Diagnosed with severe diverticulosis
Posted , 8 users are following.
Hi,
I am new to this site!
I have been diagnosed with severe diverticulosis with narrowing of the sigmoid colon following a colonoscopy in July. I had been getting painful cramps and occasional episodes of scant blood and mucus in stool over a five year period.
A bad week last April resulted in a GP visit and possible diverticulitis was diagnosed. I had no temp or abnormal blood results so no treatment other than a bland, low residue diet for a few days. It eventually eased and I felt better.
I saw a consultant and had biopsies taken during colonoscopy which ruled out colitis or Crohn's. The consultant doesn't want to see me again so I am now left to to get on with it, basically! No treatment, no advice.
Through trial and error I have found that a diet of mainly soluble fibre lessens periods of pain. Insoluble fibre increases my symptoms. Therefore, I eat a boring diet of mash potato, root veg, eggs and low fibre cereals, peeled fruit......no seeds, no corn, in fact nothing that could irritate the colon. I have found that the recommended high fibre diet does not work for me.
I was told to limit red meat and junk foods as this has caused the problems in the first place! Well, I have been a vegetarian all my life, ate very healthy foods, plenty of fresh fruit and veg, whole grains and pulses and never any junk foods. I have never been constipated in my life!
Needless to say, I am sad and anxious as I feel out on a limb and shocked to have this diagnosis.
I still get episodes of cramps which tend to be worse through the night and recently I have been getting pressure feelings in the abdomen which wake me at 4am and so I'm pretty tired a lot of the time.
I have read many of the posts on this site and they are very informative and supportive. I look forward to chatting with you all. United we stand!!!
Brannie
0 likes, 23 replies
julie66833 brannie42
Posted
i found that the recommended high fibre diet after a bout did me no good at all. in the end it didnt make a difference even with a low fibre diet, i spent so much time in hospital in the last 9 months it was unbelievable. i had a large part of my colon removed nearly 1 year ago, no bag thank God. They told me it was further up the colon and ive only had 2 episo es since and not had to go to hospital yaaaah. i had my surgery 2 yrs and 3 months after being diagnosed. My advice is to get on antibiotics as soon as possible when crampy and sick. Do not leave it until tomorrow
brannie42 julie66833
Posted
Thank you for the advice, Julie. Much appreciated.
Reading a lot of posts I know I am not anywhere near as bad as most poor souls on this site...not yet, anyway! But, even so, I have really suffered badly at times over the years. It's very debilitating.
I can't go on holiday, I can't eat out with friends. I fear any food not prepared by me...can't have spices or tomatoes or anything too rich. What an old biddy!....and I'm just 64! LOL!
May you continue to progress and stay well.
Brannie x
julie66833 brannie42
Posted
thanks Brannie, i was 59 when i had my surgery and even missed my sons wedding in Fiji, that really hurt....im in Australia.....good luck with it
brannie42 julie66833
Posted
So sorry to hear that, Julie. I hope your son had some wonderful pics of the wedding for you to treasure.
I'm in the UK but have relatives in Melbourne and Perth and Brisbane!
x
julie66833 brannie42
Posted
heaps of great photos Brannie. maybe you should move to Aus lol
kevin15484 brannie42
Posted
Brannie welcome to a sad world-
my wife has this i have to witness the misery
Food Diary
Get a Dietician appointment
Pulses, Peas, Corn avoid
Bland food till you settle down
use the doctor to control the pain, ask for inflamation marker test - if it is high you will need treatment
be careful too many drugs can kick your immune system to pieces
the unfortunate reality is you are in for a long painful journey to get stable and manage this awful condition.
brannie42 kevin15484
Posted
Your wife is lucky to have a caring husband. My husband is also one in a million and I am thankful for that. We need support.
Yes, I eat nothing but a bland diet now and avoid pulses, peas and corn like the Plague. I find it helps to control the episodes of pain and it's a small price to pay for longer pain free periods.
I take Paracetamol when pain is increasing and peppermint tea to soothe the cramps. A hot water bottle is my best friend!
I've been on better journeys, Kevin, but I'm hoping that I can share my experiences and learn from everyone.
