DIVERTICULITIS : Hi, You many remember a... - IBS Network

IBS Network

47,322 members15,524 posts

DIVERTICULITIS

pump321 profile image
41 Replies

Hi, You many remember a discussion we had about a SeHCAT SCAN and that I was unable to have it done due to allergic reactions. (I am going to ask if they can do a blood test instead of the SeHCAT SCAN) . Although my stomach actually quietened down and became almost normal it has now flared up again and I am feeling absolutely terrible. Having been diagnosed in the past with Diverticulitis I am wondering why I have not been treated for this as I have now been ill for four months and am getting really weak now. The diarrhoea is knocking me out and I am so fatigued I have to rest and sleep most of the day. When the last blood tests were done about a month ago my Gastroenterologist said there was no infection present therefore he couldn't give me any antibiotics and it was unlikely to be diverticulitis. I am seeing him tomorrow again and I am wondering if any of you think it is reasonable for me to ask him again for antibitoics. As all this trouble started in January with an inflammatory stomach infection problem and high a temperature, I was given a short course of two sorts of antibiotics then and just as they started to work the course finished. A week after the antibiotics finished I went downhill again and had a blood test which showed low level infection and blood in my urine but I was not treated with any more antibiotics, so I have now been ill all this time with no treatment and getting worse. I am not losing weight and my stool tests all came back normal. I hope all this makes sense. I am feeling quite weak and not thinking very straight. Any help would be much appreciated before my appointment tomorrow. Many thanks indeed.

Written by
pump321 profile image
pump321
To view profiles and participate in discussions please or .
Read more about...
41 Replies

Hi Pump,Firstly who diagnosed you with Diverticlitis ,and how can they then say you haven't got it without a colonoscopy. I have a friend with this,and it was only diagnosed through a colonoscopy and she had been suffering diarrhoea for 12mths.

pump321 profile image
pump321 in reply to

Hi Gemini, Thanks for your quick reply. I was diagnosed a few years ago with diverticulitis when I had an ordinary CT Scan but was told it may never cause me any trouble. I now have all the symptoms of a flare up but because the last blood test didn't show up any infection my gastroenterologist didn't see any reason to give me any antibiotics, this was about a month ago when my stomach had settled down a bit. Now I've got diarrhoea again I am wondering if perhaps if an infection is now present again as it was like that in January. It's all rather a muddled picture as I have to keep waiting so long in between visits to the gastro. man and my symptoms come and go but when they are bad like this I really feel quite desperate. I much appreciate your help.

in reply to pump321

I can totally relate to a muddled picture,because as you say you have such long gaps in between appointments,and if your anything like me,you keep having changeing symptoms,then you think they will think your lying.Anyway,what it really comes down to is if you do have Diverticlitis ,it just may have got worse,which would also answer the reason for extreme diarrhoea.So I think you ought to get answers to that firstly. In my experience of seeing the medical proffetionals,I think your best bet is to tell them how you feel,then let them ask questions,don't point them in any direction,let them work it out,

Because otherwise they just follow your lead,and it may be the wrong one. Please let us know how you get on. And good luck.

pump321 profile image
pump321 in reply to

Thanks very much for your advice. It's nice to hear that you understand how complex it is to try and explain to the professionals how we are feeling when we know we only have a few minutes of their attention and they make a quick judgement and that's it. I will take your advice and will re-iterate about the Diverticulitis and tell him how I am feeling and let him decide what is the next move and see what he comes up with.

Thanks for taking the time to get back in touch, I just needed some advice as I can't seem to see the wood for the trees! I've been round and round in circles for so long now. I will let you know how the appointment goes. Many thanks again.

pump321 profile image
pump321 in reply to

Hi Gemini, Well, I saw the Gastroenterologist today and he said my CT Scan did show I have diverticular disease (which I already knew). I listened to what he had to say and then explained how ill I felt and about the diarrhoea I've had lately. I also explained that I had fever and sweats and felt fatigued but he said that would be my chronic fatigue symptoms. He was not inclined to give me antibiotics. I asked for another blood test for infectrion but that didn't happen either, I said I felt worse than the last time I saw him. He said to take Immodium for the diarrhoea (which I have been taking)

