Hello!

[lahodges10]

Hi everyone!

Apologies this may be a long post! My name is Lauren and I am actually posting as a concerned family member, for my brother who is currently undergoing tests for ibd. To be honest I would love to hear from others whom have gone through what he is going through, as right now I can see he is absolutely exhausted by it all.

I will start at the beginning,

Five years ago he began suffering with what our gp said was ibs. Back and forth to the gp over the next few years lead to no actual diagnosis, they just said ibs. This time last year it got a whole lot worse, he lost a lot of weight, tiredness, fatigue, pain, constant diarrhoea which meant he couldn't even travel to work. Then all his hair fell out, every hair! The pain and diarrhoea got worse, to the point where he now is up in the night in pain and using the toilet. Our gp has been horrendous and said he must be depressed and offered antidepressants.


Finally today, after fighting for it he got a colonoscopy, but it was so painful the dr stopped without actually being able to do the test. He will now get an mri but I know he is so cross that he couldn't withstand the pain in order to get some answers.

has anyone else had similar things happen, with symptoms and painful procedures? I know just hearing others with similar situations will help him and maybe if he reads this he will stop beating himself up.

Thank you all so much for even taking the time to read my long post, I hope I can get him to join this forum for himself!

Lauren

 

[lahodges10]

Sorry...one more thing when it was at its worst a few months back he got.a red rash all over his back. This has since faded but left scars. Sorry for the million and one list of things, I am just really eager to see if anyone else has had the same symptoms?

Lauren.

 

[buttER]

Dear Lauren
I think most of the people on this forum would recognise crippling diarrhoea, weight loss, and a fatigue that most people cannot even imagine. Weight loss is certainly not attributable to IBS.

As for the hair loss and skin rashes, together with fatigue, reminds me of lupus (SLE) which is also an inflammatory disease. But perhaps other forum members here know if it also happens with IBD.

Was he given a sedative and/or pain medication for the colonoscopy? I don't know if he was given the option beforehand.
It is such a shame the colonoscopy did not work, considering all that nasty preparation and the information it would have given. If he wasn't sedated then I would suggest having it done again.
p.s. last time during a flare the procedure was very painful despite the painkillers and sedatives, I vaguely remember screaming alot and trying to get off the table. I assume they gave me more anaesthetic to sedate me more so they could finish doing the scope. Your brother should not be too hard on himself, it can be a very painful procedure (worse than childbirth for me!)

I really hope things get better for him. Special diets can also help alot in the long run, using a food diary and a bit of trial and error (or much more methodical restriction and reintroduction of foods if he is conscientious in that way) he should work out what makes him worse. Of course it is often the foods we like the most that do the most damage......

I really hope he gets a diagnosis and help soon. Keep up your support and yes try and encourage him on to the forum to get some ideas and also see that he is not alone.

 

[lahodges10]

Hi kind of orange,

Thank you so much for your reply in answer to your questions: he has had bloods so I will ask about lupus? And he did get sedatives, the doctor said he was in so much pain they couldn't continue. My brother doesn't even remember, although he's in a fair bit of pain now.

Thank you so much for your kind words, I am going to show him. I think it will help just hearing from people going through the same thing.

Thank you!
Lauren.

 

[buttER]

Oh wow, there must be a way of knocking him out to do a colonoscopy? But the drs were wise to not try, your brother does not want a ripped intestine on top of everything else. I don't know what information an MRI can give - and comments anyone?

I'm not a medical doctor so perhaps I should not scare you with ideas such as lupus. If the blood tests do indicate inflammation then I am sure they will do a follow-up to cover all possibilities.

 

[24601]

Hi Lauren,

Another voice here to say please tell your brother that this definitely wasn't his fault that they couldn't do the colonoscopy. They can be incredibly painful and unbearably uncomfortable (I know uncomfortable sounds like it should be more bearable than pain but the particular way your bowel can have of fighting something that's going the wrong way is sometimes just too much in my experience).

I'm really sorry he's had such bad treatment from his GP. He has been let down. This is not depression although it is completely understandable if he is now depressed in addition to his health issues because they are enough to get anyone down. I also do not think that IBS is a credible diagnosis - and in my opinion it's not a diagnosis that should be given before ruling out more serious conditions. I really do believe this GP has been negligent. I think it would be a good idea to find a new GP because whatever is going on a more sensible and supportive GP is likely to be helpful.

But again the GP's poor treatment is not your brother's fault - nor is he sadly particularly special in this respect! So many of us here have been told our symptoms are anxiety, stress, depression, anorexia or some other version of "it's all in your head" or "you're not trying hard enough to be well". We shouldn't have to fight so hard for a diagnosis but sadly we too often do. Please know we'll be here to support you and your brother through this.

