Recently diagnosed- recovery time.
Posted , 7 users are following.
Hello all. I've recently had a diagnosis of D/D after a hospital admission and cannot believe how tired and " out of sorts" I feel. Is this normal and how long can I expect to feel like this? I am presently off work as I do not have the energy to do a great deal.
I've been reading through various posts and have to say the information is greatly appreciated.
Kind regards.
Moira
West Yorkshire, England.
0 likes, 25 replies
Guest moiramc
Posted
Hi Moira
Yes it does knock the stuffing out of you. If you were admitted I expect you had antibiotics and they can have quite severe long lasting side effects. You need to take things very slowly, drink plenty of water, follow a low fibre diet (but see next) and get lots of rest. Also, although you are advised to follow a high fibre diet, it needs to be solubIe fibre, and you should only start to build up the fibre gradually as you recover. Many of us, myself included, take the daily soluble fibre supplement Fybogel, which my GP prescribes.
I expect you are also still in pain, and have altered bowel movements. All this will take time to settle, as your insides heal. I had my 1st attack 16 years ago and 2 further attacks over the next 10 years. Each time it took about a month. There is a good post from about 8 months ago, by julia1040 about diet. Also under Related Information, the paper on Diverticular Disease is very comprehensive.
There are no hard and fast rules, we are all different, and each of us has had to find our own solutions. That's why the GP/Hospital information is so vague. The real experts on this disease are on this forum. My own GP remarked that I knew so much about it she thought I had a medical background, but I don't!! I kept a food diary and worked out that I can't eat gluten or high fat (no more Ben and Jerrys ice cream - sob, sob). For others it is nuts, seeds, popcorn, dairy, red meat, skins - all sorts of things.
As for being off work, I didn't take time, and remember being doubled up over the photocopier, and spending a lot of time in the loo. One post recently the person reported they had to go back to work after 2 weeks but did not really feel ready. It depends on how you find your employer (these days it's mostly unsympathetic). I'm just glad I'm now retired and can rest when I need to. Best wishes.
moiramc Guest
Posted
Hi Felinia. Many thanks for your reply. Yes, I was on IV antibiotics for 36hrs and then discharged home with 7 days supply. I've been really careful with my diet for many years as my G.P said I had IBS but am finding this forum very useful re diet tips re low residue diet and what then to eat. It's the fatigue I'm finding difficult to handle as I thought I was a healthy 58 yr old but am now thinking I'm not!
Thankfully, my employer is very sympathetic- I work for social services in my local hospital and could not do my job the way I feel at the moment!
I'm waiting for an appointment to have a sigmoidoscopy so will hopefully have a better idea after that, here's hoping! Best wishes.
Guest moiramc
Posted
Hi Moira
I'm sure your colleagues will tell you that over 50% of all people over 60 have this disease. You are in the right place to get information. If you are like me, you won't have another attack for years and maybe not at all. I too thought I was fairly fit - I played competitive sport into my 60's and did a lot of walking. People hit by this for the first time are surprised by how long it takes to get over an attack but you will feel better in time, once the antibiotics are out of your system after a couple of weeks. Normally you have to wait at least 6 weeks to allow the insides to heal before an endoscopy, but by then you should be fighting fit again.
susan95516 moiramc
Posted
Hi Moira. I was like that at Christmas I spent nearly a week in bed I couldn't do much at all To answer your question every one is different but from what I have read on here most people who have a flare up feel like you Hopefully you feel better soon
I also live in West Yorkshire x
moiramc susan95516
Posted
Hi Susan. Thank you for replying.. it's good to know that I'm not alone with this awful DD and fully sympathise with those suffering with it. I'm really glad that I found this forum!
My G.P, here in Huddersfield said it's just a matter of time and " not to rush"... difficult not to though with the busy lives that we lead. Best wishes.
madeline27614 moiramc
Posted
moiramc madeline27614
Posted
Many thanks Madeline. I'm being really careful about what I eat and have found this forum really helpful in the guidance that is given.
madeline27614 moiramc
Posted
I have found this forum to be so helpful. For the longest time I thought I was being a hypochondriac. You have to walk in someone's shoes to know our pain and fright. Xo
amia1 moiramc
Posted
Hi Moira. I'm in the same boat as you and others following a sudden, out of the blue, admission to hospital in Feb this year and being diagnosed with acute D/D. I'm finding the fatigue element quite overwhelming. Reading everyone's posts is very helpful to me. I'm seeing a specialist dietitian at the hospital next month and consultant so I am going to ask more about the fatigue and what, if anything, I can do about it. Doubt there is much they can suggest. Seems as if it's symptomatic of this condition, but being this tired is very frustrating after being so active before I was diagnosed. I wonder what everyone else does to try and combat this?
Guest amia1
Posted
Hi
Sorry to hear it is taking so long to get over this - it is normally 4 - 6 weeks for the pain to go and to feel more normal. I'm glad you are seeing a couple of specialists, as you might have some kind of food intolerance. But have you considered that it might be something different like a viral infection on top of the DD? I know when I caught a bug last year (plane trip back from Tenerife) it took me over 3 months before I felt normal again.
