Confused and frustrated after GI appointment

[valleysangel92]

Hello everyone.

I had a laperoscopic hemicolecotomy about 9 weeks ago and today was my follow up with my GI. He told me that they'd analysed the section of bowel they removed and it didnt look typical for crohns. He then went on to say that the original biopsy that they took when they did the scope had been "dodgy", so they were never really sure it was crohns at all, but failed to tell me :voodoo: .

The GI I see most often isnt an IBD specialist, but I do see a specialist when he's available, and both told me that they were certain it was crohns, and my only option was to have surgery since medications weren't working.

As you can imagine, after years of tests and being told there was nothing wrong with me, and then finally being told they'd got an answer, this is rather frustrating. My doctors are currently waiting for a response from a professor in England with regards to what they should do next and the potential for relapse since they have no idea how to help me.. :ybatty:

My symptoms before surgery were severe abdominal pain, nausea, vomiting, constipation, dramatic fluctuations in weight and pretty much constant anemia, plus joint pain and osteopenia.

Currently, I'm anemic again and my joints have flared up pretty badly, aside from side effects of iron tablets (which I've stopped) my GI symptoms have cleared up a lot and I'm gaining and sustaining weight for the first time in 5 years.

Thanks for reading, just needed a rant! If anyone has any suggestions I would love to hear them!

 

[UnXmas]

That does sound frustrating!

What was the reason for doing the hemicolectomy? Surely they wouldn't have done that unless they were pretty certain of what your diagnosis is?

 

[valleysangel92]

When i had my scope i was covered in ulcers, and had a pretty bad stricture, it was too narrow for the camera to get through.. I was pretty much told then that it was crohns.. They gave me a pretty long course of steroids but they said the stricture was all scaring.. Everyone said that it had been left too long and only surgery would correct it. Maybe I should of questioned them more? But three different doctors saying the same thing is pretty convincing...

When they did the surgery my lymph nodes were badly inflammed, but apparently the inflammation itself was a-typical for crohns .

They gave me no impression they had doubts fron the original biopsies until now.. And from all Ive read I was certain it was crohns... So im a little shell shocked to say the least.

 

[DJW]

So sorry. Sending you my support.

 

[valleysangel92]

Just before my stomach issues flared up, i had started a degree course in child nursing... Part of the reason for my doctors being keen to do surgery was to try and get me ready to go back this september since id already skipped a year before registering to wait for jaw surgery and then taken the majority of last year off. Nursing courses have a 5 year time limit from starting to qualifying.. If you go over you have to start from scratch.. I had an occupational health meeting today, its normally just a formality for nursing students . Turns out they dont think im fit for uni, and dont want me going back while my doctors are working things out.. They are also concerned about the level of joint pain and fairly frequent high heart rate that i suffer from.

 

[UnXmas]

Just before my stomach issues flared up, i had started a degree course in child nursing... Part of the reason for my doctors being keen to do surgery was to try and get me ready to go back this september since id already skipped a year before registering to wait for jaw surgery and then taken the majority of last year off. Nursing courses have a 5 year time limit from starting to qualifying.. If you go over you have to start from scratch.. I had an occupational health meeting today, its normally just a formality for nursing students . Turns out they dont think im fit for uni, and dont want me going back while my doctors are working things out.. They are also concerned about the level of joint pain and fairly frequent high heart rate that i suffer from.

I'm sorry, that seems so unfair. However, nursing is such a massive responsibility, ensuring you avoid attempting work that you're medical conditions would make unsafe has to be the priority. I ended up doing a different degree at uni than I'd planned due to ill health - I'd always thought I'd do biology or something similar, but spending long days on my feet in laboratories and going on field trips was just not possible. When I was doing my A levels the school told me they couldn't let me carry on with biology because they didn't want to be responsible for me on the field trip that was required for the course.

It really, really sucks when something like this messes up your life plans, but you have to try to make the best of a bad situation. I did really enjoy the course I ended up doing at uni and did really well, even though all of it was just learning from books, going to lectures and writing essays.

I know that telling you that this could be an opportunity for you to discover a different career that you could enjoy which you'd never have considered if you hadn't been ill is probably way too much of a cliché, and in reality I still know that the degree I ended up with would not have been my first choice. However, not once when I was studying for my degree did I find it difficult to manage along with being ill. I know that doing a subject where either I was physically unable to do the necessary work safely or where I dreaded every day due to exhaustion would have been miserable.

