Sorry in advance for long post: I've had abdominal pain, and other digestive difficulties over which I will draw a veil! I'm going for a sigmoidoscopy this week.
I am on tocilizumab and one of the warnings is for people who have had diverticulitis because of rare possibility of bowel perforation. Also, that the toc might mask the severity of the symptoms and also mask fever. Years ago, (about 15 yrs?) I was in agony for about three months and had numerous tests including a colonoscopy only after my symptoms had improved. After ruling out cancer -their first diagnosis- and Crohns, I was told no-one knew exactly but it was probably diverticulitis.
My rheumatologist said it'd probably be ok with the toc, but to be wary . So, I asked her about this abdominal pain and she said 'I couldn't say, I'm not a gastroenterologist'.
So I asked the gastroenterologist and he says it's not his area of expertise and I should ask the rheumatologist.
I'm a bit frustrated that there seems to be no-one prepared to join up the dots between those two specialisms.
Meanwhile, the pain has improved and I'm not worried about diverticulitis. In any case the sigmoidoscopy should show whether there's any sign of it. But it's frustrating to be told to be vigilant and then no-one else seems to be bothered.
Sorry for rant!
Hope you're all ok!
Terry
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attatel
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attatel How about a letter to PALS at your hospital explaining the issue of no one taking 'responsibility' or checks so that you are not in this battle zone. Or talk to your local GP and see if they can call and speak to both of them re your condition to see how it can be moved forward.
I believe someone else on here had a similar issue of 2 depts not speaking.
Is there anyway they can set an appointment for both of them to be in same room with you? I know this is highly logical but if youd ont ask ..............
Feel for you this is so stressful and I know diverticulitis is awful, as hubby has it and its a nightmare if it kicks off and so much pain.
Thanks Deeb. Good suggestions! I'm not particularly worried about it but I do think that if they tell you to watch out for signs of abdominal pain, someone should probably take it up if you then report abdominal pain. Like you say, stupidly logical!
Hi , i was diagnosed with Diverticulitis ,IBS, query Crones disease a few years ago after having a Colonoscopy. I had Polyps removed ,but they were benign. Was already on Omeprazole but then they were changed to Lansoprazole.
But that was that really. When the results went back to the Doctors.
She gave me some new tablets to help ease the stomach cramps.
( Can't remember what they're called ).
But you can buy them from over the Chemist. The short name for them is
Buscopan.
It is frustrating to be told to be vigilant .
Then that's it.
I'm with the Frailty Group because of being ????. Frail i suppose. Hahaha.
I told the Frailty Doctor about a tablet that suppose to be able to help people with Fibromyalgia. Which I've got. Its actually a tablet for Diabetics ,It's
called Metformin. He looked it up on his screen and said ( yes you're right )
He told me that next time I see my Rheumatogist to tell him about them.
Which i did. They have a room next to each other in Clinic .You'd think that they could have got together for just 10 minutes to discuss this tablet,but no.
My one Doctor was willing to try me on them,but because im just borderline , the other one told me No..
Why the hell couldn't they get together with me and discuss it. I'm the one that would have been trying it. But No.
My Son is Diabetic and he's on Metformin. I might ask him for a couple and leave some of my other Medication
off.I Id prefer to do it with the backing of my G.P. I'm seeing my G.P next Friday ,
so I'll see what she has to say about it.
If she says No. Then bugger it. Ill do it by myself. It does feel like you're in a Battle Zone sometimes.
Oh,i forgot to say that they have since found out that I have an Enlarged Liver,cyst on the Pancreas,Blocked Bile Duct,Cysts inside the Liver,Cyst on the Kidney and a 16cm Haitus Hernia.
Also a Gallbladder that's not doing it's job. Waiting to have my Gallbladder removed after I've had another Heart Scan, because I've got 2 Heart Valve's that aren't working properly,Angina. Asthma, and COPD. And im classed as a High Risk. .
Oh my goodness, you have got such a lot to contend with! I'm just amazed that you're coping with all this! Why haven't they invented robot bodies yet??
But it is daft that your various doctors can't get together and agree a coherent approach.
Wishing you all the very best with everything, Gjkas, and I hope you can get some sensible advice on those meds.
P.S If it helps at all, had my gall-bladder out last year and it was fine.