Thank you,
Brannie x
Guest brannie42
Posted
Hi Brannie
I am guessing from your post, description of the medical care, and your wording, you are UK based. So welcome to my world, a 68 year old female from Devon diagnosed 17 years ago. The UK, unlike the USA, leaves you to get on with it by yourself, as you have found. I find the USA is a bit OTT with very heavy doses of medication, and does not fully explore dietary and lifestyle management before reaching for the knife. Of course, for some surgery is the only option, but as you say, you don't feel you are at that level. Just as well, because in the UK you won't get surgery unless it is an emergency or you have NO quality of life. And my GP is now reluctant to even prescribe antibiotics for fear of developing resistance.
You probably had inflammation with symptoms for the 5 years you described. I too had symptoms for years before finally being diagnosed. I was originally told IBS and to relax! My consultant didn't even want to see me, just sent a letter to my GP saying "Diverticular Disease, a benign condition". My thoughts about that comment are unprintable! Clearly the consultant was not a sufferer or she would never have called it benign.
The written information you are provided with explains the mechanics, but is worse than useless with guidance on how to deal with the disease. To be fair, that is because everyone is different, and the bland, bog standard, eat more fibre, cut out junk food is appropriate for people who live on junk food without fibre, but is not appropriate for people like us who have followed healthy diets with lots of fruit and veggies.
Did you keep a food diary, to see which foods triggered symptoms? My triggers are gluten and full fat, including dairy. I do avoid skins, peels, nuts and seeds, red meat. I cook my vegetables well, including making lots of homemade soup, which I blend. I found proper porridge works for me, and I am just experimenting with Oatibix and hot milk. I too eat a lot of eggs - boiled, scrambled, omelettes. I make quiche with eggs, cottage cheese and well cooked and skinned vegetables. You will read in many of the posts people become scared to eat in case the food triggers symptoms. This is where a food diary can help, if you try a little bit of something. If you get symptoms, the food goes on the "NO" list.
As for the constipation, I was prescribed with Fybogel from Day 1, and have taken it daily ever since. It bulks and softens the stools and makes them easier to pass. It doesn't suit everyone and takes a few weeks to become fully effective. There are other suggestions on this site. It is not like an emetic which has an immediate effect, and should not be taken regularly. Having said that if I do find myself becoming constipated I will take a one-off dose of something. It is very important not to become constipated and the resultant straining is very bad for Diverticulosis.
I too do feel the bloating and pain early in the morning but I normally have a movement within an hour of getting up and that does ease the discomfort. I also have more bowel movements now, on the Fybogel, than I did before. It is not uncommon to feel you can't fully empty yourself. And I don't let the disease stop me from going out, visiting friends or going on holiday. It just takes a bit of forward planning. I check out restaurant menus in advance, book hotels where there is a self service buffet, and let friends know in advance of my problems. Real friends will understand if you say "please excuse me if I don't have ..... I'm sure it's delicious, but I don't want to risk triggering symptoms and spoiling the visit for everyone".
You sound like you are dealing with the niggles in just the same way as me - paracetemol, tea, hot water bottle. I will go on a 48 hour fluid diet and that usually does the trick. In 17 years I have had just 6 attacks requiring medication, the last 3 being in a 3 month spell in 2016. It took 12 months to recover from that bout, but I'm managing fine with my diet now: eggs, porridge, soups, quiche, lots of cooked vegetables, fruit compote, grilled chicken and fish. Best wishes.
brannie42 Guest
Posted
Oh, my. I could have cried when I read your post! This sounds so much like what I have been going through.
Yes, you are right that here in the UK diverticular disease is not treated the same as in many other countries...we are left to get on with it for the most part. I struggled with painful cramps for 3 years which I thought was IBS, until I started passing scant amounts blood and mucus which sent me running to the GP. ( very difficult to get GP appointments these days). I was referred to a consultant and had a colonoscopy ( which was an absolute breeze) in Jan 2017 which showed "nothing other than some scattered diverticula in the sigmoid colon". No cause for the bleeding so was told I would get another appointment through in due course with the referring consultant. I never did get that appointment and I never got any leaflets on diverticulosis, either.
The following months were up and down with periods of pain which came and went, bouts of scant blood and mucus every few weeks. Fast forward to last April and I was under a fair amount of stress due to renovation work on the house and a new kitchen. I suddenly developed the most awful cramping pain in my left side and this progressed to pelvic floor pain and bladder pain and it hurt badly to use the bathroom. I managed to get an appointment to see the GP after suffering for a week. I actually felt a lot better by then. I never had a temp and my bloods and urine were normal. I had felt OK other than the pain so the GP said it was most likely diverticulitis that was recovering. He agreed to ask the consultant if he would see me again since I had never received a follow up appointment as advised.
