Hi, so I’m 50 now but have suffered from severe IBS since early childhood. I’ve seen my mum suffer with bowel obstructions and diverticulitis since I was 13, she passed away sadly 7 years ago after many years of bowel surgery, colostomy’s and ileostimy sadly at 79 she got so sick from a bowel ( what little she had left) infection and developed sepsis and she could not fight it.
I watched the agony she had been through and always feared it might also happen to me.. well guess what? I’ve been struggling with bloating a constipation more and more recently and put it down to menopause, I recently re-married and we went on our honeymoon end of July. During the 8 hour flight I started to burn up and felt sick, my first night at our hotel I was up and down like a yo yo pooping and weeing. I actually thought I had a uti and sought help from the onsite pharmacy and was put in nitrofuritonin for 3 days. By day 6 I really was struggling to pass stools but had taken some laxido sachets so used those. I felt incredibly bloated and just could not face the 5 * buffets! I’d been very cautious with what I ate and ate fairly light whilst away. On my flight back I felt so sick, I couldn’t settle or rest, move on 3 days of being home and I looked 9 months pregnant, the crippling pains were like labour pains and I could not poop at all. I rang 111 early hrs of Tuesday morning and got an appointment with a GP locally, she took one look at me and was concerned I had peritonitis as I had a fever and could hardly walk.
I was sent to SAU at my local hospital, they felt I was just very constipated but decided to do a CT scan and thank goodness they did, they found thickening on the left of my bowel and diverticulitis so I was put on co-anoxiclav 500mg, told to take 6 sachets of movicol a day and stick to liquids for the next 7 days.
I am starting to feel less pressure, I can’t move far from the loo of course and I’m passing just liquid now, though passed 3 normal looking stools initially. I’m exhausted and super emotional as this IBD killed my mum and I’m terrified, she was my age when diagnosed and went through years of hell. I’m awaiting a colonoscopy but that won’t be for another 6 weeks or so as the bowel needs to heal.
If anyone else is going through or been through a similar thing please reach out because I’m scared. Terrified I’m going to end up like my mum, terrified I’m going to lose my job as had to take off so much time this year already due to illness and now this so financially it’s a worry. Also the hospital clinic did not sign me off but yet I need to go 7 days bowel cleansing and I can’t speak to a GP until next Thursday at earliest despite my pleading for just a fitnote to send to work as that time takes me over a week of absence.
It’s my daughters 21st Birthday today, she has autism and sld and I haven’t been able to go see her so that’s really got me down, just keep crying all the time. I never wanted to end up like this, I feel like it’s going go rule my whole life now, which I know sounds a big dramatic! I’ve dodged a bullet in that at least I didn’t need surgery so I’m sure I will feel better next week after all the bowel cleanse. I just needed to vent to people I Hope understand how scary this is.
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I echo what Luisa22 says. So sorry you are going through this.
As you know, anxiety can play a part in bowel problems. I know it is hard, but try to be in the present and not worry about the future. Meditation has helped me, and there are many good ones on YouTube.
Dear Sick and SoreI totally sympathise with as I have suffered with IBS and diverticulitis and ended up in hospital twice last year. I then gave up with doctors and decided to heal myself.
I noticed you didn't mention your diet and any allergies you may have.
I became totally gluten free and dairy free. I also read up on what I should eat with diverticulitis...this included not eating food that had acid ie oranges tomatoes spring onions. I don't eat potato skins when eating baked potatoes. I took measures myself and I haven't had an attack for months!
I font drink coffee or tea but plenty of herbal tea. I have substituted cows milk with plant milk..they are delicious too.
Stress is a major trigger too so I investigated the vegus nerve and the role it plays triggering ibs attacks. I now understand how the Vegas nerve over reacts when we get shocks or overloaded with stress. I also make sure I sleep regular hours.
You have to understand doctors treat the symptoms but not the cause or causes of illnesses. This is your responsibility. Find out what your trigger is, listen to your gut..remember your gut has a small brain!
Meditate and regular exercise are integral too. Put yourself first now!
Thank you for your reply, I do have a lot of stress in my life, I have children with disabilities and I suffer massively with anxiety, made worse by menopause! No HRT has agreed with me so I’m trying to self manage that.
