Starting treatment

[joo]

Hi I was diagnosed with crohns 2 months ago was told i had 10 cm in my small intestine is this alot?

I was doing well was on entocort for 6 weeks 3mg 3 tabs in the morning. Nw i.m back in hospital because i had a skin abscess on the scar of lapascopy 2 months ago which how the first discovered i had crohns. The have drained the abscess and i have no remaining pus and they seem confident that there is no fistula however the abscess was caused due to the crohns.

anyways i have now started treatment 4 iv injections of hydrocortisone a day and 8 pentasa the held back on the imuran because my bloods show the inflammation seems to be coming down. I have started back eating yesterday light diet and it stayed down however i still have a heavy dragging feeling on the right hand side is this to be expected?

i never had the regular syptoms of crohns except for the abdominal pain and constipation feeling bloated and full.

I'm only turning 20 and confused about everything docs say i'm responding well to treatment but i tought that when i was on the entocort. surgery is my worst nightmare at the moment just wondering anyone can help with explaining the meds i'm on now and bit more about the abscess

thanks so much.

 

[ameslouise]

Hi Joo and welcome!

Sorry to hear about your troubles, but glad things seem to be taken care of with the abcess. If you don't have any daily symptoms of Crohn's, that's great! The Pentasa should be enough for you b/c it is for mild to moderate Crohn's. You can't stay on the Entocort long term because it is a steroid.

Good luck keeping everything under control! You'll find lots of advice and information here on the forum!

- Amy

 

[Crohn's 35]

Hi Joo :bigwave: sorry you have to be here but this is the best place for support and information. Surgery does sound scary and at your age you should really avoid it at all possible. Many people do great on Remicada or Humira, it could help you out so much. 10cm is not alot, but it depends exactly where. Keep us posted ok. Hugs.

 

[joo]

Hi thanks for ur replies I have it in the small intestine the ilieum. But beacuse of the abscess i'm scared that its more serious than i tought.

I'm on pred now and pentasa, flagyl and cripoflaxin the latter being for the abscess infection i think.

I'm only on the treatment a few days now but still very swelled and hard mass on my right hand side is this to be expected. Bloods show inflammation is coming down slowly.. 11.6 is my white blood cell count anyone know what it is meant to be?

thanks for replies in advance so knew to this and finding it hard to get my head around it

 

[ameslouise]

Hi Joo - it took me MONTHS to get my head around my Crohn's dx so you are not alone there!

Be careful on the Cipro. If you have ANY inclination of tendonitis - esp in the Achilles, stop taking it immediately and call your doc.

- Amy

 

[littlemissh]

Your White cell count is usually 4-11. If it is raised it can mean inflammation or infection. 11.6 is nearly normal. Other signs of inflammation are raised CRP, ESR, platelets, ferritin.

 

[joo]

Hi Littlemiss

so my white blood cells are doing good then.. my cpr is 12 a moment is that good?

anyone also have info between how u know u have scar tissue or just inflammation?

 

[littlemissh]

crp of 12 is also near normal.
Not wanting to cloud the issue but there is a subgroup of those with crohns whose esr and crp don't increase if their disease is active, so in those you cannot rely on these markers. It looks like you are not one of those as yours were raised and have improved with medication so it is all looking good that you have responded very well.

 

[joo]

thanks littlemiss u were great help.. Docs told me i was'nt bad case only 10cm in small bowel now 2 months on back in hospital developed abscess on one my scars from surgery but the say its due to the crohns not surgery.. big swelling mass on right hand side always there and only developed V and D in hospital.. so confused but finally their treating me for crohns 8 pentasa and 4 hydrocortisone injections..

so basically dont no if im mild case or has this abscess complicated things hate when docs cant giive you straight answer

oh also how long were u on pred for and how many daily?

 

[littlemissh]

I've been on prednisolone since the beginning of october 2010 ..and still on it. Now I am down to 12.5mg and am cutting down by 2.5mg every 4 weeks if things go to plan for once.

 

[Keona]

joo
someone posted this - you might find it helpful

http://www.bloodbook.com/ranges.html

 

[DustyKat]

Hi joo and :welcome:

Sorry you had to find your way here but on the upside it is a fab place for support and info.

10cms of affected bowel is not much so that is good.

If there is no fistula associated with the abscess then drainage and antibiotics should clear it up. You will know if there is a fistula because over time the abscess will reform. I assume you have had a scan done and that is why they are confident there is no fistula?
If there is a fistula then surgical removal is the only treatment for one in that area.

As littlemissh has said, your WCC and CRP are very close to normal which is good and seems to indicate that the drugs are working. Just also be aware that steroids can mask symptoms.

anyone also have info between how u know u have scar tissue or just inflammation?

