Hello

[Amylou]

Hi my Names Amy Im 28 and was diagnosed with Crohns at 21. I first started with problems when I was 19 I developed a perianal abcess and was too embarassed to go docs about it so left it and coped with agony for a few months until I just HAD to go!! Well to cut a long story short had a nightmare after that point in and out of hospital for draining abcesses, fistulas, Temporary ileostomy for sphincter muscle damage but finally about 2005/2006 the seton id had put in fell out and I had been well since then!! Felt great thought my nightmare was over had my first baby girl in 2009 pregnancy went fab felt great alway through!! But unluckily im starting to have problems again :-( been to the specialist today thinks I may have a internal abcess I am in alot of PAIN!!! Mri scan next wk been put on ciprofloxacin just hope and pray I dont need surgery!!! Looking foward to hearing other peoples storys on here and have people to talk to with the same disease!

 

[Twinkle]

Hi Amy, and welcome.

Sorry to hear about your potential abscess. I know from experience how horrid they can be! (Had one from Oct-Dec last year, and dr's suspect another one is now rearing it's ugly head - should have an MRI tomorrow to find out for sure!) With me the doctors tried to treat the abscess with meds for as long as the possibly could, as surgery can cause more harm than good. I'm sure it will be the same for you - surgery as a last option!

Good luck next week. Let us know how you get on.

 

[Amylou]

Thankyou for your reply twinkle!!! Sorry to hear about your problems with abcesses they are horrid painful things when I had my last ones they came to the suface but I am very worried about its whereabouts this time! Have yours been internal? I started with the pain just after christmas and was put on antibiotics from the doctors I got better and the pain eased after a few weeks but a few days after I finished my course the pain came back with a vengance!!! I am waiting for these antibiotics to kick in the hospital have put me on 750mg so hopefully it wont be long!! Feels like im guna explode!! Thankyou for the good look and good look with the mri I got to wait for the hospital to ring me for mine and just go in!! Look forward to hearing how you get on! Will keep you posted!

 

[Nancy Lee]

Hello Amy and welcome to the forum!

I'm so sorry you are going through such pain right now...
Let's hope it can be treated with meds rather than an operation.

Keep your chin up and let us know how it goes.

Once again....welcome!
Healing hugs~Nancy

 

[Astra]

Hi Amy
and welcome

sorry I've not had any experience of this, I have a sore bum tho! Doc has checked it and nothing there, his dx was 'over use'????????????
Really hope it's nothing sinister for you and it can be healed with meds rather than surgery.
Let us know how you get on
lotsa luv
Joan xxx

 

[Twinkle]

Hi Amy,

Yes mine was internal, and went unnoticed for so long that the medicines couldn't really do anything with it!

So glad to hear your meds have been increased, hopefully they can nip it in the bud sooner rather than later!

 

[Amylou]

Thankyou for your welcoming msgs Nancy & Joan. Sorry to hear about your sore bum Joan! Nothing there? Is it still being investigated? I am getting to the point now tho feel like going to the doctors to get admitted don't think I can stand this pain any longer! Ive been taking tramadol painkiller which does make the pain subside alot but I feel like im on cloud cukoo!! Been taking these anti biotics since saturday and dont feel any better yet in fact the pressure feels worse!! Can't wait for this MRI scan to find out exactly what and where the problem is! Hi twinkle how did they operate with it being internal did you have a drain fitted? Did you have your Mri scan? Hope all is well

 

[Twinkle]

Hi Amylou,

With my last abscess I had keyhole surgery to have it drained and some tissue removed. I was under aneasthetic for 2 hours, spent 1 hour in recovery and had an overnight stay for obs, but I was discharged the next day, sore and swollen but feeling OK.

I'm sure once you've had your MRI they'll give you a plan of action, don't worry. Let us know how you get on!

x

 

[LOSTnut]

Hi Amy,

here's hoping that the antibiotics will kick in soon. Abscess' ain't fun at all and I dealt with (thankfully only one) for quite some time. Good thing was it came to the outside and it was ALWAYS in the same spot, so after time I got really good at detecting the first sign and running to my GI for the antibiotics. However, ifI was only a day late they would take to long to kick in and the damn thing would explode on me with crippling pain and swollen abdomen until it came to a head and would drain. Ahhh, the relief of that ...
Anyhow, wishing that you will be able to avoid surgery ...