I really hope your doctors can get things sorted so that you can continue, and I'm glad it sounds like they understand what's at stake for you and recognise you need them to act as soon as possible, but keeping you and others safe has to be your priority and it's always better to recognise what's necessary to ensure that happens, even if it's not what you would have chosen in more favourable circumstances.

 

[valleysangel92]

I do understand what your saying. Its just frustrating that this is the third year in a row something has happened to stop me going to uni. My college qualifications are based in health and social care, with emphasis on health studies. So any job id go into from that would be either stressful or hectic or both. Ive always wanted to work with children so working as a nursery or school assistant is something i think id enjoy, i know i would hate office work. But to work in a school id have to retrain.

I think the biggest thing is that my doctors may have taken more time to get an accurate diagnosis before opting for surgery. Or been more open about the uncertainty of the diagnosis.

 

[DustyKat]

Did they actually tell you why it was atypical?

My son has never had a definitive diagnosis of Crohn's based on pathology because of an absence of granulomas. He was diagnosed by the GI based on what he saw via scope but the scope pathology would not give a diagnosis of Crohn's. He quickly developed complications and ended up with a right hemicolectomy and the pathology stated that there was no convincing evidence of Crohn's disease again because of an absence of granulomas.

The irony of all this is that granulomas are pathologically one of the boxes that need to be ticked to be given a diagnosis of Crohn's from a pathologist but about 50% of people with Crohn's do not have granulomas. So if that is what they are basing the indecision on then in your case, just as my son's, if it looks like Crohn's, sounds like Crohn's and acts like Crohn's then it very likely is Crohn's.

Dusty. xxx

 

[valleysangel92]

That sounds quite similar..my hemicolectomy was right sided too. When they did my scope the doctor that did it was sure it was crohns from what they saw in the procedure itself.

The report my GI had said they discoverd teminal ileitis and patchy colitis with inflammed lymph nodes which on closer inspection was not crohns typical.
They didnt say exactly why it was atypical but I havent seen my surgeon yet, have an appointment on 4th september so I'll try and find out more then.

Thankyou for replying xxx

 

[DustyKat]

Good luck with the appointment. :ghug:

The surgeon should go through the path report with you but if he doesn't just ask why the pathology report doesn't support a diagnosis of Crohn's.

I asked Matt's surgeon why pathology wouldn't support the diagnosis of Crohn's and he said that they don't like to label people with a disease like Crohn's unless they can tick all the boxes and an absence of granulomas means no diagnosis from the pathologist. The surgeon himself said it was definitely Crohn's as did the GI six months before.

Dusty. xxx

 

[fosterschick]

Vallysangel ? Out of interest are u in england , it seams t more people u speak to docs won't diagnose crohns and are even removing t diagnosis claiming to have removed t affected area ! My mum works in t hosp and t number of crohnies havin a retraction and not getting dianosed is maddening xx stick to ur guns ask them to write down how they claim to prove u don't have crohns xx

 

[valleysangel92]

Good luck with the appointment. :ghug:

The surgeon should go through the path report with you but if he doesn't just ask why the pathology report doesn't support a diagnosis of Crohn's.

I asked Matt's surgeon why pathology wouldn't support the diagnosis of Crohn's and he said that they don't like to label people with a disease like Crohn's unless they can tick all the boxes and an absence of granulomas means no diagnosis from the pathologist. The surgeon himself said it was definitely Crohn's as did the GI six months before.

Dusty. xxx

I will make sure that I ask him exactly why they are questioning the diganosis when I see him. Thankyou .

Vallysangel ? Out of interest are u in england , it seams t more people u speak to docs won't diagnose crohns and are even removing t diagnosis claiming to have removed t affected area ! My mum works in t hosp and t number of crohnies havin a retraction and not getting dianosed is maddening xx stick to ur guns ask them to write down how they claim to prove u don't have crohns xx

Im in south wales, the second opinion is going to be from a professor in England. My surgeon is pretty good though so i dont think he'll let me be messed about. When my GI told me that they werent sure he seemed as surprised as me since he didnt do the colonoscopy so he went off what the main specialist said (a different GI who i almost never see).

