Posted , 6 users are following.
I've had 2 hospital stays since diagnosed in October last year. With 5 flare ups Inbetween. My consultant has told me to now have a low residue for 6 weeks with follow up appointment in 8 weeks. I'm concerned that I might end up with a stoma. Has anyone else had to go on this diet or had surgery for stoma.
0 likes, 10 replies
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angi1 teresa46400
Posted
Hi Teresa. I had the op 5 weeks ago. I didn't plan on a stoma but because of infection I had to have a temporary ileostomy. I can honestly say that after the initial shock I haven't been too bad with it. It does take getting used to and I was convinces everyone could tell I'd got one but the fact that I'm mostly pain free and can make plans without worrying about cancelling at short notice it's a small price to pay. Please think of your health long term and if they think that is the best way forward for you I would go for it. It's given me a new lease of life I just didn't realise how bad I was until now. Good luck xx
jackieann3 angi1
Posted
Hi Angi I had my operation 6 weeks ago and got a temporary bag I am struggling with it at the moment can't get used to it and have been very depressed but as you did say it takes some getting used to , I've heard some people who can have there operation reversed choose not to I don't know if it'd because you don't get anymore problems if you have a stoma was just wondering what you thought about it and are you going to have yours reversed xxx
angi1 jackieann3
Posted
There are times when it gets me down too jackieann3 My surgeon is planning to reverse it in about 6 months I think with an ileostomy there are health issues that can pop up which is why they tend to want to reverse it. It is really a no brainer for me but everyone is different. Same as having the op in the first place, some people thought it was a difficult decision but really it wasn't. Yes deciding to have major surgery was hard but the alternative being in pain 24/7 well it was so easy. Good luck and if you need to talk to anyone please give me a yell. Gentle hugs xx
jackieann3 angi1
Posted
Thanks for your reply angi yes not being in pain anymore is I'd just lovely (I had a blockage because of diverticulitis ) I've got my first hospital follow up appointment this Friday I will have a chat about it with the doctor it's the thought of going back into hospital as well with me I'm 57 and never been in hospital before let alone have major surgery think it's put me off for life , I wish you a speedy recovery angi and I will get back in touch if I need to talk thank you xxx
teresa46400 angi1
Posted
Hi angi1
thank you for your reply. You sound very positive. It's so hard living with this disease. Needing to cancel events at short notice and almost living on antibiotics is a nightmare.
Ive always thankfully been healthy apart from a few now resolved gynae issues so all this has come as a bit of a shock.
I must admit at times I've wished they would just take the whole B....y lot away and give me back my life but it wasn't until the Registrar mentioned it as a possible reality that it's starting to sink in. I won't obviously know for a while yet if it's even going to be the case. But you have made me look at it in a more positive way. Thank you
x X
angi1 teresa46400
Posted
You're welcome Teresa If you want to talk just let me know. Good luck xx
teresa46400 angi1
Posted
linda346 teresa46400
Posted
Hi there. I have been on a low residue diet for 5 years. I have a lot of diverticula pockets and now have a narrow colon, I researched and found a lot of people went on this diet for a few weeks while they were recovering from a flare but thought I would try it every day and I find it really works well, in fact my consultant said that many patients really shouldn't eat fibre especially if they have a lot of pockets which is the opposite of what doctors usually tell us! I eat white pasta, white bread, tomatoes, cheese, pizza (white base), chicken (was told never to eat beef, pork or lamb as they are too fibrous) and I can eat salad but just leaves, tomatoes and cheese, no coleslaw or potato salad as I can't eat any root vegetables as they cause wind (gas) and aggravate the pockets. Obviously everyone is different and it does sometimes take years before we realise what suits us or what doesn't suit us. Also medication can be a problem as I have had bad flares and lost a stone in weight simply because I was put on different medication for my heart. I know I can't ever have co-codamol or morphine (causes constipation) so after my heart op I had paracetemol for the pain! I take 5ml lactulose stool softener morning and evening and this too really helps. It's a horrible disease and if you have the op I wish you the very best.
MeilyMeils teresa46400
Posted
My husband and I both have diverticulousis, and have had many attacks in the years, I am [so far] able to keep my Flare ups & infections at a minimum, but I am sorry to say my husband could not ,He had to have his Sigmoid colon removed, Good news is he feels much better, he suffered for over a year with what the thought were just infections or flares and found he had abseces & his colon had become deasesed , Please find a Good Gi, and have a Colonoscopy to rule out those things, If you live in NY, Long Island I can recomend our doc, but you can go on line, to the medical board certified doctors in your area, look them up on any site you can find input on them, I think it is best if they have been certified in the last 5 years, there have been a lot of advances in the field , I use a low residue diet when I get a flare up, each person is different, how long you should do that should be geared to your specific metabalism, but I really don't think it sounds right to wait for 6-8 weeks for a follow up , Where you diagnosed with diverticulitis, did they do blood work, & a cat scan? I don't know what a stoma is but, it just does not sound right that they are making you wait so long for a follow up, I hope you get the help you need.
MeilyMeils teresa46400
Posted
Hi again Teresa,
At my insistance, that the medicines where not working, and it could not be right to live on anti biotics all the time for over a year, he got a colonoscopy and was told to find a surgeon, because that caught it in time, and we found a Great Surgeon he had elective surgery, it was laproscopic, he did not have to have a bag, and he was fully recoved in 3 months, except for a bit of scar tissue that caused him some pain & discomfort because it was where his pants & belt buckel leaned on the scar, and they thought they might have to go in and have it removed but it disapated on its own, and although he has to take fiber every day & watch his diet or he can have discomfort and some times a little pain, but as soon as he gets thinks moving & his digestive track back on track he is ok, I hope you can get the help you need,and if you want I will answer any question that i can.