Because I cannot have a colonscopy due to allergic reactions to the prep. and I couldn't have the SeHCAT Scan with radio active pill he has decided that he will treat me for Bile Acid Mall Absorption as that is what the SeHCAT Scan was for. The medication for this is : Colestyramine or Colestipol. I'm not sure which one he's giving me as I couldn't quite catch what he said but now I've got home and checked the ingredients of Colestyramine I've discovered it contains Aspartame which I am so allergic to. (That's the ingredient in the Colonscopy prep. that I cannot tolerate!) As for the Colestipol is sounds hard to tolerate so sounds like I've hit another brick wall! I am very disheartened tonight as I can't see a way forward from here now. Just going round in circles it seems. Thanks for replying to me and taking an interest.

in reply to pump321

Oh Wow Pump,I can soooo relate to how you feel,and I sincerely empathise. I wish I had answers for you.

I do suggest you get in touch with your GP,and explain your situation,see if he has any alternatives. It's like a rock in your stomach when you get home,without any hope or solutions,that's happened to me so many times.

One bit of advise I'll give you is don't sit back,and take it,push on and stamp your feet if you have to,I think the way we're treated nowadays is so slap dash.

I see my Gastroentrologist beginning of June,and I travel about 25miles to him,and I have just said to my hubby,I'm sick of feeling this way,so when I see him I'll beg if I have to. But please go back to your GP,even if it's just to complain about your Gastrologist. Sorry I sooo wish you had had a better result.

pump321 profile image
pump321 in reply to

Thanks Gemini, Getting your support has lifted my spirits this evening and given me the will to keep fighting and not give up. Everybody has been so kind and helpful on this site.

I really hope you get on ok with your appointment in June and are able to get some answers and hopefully begin to feel better. Please keep in touch and let us know how you get on. Good luck and fingers crossed for you.

in reply to pump321

Thank you,Pump,I'm not holding my breath.

pump321 profile image
pump321 in reply to

Hi Gemini, Just a quick note. I had the most horrendous day yesterday with chronic diarrhoea, even taking immodium took ages to work and I still felt terrible. In the end I was so weak, shaky and exhuasted and felt so ill that my husband decided to ring 111 at about 7.30pm last night as he was so worried. I think I was a bit dehydrated as I couldn't think straight. I had to drag myself out of bed and go to a little local hosptial to be checked out. My blood pressure was quite high but the Doctor did prescribe some antibiotics which I really hope will calm things down a bit. I was knocked out by the time I got home and crawled back into bed. I didn't think I would ever end up in this state, what a problem it all is. Do you have this kind of problem?

in reply to pump321

Hi Pump,wow,once again is all I can say.

I've had years of this problem,not diarrhoea ,but going back and forth with the two. I also don't have your problem with Diverticlitis,but I do suffer horrendous stomach pain daily,gradually gets worse as the day goes by. There must have been something in the air last night,because I had a bad night sass well. I've been through every test,doctor,diet,there is.and I've still got no answers,and like you,I've been to A&E a few times because the pain was to much to bear,but I just get a shot of morphine,and I'm back to square one the next day. I could write a book on my health problems,and the lack of understanding they seem to have. I am with a good Gastroentrologist at the moment, (professor) but even he's scratching his head,I'm sure they think I'm lying at times. Just remember because of your situation to keep drinking,if you get to dehydrated you could be really poorly. At least keep your liquids up. My friend has your problem,but she just seems to get caught out now and again,you've also got the double whammy of being allergic to certain things. I know this is easier said than done,but pump keep pushing on. And if you ever need to chat,PM me,im with you all the way. I hope you have a better day.

pump321 profile image
pump321 in reply to

Hi Gemini, Thanks for your reply. I am so sorry to hear you were suffering last night too. Your stomach pain sounds horrendous, however do you cope with it every day? Whatever can be causing it I wonder? It's something that you have a really good Gastroenterologist, it does help if they understand but you do need some sort of treatment to help you for sure. You would think in this day and age they would have a better understanding of what could be causing your pain. If you've been through every test and diet there is, it's a shame that nothing has come to light to help you with your suffering. I am sure, like me, you must feel pretty desperate at times. It's difficult to know what to eat in case it makes things worse but I expect you probably know now what suits you best if you tried lots of diets. It's so sad that you wonder if they think you are lying, I am sure/and have to hope they know the difference between the genuine patients and the not-so-genuine.