Oh poor you! I really feel for you. I've also had long-term depression and anxiety disorder although on the whole it's been better lately. It's just horrible. If I start getting like that I just go to bed and watch stupid light -hearted films online. Fred Astaire or screwball comedies. I find it helps. Just a bit of distraction from those worries going round and round.
It's hardly surprising that you feel depressed when you've got all this stuff going on. Anyone would.
I hope that when some of it gets sorted out you'll feel a bit better.
In the meantime, if you get fed up, feel free to message me. I don't suppose I can do anything but we can have a sob in unison. xxx
I expect the very last thing you want is more medical appointments, but have you considered asking your gp for counselling? Not everyone's cup of tea of course but you never know, it might help.
Hi good morning. Awww thanks once again for getting back to me.
I used to have counselling a few years ago. Even have a Phsycologist coming to the house. We used to do Minfilulneess but it didn't help me much. I told her that it probably would help people with Anxiety and Depression. But when you're in Chronic Pain along with the rest of it. Your mind just seems to be going back to the pain..
But I do need some kind of help because in going down on a downward spiral.and i don't want to be out of control of it.
I can't lie down for long because my Legs get so stiff and painful. But I can't walk either,
When I see my G.P on Friday I'm gonna ask her about counselling.
But they will have to come to my house. Im not going there as well.
I just don't feel up to it.
Thanks for your advice and help.
Yeah, perhaps we could have a sob in unison. I don't want to get you depressed though.
Hi Terry,i don't know why I'm even thinking of going to see my G.P. They haven't got a bloody clue what to do to help me. Im on the same medication now that I was on 8 years ago. It's the same with the Pain Management Doctors. Just don't know what the hell to do next. When I saw the Anaesthetic Consultant 2 weeks ago she said that she would give me the Anaesthetic,providing she had my Heart scan results beforehand.
She told me that I should be able to have the scan done within 2 weeks..I haven't even had a letter yet to agree on a date for the Scan.
My Hubby have rang up Cardiology twice,only to be told that they're busy. He left our name and Telephone Number for a callback.
BUT NOTHING.
Then he rang the Clinic, only to have the same response.
Where do we go from ther ???.
If somebody don't help me soon i know that I won't be here much longer. Im in so much pain.
It's not the Consultant or the Anaesthetists fault.
Its the stupid Idiot's you have to get past..
Trying to cope with all this pain is getting to be too much for me.
I finally gave in and started on a low dose antidepressant several months ago and can’t believe what a difference it made! Many of the symptoms i thought were from RA, cleared right up with the trazadone. Loss of appetite, weight loss, extreme fatigue, loss of interest in everything . . . I feel like i’m Coming back to life. Still have the pain and stiffness and run out of spoons quickly, but nothing like before the meds. Good luck!
I hope that's not just for starters! My goodness, you have more than enough to contend with. If you had said you also has depression, I wouldn't be at all surprised. I really hope they get you sorted out in the very near future. Good luck. x
Hi .i have got depression and Anxiety. At the moment I am at rock bottom. Supposed to have had a Heart scan by now before I have the Anaesthetic. But I haven't even had a letter yet to arrange a time and date for it. My Hubby's been trying to get hold of Cardiology. But as usual he's only been able to leave my Name and telephone number for them to ring us back. He rang them last week as well. Still No Ringback. I can't have the operation until they've had the results of the scan. I know that I'm a high risk Patient, but it they don't hurry up i won't be around long enough to have the Op..
Oh i don't know. Im just about sick of the lot of it. So much pain going on.
The Doctors keep telling me that im one strong Lady. But im not strong anymore. I've lost my Faith in just about everything and I mean everything. Had enough now. Just wanna be up with my lovely
Mam and Dad and my Brother..
Thankyou for your advice. It really does help,knowing that people really do care. Love Glo.xx.
Can't remember if i mentioned it before..I might have done..
I've also got Rheumatoid Arthritis ,Osteoarthritis and Osteoporosis.
A couple of years ago i was taken to Nevill Hall Hospital because the Paramedics thought that I'd had a stroke. But it wasn't a stroke.
I'd only just came out of hospital after being in there for 5 weeks.
My Hubby said to me,do you fancy a drive down to Westonsupermare .It was a lovely Summer day, so I said yes okay. We had Fish and Chips on the Seafront and it was just great to be outdoors and by the beach..