And so I saw a "new" consultant who ordered another colonoscopy to recheck and take some biopsies in case it was possibly UC or Crohn's that might be causing the blood and mucus. He said he would see me again after the biopsy results had come through which would take 14 weeks in all!!!!!!!(yes, really!)
This second colonoscopy just 16 months after the first gentle and painless one was nothing but excruciating. I have never felt such pain in my life. I was rendered speechless and could hardly breathe with the pain...I couldn't even cry out as the pain was so bad! Therefore, I couldn't tell the endoscopist to stop! My sigmoid colon was "tortuous and narrowed" and the final verdict was "severe diverticulosis". He got to the ileocaecal valve using a paediatric scope and was able to take several biopsies. I will never go through that again!
What has really scared me is that there was such a difference in the procedures and following diagnoses in just 16 months! I am in shock.
I eventually got a letter from the consultant saying that just sigmoid diverticulosis was found, the biopsies were normal and the blood and mucus was due to my diverticular disease. I was referred back to the GP and never got to see the consultant again. I cried!
The GP printed off a leaflet for me...totally useless as I am not a junk food junky and I have always taken care of myself with healthy high fibre food. If I added any more fibre I would launch into orbit!! LOL! I have never had constipation...more the other way, loose....and no way am I going to eat seeds and skins and rough fibres as these are definite triggers for me.
Thank you so much for your very informative post. This has helped me so much. I don't feel that I am so alone now.
x
Guest brannie42
Posted
Hi Brannie
Yes you definitely went through the same as me, except my 2 colonoscopies were 15 years apart. The first one, they had to stop half way through because I was crying with pain, even though I was heavily sedated. The 2nd one the sedation never worked, as I was fully aware throughout, not that it took long! The consultant endoscopist had actually read my notes, and recognised his own handwriting from before. He could not even insert the child's scope. Like you the diagnosis was was "tortuous and narrowed rumen (entrance) and colon" and the final verdict was "severe Diverticular Disease". Fortunately he did not force the issue - he said it was too dangerous with the risk of perforation. He also said I should have had a CT scan not colonoscopy. But I had already told my GP and the hospital, and asked for my notes to be read before appointment, but was told "official procedure had to be followed". A total waste of time for myself, the consultant and his staff, when someone else could have used the appointment.
I think I am lucky as I am managing to cope through diet, although it is in some ways like living with a ticking time bomb. My cousin had the same problem for years and eventually had a fistula into his bladder. Then they operated and he had a colostomy with stoma. But he was born in the 1920's and never had much junk food - it simply wasn't around for most of his life.
I think you might need to be more on top of it than me, due to the rapid progress. It would be worth asking your GP about something like Fybogel to help with the constipation, and to update them about your continuing symptoms and severely limited diet. But to quote my former GP - she said I actually knew more about living with the disease, through experience, than she did. She knew the mechanics and the "recommended" treatment, but not in depth information. Good luck
brannie42 Guest
Posted
It can be very frustrating when you know certain procedures will be a waste of time. You certainly went through it with your first colonoscopy and knew that the second would be futile. Like you say, that appt could have been given to someone else.
It certainly is like living with a time bomb, every little niggle or twinge I freeze for fear it's the dreaded "itis" rearing again. It's hard to tell sometimes if the pains are the start of another flare or just the diverticulosis symptom. I am on edge all the time.
Your poor cousin. So much to feel anxious about with this disease.
Yes, I am concerned about my condition escalating in such a short time and I have written a letter to the consultant to ask if he will see me privately. I had not been given the chance to talk this over with him as he simply discharged me following my second colonoscopy and biopsy results. I know the NHS is struggling but I really need to discuss these findings with him....and I still need to know why I have blood and mucus a lot of the time, even without pain.
I have never been constipated, more the other way! I take psyllium and find it great for loose stools and it is supposed to be good for constipation, too.
You seem to be coping well and know what suits you. It does appear that many people on this site feel better on a mainly soluble fibre diet and cut down on the insoluble. I have certainly found this the case for me.