I actually do feel like that as I also suffer with chronic migraine which is a monster I have struggled with for over 40 years. I thought that was bad enough. As I have so many allergies I have to have white pills as the strong coloured ones usually give me a migraine and I always feel quite paranoid about keep asking to change different pills in case they think I'm some kind of nut! I don't want to be labelled as a hypochrondriac because that's the very last thing I am - I do know a few and it's worried me in case the surgery think I am as bad.

I am drinking loads of cooled boiled water today and feeling a lot better than yesterday.

I really hope your next visit in June to see your Gastroenterologist will perhaps shed some light on your terrible problem, I know you are not holding your breath! I expect you have tried all the medication known to man. I wish there was some helpful advice I could give you but you are much more clued up on this subject than I am.

Well, it's so kind of you to reply and such a comfort to know that you and others on this site understand what we are going through. I look at people everywhere and think how normal and carefree they all look. Like you I could write a book about it all and if I don't stop now it may well extend to that, lol.

Anyway, Gemini, take care and hope you have a better day than yesterday too. Bye for now and take care.

in reply to pump321

My words exactly,you would think in this day and age,there wouldn't be so much suffering,but you only have to look on this forum,to see what some people go through. With me I've always been a silent sufferer,so people look at me and think I'm alright. It's got to the stage now where I just say to my hubby at night, " I'm in real bad pain tonight" and he is just helpless to help me,but I just mention it,or even he would think I'm ok. Not much I can do,I just eat the same foods practically every week,for fear of it getting beyond my control.

pump321 profile image
pump321 in reply to

I'm also a "silent sufferer" too as making a fuss doesn't do any good and I've been told by some quite unkind people that nobody wants to hear all your troubles so I learnt long ago never to mention much at all. I've got a few really good friends who do understand to a point but even they have no idea of the extent of it all. I never tell anybody how much time I spend in bed and the only way they find out is when they ring to speak to me and my husband has to tell them I am in bed (I've even told him to lie on ocassions and tell them I'm out as I've felt so ashamed) or if I make an arrangement to go out and cannot make it. Other than that I don't talk about my health. If they could see me sometimes they would be horrified, I just hide myself away and get on with it.

That's why this site is so good because we can actually empathise because we know what pain is like. I think we must be tough people to withstand so much agony but we don't have much choice really. Like you, when people see me out (when I can get out) they think I'm fine. A trip to Tesco about 10 days ago was a major event for me, it was lovely to see the green fields and be out in the fresh air for a short time. Sad really, never mind. At least we can help each other along through it all and support one another. It's good that you tell your hubby when you are in awful pain as I think it's important to be able to tell somebody as it's not good to soak up too much trauma without releasing some of the stress of it all. You can also let go on here to us as we all understand.

in reply to pump321

I'm like you in the fact that if I go anywhere it's a major decision. I have a friend who lives quite a long drive away from me,and I love to see her,and when I'm there I'm ok,but building up to it,stresses me. We haven't had a holiday for about 10yrs,but this year I plan to have a few days away,just for my hubby's sake. But there again I'm stressing so we're not going to book just go on speck when I can get myself prepared for it.

I had a brother who had Ephesema,(so have I now) but this was way before any of my health issues,and he had the doctor in to him one day,and the doctor said to him" I know exsactly how you feel". and my brother said"have you got Emphesema ?" He said "no" so my brother said "well you haven't got a clue how I feel,you can help to treat me,but you'll never know how I feel unless you experience it yourself". And I've never forgotten that, because no one knows what your going through,unless they've experienced it. Rant over sorry.

pump321 profile image
pump321 in reply to

Hi Gemini, I'm so sorry to hear you also suffer with Emphysema, it must be really difficult for you to deal with along with all your other problems too. You really do have a lot to deal with for sure. No wonder you have to really think about what you plan carefully before you embark on doing anything. I completely understand that, everything is quite a challenge even if you enjoy the day out or whatever when you get there, it's still a hassle and a worry about how you are going to feel and will you be ok whilst you are out. Possibly the further away from home the more stressful the idea of it all seems.

