition it took me about a month before I felt fully better.

It's encouraging that you haven't had any further issues for four years. Was a resection ever discussed? I'm having a colonoscopy in a few months so I'll find out more about the state of my bowel then. Ugh!

Liz

Hello Liz ,just treat the colonoscopy as a mystery tour, going where no man has gone before !!!! I asked questions as corners were turned. I do apparently have a few "buckets " in my colon, but not much to be done about them, and they are obviously not a great problem. so everything is intact ,NO mention of removing anything. totally not acceptable to me, was told to eat normally,by the surgeon,, so I do, ,,but small meals, in no set routine ,just graze when i feel peckish. The only thing I am a tad physcotic about ,is to keep my bowels active ..Daily .

everything get's sore ,that's why you feel tender. Attire for the colonoscopy is a bit

"Bridget Jones " and yes ,,,your bum will look big .xx

I had a colonoscopy in 2007 when DD was diagnosed so I know what's coming!!! i think i'm having a CT colonography this time so not sure whether that will be better or worse??

Still dont know why i have this awful condition as I've never suffered from constipation in my life. I just wish there was more that could be done for sufferers, eg better pain relief.

trying to stay positive but finding it very difficult at the moment. are you in the UK?

BETTER!!! The hospital failed in it's attempt to do a colonoscopy on me, due to a very narrow entrance and what turned out to be a twisted narrowed colon, with diverticula in difficult places. So I was sent for the CT colonography instead. Piece of cake and I'm no hero.

You still have to do the prep to clear you out, but I found it easier than the colonoscopy prep. It includes something which makes your insides visible during the scan. I turned up at the NHS hospital and was taken straight in. You get pumped up with gas which makes you want to pass wind but I was fitted with a one-way valve so you can't. You feel bloated and a bit uncomfortable but nothing like the pain of diverticulitis. And none of the poking, prodding and extreme discomfort in some colonoscopies. I was passed back and forward through the machine several times while various scans were taken. Then after 20 minutes it was all over, and the gas released.

From driving into the hospital car park to driving out was less than an hour. But I was "windy" afterwards, and wore a panty liner just in case the "wind" contained anything else! The only downsides are that they can't do biopsies or remove polyps.

Hello from snowy/sunny Yorkshire. don't know if any other countries disregard

Diverticula patients as much as we are .The only time we get any attention is ,if we are writhing in agony.,and get carted off to hospital. is the -----ography a new thing,, just re read the C.T bit, so it will probably be an outside job !!!

Sorry you get more than your fair share of pain,,,,If I get a teeny tiny twinge in or around that area, I just do a bit of gentle massage. I don't have constipation either ,so we have to rule that one out.. Not worth all the worrying I used to do over it,

Iv'e got LOTS more incurable ,not known " situations " to keep me googling for an answer. Work on the principle now ,that if I am vertical ,I must be O.K

Thank god I have this uncontrollable sense of Humour .. Veggie stir fry for dinner .x

Hi Jaqueline, love your sense of humour - you need it up in Yorkshire sometimes (also in very windy - no pun intended - Lincolnshire!).

I don't want to appear nosey but I noticed you mention 'lots' of incurable not known situations and can't help wondering if you've ever taken Ciprofloxacin or one of it's relatives (Levo, Moxi, Nor - or Ofloxacin) in the past? Cipro is often prescribed for DD or similar although the others are handed out too often too. They can all cause adverse reactions which lead on to body-wide incurable and not known problems which the doctors are very happy to tell you only exist in your poor (also affected) brain.

Let me know if you think you've ever had one of these or have a search for something like 'problems with cipro' and see if it sounds like you.

Maybe have a nice cuppa while you're looking!

Hello Miriam, you have lost me totally with your recitation of drugs. I don't take any. just the odd Paracetamol, and a sleeper ,compulsory ,because I have mega

Tinnitus 24/7.I do vitamins and minerals to take care of my internals ,,with no nasty side effects ,at all.. and Manuka honey , delicious on crumpets ,a good antibiotic.and general bug killer.

Sun and wind at the moment ,went out looking tidy ,came home looking like road kill. Waiting for the tile rattling wind tonight ,as promised ,stuff get's loosened and sounds like River Dance. My other "situations " I keep collecting .with no one

particularly interested in removing them, , The D.D is firmly under control... thanks to me .. How do you cope ? sounds as though you are an expert with tabs.

I have a painful shoulder which was operated on ,and made worse ,and .as I am left

handed (all the best People are ) !!!! it's a good excuse not to do energetic housework .It is finally going to be "looked " at next week. probably will involve a lot of yelping.

I have relatives ,,, unknown,,,,, who live in Live in your part of the country.

Nice talking to you ,don't disappear

Jacqueline

P.S lot of doctors quite amazed that I am,, and ,,look so well ,without their drugs.

Did a bit of "I told you so" to a hospital doctor, speechless ,I think is the best word

Hi Jacqueline, sorry I lost you - yes they are confusing.

To explain better, ciprofloxacin (usually called Cipro) is often prescribed for DD as it's broad spectrum and clears up most types of bacteria. It comes from a family called the fluoroquinolones and the others in this family are Levofloxacin (also called Levaquin), Moxifloxacin (also called Avelox), Norfloxacin and Ofloxacin. (You see why I tried to abbreviate the list somewhat!).

This family of antibiotics are very useful but can also cause very serious side effects which may be permanent and disabling (both the USA and now Europe have announce several warnings about them).

I asked you if you'd ever taken one of these as many people with unexplained but ongoing problems (including Fibro, CFS/ME and DD) eventually discover they took Cipro or one of the others some years ago. They didn't have obvious side effects at the time but gradually developed these other problems.

