Avoiding treatment/diagnostic tests: what are my options?

[jeffwode]

Hello all

I have spent a lot of time wandering around these parts but decided to join and to post as I am currently at my wits' end.

I began to develop abscess on my backside about five years ago that would build up, drain, reduce then start over. Around 18 months ago I noticed a painful swelling on my perineum and within a few weeks a further abscess appeared on my groin. When the pain finally got too much I went to the GP and was given antibiotics. When I returned a few days later I was sent to hospital where I had the 3 abscess sites drained under anaesthesia (a traumatic experience as I came around partway through as the surgeon inserted something into me and I had a flashback. I was told that I had to return for a colonoscopy.

Due to things that happened in my childhood and the nature of the test I felt unable to go but the abscesses didn't heal 100%. I realised I maybe needed the and in an attempt to move on with my history formally reported historic crimes to the police. Sadly I realised that I had opened a Pandora's Box of things that were arguably best left boxed up, as I suffer from a severe and enduring mental illness. I have spent all the time since then carefully boxing things back as I fell apart.

I finally got back on track but the abscess has returned with a vengeance. It has spread to one of my buttocks and the pain is pretty bad. It has been throbbing away for around 6 weeks and I am feeling incredibly anxious as I feel unable to go through more surgery and the only diagnostic tool appears to be a colonoscopy.

A short while back when my abscess started to reappear the doctor prescribed coamoxillin. By day 5 of 7 the swelling had vastly decreased. When the course ended it got larger. When I spoke to the doctor I said I felt the antibiotics were very helpful but the course was not long enough. He gave me a second, 10 day course. Same thing happened although I cannot help but feel the correct antibiotics for the correct length of time could heal the abscess and avoid the need for surgery.

So I have 2 questions: is a colonoscopy the only test as I cannot go through with one? Secondly, I am aware that the traditional belief that such abscesses need lancing and packing (only to reoccur) is being challenged. My own experience suggest they could be helpful although I feel I would need a much longer course. What are you views/experiences in this area? If you would recommend antibiotics which ones? How long did your course last?

I am sorry for the wall of text and for the many questions, and thanks for your time.

 

[jeffwode]

Anyone? 66 views on a Crohn's support forum and nobody has any experience with relevant medical tests, and antibiotics?

 

[Jmrogers4]

Welcome, Are you on any other medication for Crohn's besides the antibiotics?
I don't know of any other tests for concrete diagnosis besides colonscopy. They have talked about MRI and CT scans for my son but that was more to check for thickening of bowel wall or stricturing.
We have fortunately not had to deal with any abscesses with him so far. My husband has had 3. First one was drained and then colonoscopy, that is when he was dx'd with Crohns and prescribed Asacol, second within a few years drained, changed medication to Pentasa and last one was about 8 years ago, surgery, packed and changed medication to Imuran which he is still on and seems to have kept them at bay so far.
Sorry I'm not more help and unfortunately colonscopy seems to be the norm. Can they give you general anasthesia so you would not wake up during? This is what they do for my son.

 

[jeffwode]

Hi and thanks for the reply. I'm currently on no medication as the last course of antibiotics ended a few months ago but the abscesses have got particularly bad. The doctor doesn't seem to like to prescribe antibiotics for more than 10 days and I am worried if I go in he will make me go straight to hospital for incision. Due to the issue with the test they have suggested I am still undiagnosed.

I was sort of hoping there were alternative diagnostic tests and that maybe a thorough course of antibiotics would heal the abscesses as they dramatically decreased in size during the last course.

It would be nice to visit the doctor armed with enough information to argue a the case for antibiotic treatment. Thanks for your help, I am researching the drugs you have mentioned.

