'Nuther Newbie :)

[Loshy79]

Hey everyone, Ive been lurking around this place for a couple of months now, got soooo much info from you guys and learnt lots from your experiences, so thought I should say thank you, and introduce myself

So, Im a 32y/o sewing machinist from Merseyside. My crohnie journey began June 2011... Went to my GP over a discomfort in my lower right side, not constant, but enough for me to know something wasnt right. GP had a prod and said he could feel something, a lump, so packed me straight off to hospital.

Had an ultrasound, and Docs decided it was an appendix mass, which may clear up on its own, so off you go and we'll check it in a few months :yrolleyes:
Blood tests also showed I was mega anemic , so while I waited to be recalled to hospital to get the mass checked, my GP tried me out on lots of different iron tabs, none of which I could tolerate.

During the next few months I suffered more constant tummy pains and could also feel the mass getting bigger. Was finally recalled to hospital in December, saw a different doc, who immediately sent me for CT scan, then MRI (not fun!) A few days later had a call from him, he said he'd looked at my results and was 99.9% sure I had crohns and was refering my straight for surgery

So, met my surgeon in January, who planned keyhole bowel resection for me... but since then crohns symptoms have crept up, lots of pain, lots of trips to loo! Had my first flare in Feb and was in hospital for 8 days. Also had to have 2 blood transfusion.

I have mega inflammation now,the mass feels huge, so think I'll be having open surgery instead of keyhole which Im a bit gutted about.
My operation date is 3rd May, excited and nervous at the same time. Hoping getting the nasty bit cut out will give me my quality of life back.

I think thats everything....have been given no meds, havent seen a gastro doc, and no colonoscopy, so no 100% diagnosis, which seems odd after reading others experiences, but hey ho!

So if its ok, Ill be hanging around here, need lots of pre and post operation advice!
xxx

 

[Angrybird]

Hello Loshy and :welcome: to the forum, I am pleased you have decided to join. It is definetly ok to ask about the upcoming op there are many us here who have had surgery so can hopefully help with your queries. Was the doc who called with the test results a gastroenterologist? Are you now under his care with regards to getting a confirmed diagnosis?

Wll keep fingers crossed that all goes well on the 3rd, please keep us updated on how you get on.

AB
xx

 

[Astra]

Hiya Loshy
and welcome fellow Sintelliner!

Ok, questions
Did you go to Whiston?
Did you see the gastros there?
This surgeon, is he an IBD specialist? Or a general
Ok, from what I now know, don't let a general surgeon open you up!
See your GP, get a referral to the gastro dept at Whiston, get a colonoscopy, a firm diagnosis of Crohn's, then.......... some appropriate meds!
I was in hospital for a week (2 years ago) with the same swollen big mass in lower right quadrant, the terminal ileum, where my Crohn's is. I was blocked and infected.
Unless I was at death's door, I wouldn't let them open me up, even tho they insisted. The reason for this is.. scar tissue from surgery can/may create more strictures, resulting in more narrowing, resulting in obstruction.
I was on Prednisolone for nearly a year plus Metronidazole, and these meds healed me good and proper.
That mass, it's gone now.
This is just my personal opinion and personal experience.
Let us know how you get on, good luck
Lotsa luv
Joan xxx

 

[David]

Hi Loshy and welcome to the forum I'm so glad you joined!

Joan above does have a point, especially about the type of surgeon to have work on you. Some general surgeons do a ton of intestinal work though and may be very talented. I'd find out their experience level with your specific surgery if they weren't a colorectal surgeon. In addition, based upon the tests you had, what I'd ask the doctor is if the mass is inflammation or scar tissue or some other anomaly. If it's just inflammation and not scarring or something else weird going on, then often times taking medicines can get that under control. If they're wanting to do surgery because you already have substantial scarring or something that needs fixing or removal, then that probably is indeed the best route to take.

With all that said, if you just want to put your trust in your doctors I can understand that too and we're happy to support you in that manner as well

*hugs*

 

[Loshy79]

Hey guys, thanks for the warm welcome

Have to admit, my head is spinning a bit after reading the replies :ywow:
I feel like a bit of a divvy! Im so uninformed about whats going on with me, you just presume the doctors are acting in your best interest.