Because I’ve had IBS pretty much majority of my life I’ve looked at diets and found the low fodmap helped me identify certain foods that trigger IBS attacks. The diverticulitis is a new one and I’m a bit lost on what to do to prevent further attacks other than manage constipation because doesn’t matter what I do I seem to get constipated! I’m on my feet all day st work usually do I move around. Last week on my honeymoon I did not! I totally relaxed for the first time in years.. and then this!!! Must admit I was at a loss watching all the American tourists ( we were outnumbered in the DR!) literally stuffing their faces with donuts breakfast, lunch and dinner, I just can’t and won’t eat like that.
I have battled to lose weight last few years and especially my tummy area and always appear a bit bloated. I’m wondering if that’s more bowel related? I lack in core strength for sure so I do when recovered need to take that more seriously.
hi, I am so sorry you are going through this condition. I too am going through a terrible time, I’ve had 2 emergency admissions to hospital in the last couple of months, the first was bowel obstruction and the second was severe bout of diverticulitis .I’ve since had another 2 lots of antibiotics and I still am having terrible pain, I am at a loss of what to do, I’ve tried changing my diet, laxatives, you name it, I’ve tried. Recently they tried to do a colonoscopy but the pain was so severe I told them to stop, the nurses told me it because I have bowel loops and diverticulitis. If anyone has an answer pls let me know. Try the Novena prayer, it works on a lot of things, maybe I should try it for this illness.
I’m so sorry to read what you are going through also. I’ve had colonoscopies before due to severe IBS issues, did they sedate you? I had sedation and that helped me get through it. Not looking forward to the next one though!
With regards constipation/obstruction, this is my biggest issue and I’m not sure what happens first, the diverticulitis or the constipation? Chicken or the egg scenario!! So which causes which in other words.
I’m hoping to get an appointment with a GI doctor, there seems little follow up or consultation you just get the result then packed off home to get on with it.
I did find out that taking NSAIDS is a big no no for the bowel! I’ve had load’s recently as been suffering with headaches and joint pain, I take lansoprazole for GORD, as I have ulcers in my small intestine. These two drugs can contribute to constipation. It’s worth looking at any medication you take and side effects and basically anything you ingest isn’t it? Have you tried the low fodmap first? I identified a lot of foods I couldn’t tolerate.
Anyways thankyou for taking the time to reply and I really hope you find some answers soon as it’s thoroughly miserable! I noticed that Facebook has several diverticulitis support groups so might be worth a look? X
Hi, yes I was given sedation, it didn’t work. I try not to take pain killer as they all react badly to me. Paracetamol if desperate . I’m now waiting for a virtual ct colonoscopy . I wish I knew the answer to all this constant pain. I really feel for you, mine started with constipation and the bowel obstruction. I can’t even think of a holiday or even plan a day out as I never know when it’s going to be really bad pain, the pain is there all the time but sometimes to worse.😢
Hi, from what I can make of it, it’s similar to a colonoscopy , you still go through all the prep, then they put a scope just at the entrance of your bum and blow gas up there to expand the colon 🤔, they also put a dye in your arm and it apparently highlights any bowel problems. The thought it it terrifies me but I seriously can’t go on with this pain , it never eases up. I will just have to bite on something hard while they do it as I’ve heard it’s very painful too.
I've had a few of these and they are not painful I assure you. They just pump a small amount of gas into you colon so it shows up on the CT. It showed diverticular disease and narrowing of colon, sad thing is I've still had no treatment and have been in constant pain for over 2 years.
Oh wow, I can’t believe they have just left you in this condition, just to get on with it, you can’t just get on with it as the pain dictates what you can and can’t do.
Thanks for the head up with the ct scan, fingers crossed it won’t be as bad for me also 🙏
Lucky you, I’m afraid we are behind the times with that, unfortunately it seems quite a few people I’ve spoke to recently are saying the same as me, it was agony .
i am so very sorry about all you have been through can i just say that ibs is just a name cos they dont know what else to call it .for 30 -40 years i have had something similar and still its ongoing.one day they will find a cure but in the meantime keep a diary of everything you eat and you will crack it.i am getting there still waiting for a follow up with the doctor this is a follow up from christmas got all my info in a plastic wallet to take back.so far sehcatscan is the last info i have.
Sorry you are having such a rough and scary time. It must be so stressful and disappointing for you, for your honeymoon to be spoilt in this way and not to be able to see your daughter too 🫂
I know it’s hard not to think it, but your body is not your Mums but your own and this moment is a rough patch that hopefully will heal. The hormone fluctuations from the menopause do affect the bowel.