 

[Jmrogers4]

Well I'm not a doctor but to put myself in your doctor's shoes I would think he doesn't want to keep on the antibiotics so you don't develop a resistance to them.
I would think he wants to do scopes to either confirm or rule out Crohn's as this is done through biopsies taken during scopes, it would also give them an idea of the severity of the disease and what medication has the best chance of controlling your crohns based on the severity.
You might ask about a pill cam it is about 1 inch long and you swallow it and it takes pictures as it travels through your system and sends them to a receiver you wear, could possibly give an idea of what is happening on the inside.
Again not a doctor but the idea is to get the disease under control so you don't develop any more abscesses rather than treating each abscess. The damage that could be going on inside where you can't see can lead to a whole lot of other problems including surgery to remove damaged intestines.
Hope that helps and I hope you and your doctor can figure out a treatment to get you feeling better.

 

[rygon]

As said there is a pill cam, but these can get stuck and cause a lot more problems, plus it doesnt get biopsies, which are needed to test for certain conditions.

As said antibiotics are the answer, they only work on certain things and can lose their effect.

I'd say you really need to have a colonoscopy, you might be allowed to sleep through it if you ask.

 

[jeffwode]

Thank you both for your posts, I will have to think about a colonoscopy further, although I am unsure I would manage it. The pill cam sounds interesting although I hear the procedure costs £1000 and I am not sure the NHS will cover such things and, as said, there are cons to this test.

I realise antibiotic use is not ideal but despite 5 years of contiunuing abscesses I have only taken antiobiotics (a few different types) for a total of 6 weeks or so (in 7-10 day courses) so, for now at least, the doctor can either prescribe antibiotics or leave the issue untreated. I'm not letting them take me straight in again after the last experience.

Thanks again and sorry to those who may have posted on/read this thread who put up with all sorts of horrible tests and procedures with no fuss. I accept my reaction may be unfathomable.

 

[Bamafan94]

Hi!
Don't know if this will help, but I was diagnosed with an anal abscess in October of 2000. I was given the antibiotic Flagyl (one of the antibiotics of choice for Crohn's). It seemed to help, but not heal. By January of 2001, my GI said the abscess had turned into a fistula. Those are much worse than abscesses. It opened from the very end of my colon to the outside beside my rectum. There are no words to describe how painful it was. My doc did a procedure called flex sig (for short) which is a scope that only goes a short distance into the colon. He put me on Imuran and I took 4 infusions of Remicade. The fistula closed, but 3 years later I ended up having surgery on it anyway and that was the end of it.
Now I've developed 4 fistulas in my small intestine that connect to my colon. I've taken 4 infusions of Remicade in hopes of closing them so I can avoid surgery. Don't know the results yet.
I said all that to say this. Crohn's is a strange and unpredictable disease. While my first abscess/fistula was obvious, I was completely oblivious to the 4 inside my intestine. I can't feel them, so I didn't know they were there.
Most of the procedures and tests are uncomfortable, painful, or just flat out annoying. I was once put through a colonoscopy while I was awake. That ranks high on my list of things I never want to do again. I don't know your history, but I appreciate your courage and candor in even mentioning it.
I know you don't want to be put through a colonoscopy, but truly you need to. I'm not trying to scare you, but there could be other things going on that you don't know about. If I'd gone to my GI as soon as I knew something was off, I might have avoided these fistulas. There is also bloodwork that can be done to show if you have inflamation. That lets you know if the Crohn's is active.
I'm sorry your having a hard time. I wish there were easier ways to diagnose and treat Crohn's. I've had it for 14 years and the tests and procedures are basically the same.
Whatever you decide to do, I wish you luck, and improving health.
Sorry this is so long, but I hope I've helped you.

Current meds:
Lialda
Imuran
Levbid
Multivitamin

 

[jeffwode]

Hi Bamafan

Thank you for your comments, sorry to hear you have been through the mill with Crohn's. Fistulas were mentioned to me when I had my abscess drained I think. I know they wanted to fit a seton but they said they examined me when I was aneasthetised and couldn't find an opening. I am now wondering if the abscess on my buttock is indeed a fistula but it is connected through flesh to the abscess in my perineum, if this is possible?

I phoned my CPN and she is making an appointment with my doctor and will be going in with me as she knows more about my past than maybe the doctor does. I will see what options are open to me but I am realising the inevitable is, well, inevitable. Not too sure how I will do it but if I break the task down into smaller chunks I have more chance of success, so doctors first.