OK, some answers to your questions...
I am being seen at Whiston. The doc who said I had crohns is under Dr Kiff, who is a colon-rectal specialist and who I was originally under the care of.
After he saw my MRI results he passed me straight over to Dr Sannad, who I think he said is a Laproscopic specialist. I did not question why :frown:
Im not even sure what the mass is...I remember him mentioning thickening of the bowel walls, and something about distal small bowel....gosh, Im rubbish!

Ive been given an appointment to see a gastro doc (Stevenson?) 2 weeks AFTER my operation! Also one to see a dietitian in June.

I feel like I really need to do something about this.....in the 5 months Ive been waiting for surgery I could of tried medication and seen how I reacted to that.
I might try to get hold of the first doctor and ask why he thought I should go straight for surgery and not see a gastro.

Im on a mission tomorrow..hahaaa!
xxx

 

[David]

You are NOT rubbish! There is so much to learn about IBD, it makes your head spin as you say. Chances are, the doctors are doing everything right. Some of us just have experienced or seen things where we like to be more involved in the decision making process. I don't see any harm in asking the doctor why he felt you should go straight for surgery. It might help calm the spinning

 

[Astra]

It takes a while to get your head round all this!
I do agree with David, just question their motives, just to be on the safe side; not dissin them, but I question EVERYTHING regarding docs!
I'm under Whiston, but I don't know any of those docs you've mentioned. My gastro is Dr. Bassi.
Good luck with it all, sorry if we've cabbaged your head in!
xxx

 

[Loshy79]

Aww, thank David and Joan.
I really really appreciate the advice and interest you've shown, so kind!

I'd never been ill a day in my life before this struck, never stepped foot in hospital, taken an Anti -B, never even had a sick day off work. So maybe Ive been in some kind of denial/ this isnt happening mindset.

Now I know there are options out there I have to look into them.....there may well be a reason for sending me straight to surgery. then thats fair enough, but questions will be getting asked tomorrow....Ive got a list and everything, hahaa!
xxx

 

[Kip1]

Hi Loshy

Im in the same boat as you with the surgery thing. The gastro doc I see did say in my case surgery is the only option but after i said i didnt want another op ( I have had 15 ops for other non related issues) he put me on entocort. I became much worse & when I saw him 6 weeks later when I was in pain he referred me to a colo rectal surgeon.
I saw the surgeon on friday & he agreed with my gastro doc that sugery would be the best option & if I didnt elect to have it now It wouldnt be long before things got much worse for me, this may seem harsh but he was very thorough explaining things & I feel a little more confident with having the surgery now. He is also sending me for a barium xray so he can make sure there are no other problems in the small bowel when he opens me up.
I only found out I had Crohns in november but I am not new to the disease as my mum also has it but my head is still spinning with it all so I know where you are coming from.
This forum has helped me come to terms with things more as there are people who help with info, understanding & most of all support.

You are doing the right thing by making a list & getting answers :thumright:

 

[ksiwek81]

Loshy,

I'm rather new to the forum as well, but not to Crohn's. Definetly do some research on the physicians that you are working with. I wish that I had done so years ago, and perhaps the severity of my case would not have been so bad. While David is right in the aspect that some general surgeons are very talented in intestinal work, going with a colorectal surgeon that specializes in this area may prevent any further complications. This is just an opinion coming from someone that was operated on by a highly recommended general surgeon. However, in my case, it only lead to another surgery. Since then, I did some mega googling on the colorectal surgeon that I wanted to repair the other dr's screw up. The mission was completed on 2/1/2012, and I'm starting to feel like my old self again. Like I said, this is just an opinion but it never hurts to do your homework when it comes to being cut on and medicated for that matter. I wish you the best of luck, and I hope that they can figure out whats going on in there.:ghug:

Kim

 

[David]

Thanks for sharing your anecdote Kim. I'm sorry someone screwed up on you

 

[Loshy79]

Hey Kip and Kim, thanks for sharing your crohnie journeys.

Reading all the stories shows just how different everyones path has been, different symptoms, different reactions to meds....cant be easy can it!