Diagnosed with Diverticulitis - advice please
Posted , 9 users are following.
After thinking that I had IBS for two weeks and in a huge amount of pain, I rocked up at the doctor to be told that I have diverticulitis. That I would now have it for life and would 'soon find out what suits me and what doesn't.' When I asked for more info I was told to 'Google it.' There has been not mention of a colonoscopy (thank goodness) or further treatment once I have finished the antibiotics.
?Sounds stupid I know, but does this mean I have Diverticular Disease? How often do people have flare ups? What sort of food should I avoid? Do people get signs of it up front, and is there anything you can do to head it off? I do not want to get things out of perspective - but don't want this to control me. Please help
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0 likes, 28 replies
corey6391 helen50937
Posted
Hello Helen, I'm so very sorry you have this dreadful disease. You have already got some pretty solid information from some of the more knowledgeable people in this forum. I just want you to know that you are most definitely not alone. I have had this mess for 3 years that I know of, mine flared up at least 5 times before I ever went to the Dr the first time. The first time I went to the Dr with it I had been hurting bad for 2 weeks and it would not go away, I became dehydrated and passed out as soon as I walked into my house after work one day. From now on every time you think it may be flaring up go to the Dr, do not wait. I caused myself irreversible damage from being stubborn, no better yet, I was being stupid. This will no doubt change your lifestyle, I'm not saying you can not go on vacations and things of that nature but you are going to have to pay close attention to what you eat. I can't believe they didn't do a colonoscopy on you, I know it seems bad but they are not that bad at all. It will show exactly what you're up against. For lack of a better word diverticular disease sucks, if I hadn't of been so stubborn mine could have been controlled. I'm not trying to scare you by any means but I am a 26 year old male and today at 8am I had to have surgery and they took out my entire sigmoid colon and part of my decending colon. A total of 16", I'm lucky bc they were able to reconnect what's left back to my rectum so I will not have to use a colostomy bag. I'm not out of the woods yet, where it is reconnected could leak and I could have to do another surgery. As far as what you can and can't eat is a tough question, some people can eat stuff others can't. There are some pretty good diets in this forum and I assure you this is the best forum out there for this. A lot of people have had good results with drinking fibre supplements, I'm from America so the names are different on brands so I can't really suggest a brand. I understand that right now you are on a mostly liquid diet, I know its hard to stick with that but it is crucial that you do so to give your colon the proper time it needs to heal. Once you start reintroducing things to your diet you are going to want to start a food log. Every new thing desperately needs to be recorded, things that cause you problems will have to be crossed out bc they will probably always cause you problems. I have not eaten steak in 2 years, but I can eat hamburgers. Another thing is try not to eat anything in high quantities. It was widely said that you are not supposed to eat seeds or nuts with this disease, but recent studies have some conflicting results. However I generally try to stay away from things that are known to not digest well, like peanuts and corn. A colonoscopy is nothing to be scared of it takes 30 minutes and you are asleep the whole time, and afterwards you can't really tell anything was done. I was very nervous about it too, I almost didn't even do it. After it was done thats when they found the irreversible damage I had done to myself for waiting and putting it off. Many people successfully manage this for 20-30 years with minimal flare ups. I would give anything if I had of went sooner. Sorry for this being such a lengthy post. I wish you the best of luck Helen, and you have a whole forum of people here to help you with any information you need.
Guest corey6391
Posted
Thank you for making this post and being so honest about your condition and experiences. It will be invaluable to people who join this forum. I wish you a very speedy recovery.
susan95516 corey6391
Posted
Well said I think you covered everything. They don't put you to sleep for a colonoscopy in the UK. But I had sedation and gas and air and didn't feel a thing. I like you put it off for a long time I even rearranged one colonoscopy because I had been told some horrible stories. It took abou 30 minutes you go to recovery once you finished there you go and have a nice cup of tea and a biscuit. The nurse then talks to you about what the dr has written down. I had 2 polyps taken but was assured by the dr they looked fine. I was given a photo and information about my DD I had multiple.
helen50937 corey6391
Posted
Many thanks for your post, it is invaluable to me as I know it will be for others. Firstly I hope that your operation goes/has gone well, remember your advice to me and give yourself time to recover. After the advice from you and others on this site, I will go back to my doctor in a couple of weeks and ask them to refer me for a colonoscopy so that I know what I am dealing with - even though as some people point out they carry it out under a local anaesthetic here in the UK.
I just cannot thank you and the other people on this forum enough for all of you advice and support. It has been so helpful - you are all just amazing.