Thanks for the help

 

[nitty]

Hello!

In the UK colonoscopies are usually done with either no sedation or a short-acting sedation, and it is your choice. I'm not sure if it is ever done with a full general anaesthetic, others on the forum may be able to tell you.

However, the nature of the sedation means that you may still be able to follow basic instructions that the practitioner requires (perhaps just changing position a little bit), but have no memory of the procedure at all. I had gas and air for most of my scope but it became very painful (near my liver) at one point, and so they quickly gave me IV sedation and I have no recollection of anything from that point, until I woke up in the recovery room afterwards.

Although I don't have the same personal experiences that you have had, I can understand your anxiety. No one likes the thought of a scope, even when we don't have any other complicating factors. All I can say is that the whole event was done (NHS) with as much personal dignity that can be possible in these sorts of things. I kept the top half of my clothes on and even my boots! I was fully covered in gowns and wore full size disposable shorts (very attractive!) which have a small opening where needed. When they do the scope I think they first insert a piece that keeps the entrance open (to put it tactfully) and then the scope passes through that - in fact after the first piece was in place I didn't actually feel the scope go in at all. I was laid either on my back or slightly to the side, and I shifted around as asked to assist the scope round the loops of the bowel. The staff were so lovely and reassuring, and funny - I remembering the gas and air making me giggle a lot!

I'm sure they will take your request for sedation seriously, and that you will not have to justify this request with any personal information about your past if you do not wish to, just tell them that you are a very anxious person. They would rather give you sedation than have you go through all the prep and get into the endoscopy suite only to have to abandon the procedure if you find you cannot go through with it.

It was thought that I had ulcerative colitis until my colonoscopy showed otherwise (turned out to be Crohn's), and so without the scope I could have received the wrong type of treatment - so it was worth doing it.

Speak to your CPN and I'm sure she could act as advocate for you in these things if you feel unable to talk directly to others. Hopefully you can get through the scope and get onto the right treatment path and look back with the reward of overcoming something that could have been holding back your recovery. Try not to let your past ruin your future - you deserve a break!

Good luck and let us know how you get on.

 

[UnXmas]

Hi,

I also had issues from my past which made me fear various tests, in particular the digital rectal examination. I did go through with them in the end, but you've got to weigh up whether it is worth it for you. You know what you can tolerate better than anyone else. I found a doctor I liked and trusted, and that made it much easier for me than if it had been a stranger or a doctor I wasn't so sure about. I have found that it gets easier the more investigations I have. I still get very worked up prior to having them, but I've been ill for over a decade now and have had had quite a few, and am much more comfortable with them now than I was with the first one.

I'm in the UK and I had full sedation for a scope. They didn't even give me a choice, that was their standard practice at the hospital where I had it done, and that was fine with me. I was completely knocked out, wasn't aware of having the test, and had no memories of any of the test afterwards, same as when I've had general aneasthetics for surgery. So it's certainly possible, though different hospitals may have different regulations.

I'm sorry if you mentioned this already (I haven't had time to read this thread very thoroughly yet), but have you had an endoscopy of the upper parts of your digestive system? Do you have symptoms that wouldn't warrant investigation of your stomach/eosphagus as well as your colon? If you find the idea of an endoscopy to be better than a colonoscopy, you might at least establish whether you have Crohn's that way. You'd still be left with the problem of not knowing exactly how bad things are in your colon though.

I've never had an abscess so I can't offer anything useful about that, but I hope yours heal soon.

 

[asheroonie]

You should definitely be able to get a colonoscopy under full sedation/general anesthetic. You're the patient, and you make the decisions, don't let them tell you otherwise. I remember getting colonoscopies when I was younger under conscious sedation, and while that might work for others, I ALWAYS woke up. Having a colonoscopy while being aware is the worst Now I am always sure to ask for general anesthetic and nothing less. I recently switched from my pedi GI to a new, adult GI doctor and when I got my first colonoscopy with her, she wanted to just do conscious sedation but I refused. I had to go through a few annoying extra steps/appointments to get the general anesthesia, but it was worth it in the end.