I am also sorry to hear how the Doctor treated your brother. No wonder you feel so angry about how the Doctor spoke to him. He had no understanding whatsoever about how your brother was feeling, how could he? He had absolutely no idea how bad he felt. It was cruel of him to say that when he was obviously fit and healthy himself. I'm pleased your brother told him what he thought, it must have made him think and hopefully he didn't ever say it again to anybody else.

I really hope you are able to have a few days holiday, it would be great if you could get away with your hubby. I think just taking off without planning too much would be a good idea. There are so many places to stay these days and it wouldn't be as stressful as booking somewhere and then not feeling like going. We dare not book a holiday in case I'm not able to go. We may do the same thing and just take off for a few days later in the summer when I may be feeling a bit better.

Don't worry about the "the rant", it's good to rant and get it off your chest. We bottle up too much stuff up and it's not good. Really hope you are able to have a few days holiday but try not to stress, just chuck a few casual clothes in a bag and head off as soon as you feel you are able. Even a weekend would be nice. Take care and keep in touch and let me know how you are getting along.

in reply to pump321

Thank you Pump and you look after yourself. You get a few days away as well,just to recharge,I think it would help our hubbies as well,they must get fed up.

Human nature. Take care.

Yes keep in touch.💕

pump321 profile image
pump321 in reply to

Hi Gemini,

How are you doing? I know you have an appointment to see your Gastroenterololgist in early June. Just wondering if you went last week or is it this coming week. I hope he is able to come up with something that may help you with your pain. Please let me know how you get on. Take care.

in reply to pump321

Oh I'm so sorry Pump,it was last Wednesday but I've had such a lot going on. Anyway,he says there's not an awful lot he can do,but try and control the pain.

He says I have a very sensitive bowel,he then proceeded to ask me what I thought would best help,considering I've been on most meds. I told him I can cope during the day,because I'm up and down,but of an evening,when I just want to sit relax and watch TV,that's when the pain becomes unbearable,and I take a5ml Diazapam,I would appreciate it if he would make it 10ml,just to bring my body down,then it slightly subsides. He asked me what my GP thought about them,and I said not very happy,because he's worried I'll become addicted,at my age,I ask you,and he just laughed and he said no one can overdose on Diazapam,it's one of the best medications for bowel disorders,and if my GP has a problem with giving me them,he'll sort it out for me. So really no further on,but a bit more relief. I'm think I've come to the end of the road,I've tried everything.

How are you doing,? And I really am sorry I had another birthday last week as well,so it was hectic.x

pump321 profile image
pump321 in reply to

Hi again, I hope you enjoyed your birthday. I'm sorry there's not much your gastroenterologist could offer you only increasing the dose of Diazepam to 10 mg. It will help your muscles relax in the evening and hopefully help you to cope with the pain. Your gastro. sound as if he's a very understanding and helpful chap.

I have taken 2mg of Diazepam at night for many years to help with migraines and I have never found I have become addicted to them or felt the need to take any more.

I'm still on antibiotics for a few more days and my stomach has settled a bit now. It's not erupting and gurgling as before. I am hoping once the antibiotics stop that it doesn't all start up again.

Well, let hope the extra dose of Diazepam will help you and give you some extra relief. Keep in touch and let me know how you are getting on. Take care and hope you manage to grab a few days away during the summer months.

in reply to pump321

You too Pump,you get a few days away,think we could do with a bit of peace and relax a bit.

God I so wish I could stop all this suffering people have to cope with.

Good luck and take care.

patientj profile image
patientj in reply to pump321

There a difference between diverticular disease (the presence of diverticula, that your colonoscopy would have found) and diverticulitis, which is when bacteria get trapped in the diverticula leading onto infection and inflammation. A blood test would probably show indicators of infection, so if your doctor hasn't seen that, he probably couldn't diagnose diverticulitis and wouldn't give antibiotics.

I'm not a huge fan of prescribing antibiotics unnecessarily, but if you think there's a link between you coming off them the last time and then the symptoms recurring, perhaps raise this with your gastro. Maybe something along the lines of: "I noticed my symptoms start to improve as I was coming to the end of my last dose of antibiotics and then they returned a week after the treatment ended. Do you think my current symptoms could be because the infection hasn't completely cleared up?"