Thank you all for your support.
corey6391 helen50937
Posted
You are welcome. If someone told me that the first time mine flared up I may not have needed surgery. I'm really to young to be going through this. I'm 26 years old and have a 6 year old daughter. My wife is in nursing school and does not have a job, and I'm going to be out of work 6 weeks. Life goes on though, I'm not worried, I'm hopeful that my life goes back to normal. You should download an app for your cellphone that keeps track of what you eat. I used myfitnesspal to help keep my macro nutrients balanced, it can be rather difficult with DD. That particular app keeps track of fibre intake too, that alone has helped me. It is great news that you are going to talk to your Dr about a colonoscopy. I'm happy I could help and I hope others read that and it helps them too. Diverticular disease does not play around It can perforate and release the contents within your colon out into the open stomach cavity. That can start shutting down internal organs. One time I had a flare up and the infection spread to my blood stream. That was a rough few weeks. Once again I'm not trying to scare anyone, but this is an awful disease. You can live your life and not let it control you, but you have to respect it and be mindful of it at all times or it can control your life. If you have any questions feel free to ask.
Guest helen50937
Posted
Hi Helen
Just one small rider to Corey's post re colonoscopy. In the UK you are never given a general anaesthetic, only gas & air or mild sedation. It's to do with the possible risks of a general anaesthetic and the recovery period. Many people have no problems and say the prep is the worst part. But it is still the definitive diagnostic tool.
corey6391 Guest
Posted
I did not know that. Thats interesting, and quite honestly a better way to do it, general anaesthetic can always have high risks. Felinia you are one of the first people I talked to on this forum. I made a post freaking out bc I had no idea what I had or why I had it at 24. You along with several others helped me out tremendously. I had just been stubborn to long and my sigmoid had been narrowed by scar tissue to the point where nothing passed by with out some being pushed into the diverticulla. I went a year with no problems. Then it flared up last July and I guess it was the hump that broke the camel's back. Bc after that it flared up in October, December , and January.
helen50937
Posted
Dear all, you gave me some really sensible and positive advice a couple of weeks ago. I hate to sound sorry for myself, when you are all living with this condition - and I am sure that some people are far worse off than me. However, I am really struggling to get back to anything like normal. As previously stated I was diagnosed and had a couple of different antibiotics about 3 weeks ago. I stayed on liquids for a few days followed by a low residue diet. I introduced a small amount of fibre and had another flare up. Back to liquid diet, low residue diet. Then got a UTI and given more antibiotics. Constant dragging pain that feels like I need the loo constantly - don't feel like I can go out as I have had a few accidents. Tried just a few runner beans with mashed potato a couple of days ago and had another major flare up - up all night in so much pain. Back onto a liquid diet. After three weeks I am still not back at work (my journey is 1.5 hours each way) and they are understandably not happy. I am now thinking - is this what my life is now going to be like? Sounds pathetic, but I am so low and getting weaker and weaker. I have been to the docs four times in the last 2 weeks - but they seem to know little about diet.
Sorry to sound such a misery, please help.
susan95516 helen50937
Posted
I am really sorry you are going through this. The DRS don't seam to know much at all about diet or DD. I stayed on liquid only for 3 days to rest my colon then I started with very bland food. Fish mash soup jelly Once I felt better I added other things like fyber I now take fybergel mabevarine and a probiotic tablet everyday. But if I feel off it. I stop the fybergel for a day and that seams to help me. Everyone is different it's trial and error. You need to keep a food diary then you will see what foods cause you pain. Maybe you went onto fyber and solids a bit to early. I hope you feel better soon
Guest helen50937
Posted
Unfortunately for some people it does take much longer to get over an attack. 3 weeks is actually a very short time, and yours was complicated by your UTI. The nagging pain usually takes 4 - 6 weeks to go, but can last for months, slowly decreasing in intensity and frequency. The medication will have stripped out all the good bacteria that helps you break down and digest food, along with the bad bacteria. I hope you are taking probiotics to help put good bacteria back. Mash should not have troubled you (hope you didn't load it with butter and cream). I never had a problem with runner beans but perhaps that's one of your trigger foods. But what did you have with the beans and mash. If it was meat that could be the cause. I didn't allow myself to be trapped indoors - I took pads, spare pants and wet wipes in plastic bags and just started with small trips to gain confidence. As you are not eating much that is why you are feeling weak, together with the side effects of the pills. It does get better though, although it seems like it never will at first. Are you taking pain killers like Paracetemol, and an anti spasmodic like Mebeverin to control the cramps? Suggest you start keeping a record of all your symptoms, medications, doctors visits and pains, just in case your employer gets difficult. You might like to download the article on Diverticula Disease from this site, and give a copy to your employer, so they have some understanding. It would take them longer to recruit and train someone to replace you than for them to give you a bit of flexibility. Hope you fell better soon.
helen50937
Posted
Hi, I am taking the H&B probiotic tablets with pectin that were recommended on Divi Diners. I just had one small sausage with the mash and runner beans.I will get some fybregel tomorrow. Where do you get the Meberivan from, I have not heard of this - but am happy to give anything a try. Thanks for the advice - you are all keeping me going
susan95516 helen50937
Posted
The DR will give you mabevarine. I can't eat sausage red meat is hard to digest so I stick to chicken turkey and fish