Thank you for the great postings...really helping me. Bless you.
x
Guest brannie42
Posted
Hi Brannie
Fybogel is a brand name for psyllium, so it's good that you are already taking it. I can tell you that the fear that every tiny niggle is "itis" starting again, is very common. I had the same problem and it is so difficult to tell any difference. I overcome this by the 48 hour liquid diet. If the symptoms subside it's most probably not "itis". If they get worse, or you develop fever/chills, temperature, nausea, or any combination, then it is "itis" and straight on to the GP.
Most of the time I am totally clear of pain, just some bloating first thing. But today I have niggles, so it's paracetemol and lots of liquid for me. I otherwise feel fine, so I'm pretty sure it's just inflammation, caused by eating a slice of pizza yesterday. Nobody can be 100% good all the time!!
I think I read somewhere that mucus is present with all stools, but is not normally noticed - it's nature's lubricant to expel waste. Blood can be a sign of inflammation, or a bleeding diverticulum, or even just a minor tear if you are straining. On the odd occasion when I strain, my bottom does get sore and I see a little blood. A good wash and application of nappy rash cream for a day helps me. The oldest baby in the world!!
I hope you get to speak to the consultant, but I wouldn't hold my breath - as you say, the NHS is pushed and over 60% of people over 60 have Diverticulosis, mostly symptom free though. The questions I would push for an answer is why the acceleration, what the long term outlook is likely to be, and what to look out for. I do worry sometimes that I have got so used to the constant niggles, I might miss something different.
Time to lock puss away from the bonfire parties now! All the best.
brannie42 Guest
Posted
Thank you so much for taking the time to comment on my posts and telling me about your experiences with DD. I so appreciate this and you have helped me a great deal. I don't now feel as though I am the only person in the world with this horrible DD.
Your description of your experiences almost mirror mine.
You are exactly right when you mention the questions I need to ask the consultant as it is the acceleration of the DD that has really sent me through a loop. I am in shock and I feel I have nowhere to go.
Yes, I understand that mucus is part of a normal stool but not usually seen with the naked eye. I get bloody mucus mixed in and this happens a few times a month, usually with some niggles or cramps but can happen when pain free. Is this from chronic diverticulitis? I had biopsies taken which came back normal. It's all such a puzzle and I need this explained. So if I get a chance to see the consultant again I will make a list.
I hope your niggles go away again and come to nothing. If it is inflammation that causes these twinges and pains then isn't that a mild form of "itis"? You are obviously on top of the situation. I do the same and really cut down on anything that can worsen the symptoms for a few days. So far I have not needed antibiotics but I realise that can change at any time.
I have a precious cat, too. Fortunately, she isn't afraid of loud noises but I do feel for the wildlife, farm animals and many pets who are scared. We seem to have fireworks in the UK for any event these days so you can't always predict when they'll happen.
Hugs x
Guest brannie42
Posted
Hi Brannie
I'd ask your doctor about the blood, but I've been told it can be any of the things I mentioned, including diverticulosis. I've always been told "itis" for infection and "osis" for inflammation. Diverticulitis and Diverticulosis come under the blanket heading of Diverticular Disease or DD for short. Not only does DD include the pockets, but also the thickening and narrowing of the colon. The niggles subsided but are playing up this evening. I need a bit longer on fluids I think. I got out some of my home made squash and red pepper soup and I'll be having that tomorrow. We've had fireworks for the last 3 nights somewhere in the village, but puss seems OK with them. She's only been with me a month and still adapting. I enjoyed the displays in the sky!!
brannie42 Guest
Posted
I really hope you get the pains under control. You are resting the colon so any inflammation should subside in due course....that squash and red pepper soup sounds yummy and very good for inflammation, I'm told.
I did think that you could get diverticulitis with or without infection and you can have symptomatic diverticulosis (without inflammation)that causes symptoms similar to IBS ??? Still a bit confused about it all. I know so many people who have asymptomatic diverticulosis diagnosed with routine colonoscopies or barium enemas.They look blankly at me when I say how much I have suffered with DD over the last 5 years.
Is your little cat a rescue? Our little angel has been with us for 2 years, she's 4 and was badly abused by previous owners. She came to us from the shelter after spending a year at the vets' for a broken pelvis, jaw and ribs. She's a little princess now and she will never be hurt again....pampered to within an inch of her life!
Keep up the fluids, I'm sending healing vibes and hugs!
X