However, it's worth bearing in mind that antibiotics may help to alleviate IBS symptoms temporarily because IBS can sometimes be caused by the natural byproducts of bacterial digestion. If you're taking antibiotics for something else, this might temporarily kill off some of the bugs in your gut so you don't have the symptoms for a short while until the bacteria repopulate. Equally, it could have been the antibiotics that altered the bacterial balance in your gut leading onto the IBS symptoms you continue to experience.

Traceyst profile image
Traceyst in reply to

Hi I have chromed disease and diverticulitis I had a bowel resection last year and I have had the runs ever since. I saw my go yesterday and he said I need to see my surgeon again as the pain in my upper abdomen is back again.

pump321 profile image
pump321 in reply to Traceyst

Oh dear, so sorry you hear you are still having problems after your bowel resection. I do hope you are able to get some help when you go back to see your surgeon. Good luck.

Traceyst profile image
Traceyst in reply to pump321

Thank you x

pump321 profile image
pump321

Thanks very much for the information. I will mention tomorrow about how my symptoms returned after the treament ended in January and see what the my gastro. says. It certainly is a very difficult situation for sure. I certainly hope that something can be done as my life is on hold at the moment and I don't feel well enough to do anything. Many thanks for taking the time to answer my queries. Much appreciated.

ibs2004 profile image
ibs2004

hi pump321 i was dianosed with diverticlitis about 6years ago now when i had a colonscopy and they found out i have ibs aswell i have tride all the stuff prescribed from the gp but nothing works all it dose is make my stomach worse enven paracetamol upset my stomach the best thing i have found is co-codamol with codeine and i have also found that vinagar or anything with vinegar in is defo something thats flares my stomach up i just thought i would mention it to you incase you cutting vinegar out helps your stomach all the best and please keep me informed if it helps you jeff

pump321 profile image
pump321 in reply to ibs2004

Hi Jeff,

Thanks for getting in touch, it's very kind of you. I'm very sorry to hear you too have been diagnosed with diverticulitis and IBS, it's certainly a horrible problem. I have cut vinegar out of my diet and many other things, just living on chicken, potatoes, peas, soup and toast at the moment. I am now going gluten free and giving up diary to see if it helps. Although I have been tested and I'm not a celiac but apparently but wheat can still be a problem I'm told. I stopped taking Ibuprofen and naproxen in January but can still take paracetamol. I cannot take co-codamol or codeine as I have chronic migraine as it makes them worse. I see the gastroenterologist this afternoon to get CT Scan results so hoping he may come up with something but not holding my breath! Many thanks, Marian

ibs2004 profile image
ibs2004 in reply to pump321

hi marian i have tride the gluten free and the fod map diet neaver worked for me also getting stuck in trafic jams makes mine worse so i am thinking of asking my gp about an apointment with a hypnotherapyst to see it it would help but it certanly helps having a site like this one letting you know there are others you can talk to and discuss your problems with anyway best of luck with your appointment and please keep intouch if you want to talk more best of luck jeff

pump321 profile image
pump321 in reply to ibs2004

I have thought about the FODMAP diet but not pursuing that at the moment. Funny you should mention Hypnotherapy, I'm also thinking of going too. I've had an extremely stressful life which I'm sure eventually brings on a lot of these problems. Because I've always been a strong person and dealt with everything life throws at me I think my body has suffered more than I realised. This is a wonderful site and has helped me so much just knowing that there are so many others out there all struggling along too and willing to share their experiences, information and advice. Having spent so much time in bed since January either with chronic migraines and this IBS type problem, it's been great to log on and find some kind soul has sent me a message and some helpful information. I've learnt such a lot, thank goodness for HealthUnlocked. Good luck with the hypnotherapy, let me know how you get on if you go.