:getwell:

 

[Amylou]

Thought id post on here havnt been on for a while Had a complete year of hell with this awful disease!! Ended up in hospital with the abcess in january and got it drained they could see I had a fistula tract on MRI but didnt know where to put the seton!! Anyways 3 months later after 2 courses of antibiotics the BEAST came back!! My real hell started now In May!! Back in hospital had an MRI went to surgery surgeon dug a hole in my butt to try find cavity but couldnt so put a wire in to keep it draining!! I was in alot of pain went home hoped id get better but didnt I could hardly walk took me 2 attempts for hospital to admit me again & doctors just told me it was normal!! NORMAL like ive been through this before this aint normal!! Went on like this for over a month the agony!!
Anyways had another MRI and bingo Abcess cavity still there but this time I knew exactly where the BEAST was under my old scar tissue!! Went theatre they cut the cavity out so had a big hole in my butt cheek with this painful drain sticking out!! But they couldnt find the fistula opening had to go back in 2 weeks to have a seton put in!! Went back the cut me again but this time couldnt get the probe through the fistula tract aaarrrrrgggh!! so had to go back again in another 2 weeks to try again!! The day after this surgery I started with pain and swelling in a different area and had to push pus out to feel better!! Got straight on antibiotics but had one more flare before I saw surgeon again!! Told surgeon what was happening woke up for op and had 2 setons put in he said the pain was part of the same cavity and if it flares up agen to go on antibiotics!! I was so confused!!! I was just coming round from anastetic when he told me that!!
Went home and knew things still wasnt right was having pain when going to toilet seton had been fitted internally which was weird to me never had it done in the past like that before!!
I was so sick of these surgerys my bum had been cut so many times Id lost loads of weight and felt so ill I was so worried about what was happening to me!!! I kept on metro & cipro I darnt come of them I hardly had any drainage from the seton coming out and felt so infected inside!! Managed to push for a quicker appointment to see consultant He set up for me to have another MRI colonoscopy and xray barium!! Told me to come of metro but keep on taking cipro!!
What happened next was awful I started with pains up the back of my bum throbbing aching pain while at work Id only just gone back after 3 months off already!! Then pressure down there was awful by the time I got home I was in so much pain I had to sit on the toilet and push the infection out it was so awful I knew something was wrong a seton wasnt supposed to let this happen!! The morning after I felt alot better after getting most of the pus out!! so I went to work but the following sunday it happened again and was even worse!! I couldnt wait any longer for my MRI I rang the hospital ward and saw a doc next day!!
They admitted me and got an MRI next day!!! BINGO another abcess cavity in a different spot!! The seton just wasnt working!! Had surgery last friday they drained it and made my fistula tract wider to keep the cavity raining but also had to remove alot of infected tissue!! And they had to cut me agen ouch!!! Had 2 setons put in and this time I can see them on the outside I asked him to do it that way!!
Went home next day and thankfully so far so good I am draining yaaaay never though id be so happy to have a leaky bum!!! Im still quite sore and cant sit down prop yet wound stings also because of all the stuff coming out of my fistula cant avoid it getting in it just getting in baths loads of times and shower up my bum!!! Im having tests to see if I can go on the drug remicade so go to see about that on 6th sept heard its good at closing fistulas but am a bit concerned about catching other things!!
This year has been hell for me and my family my life has been non existent!! Had a total of 7 anastetics!!! I have a 2 year old girl and Ive not been able to be a proper mummy with being so ill!! Its put me off having any more kids!! I would love one more but its been so difficult!! Im lucky to have a great partner who luckily has been off sick from work due to knee reconstruction opertaion back in April!! Ive never felt so abnormal in my life I just hope Im on the road to recovery now with no more abcesses coming up!!
It has made me realise what a nasty seroius disease this is and what it can do to you body!! Hopefully going back to work next week and hope the setons keep doing there jobs xxx Hope everyones ok out there xxx

 

[Astra]

Hiya Amylou
good to hear from you again

hope you don't mind, I've tweaked your post and edited to make it easier to read, sometimes a whole block of text isn't easy on the eye!