I don't have any knowledge or experience of the skin rash (although there are various Crohn's complications involving the skin) or hair loss but all the symptoms except hair loss do sound consistent with Crohn's - that's not to say it is, simply that it is a possible diagnosis, and the hair loss might be due (possibly?) to malnutrition or the stress his body was under from the illness. An MRI should give a fairly good idea of whether this is IBD and then once he's started treatment and things are better under control a colonoscopy (if needed) might be possible at a later date. I'm just trying to say don't worry about not having had the colonoscopy for now! Have they scheduled the MRI yet? How long does he have to wait?

Has he been prescribed any pain meds or anti-diarrheal medications? How's he doing at the moment with eating food?

So many of us can relate to being completely exhausted by illness, and frustrated by such a lack of progress to get a diagnosis or decent treatment. Please let your brother know he is not alone.

 

[lahodges10]

Kind or orange and 24601 I cannot tell you how good it is to just hear from you both. My mum and I have been trying to support my brother, but unless you've been through it you don't truly understand what it is like. I have seen my brother go from a fighting fit young man, football coach and building sight labourer, full of life and vitality go to a thin, pale sick man who is so much pain. I have shown him your messages and they really touched a nerve, I'm hoping he will join now! But for now I will keep passing on messages.

Fingers crossed the mri helps with a diagnosis. The not knowing what's wrong is not fun, as so many people on here seem to have gone through.

Lauren.

 

[buttER]

Hi Lauren
I was wondering how things are? Has your brother had a diagnosis or any help or treatment?
Best wishes
Susan

 

[smt]

Lauren,

I am sorry that your brother is in this kind of agony. I am sure he would do better in the future. The colonoscopy can be a painful procedure. An FC test and a CT scan can be carried out. If necessary there are other options such as capsule endoscopy.

Blood tests can reveal a lot as well, although they are not confirmatory in any respect.

The diagnosis of IBS is one of exclusion. GPs in many places are making this diagnosis without real testing and this is unfortunate.

I am sure that the MRI and/or other tests would give you the necessary information. I also want to place on record my appreciation of your role in his hour of need. Not everyone is lucky in this regard.

Regards

 

[lahodges10]

Hi kind of orange,

Thanks so much for the check in mri booked for end of this month and he seems ok in himself. Still struggling to eat anything without any repercussions (if you get what I mean) still in pain and has what he calls 'swirling' in his stomach really hoping the mri gives some answers. Fingers crossed. Hope you're keeping well?

Lauren.

Hi smt!

Thanks for the message. Hopefully the mri will clear up everything the gp seems to completely dismiss. I've been totally overwhelmed by the kindness I've received on here (and I'm not a sufferer) I hope I can offer some support to you as I do to my brother

Hope you're keeping well,

Lauren.

 

[Olivia65]

welcome!

 

[scottsma]

Please keep us updated and give our very best wishes to your Brother.

You are both very welcome to the forum.I hope he gets a diagnosis very soon,and gets the treatment he needs to get his life back on track.

 

[DougUte]

Hi Lauren.

I feel I am a little late to the party, but thought I would give you some perspective.

I also was first diagnosed with IBS. I was treated for IBS for 6 years, despite having numerous trips to the emergency department for the most horrible bowel pain you can imagine. I had times where I lost 40 lbs in a couple of weeks. Unfortunately I have always gained it back. I had severe diarrhea and when in a flare could not stray very far from toilets. I never had the problems with hair loss or the skin problems your brother has, but I know there are potential skin issue with Crohns.

I was finally on the route to the proper diagnosis when I made what has turned out to be my last Emergency visit. The ER doctor did something no GI or my GP had done to that point.... He ordered an abdominal CT scan. After observing the scan he told me that in his opinion it was Crohns disease. I was referred to a new GI doc, who unlike my previous GI, ran every test under the sun, and confirmed the Crohns diagnosis.

My case was very severe, because I had gone so long with the IBS therapy. IBS is a diagnosed when they cannot figure out what is going on. It is a diagnosis of omission. IBS is a real condition, but too many doctors go there way too quickly.

It is really too bad they could not complete the colonoscopy, It is the best way to find problems in the colon and in the terminal ileum (last part of the small intestine). I hope the MRI shows what is going on and your brother gets the relief he so badly needs.

 

[24601]

I hope the MRI went well. Do let us know how it's going when you get the chance. Fingers crossed that you can make progress with a diagnosis.

 

[lahodges10]

Thank you all so much for the messages on here. What a truly wonderful support system you have here, its amazing!

Thank you for your lengthy message DougUte, it's bittersweet to hear from someone who too was told they have IBS when it was in fact something else. I hope you are now on the road to somewhat liveable diagnosis. It's frightening how quickly gps will reel off diagnosis after diagnosis without looking at every patient differently and in depth, in my brothers case had my mum not been a nurse he may still have not been seen.

His MRI was yesterday and waiting to hear from consultant for news, I truly hope they can say its ibs but who knows! I will keep you all updated and pass on these kind words from you all.

Lauren