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Diverticulitis problem

(76 Posts)
cheneslieges132 Sun 02-Sep-18 10:47:35

Since being diagnosed with mild Diverticulitis 2 years ago, this has impacted my life in one way in particular ... and that is, I can now never go ANYWHERE before about 10.30 to 11.00 am, because of having frequent URGENT trips to the loo which just cannot be ignored!! So for instance, if we had tried to book a nice long day out previously, that now has to be completely forgotten about. This is such a nuisance - lovely, long days out (or travelling ANYWHERE before about 11 am) are totally out of the question now. Oh how life has changed!! Anyone else have similar problems?

jenni123 Mon 10-Sep-18 10:39:54

I suffer from ulcerative colitis which has the same symptoms. For many years I have had to plan my outings around public toilets, ie 'if we go there, so and so has a toilet, then if we go to ??? there is a toilet there'. There has been times where I have not made it to a toilet in time so I took to wearing incontinence underwear, not just pads but pants, which in a real emergency will contain it to a degree, I always carry a spare pair of pants and wet wipes.. just in case Imodium does not help me at all i take prednisolone, high dose to 'zap' it when it gets bad. horrible illness

Smurf52 Mon 10-Sep-18 12:12:01

I too have mild diverticulitis. Since childhood I have had urgency to run to the loo. I was brought up in Germany where my father worked and the first German sentence I learned was “Ist hier irgendwo eine Toilette?” (Are there public conveniences nearby).

It’s ruled my life since. I have wanted to join ramblers clubs etc in the past but couldn’t as I didn’t know when I would get caught short on long walks.

I have asthma and other allergies and my GP has recommended a new drug called Montelukast to alleviate allergies. One of the side effects is constipation....for the first time in my life I am not getting that urgency to go! It’s wonderful and has changed my life. Maybe scientists have developed a wonder drug to stop IBS symptoms by mistake?

I dare say I will eventually stop being euphoric and get annoyed with constipation but right now...yippee!!

inishowen Mon 10-Sep-18 13:35:50

I had similar problems to the OP. In fact I had an "accident" while driving my granddaughter home from school. It was awful. Luckily she didn't realise what had happened and I managed to get into the house to sort myself out. I had been on Omprozole for 5 years for acid reflux. I decided to wean myself off it as one of the side affects is sudden urges to empty the bowels. I stopped taking them in June and for weeks I felt sick and couldn't eat. Then there was light at the end of the tunnel. I now feel completely well again. I can go out and about without needing to find a loo urgently. I wish my doctor had listened when I asked if the medication could be causing my symptoms.

Fiachna56 Mon 10-Sep-18 13:45:28

I have Diverticular Disease, Acid Reflux and IBS. All as a result of a virus I had about 12 years ago now. Having been diagnosed with an autoimmune condition (Hashimotos), it was suggested to me to try going Gluten-Free. I decided to try it for 6 weeks, over a year later I am still following a GF diet and dairy-free where possible. I have never looked back and wish I had done it years ago. The strange thing is, initially I tried it to lessen the effects of the Hashimotos, but the difference to my bowel health has been transformed. I have never looked back and my life is not governed by 'finding toilets'. I hasten to add I have had all the tests (including the biopsy one) and I am not officially diagnosed Coeliac. It was just something I tried on reading that horrible symptoms due to autoimmune conditions can be relieved with a GF diet. I have certainly found this, perhaps for some of the people suffering awful symptoms here, would it be worth a try for you? Appparently there is a condition called Non-Coeliac Gluten Sensitivity. I do not know if this is what I have or not, but Gluten certainly does not agree with me. Dairy, I can take up to a point, but too much of it has me running to the loo. I hope my post is of help to some people.

nipsmum Mon 10-Sep-18 13:46:43

I have extensive Diverticular disease. Trial and error with diet and I found probiotic drinks over a long period made the urgency much worse. Blue cheese ( which I love) made it worse. Metformin taken for type 2 diabetes caused severe pain and diarrhoea. I eat plenty of fresh fruit and veg and have very few problems now. If you can manage it go gluten free for a time and see if that makes any difference. I was diagnosed almost 20 years ago and for the past 10 years have mostly had things in that dept under control.

NanKate Mon 10-Sep-18 13:57:01

Imodium Plus for me too

sandelf Mon 10-Sep-18 14:23:52

Well Fiachna I am so pleased at your post - I thought there were not many of us. I had 'malaise' - terrible bloating, 3 -4 day headaches etc for years. Then cut out wheat (to prove my daughter wrong as she suggested it could be the case) - but she was right! Never looked back, realise now I had been living in a permanently poisoned state. It's clearly not a gluten thing as rice and oats are fine. I wonder how many others are suffering from this.