If you know for a fact you've never, ever taken any antibiotic than that's brilliant and well done because there truly can't be many people who can say that.

If there's the slightest possibility you might have taken one ten or even 20 years ago it might be worth looking back to when your DD, mega tinnitus and shoulder problems started. These three are often up there amongst the list of common side effects.

I have to say I do admire you as I've looked at drugs quite a lot and most of them seem to cause more problems than they actually cure! I do try to stay away from them myself but my husband has MS which has brought a whole raft of problems into our lives. He was seriously affected by Cipro 5 years ago which is why I try to warn people about it. He's had gut issues (he's immobile) but we avoid them turning into anything worse with plenty of probiotics and a good diet - which is another reason why I'm here as so often people are given course after course of ABs but no one advises them to take probiotics - madness!

I'm sure the reason you look so well is because you don't take any drugs - (neither do I!), I too believe there's all we need in our food for most problems so long as we eat properly.

Just a quick follow up to the Cipro issue. I, too, had a reaction to the drug and was immediately switched to something else. I suggest people google Cipro to learn more about it.

SOD IT, I have just written a looooooooooooong note ,and it has done a runner.

Will you tell me if it arrived ,OR I will have to try and remember it ,and re do it.

This keeps happening to me ,I swear something lives inside this laptop. !!!!

Hi Miriam

My DD problems began in 2007 after i had taken lots of antibiotics for multiple UTIs brought on i think by the menopause. I definitely took ciprofloxacin at the time. Can you explain how this antibiotic could cause DD as it is a physical abnormality of the bowel? I think the change in the gut flora meant that my symptoms appeared but I'd be interested to hear more from you. They definitely didn't want to prescribe it for my DD in my recent stay in hospital but I had to take a one off tablet because a patient in the ward had been diagnosed with bacterial meningitis!

Hi Pecan, I'm always trying to warn both patients and doctors about the many problems Cipro and the other fluoroquinolones can cause. Some doctors don't even realise that levofloxacin and the other names I've mentioned work in exactly the same way (and cause the same damage) as Cipro so they give people who experience problems one of them instead. I've long learnt that the docs do their best but don't always know everything and it's much safer to google - if you get the chance!

Are you over the effects of Cipro now? It can take a long time (sometimes never for some people).

Hi Jacqueline, no reply from you. I've had this happen to me with this website - very frustrating. Or it sometimes goes into huge letters and misses half the post off! I've taken to writing long things off line (on a document) then pasting them on here when I'm done. I'm getting to the age where I can't be doing with it!

Hi Liz, you've certainly had trouble for a while so it's no surprise that you've been given Cipro somewhere along the way.

You ask how this antibiotic could be the cause of DD; I'll try to be brief!

Cipro is from a class of antibiotics called the fluoroquinolones(FQs), and I've listed the other common names above in my reply to Jacqueline. They work by interfering with the way bacterial cells replicate. They are a synthetic antibiotic engineered to achieve deep and fast tissue penetration and it's well known that they have the strength to deal with 'killer bugs' such as anthrax. Not really something you need to take for a UTI - unless you've tried everything else first -and it sounds like you had.

The FQs are broad spectrum, which means doctors can prescribe them without bothering to find out what actual bug is causing a particular problem, and they became one of the most widely used drugs at the beginning of this century. This has caused resistance problems and certain restrictions, but the biggest problem of all is that very few doctors understand how they really affect us.

They enter every cell and disrupt all of the intricate processes that each cell has to do. I'm not that good at bio-chemistry but I've managed to understand that if a cell's got a job to do, Cipro – and the other FQs – prevent them from doing it.

Their most well known target is collagen which is found just about everywhere in the body, from tendons to eyeballs. Achilles tendon damage is actually named on the packet leaflets along with a huge list of other possible problems.

Collagen literally holds us together (forgive me if you know all this already). It plays a great part in our muscles and tendons but is also there in all our 'tubes' e.g. our blood vessels, nerve sheaths and our gut. The MHRA have just issued a warning about possible damage to the aorta from FQs because studies prove that they weaken the artery walls which can lead to dissection and aortic aneurysm (bulges, swellings and eventual bursts – these are not good!).

DD is caused by weak spots in the gut that bulge and form pockets under pressure from gases or whatever is in there. It's not rocket science to think that the gut walls are as susceptible to FQ damage as any other 'tube'. I don't know if any studies have been done on this particular aspect but I can send you the link to the aorta study if you like.

I'm obviously not saying this is the only cause of DD. How the pockets begin is stated to be down to a variety of causes (maybe also including genes or lifestyle) and I'm only saying that FQ damage could well be one of these causes. I can't tell you when your DD started but if it was after the Cipro then a connection wouldn't surprise me.

Another gut related aspect is that all antibiotics affect the microbiome - your good flora that digest your food for you. A study has shown that Cipro continues to affect the composition of your microbiome for at least a year (longer than other ABs). This might be another reason for DD as you maybe haven't been coping with digestion so well after the Cipro. It's also the reason I and others keep banging on about probiotics - you need these to help your flora repopulate and live yoghurt is an excellent source. The capsules are also great and using both can give you a wider variety.

I would add that bacterial meningitis is a good reason to take a single dose of Cipro. Most other problems can be sorted with a safer AB.

Thanks so much for your reply. This is fascinating, I am seeing my GP tomorrow and I'm going to ask her to look back at my records and find out when I was first prescribed Cipro to see if there is a link. I probably won't mention why I'm asking as the medical profession seem to close ranks when a patient starts snooping round. I think genetics has a big part to play in my DD as my mother suffered with it for years but it went undiagnosed, poor thing. She was of the generation that just got on with things but she must have had a tough time.

Will let you know if I have any news