I’ve found taking a magnesium supplement alongside evening primrose or starflower oil helps . I use magnesium ok (Boots) and I do notice a difference when I miss taking them . Also, cutting out caffeine and dairy. You don’t have to go veggie but watch out for chickpeas & chilli. But importantly you have a lot of stress looking after others , so you need to look after yourself. Give yourself space to try a relaxing yoga class. One that includes meditation, such as Hatha or Restorative yoga. It will help. Think of it as your therapy time. If that doesn’t appeal, try walking or a dance class .
Your dr appointment will come round soon and you can explain what’s going on. Ask for a double appointment to give you time to talk. Also, is there a parent support group you could join? It must have been so hard for you as a child watching your mum be so ill. I wonder wether perhaps you could ask if you could attend a therapy group? It will be hard emotionally but is worth it .
Importantly you take care. It’s ok to vent, we’ve all been there 💛
Hi sickabdsore, I can resonate with whst you've been through. I'm so, so sorry for what you've been through. It actually upset me that a reply seemed to suggest you'd played a part in your bowel issues by someone who answered your post for help.
I know that in my family we have bowel issues going back absolutely decades and seems to be something steeped in our Dna. My mum suffered greatly with it, lost 5 stones, stopped drinking any type of milk or sugar, exercised twice a day for an hour, walked most places and was basically a vegetarian. She spoke candidly about all her issues and saw her gp regularly to mo avail.
Little did I know that the horror of what I saw my mum go through would happen to me. I've had instances where constipation happened suddenly after years of diarrhoea. Ive been taking 2 sachets of Macrogol for almost a decade with an agreement to go up to 8 per day when I'm constipated. This isn't and has never been tracked by my gp. I've been unable to walk, unable to get off a chair, prescribed a plethora of medication, had numerous scans, given specific exercises to do, told not to go on the Fodmap diet by my gp, and ended up in A&E numerous times and on regular outpatient appointments as well as being sent to an on day emergency type of service via A&E too.
I never know what my bowels will do from day to day so wear a nappy every day. I was rushed to A&E after calling an ambulance almost 2 years ago, and was told I had Diverticulitis Stage 1, and was actually dying as I couldn't get a Gp appointment for months. I had multiple types of xrays and scans, attached to numerous types of drips & just wanted to die that day as I felt so bad I couldn't speak due to the level of pain I'd never experienced before. A urologist confirmed that I'd started wetting myself due to my bowels being so impacted and not working properly. I was told to drink 3 cups of Peppermint tea each day, prescribed docusate which I take 4 times a day, prescribed Peppermint Oil Capsules which I take 3 times a day and started to feel better. My Gp called me into the practice and apologised but I sat silent as I can't forgive those receptionists or the surgery for turning off the Econsult online service. The following Monday a nurse called saying the hospital, Urology and my Gp had a meeting and asked her to visit and complete an assessment. She came 2 days later and stated I was to start self irrigation which she trained me on before leaving. This really shocked me into thinking I'm not far from having a colostomy bag, which she stated.
I do this every late evening but struggle as my arthritis and Fibromyalgia flare ups happen most days. I have an account, order the kits, and do it myself. It's not painful, and not much comes out, but I can tell that it's what is stuck onto what I call the ledges in my bowel, which is what my issue is. My food seems to coagulate on these ledges, and apparently its a serious issue as germs, etc can fester there.
I think the irrigation is a good option you could discuss with your Gp or consultant if you'd prefer that route. Please let us know how you get on. All the best 😍
Thank you so much for your reply. It sounds like you E been through absolute hell. I’ve been through A& E before with extreme pain and impaction, I was given and enema then and my god I almost screamed the ward down with the pain.
This time the powders and fluids are helping me and the antibiotics are kicking in as the pain is less intense and my swollen tummy is abating gradually.
Yeah my mums family have a history of diverticulitis inflammatory bowel disease, my eldest daughter has the same issues I did as a child so it’s awful seeing her go through it too but without much help as she’s autistic so they just don’t wanna know and just keep giving her more and more laxatives. Her care team have tried everything much healthier diet, she’s lost 3 stone and she walks for miles daily when she can. It’s a cruel affliction that’s for sure. I was born with inability to clear my bowel properly and so was she. So I don’t buy the fact it’s always self inflicted because I know I eat a lot of roughage and even at my slimmest and fittest I was often doubled up in agony with these symptoms.