You've certainly had a terrible time, I really feel for you.
Hope you get Remicade, hopefully it will close the fistulas. At this stage, if it were me, I wouldn't be concerned about side effects of it as long as it did the job of getting rid!
Just need to ask, was it a colorectal surgeon or a general surgeon?
take care, get some rest
xxx

 

[Amylou]

Hi Astra!! Ha thats fine at work my boss always tweeks some e-mails I send im not too good I just blag !! I think he is a general surgeon!! The specialist I was under was quite far away and when I had my daughter I asked to be transfered back to my local hospital because it was easier he transfered me to him!! He is the best my hospital has got!! I would have rather have gone back to my other specialist but I was in that much agony I couldnt wait for an appointment at first!! Events that have happened have left me questioning his abilities!! Thanks for the advice!! I just hope Im over the worst now!! How r u? xx

 

[Astra]

ooo Amylou,
wait til fellow member Muppet reads this! He had a bad do with a general surgeon and his fistulas!

I'm doing ok thank you, on school holidays and loving it!
xxx

 

[Amylou]

Oh what happened to muppet? How do I read his story? Are general surgeons not realy good at all with this area then? I Just assumed these surgeons know what there doing when they operate I have learnt alot from my experiences so far this year!! Glad your well xx

 

[David]

Hi Amy,

Ugh, I'm so sorry you've been through so much this past year, you poor thing. That must be absolutely awful

Is your surgeon a good one? I don't know. What I do know is that if I was going to have surgery down there, I would 100% sure go to a colorectal surgeon unless my GI specifically vouched for a particular general surgeon.

I hope things get better for you soon!

*hugs*

 

[hannah-rose]

Sometimes Colorectal Surgeons are also General Surgeons, you might be able to check your hospital's website to research your Surgeon, I know you can do it through Bedford Hospital's website. You should definitely have the expertise of a colorectal surgeon. I've had butt surgery and I would only want a specialist down there!

 

[Amylou]

Hi David & Hannah Rose! Thanks for your msgs!! I am definitley going to ringing the colorectal specialist to get back under the care of him!!
Even though its further away to travel peace of mind when having someone mess with you down there it will be worth it!! With my experience this year I definitley need to get back on his books!!
He found sphincter damage last time I went to him hope to god I havnt been damaged too much by the infections and cutting again already had it repaired once!! I feel realy quite stupid now for not going back to him in the first place but I have never experienced pain with these infections like this before I was desperate I just admitted myself to my local hospital!! I know these fistulas can be difficult to treat, talk about the worst area ever for infection and its frustrating to both patient and surgeon but I feel Ive been through alot of pain and suffering this year which some of it to me could have been avoided!! Can I just ask I hear alot of people say GI what specialist is that? Hope u r both well xx

 

[David]

Hi Amy,

A GI is a gastroenterologist.

Good luck to you!

 

[Amylou]

Feels like the abcess I had drained 10 days ago is returning :-( so fed up!!! Its realy deep in my tissues around my perianal area cant see it but started feeling pressure again and can feel something festering!! My bottiom itches like mad!! Just dont know what else can be done I have a seton through my fistula track but this abcess is above it but think it is getting fed from fistula opening in my anal canal!! I am still getting drainage so just dont understand it!! If I had a temp ileostomy would that help things heal? I just dont seem to be getting anywhere!! Sick of these infections & feeling completley Urrgh down there my bottom looks like a war zone from all the surgerys!! Guna start taking metro again been taking cipro since I had the op just metro makes me feel terrible!! Tried ringing the colorectal specialist sec today but shes on holiday for a week and the consultants on holiday for two weeks :-( If this bugger flares at any point am just guna have to go back to my local hospital These things dont do waiting!!! Having an xray barium on my small bowel tommorow at hospital might go to the ward to see if i can see a doc to ask there advice!! Seeing a doc about drugs nxt week but dont want to be going on any immunosuppresent drugs if Ive got active infection xx

 

[Amy (worrywart)]

Hey Amy
i'm so sorry to read about your bad experience with this horriable disease at the mo ;-(
but i said i'd post a reply because your story sounds so similar to mine !!! so i understand a little what your going through ;-) i'm 12 years with crohns and had 10 blissful years of remission and sailed through 3 pregnancies if i'm honest i actually thought it was gone !! then bang on a trip to disney land with my 3 beautiful kiddies i discovered a dreaded perianal abscess and to be honest never thought it was from my crohns xx anyway to cut a long story short i ended up in a colerectal surgeons office and within 2 weeks had a draining seton put in follwed by 4 more seton ops and now i've a chronic fissure and more drainage so i'm at my wits end and so is my husband from probably listening to me lol ;-) i'm hoping to hear on thursday what my next step is but im gathering 6mp or humira (side effects scare me silly) anyway my moral is your not alone , we've got to keep the chin up and things will get better on this bumpy ride
oh and i'm Amy obviously lol and i'm 28 theres 2 more things in common
loves and hugs from Ireland xx

 

[Amylou]

Hiya Amy!!