Things like CRP can help determine if inflammation is present but is only an indicator, it really doesn't tell you anything else. A CT Scan or MRI with contrast or an Enterogram will tell you quite accurately how much bowel is inflamed. If your inflammatory markers were normal and you had no other symptoms of flaring then perhaps you could assume that any abnormalities present could be attributed to scar tissue. It is a difficult call to make though.

The hard mass could be acute inflammation, thickening of the bowel due to chronic inflammation, abscess, blockage......it really is something you would need to ask your doctor about.

Good luck, I hope things continue to go well and it all settles down. Keep us posted!

Take care, :hug:
Dusty

 

[joo]

Thanks guys for replies..

yea the did a ct scan and there is no fistula at present shown on scan.. there is still a small bit of ooze coming from scar but its just pus and blood doc says thats good..

however i'm still so confused how the abscess formed its coming from my small bowel how did it get to my scar just above my pelvic region.. docs said cos surgery only 2 months ago thats weakest part of my body and it came out there.. if any one had more info or had this type abscess be great

i.m doing well with the crohns syptoms the fear of the abscess re occuring is getting me down though as it is a complication and i got it so early in my DX it really sucks!

p.s the forum is great help

 

[DustyKat]

If your disease is the distal area of your ileum then that is where that part of your bowel lies, deep in the pelvis. A lot of people with problems there feel pain in the right lower side and and around the navel extending down to the pubic region.

An abscess is caused by infection and in Crohns, abscesses that aren't connected with a fistula are caused by inflammation of the bowel alone or by causing inflammation of the surrounding structures...other organs, muscle, tissue. When structures/tissue become inflamed they swell and leak fluid, sometimes this will cause an abscess. An added problem, when the bowel is inflamed it becomes swollen and can leak fluid into the abdominal cavity, sometimes the fluid can be harmless, other times the fluid contains bacteria and this then forms an abscess. It does make sense that, following surgery, you have weak structures that something like an abscess will naturally track to. Put another way, it is easy for pus to collect where there is a cavity or room and surgery will create that.

Did the docs say why it occurred in the first place?

Dusty.

 

[joo]

no they never said just that it is from the crohns the pus is from my bowel i'm on antibiotics over a week now to clear it up.. once there is no fistuala my mind will be at ease more.. alot of fistulas result in resecetion do they?

the pain u said is exactly like the one i had big heavy swollen feeling there relieved now since drainage hopefully with my new meds it will stay away

also i would feel very constipated no D until hospital visit why is this? god theres so much i dont know thanks for all ur help

 

[DustyKat]

A fistula in the ileum region, and this is a complication of Ileal Crohns, can only be treated by surgery. Many people here have perianal disease and the fistula's in this region respond well to the biologics (Remicade, Humira, Cimzia), unfortunately ileal fistula's don't.

I don't want to speculate and cause undue worry so it would be best to get the docs to clarify what is going on. Please take my following thoughts as my thinking out loud and only as that. If they are saying it is from your Crohns then that seems to indicate that you have active disease, is that what they are saying?
If you were constipated then that could be explained by the bowel being swollen and inflamed causing narrowing. The Hydrocortisone and antibiotics will reduce those things, hence no more constipation.

Dusty.

 

[joo]

yea i am in a flare at the moment does that mean that its active?

god i hope its not a fistuala really dont want surgery going to ask if they will do another ct sacn rule it out for defo..

does crohns have the tendancy to spread? do you think an abscess such as mine is a big complication impression i'm getting is my crohns is'nt extrememly bad(hopefully) but i'm getting a more caustious vibe now off docs since abscess formed?

 

[DustyKat]

Yes a flare means active disease.

Unfortunately perforations can be difficult to visualise if they are only micro and there is a lot of inflammation. Air visualised outside the bowel though should give you some idea if there is a fistula.

Do you have a drain in? If so they can do a sinogram and that will definitely tell you if there is a fistula.

In a flare your CD can certainly spread but hopefully the steroids and antibiotics pull it right back again. Abscesses and fistula's are complications of ileal CD but how they relate to the severity of your disease is hard to say. What I mean by that is do you gauge severity by how much bowel is involved or how deep in extends in one spot. Does that make sense?

I would imagine the docs are now being cautious because you are flaring so close to surgery. Perhaps they have underestimated the extent of your disease and you need to go to Imuran now.

Dusty.

 

[joo]

Hi seeing surgeons again today the swelling is back in my lower right side near the site of the abscess and there is still pus draining from site a week later.. they talking about more surgery a drainage bag?

so down thought was getting better white blood cells gone back up to 16.. and still overall pressure in my stomach.. antone have info on the drainage and why the antibiotics cirpo anf flagyl aint working however my temp is fine and my appetite is back apart from today with the thoughts of more bad news