BlueBelle Mon 10-Sep-18 14:29:50

But rice is gluten free and oats contain a different type to wheat Sandelf so not the reason at all

anniesgrannie Mon 10-Sep-18 16:35:45

Crumbs! Thank you ladies. I had never associated my diarrhea with my diverticulitis. I carry diarrhea relief (Sainsburys) tablets with me. I blamed it on one of my medications that I take.

Greciangirl Mon 10-Sep-18 16:49:05

I don’t know why doctors advise against Imodium.
If I have a difficult day, eg, going non stop most of the day, then I take two.
I have to otherwise it’s exhausting trotting to the toilet all day long.
They are a godsend if I am going anywhere.
The only drawback is the fact that I probably won’t have a bowel movement for a couple of days. But things usually return to normal until the next time that is.

Sue162 Mon 10-Sep-18 18:49:59

I am quite surprised to read that doctors advise against Loperamide as I have mine on prescription from my GP. I have IBS and to be honest without my daily capsule, I would be quite unable to cope with my busy life. In fact I do sometimes need to take two, particularly when I have a long motorway journey ahead of me. I am deeply grateful to whoever first developed it! smile

pollyperkins Mon 10-Sep-18 18:54:37

Can I say again that Ive found Fybogel very helpful. You can buy it over the counter -even in Waitrose. But I should ask GP for advice. Mine prescribed Fybogel on a repeat prescription. I have one every day and it seems to have largely done the trick.

graninthemist Mon 10-Sep-18 20:01:53

We seldom manage to get out before 11 a.m. either. My husband has Crohn's disease, and had part of his colon removed decades ago. Four years ago I had a benign (as it turned out) bowel tumour removed, resulting in my also losing a section of my innards. It's a real nuisance to lose so much of our day.

ladycatlover Mon 10-Sep-18 20:24:18

Can I just point out that Diverticulosis (which OP has) is a different condition to IBS and other conditions mentioned in this thread. So it's hardly surprising different medications are suggested, and others are suggested not to use.

For years I thought I had IBS, but then got diagnosed with diverticulitis when on holiday with my DD in London. The nature of abdominal pain I had then matched the pain I had when I thought I had IBS.

I don't mean to sound snarky, but different gut probs can have different causes, and these need to be looked at by a medical professional to find out what problem it actually is for an individual. Different diagnosis can mean different treatment.

Bathsheba Mon 10-Sep-18 20:48:02

I have had diverticulosis for about 12 years, and I was exactly the same as the OP - couldn't even consider leaving the house until around 11.00am. As you can imagine, this was a huge problem when I was still working - due to the problem I was allowed a parking pass for the extremely limited car park at work, so generally managed to make it to work (about a 20-30 minute journey). There were some days, though, when I couldn't leave the house and would work from home.
However, since having surgery 18 months ago for another bowel problem, this problem has largely gone away, thank heavens! I still have the odd day when I can't leave the house, but it's really very rare now.
I used to take Loperamide regularly - tbh I couldn't have managed any kind of normal life without it. Unlike others' doctors, mine told me it was perfectly safe; that all it did was slow down the transit of waste, giving the gut a chance to absorb more liquid, thereby firming up the waste before it reached the exit. When I asked him why the packaging warned to take for no longer than 2 weeks, and see your GP if things hadn't improved, he explained that was because any change in bowel habits for a protracted period should be investigated. However, in my case, all the investigations had taken place and therefore there was no harm in continuing to take it.
Now, with so many posters saying they were warned against taking it, I'm wondering whether this was bad advice hmm

knspol Mon 10-Sep-18 22:19:42

I am exactly the same after start of diverticular disease over 10 yrs ago. Cannot leave home before 11am ish. Before then I have to rush to 'go' at least half a dozen times. If I really have to go out earlier then I do use imodium but it's a last resort as I know it's not advisable.. When i feel an outbreak starting up I go on liquid diet for 2-3 days and then on the BRAT diet ( Banana, rice, apple sauce, dry toast) for maybe a week afterwards and this generally keeps it at bay and saves me taking antibiotics. Also take methyl cellulose tabs every day as advised by docs. Have tried all sorts of alternatives but cannot get rid of only living half days.