Marian

Buffafly profile image
Buffafly in reply to pump321

Hi Marian, first of all my sympathy😘 I have diverticular disease and have had a bad flare up of diverticulitis this year after years of 'IBS'. So I have done a lot of research as I have only got an appointment to see my consultant end of July! According to the leaflet she sent me and other info I have gathered antibiotics are not helpful/necessary unless you have a fever and other symptoms. The general advice seems to be to follow a liquid diet for a couple of days followed by a low residue diet which is very boring but worth it. Then introduce fibre very cautiously. My friend told me I should follow a very high fibre diet even if I had constant diarrhoea as she did but she had to have a large portion of her bowel removed afterwards so I don't think I'm going with that 🤔

pump321 profile image
pump321 in reply to Buffafly

Hi Buffafly, Thank you for your sympathic message and information. I am very sorry to hear you too have diverticular disease and have also had a bad flare up this year. I am being careful what I eat at the moment and it is a very plain and boring diet but it's worth it to try and calm things down a bit. I hope your appointment in July goes well and you are able to get some relief from your symptoms. It's worth researching and this site is also very helpful too, we are lucky to be able to share so much information with one another, also it's very comforting to have so much support which I much appreciate. Good Luck and thanks again.

elenarosa profile image
elenarosa

maybe, in the meantime a good probiotic might help.

pump321 profile image
pump321 in reply to elenarosa

Thanks elenrosa, I am taking Acidophilus Extra 10 again to see if it helps. I stopped taking it a while ago as I wondered if it was making things worse but I'm back on it again now and hope it will help.

Firinne profile image
Firinne

I was diagnosed with diverticulitis 15 years ago and have had many attacks. They usually resolve with antibiotics but it's always a waiting game till the next time (which can be anything from a month to over a year). I use probiotics and most recently, grapefruit seed extract. It does actually seem to be helping - I felt the twinges 10 days ago and upped my 'maintenance' dose of gse from 10 drops of in a glass of water once a day to 15 drops in a glass of water 3 times a day. I know a lot of people think anything to do with grapefruit affects certain medications but the seed extract doesn't appear to. I am hypothyroid and take levothyroxine and don't feel any different on the gse. I've been taking the 10 drops a day since January and it's kept my bowels in good order. Since this latest scare, after a few days on three times a day, I've dropped again to 15 drops twice a day and am cautiously optimistic it's working. Maybe worth a try for you, pump321? I use Higher Nature gse, by the way.

pump321 profile image
pump321 in reply to Firinne

Hi Firinne,

Thanks for getting in touch. I was interested to see you have had many attacks of diverticulitis and they are usually resolved with antibiotics. Although my Gastroenterologist confirmed again today that my CT Scan has shown up that I do have diverticular disease he is not prepared to give me antibiotics although I am absolutely certain I'm having a flare up of Diverticulitis at the moment.

Instead he's gong to treat me for Bile Acid Mall Absorption (it's just a shot in the dark as I cannot have the SeHCAT Scan due to allergic reaction with the radioactive prep. I have to take which gives me chronic migraines). I have just looked up the ingredients of the treatment he is advising and I am also allergic to that as well! It's a nightmare really, I am just one of those people who are so allergic to Aspartame and many other substances.

I note you are using Grapefruit See Extract which sounds as if it might help so thanks for that information. I am also taking pro-biotics which I am hoping will calm things down. I may go back to see my GP if all else fails and see if he will prescribe some antibiotics if this carries on much longer. I am finding it very difficult to live like this. Many thanks again for your very helpful information.

Firinne profile image
Firinne in reply to pump321

I really do sympathise. It's so painful and frightening at times. Google grapefruit seed extract and diverticulitis, see what you think. It was through researching various sites and forums on the internet that I found out about it and decided it was worth a try. By the way, I have no pain at all today! It will be amazing if I have finally found something to keep diverticulitis at bay without antibiotics. I know we are all different and what works for one person won't necessarily help someone else.

pump321 profile image
pump321 in reply to Firinne

I will google the Grapefruit Seed Extract. I am pleased you had a day without pain yestereday, let's hope you have turned a corner and will continue to have pain free days. Life without pain is amazing!

Can I just ask you, do you just ask your GP for antibiotics for diverticulitis and he prescribes them or do you have to have a blood test each time to prove there is infection present? I am sure antibiotics would help me but unless I have a temperature and they can see infection present in the blood sample I cannot seem to get any antibiotics although they know for sure I have a diverticulitis problem. Hope you don't mind me asking.