Thankyou so much for your msg!! Sorry to hear about your problems!!
Bless you your having it tough at the minute Ive never had a fissure but know someone who has got one and they are in alot of pain after bowel movements this disease is awful!!
3 Kids to look after aswell bet you find it tough sometimes I am realy finding it hard to cope with my little girl libby at the minute!! How old are your children? Shes only 2 and is getting realy upset with her mummy disapearing hospital every 2 minutes she dosnt understand yet!!
I ended up back in hospital yesterday abcess burst they were going to do an EUA today but it would only be a tempory help because this fistula tract is just feeding it!! Me and surgeon discussed this and decided not to go more poking down there is going to prob more harm and it cant help in long term & she felt most of the pus had come away from me!!
My white cell count was not too far over normal!! But if I get any worse I have to go straight back in!! Im totaly desperate tho I feel awful down there itchy and infected the pressure gets awful!! I do worry about it spreading to my other cheek!!
My consultant is on holiday at the min & have to wait til he is back My next step is a temp ileostomy which im hoping to have done this month. Ive got no chance of healing until this has been done. Seeing the GI nxt week but cant go on any drugs until I have the bag!! I am very nervous but ive been through this before when I was 21 so I know what to expect & Ill do anything to get better my life is completley disabled at the minute. I had a small bowel barium xray and they could see the crohns at the end of it! I cannot plan or do anything supposed to go to a wedding tommorow but had to cancel shes been a friend since we were 2 so im so sad im going to miss it!! I couldnt go on her hen doos either its totally crap!!
I know it effects everyone around us my fella is fed up with hearing me too lol and not the mention the lack of intimate time at the min I just can't bear the thought!! He is being patient tho & understanding even tho it is frustrating him!! I can't wait to see the back of this year definitley the worst year of my life!! How did you get on thursday hope things are looking more postitive for you!! It's nice to know your not alone but feel so sorry for everyone going through what this disease does to you :-( It effects everyone differently alot of people are sick/diareha (cannot spell it) all time I dont suffer that way my problems so far have been in my perianal area with abcesses and fistulas!! I also thought my problems were gone after 5 years remmision then boom it hits you like a ton of bricks!! Let me know how your doing!! Love and Hugs Back from Doncaster xxx

 

[Amy (worrywart)]

Hey hunni
so glad to hear that they are at least planning something in the hope of giving you some relief,some days i'd honestly tell them just to cut my arse of and keep it lol it's not worth the hassle ;-) I'm in the same boat never heard from my consultant and he's heading on a months holiday while i'm here pondering what the next plan is , but my nurse is hopefully ringing monday so the wheels should be in motion xx My 3 gems are twin girls aged 9 and my little man who's 6, I was contemplating on having 1 more but i'm going to count my blessings as i've been told any more kiddies would result in a C-section to avoid any more damage to my perianal area ;-( Some days are hard purely because i'm in agony which leaves me wrecked but thankfully there used to me popping in and out and theres a bakery in beaumont hospital so once i bring home chocolate dounuts their sorted lol xx I'm the same when i was first diagnosed i'd chronic trips to the loo which resulted in me dropping to 6 stone but since then it's only come back in the end of the small bowel and the perianal area so when i tell people i've crohns they look at me as if they say god i'd expect you to be like a stick but no i'm a hefty 11 stone lol ;-) really hope you get sorted pet i honestly feel your pain and dont be worrying about the intimacy thing i'm only married since feb and honestly haven't had a honeymoon period i'm too busy worrying about my bum to think of it hehe ;-) theres loads of time for making up !!!
And the bigger your little girl gets the more easier it is to explain it honestly gets easier when they get up a bit
promise to keep me posted , I'll be thinking of you
loves and hugs Amy x