Greciangirl Mon 10-Sep-18 22:33:07

Just wondering why so many of you have an 11am time limit.
If I am having a problem, it lasts all day long.
Unless I take Imodium instants,

Bathsheba Mon 10-Sep-18 22:40:43

Just wondering why so many of you have an 11am time limit.
For me it was because it took that long from getting up (around 7.00am) for my bowel to clear. On a 'normal' day, I'm talking about, not when I was having a problem. When I was having a problem then yes, it could indeed last all day!

SueB20 Tue 11-Sep-18 11:08:25

I can't vouch for this myself , but I have a friend who has suffered with diverticular disease for several years. She is currently following the FODMAP diet with great success (as mentioned in an earlier post.)
She says its changed her life and released her from the worry of always needing to know where the toilets are when she goes out. She says it so exciting to get up in the morning and have a "normal poo"!!

midgey Tue 11-Sep-18 13:49:32

Pollyperkins mentioned chocolate makes things worse for her, cauliflower and broccoli can also trigger a quick gallop to the loo!

Jaxjacky Thu 04-Jul-19 21:04:21

My friend has diverticulitis, also hiatus hernia, controlled by omeprazole. Shes not on the Internet. Was using Imodium to control in the mornings, which then hunger her up for a couple I’d days, GP recommended Asda’s own, if necessary.
Anyway, she’s struggling, looking for a book with meal planners and seems to be taken by the Fodmap idea; can anyone recommend an easy to understand book, but not necessary to be that, with meal plans, do’s and don’ts please, preferably UK ( she was given a USA one which is not helping). I will buy it for her, thank you very much.

clementine Sat 13-Jul-19 18:37:26

I too suffer from diverticulitis and IBS ( D) I find if I am planning on going out early I resist having something to eat until I reach my destination if that's practical. I also take an imodium the night before . My consultant told me I could take immodium as often as I needed too. He also recommended a low dose of codeine phosphate. I keep this for when I am travelling and that combined with the immodium works a treat . I find my triggers are chocolate and coffee plus anything with a cream sauce.

FloridaDiver Tue 04-Feb-20 09:43:29

56yo male with painful diverticulitis for 2 years
2018 sent me to the ER 3x with horrible pains

DISCOVERED HOW TO MANAGE SYMPTOMS

Naturalist doctor told me yeast fosters infections, so cut out yeast (beer, wheat). Easy enough.

I went a step further and began taking Candida Cleanse tablets daily (garlic), plus Psyllium Husk to keep my stool well formed.

During 2019 I only had 2 mild attacks, and treated both with double doses of above supplements - and attack subsided same day.

UPDATE: I've since learned to moderate or avoid consumption of all shellfish. It's my belief (as an avid diver who deals with these meats) that shellfish rots in the gut at a pace far faster than other meats. I've been able to trace my recent flare ups to times when I've consumed a full meal of shellfish.

VERY PLEASED TO SHARE WITH OTHERS, as I was unable to find any cures online.

curvygran950 Tue 04-Feb-20 13:42:53

As a fellow diverticulitis sufferer I think there is some very good advice on this thread .
I, also, never think twice about taking imodium before I go out, if I am in the (ahem) 'loose' phase of the attack. I also never, ever go anywhere without a pack of imodium 'instants ' in my bag .
Over the years I think I've become better at handling the flare-ups and can tell straight away when the cycle is starting so can act accordingly.
Best wishes and sympathy to all fellow sufferers!

Franbern Tue 04-Feb-20 14:12:45

I suffered from Ulcerative Colitus for ten years. There were days when I would get up at about 7 am, and would then virtually sit on the loo until well past 10.00 am and would be sick in the process. I was on prednisoline and had 3 x a day steroid enemas, but the condition continued to worsen. Even virtually looking at cheese or other dairy food would send me to the loo. It was very horrible and debilitating and eventually I took doctors advice and had the everything taken out and a bag on my tummy in the place of that very ulcerated and diseased gut.
Took me a good year to recover - partly as there were problems with operation which resulted in me being returned to theatres four times over three days and a week in Intensive Care. I would just 50 years old when this all happened -having started the UC when I was 39 years of age.
Obviously, having a stoma bag is not ideal - but so very , very much better than what it was like before that. I feel as I lost virtually ten years of my life with that horrible disease and so wish that I had taken notice of the doctors trying to get me to have that operation earlier.
Bowels are still not discussed in this country - I would be very wary of taking any over the counter medication such as Immodium, discuss with doctors what they recommend for you.