Firinne profile image
Firinne in reply to pump321

No, of course I don't mind. My doctor says infection can be present without a temperature, he examines me and goes by my level of pain, also what I tell him. (I get mucus and blood when it gets bad.) It's got to the stage where I know whether or not I need antibiotics (I'm sure you know what I mean). Amoxycillin used to be the antibiotic of choice from my doc. but I have been on stronger stuff in recent years. (Can't take Ciprofloxacin though, makes me feel even worse than the diverticulitis!) I have had occasional bouts when stopping eating for a couple of days does the trick and I haven't had to go to the doctor but unfortunately, that is unusual, for me.

When I first started using grapefruit seed extract back in January, it was after a bad attack of diverticulitis - 2 lots of antibiotics - it never completely went away and I started to get bad pains again and I did feel I had a temperature, too, which isn't always the case. I'd bought the grapefruit seed extract some weeks before and decided to give it a try before going back to the doctor. Much to my amazement, I actually felt the pain almost disappear a couple of hours later and my temperature dropped. Within days, that lingering attack completely went away and since then, I've been using 10 drops a day as a maintenance dose, as someone advised on a forum I went on. This person said she upped the dose if she felt an attack coming on (as I have done, over this last 13 days or so) and she no longer needed antibiotics.

Still no pain today, so maybe gse will mean I don't need antibiotics any more! That would be amazing. This has been the first time since January I've felt an attack coming on and the first real test for the upped dosage of gse. I will let you know if I think it really has stopped a bout for me.

I will just say though that - unlike you, pump321 - I don't tend to get diarrhoea, as such. Yes, I get loose and lots of cramping pain and need to evacuate my bowels but not runny diarrhoea, really. So, although I would love to think gse could help others (which is why I replied) it is unfortunately only too true that we are all different and what helps one person might not help another.

Eternity78 profile image
Eternity78

hello pump321 ! how are you doing ? I know i'm late responding to your question as I have just logged in..first of all ..I can totally feel your pain and desperation coming out of your words ..try to hold on there ..we are all in the same boat struggling with the illness in one side and trying to convince professionals on the other side as well as cancelling appointments because of extreme fatigue or simply being prisoner in the bathroom coz the horrible diarrhea just won't stop 😥😢😢

it seems that your main concern is that do you have an inflammation that requires an antibiotic ??

the simple easy non-invasive way to know if really there is infection or inflammation in the gut is to do the (Calprotectin stool test) .

ask your doctor to have this test done ..over the border levels of Calprotectin ( an inflammatory marker specialised and limited to the gut ) indicate the presence of inflammation in the colon thus further tests needed to pinpoint exacltly what type of inflammation it is ..is it Crohn's / Ulcerative Colitis/ diverticulitis/ C.difficil bacteria ??

at this point a colonoscopy is needed to get an accurate diagnosis .

please let us know how you've been doing ..take care and best of luck 💖

Eternity78 profile image
Eternity78

another drug to treat BAM called ( Colesevelam ) it is newer than the one prescribed to you and more tolerable with less side effects as rated by users.

Ask your GP or GI if you can take it instead of the Colestyramine.

pump321 profile image
pump321 in reply to Eternity78

Hi Eternity, Thanks for your messages, much appreciated, I was just getting around to replying to everybody as I am so grateful to all of you who have been so helpful and totally understand how frustrating it all is. Thank goodness there is another drug to treat BAM, it sounds a lot more desireable than the others. My GP is lovely so I am sure he will go along with this idea. I honestly think everybody on this site knows more than the so called experts!

I have noted all the tests you mentioned in your earlier post and will keep going back to my GP and gradually mention these if things do not improve over time. It's a shame really as the gastroenterologist could have easily arranged the calprotectin test etc. We go to see them full of hope and come away deflated by their lack of enthusiasm. Anyway, much appreciate your helpful info. and hope you are finding things that are helping you in your struggle. I can totally relate to "prisoner in the bathroom" and fatigue etc. Many thanks again.

You may also like...

diverticulitis

the gastroenterologist team they have now referred me to go to emergency surgery clinic. I have been

Diverticulitis

if anyone can help me. I've been constipated all last week and have been taking cosmocol 2 sachets a

Diverticulitis.

these antibiotics are killing me! Bowel pain has gone and is now replaced with stomach pain! All I...

ibs and diverticulitis

I’ve been diagnosed as having ibs and diverticulitis via a ct scan. I suffered periodically for...

Are these symptoms of diverticulitis

this mean i have an infection please and is the only way to get rid of infections antibiotics Ior...