I wish you all the best, I will look into the irrigation treatment soon as I’ve had my colonoscopy and i hopefully get to speak to someone about how I’m feeling Take care x
You too. Like you at the start it was suppositories, etc but nothing worked. I've been told I eat too much fruit, veg and roughage, and it's too much for my bowels to cope with. Yet that's the diet our health consultants want us to have. Our bowels don't work properly and that's it. Decades later I'm just stumped at the fact that they font have anything else to offer us to help. Fodmap diet doesn't work as the issue goes back to where it was after if your bowels don't work properly. Even removing or lowering spices does nothing to help. All the best 😍
I’m sorry to hear of you predicament. I have been through similar episodes and I think the best advice I could offer is to ask your doctor to refer you to a good gastroenterologist or colerectal specialist. Also it may be worth asking if you should try an amiltriptaline type medication for a while. This would calm the nerves in your bowel and also relax you a little. It would help as part of a treatment plan for you. I used to take them. Just 10mg at night and it really helped in lots of ways. It’s a very widely used medication. Then you need to try to get everything else sorted. I take fibrogel every night and this does ease things. Sadly, like you I don’t think I’ll ever be “normal “but a routine that helps and calms could be really wonderful for you.
Thank you for your reply. Yeah mum took amyltriptiline and I think my brother does as he too has diverticula’s disease. I did a trial recently that involved taking it for a research project on IBS, sadly it didn’t seem to agree with me I felt sickly and lightheaded on it. That said I will pretty much try anything I think at the moment to settle it down. I just want my life back!!
I’m still burning up and have nasty left side pain day 5. Am speaking to the GP tomorrow as will need to stop all these laxatives really tomorrow,as I really need to return to work on Tuesday🤞
Sorry to hear your story. Would appear many have experienced similar. I myself was diagnosed 10 years ago and my latest hospital admission last October and still waiting for colonoscopy. I too am premenopause abd Dr's keep avoiding discussing HRT had a fibroid cut away in March and still bleeding now. The exhaustion is indescribable add to the many pains etc . I feel no one is listening. Had a phone appointment with gynaecology last week who simply overtalked me and call was less than 5 mins . No idea where I am now.
Wishing you all the best xxx
We are probably better supported on here sharing experiences x
Diet for diverticular disease from a reputable website.
You are advised to eat a healthy, balanced diet including whole grains, fruit and vegetables.
For a healthy diet, the aim is to have a fibre containing starchy food with each meal,
plus five portions of fruit and/or vegetables per day
and try to drink at least two litres (eight to ten cups) of fluid every day to help the fibre pass through the bowel.
A portion of fruit and vegetables is 80g (or a handful).
Smoothies are 150ml portion as they generally contain a lower amount of fibre. If you don’t have much fibre in the diet or suffer from constipation it is important to increase your intake slowly to avoid symptoms of bloating and flatulence, it may take some time for improvements to be seen.
You can request the Guts UK ‘Healthy Eating and the Digestive System’ leaflet or
download it from the Guts UK website gutscharity.org.uk
Summing up - eat
Starchy foods
Fruit
Vegetables
Protein containing foods
Desserts and other snacks
Drinks
Wholemeal, brown or granary bread. Oat or rye bread.
Wholegrain crackers, wholegrain rice and wholegrain pasta.
Oats or wholegrain breakfast cereals, muesli, weetabix.
Bran-based cereals and shredded wheat. Chapatti or naan
Bread made with wholegrain flour.
All varieties are suitable including fresh, frozen, dried and canned.
All varieties are suitable including fresh, frozen, dried and
Canned. Vegetable soup.
Chickpeas, lentils, peas and beans, dhal. Nuts and seeds.
Puddings containing fruit and dried fruit, oat-based
Thank you I had all this in an information sheet from the hospital pretty much. Tbh I usually eat a diet very high in fibre anyways because I have IBS but my bowel has never functional properly since childhood. My daughter is the same and has suffered all through her 21 years. Must be a hereditary thing with us. My mum, brother and maternal grandmother had/have this disease also.
I am so sorry to hear that I do hope you find a diet and things that help you - I think the microbiome gut bacteria is more important they are finding now in lots of ways now.
Blueberries are a super good and anti inflammatory if you can get them too.
I buy them in frozen you can put them in the freezer from the supermarket as they do not last very long otherwise.
Am praying you can find something that really helps you.
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