Otherwise all I can suggest is to try and take it as steady as possible - not easy with today's busy lives. I hope others may have better suggestions. Best wishes.
susan95516 amia1
Posted
Hi amia1 I saw consultant a couple of weeks ago he wants me to have blood tests for celiac because I don't seam to tolerate many foods I am back trying fybergel I think it takes about 2 weeks to settle. I used to go out every day to meet up with friends I cycled to and from work I nursed but now I get so tired I don't want to do much. I am going out for lunch today It's my daughters wedding in 3 weeks so been told if I need to I can take Imodium the day before to help me. I hope you get the answers you need and feel better soon
moiramc amia1
Posted
Hi Amia. Just wondering how you are coping with the fatigue? Do you go out to work? It's 5 weeks since I was diagnosed with DD and I'm still horribly fatigued! I've followed advice from this forum re diet etc which is helping me to a degree but it's knowing how to best deal with the fatigue... I'm resting and getting out for a walk every day but that causes tummy and hip pain! Any advice would be warmly welcomed. Many thanks. Moira x
amia1 moiramc
Posted
Hi Moira - yes I work full time but think I may have to re-think the job I have due to this tiredness. I guess as you've only been diagnosed 5 weeks ago, it's very early days. I was given multivitamins by my doctor but they didn't agree with me. He thought they might help with giving me more energy I think. I know when I was in hospital they told me I would need to rest a lot more than I do and I've made a conscious effort to stop taking on lots of things at home. It is helping to some extent but still have this dreadful tiredness. I will see what the dietitian says next month. I'll try anything to help this get better. Sounds like the rest you're doing and the daily walk is really positive but as you're getting the hip and tummy pain, perhaps it's a bit early to do the walking. Perhaps just walk twice a week then build it up. From what I read and there is so much info to take in, it seems controlling our diet, drinking 2-3 litres of water p/day and resting much more, is the way forward. I find this forum so helpful to talk to others who know how I feel. Thank you to Felinia who's posts are full of really helpful details and I'm starting to get my head around this condition. Not sure how well I'm doing at managing it, but staying positive and doing as much as you can to change to new ways is my main focus now. Had my sons engagement party last night, it was a fight to stay awake and keep smiling! Hey ho .... positive thinking .... we can do this. It's great being able to share our thoughts through this forum.
tracey69393 moiramc
Posted
I have been told that i have had DD for probably the last 15 to 20 years although i was always told it was IBS but have been bent over with pain many a time during this period I have had a nasty infection on and off sine Feb this year and it has completely wiped me out. I only work part time but took 6 weeks off work before staging a return to work although i am still struggling with that. I know during this time i was also anaemic which didnt help as i was advised not to take iron tablets for obvious reasons. I was just wondering if you have had a recent blood test?
moiramc amia1
Posted
Many thanks for replying Amia- I find this forum a real help; it's reassuring to know we are not alone with DD!
I asked my G.P about an appointment to see a dietician but she looked at me as if I was stupid! Please let us know how you get on.
Kind regards.
susan95516 moiramc
Posted
I am speaking to a nutritionist on Wednesday then seeing her in September. I have to pay my DR doesn't seam to want to send me it would take weeks to see one on the NHS
amia1 moiramc
Posted
I'll post the details from the dietician once I've seen her at the beginning of August. Thought I was doing ok with the diet, water and doing less but 1st flare up since I was diagnosed in Feb with DD, started last Wed and began taking Cefalexin 250mg but condition worsened and yesterday my doctor prescribed Metronidazole 400mg and Co-amoxiclav 500mg. Signed off work for 2 weeks. If no improvement in next few days I have to go into hospital but am following the guidance so hoping to rest at home and get on top of this if I can. It can't be this hard to manage this can it? With all the things in life we all cope with on a daily basis, DD is more complex than I realised but am determined to stay positive and get on top of this as much as possible. Silver lining - weight's dropping off but would rather not have the severe pain.
amia1 susan95516
Posted
Hi Susan - it'll be good to hear how you get on with the nutritionist and what food/diet is suggested. I'll post update from the dietitican I'm seeing, at NHS hospital, at the beginning of August. The letter I've had from the dietician, ahead of the appointment, asks me to keep a week's food diary before the appointment and states she will be able to work with me to prepare a food schedule and eating plan. At 54, I didn't think I'd need to be told how and what to eat! Oh well, it'll be interesting to see how this goes.
susan95516 amia1
Posted
susan95516 amia1
Posted
Sounds good The dietitian I am seeing in September is speaking to me tomorrow just to see if she is the right person for me So I will post if she says anything constructive. She is exspensive but my GP doesn't seem to want to send me down that road
moiramc tracey69393
Posted
Hi Tracey. Thank you for your comments. Are you feeling any better? I, too, work part time, have been off work for 6 weeks and don't yet feel well enough to return- the fatigue is hard to deal with and I still get pain which goes into my hip and makes it difficult to walk!
I had a blood test recently which only showed up vitamin D deficiency which I guess most of the population has, these days!
tracey69393 moiramc
Posted
Apologies I have only just seen this. Unfortunately not feeling any better. Seems to be going on forever and absolutely exhausted. I have seen the surgeon now and am scheduled for 9th October. Still have low grade infection, inflammation, stricture and fistula. How are you feeling now? Have things improved with you? x
moiramc tracey69393
Posted
Hi Tracey.
Good to hear from you... sorry you're not any better. I've just returned to work after 12 weeks sick leave but struggling- my energy levels are grim and I'm fed up of not being able to eat! Living on a bland diet which seems to suit me as when I introduce other food stuff my gut goes off and I need to be near a loo!
Also, still waiting to see the consultant. Happy days!! x