That being said: I agree with everyone else, and I think you should really consider having the colonoscopy done. I have never had an abscess, but I don't think antibiotics alone will fix your problems. And the longer you put it off, the worse your issues will become

I hope you get everything fixed and start feeling better soon!

 

[Bamafan94]

Hi!
Before I joined this forum it was my understanding that all abbcesses left untreated would turn into a fistula. But a lot of people on here talk about long lasting abbcesses. I don't know what a seton is, but to me what you have sounds like a fistula. I can't guarantee that though.
I'll be having a colonoscopy myself a week from Wednesday. Hoping that turns out well.

I wish you luck and hope you get much better soon!

 

[Aussie]

Hi Jeff, given that the only thing you have been diagnosed with is recurrent perianal abscesses, the best test given you've had an EUA would be a perianal MRI. Not everyone with recurrent perianal abscesses has Crohn's, although I think it would be likely in you. Might I suggest a faecal calprotectin on top of the MRI to gauge the level of intestinal inflammation, although I can't see you avoiding a colonoscopy regardless of the findings of the other tests.

Best wishes.

 

[jeffwode]

Hi everyone, apologies for the absence but I've been buggy. Thank you to everyone who has replied, you've all been great. Knowing that I can have the procedure under anaesthetic has calmed the anxiety a little, and realising I'm not the only person anxious about the procedure has really helped. As an update, the abscess hasn't grown or became more painful (slightly less if anything) and I have changed my diet after reading threads here about trigger foods, which it turns out I was eating almost everyday. Gastrointestinal symptoms are drastically reduced, they got bad coinciding with the abscess worsening.

nitty: someone told me I could take Diazepam before the procedure, but I take it daily for anxiety which means I would have to look at alternatives as it wouldn't have the desired effect. I will have to speak to the doctor about this, but if possible full anaesthesia would be preferable. I will keep people updated but I have done a really good job of downplaying the issue to my CPN to avoid being whisked off again, meaning things are moving fairly slowly (which suits me).

UnXmas: thank you for your honesty, as mentioned it is very helpful. I admire your fortitude and hope too to find the strength. Now my CPN is involved I hope to change GPs as I relate far better to female professionals, it sounds like it is important to have a good relationship with the doctor. It is reassuring to know that the tests will get easier.

An old GP of mine wanted to perform an endoscopy in the late 90s as I have a lot of ulcer type symptoms, but back then I was still young enough to feel invincible and have spent a fair amount of money on Zantac ever since. I'm okay with the idea of an endoscopy so this is something to ask the doctor.

asheroonie: thanks for the advice, I am almost certainly going to request anaesthetic; it will likely be a condition set by me for the procedure!

Bamafan 94: Definitely thinking one of my 'abscesses' is a fistula. I hope your procedure goes well, good luck!

Aussie: I am looking into the tests you mention. Even if there are tests that will only delay the inevitable I may need time to get my head round stuff. Thanks for the advice.

 

[jeffwode]

Hi

I have a quick update for anyone interested:

I finally saw the doctor last week and told her everything and she was very good. She reiterated that a colonoscopy would be required for a definitive diagnosis of crohns but if needed she can arrange for full sedation and also ensure any staff or specialists are female which will help a bit.

She is writing to the hospital to arrange for all other tests for all other causes of the abscesses to be exhausted and I believe she said she wants me to have some kind of scan.

As my abscess previously responded to co-amoxiclav she prescribed 10 days last week and the abscess has decreased in size dramatically and the pain has vastly reduced. She checked it again today and has prescribed a further 7 days antibiotics although I think when they run out if it rears back up I need surgery.

Finally, I have put weight on over the period I have had symptoms. She said this was not typical for crohns. What is your experience?

I will update as and when

 

[prettykitty]

Glad to get an update, Jeff! Please keep us posted!