Until my left leg started hurting. So I told my Hubby. He brought me home and I could hardly move my leg because of the pain. Well anyway he called the Doctor. The Doctor said Hospital. I said No,id only came home from hospital the day before. Well they couldn't make me go to hospital. About an hour later my Hubby called the Doctor again. He came to our house just a few minutes before the ambulance got there. But our Local Hospital was full. So they took me to Nevill Hall hospital and they were absolutely brilliant with me. Within a couple of hours of me being there I was down in Theatre having Fluid drained from my Hip and my Groin. It wasn't a stroke I'd had at all. Somehow or another,Fluid had leaked out of my left hip and gone down into my groin. .That's what had been causing me all of that pain. Later on the Consultant came to see me and he told me that I was one Lucky Lady. HUH Lucky.
They were looking something .
( I forgot what it was ).
But if they found it ,i would have had to have had major Surgery. Because apparently it would have been life threatening So I was in there for
2 weeks then. The Consultant told me that it was very unusual,it didn't happen very often and that it shouldn't happen again. I've had an operation done on my foot because of the Arthritis. Had bones taken out of both hands. I think that I've had my fair share of health problems. I don't want anymore.
You really have had a terrible time. Honestly, as I said before, anyone would be depressed. And constant pain is exhausting. Plus feeling like you're just existing from one health crisis to the next.
I hear you about your GP but I do think you need to make him understand how severely depressed you are. Can you get someone to go with you? I think sometimes you have more luck with an independent witness!
Have you tried Mind or one of those places?
I think you can self-refer for counselling - you can in my area.
The thing is to try and get some support. It's all very well treating the physical body but the psychological effects of pain and long term illness can be just as bad.
There are also loads of online depression groups - including on this site +health unlocked. Might be handy for when you just need to wail.
I really hope you can get someone to understand how bad you're feeling.
Just acknowledgement can help!
Best of luck and hugs!
Terry xx
P.s. my hospital literally never answer phone messages or emails so I share your frustration.
Sorry, the truth being that most of these strong meds cause stomach. Irritation that are again causing new problems.The specialists that take responsibility for upcoming problems are seldom the responsibility of rheumies. So I have come to understanding
Rant on!! Complain and again.. I didn't until nagged about cough... lung damage, off mtx and in w/chair but am well recovered now. Soo keep asking those ??s x
Hi attatel, I understand your frustration I went through something similar. I had been thru so many tests. Endoscopy, colonoscopy like 2018 an 2019. They found nothing but diverticulosis. My stomach hurts so bad. I suffered with IBM an now I on more meds. I am 63 an I cant even stand a length of time or walk with severe pain. I been on 300 mg of gabapentin but I only take when I get real bad. Pain meds, meloxicam, xenity meds. Sleep aids, wow you name it. I still try to work a part time job which requires some standing an walking. Abt 15 hours a month just to get out the house an feel something useful for myself. I was denied twice for ssi an finally had a hearing after 2 years struggling to pay doctor copay medicine. an hospital medical expenses. I finally had a hearing an won my claim with a atty help. Right now I feel BLESSED but the pain still comes. They also wanted to take out my gallbladder but when I was in hospital they said my gallbladder was overactive but I could keep it. I was also diagnosed with glaucoma. My nerves in my eyes is so bad they cant even do laser. I am goin to a surgeon he said they have to find the right eye drop or I will go blind. They said the RA could be partly responsible but my mom went blind from glaucoma when she 57 because a doctor gave her the wrong eyedrops. She lived on this EARTH til she was 92. So yes I can relate but at The same time I try to remain positive. I have a lot against me but I have faith that I have a lot for me. Thank God 🙏. Good luck to you an keep your FAITH.
Hi , im butting in here. If they found your Gallbladder to be overactive, why on Earth did they tell you that you could keep it.
Could they not have waited for your Tummy to calm down. Then take your Gallbladder out. The pain won't go away,
but it will get worse,especially when you eat certain foods ,or certain medications. Plus if you have Gallstones ,they could get bigger and accumulate..Than in a couple of years
This sounds miserable for you Quee. I'm just grateful that in the UK we don't have the stress of having to pay for our treatment on top of everything else. (Well, so far, we don't anyway).
Once you've got so many departments involved it just gets crazy.
I hope you don't develop problems with your gall-bladder as well - it's so horrid.
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