 

[Pointy_ears]

If they offer it see if you can get a second opinion from Professor Dion Morton. He is the single most caring surgeon I ever met and he's very knowledgeable, he's the only person I will let near me with a scalpel. Hope all goes well for you on the 4th.

 

[valleysangel92]

My surgeon is brilliant tbh... Totally happy with him. Not so with the so called crohns specialist though, only seen him once in the past year! Had to see another gi who does his best but it's not his area.

I can't remember who the second opinion is coming from.. If they can't come up with an answer I will ask about the one you mentioned though, thanks for the suggestion . It's nice to have options and I can't see my regular GI having an issue with me at least asking, he's very open to suggestions and if he was an IBD specialist I'd happily recommend him to anyone.

 

[Pointy_ears]

It's the one benefit of the NHs you can see practically anyone I hope you get some answers soon it's not nice having everything so uncertain. I wasn't happy with any of the surgeons or gastro docs I saw till things got really bad and they referred me to prof. Since then he had my care transferred to much better specialists. I now have my care handled by much better specialists all of whom I can google. I never trust a doctor I can't google.

 

[valleysangel92]

I googled my surgeon haha, seems he has a very good reputation, and I see why, lovely bedside manner, friendly but straight to the point, gets things done quickly and doesn't let other doctors mess you around . The gi I see is the same it's just a shame the specialist is a let down! Where is the prof based?

 

[Pointy_ears]

Birmingham at the QE. Same for my GI Dr Jason Goh, another fantastic doctor. They're both very friendly and willing to listen.

 

[valleysangel92]

Oh gosh... Would be a very long track from south Wales

 

[Pointy_ears]

Yeah the QE has patients from everywhere though to be honest. I was on a ward with a guy from Durham who had come down for an op.

 

[valleysangel92]

Okay, well I'll see what happens, hoping it won't come to that since I can't drive and dad works, and trains are so expensive especially when I don't work, thanks so much for the information though! *hugs*

 

[Pointy_ears]

Your welcome happy to help *hugs*

 

[valleysangel92]

My appointment with my surgeon is tomorrow, making a list of questions from this thread and hoping they have some answers back from the professor in England. If anyone has any more question suggestions then I'm all ears. Thankyou all for your support, I will let you know what he has to say.

 

[Mountaingem]

I would ask them to define atypical-yours seems a textbook case. When I read your post it was freaky because your symptoms mirror mine in every way at the same age. I had symptoms from age 14 and yet didn't get a definitive Crohn's diagnosis until I was 32 when I had an abdominal hysterectomy. My surgeon actually spotted it on the outside of the bowel. No matter the results, you definitely need a plan of treatment. Best wishes on your appointment. *hugs*

 

[valleysangel92]

Thankyou, it's on my list! Having this place is so reassuring. Good to know I at least seem textbook to you, makes it a lot easier to keep pushing for answers.

 

[Pointy_ears]

Hope all goes well tomorrow Nicola! Are your joints and other symptoms feeling any better?
I hope they give you the answers you want, I'll be thinking about you.

 

[valleysangel92]

Thankyou
My joints are still pretty painful, so I'm hoping they have some sort of explanation .
I'll let you know what happens

 

[valleysangel92]

Hey all.

I just got back from the hospital. The professor sent a report back saying he thought it was "probably" crohns. The thing that seems to have confused them was the lack of ulcers when they operated. However, there were ulcers in my colonoscopy and I had been on a long course of steroids which probably cleared them up. The professor also questioned my past medications as he thought there could be some link. I was on ibprophen for a long time when I was younger so my surgeon thinks there was probably a mixture of both crohns and damage from ibprophen.

I'm not on any maintenance medications and will see my GI in six months. If anything flares up before that I can get a referral from my GP, call the IBD nurse or I can call my GI's office to request an appointment sooner.

 

[Pointy_ears]

That's good news I guess that they're not giving you any meds. At least that's a little while longer you can avoid the side effects. It's a Shane they still haven't given you a definitive diagnosis though.

 

[valleysangel92]

Well they seem pretty confident, I think it was just that the ulcers had cleared up from what the surgeon said. So that'll do for now, apparently I was an interesting case to work on.. Never know if that's good or bad!

 

[Pointy_ears]

Lol I've been told that a couple of times! It was good for me because I got to mess with the heads of my consultants med students after my operation its neither good or bad really it's there way of saying they enjoyed working with you without sounding morbid.