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Crohn's Disease Forum

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It's a bit of a long story but i'm sure people still read these days. It all started last year about september, when there were restless nights or stomach cramping but i got on with it, but eventually went to the hospital, got checked for Appendicitis, no tell tail signs, so it was put down to a bit of constipation and given some liquid lax. Lovely. A few week later on the way to university i almost couldn't walk because of a pain in the lower right of my abdomen so there and then i googled it, as you do, and saw that a lot of symptoms were pointing to appendicitis. The same day i got the train home early and admitted myself to A&E/ER the next day, and was told that it now looked and sounded like appendicitis. I am the "ripe" age for it apparently (18). The appendectomy started off as key hole surgery but the vein that connects to appendix to the rest of you was nicked prematurely and started to bleed into my stomach cavity. The surgery was turned to open and i was stapled up and sent home two days later.

About 2 weeks later after vomiting, even worse pain than the previous symptoms and about 2 stone or about 25kg of weight loss, my drainage scar bust open with infection, so i was administered with some antibiotics (Augmentin, Co-Amoxiclav). Not even a week later, and without finishing my course of antibiotics, my actual 3 inch open surgery wound burst open with smelly light brown puss. Back into hospital again! They were able to pull apart the scar as it was still not full healed where the tract had formed. After about an hour of probing, pull and pushing (without pain relief i might add) to find and pockets of puss that could be found, squeezed and disinfected with iodine, I was put on IV metronidazole to get rid of anything septic in my blood and try and clear up the infection. I was sent home 3 days later with the all clear and more pills to swallow.

A month later to the day later, the same thing happens, 1 day after new years, so i'm glad i got to celebrate it. More squeezing and a different swab test with different bug results and a new IV of tazocin. It all looked like it was clearing up again, but with no surprise, it burst open again, sooner than later. This time, instead of going to hospital, i'd learnt by now how to easily change my dressings and really couldn't be bothered with hospitals any more. I was not showing signs of septicaemia this time as a sinus had been created under my skin and protected itself from my blood stream so i could cope with it and just go back and forth with my consultant.

He gave me an ultrasound scan to see where the tract was leading to and then i get a question from the radiologist i wasn't expecting, "have you got any history of bowel disease in your family?" I was stunned, i went in with one problem and seemingly left with another. Obviously they're only there to do the scan, not diagnose me so i had to wait to see my consultant. He told me to try another 6 weeks of metronidazole and ciprofloxacin to really see if i could beat this infection. He said the ultrasound might look like that because of where the infection is, making the whole area look inflamed, so i was relieved to say the least. The wound however still didn't heal and there was still discharge. The antibiotics were giving me some really schizophrenic bowels as a few days at a time i couldn't leave the toilet for ages at one time and couldn't wait to get in there at other times.

Next i was given a small bowel barium meal. Only took an hour as i went to toilet just after i drank the "tequila" they promised haha, which obviously got everything moving in the right direction. The scan i was told looked typical of Crohn's in the small bowel. I had discussed the possibility of IBD with my consultant before but he wasn't convinced it was as i'd had more than one ultrasound and they showed up differently and under the circumstances of the infection, it could just be a bit of inflammation. He then prescribes me the first antibiotics i was on and low and behold, the scar has dried up and healed, this is only as of last weeks though so im not getting my hopes up too much. Monday i had a CT scan, which added more evidence to the possible Crohn's diagnosis which i could get soon. My consultant is still not convinced, as i'm not showing many signs of Crohn's, just some stomach aches. My bowels have only ever been strange when on antibiotics, but he has booked me a colonoscopy with biopsy and passed me on to a specialist for IBD just in case.

It's been 6 months of hell, having to be deferred from uni until the next year, having my student finance cancelled and having to pay rent by getting a partial refund on my course fees, but it will be interesting to see if the infection has gone and if the abdomen pains go away with it, leaving me with the bowel i started off with. Hope i didn't bore you all, thanks if you read :D
 
Alot of Crohns patients- a good portion being male- are diagnosed when they have their appendix out. Anything removed from the body is always sent to the lab. Did they do that with you?

You will find alot of information on this forum- people are very willing to share information and histories. Its hard to find people near you with the same Dx. In general "we" are far and few between.

Your story wasn't boring and its always helpful as someone somewhere may be struggling and your story may "hit" on something that helps them!

While Chrons is not a fun disease better to know than wonder!

Good luck, I hope your Dx is negative but if its not we are all here to help you in any way we can.


Lauren
:welcome:
 
Hello there and welcome :bigwave: Good grief you have had a tough time recently, I do hope that things continue to stay healed and you do not have any further problems with the wound. Perhaps have a little nosy around to see if you can relate to any of the symptoms/experiences that others here have had whilst you wait for further tests to be done. I will keep fingers crossed that you do not have crohns but if it turns out that you do just know we are here for any advice and support you need :)

Wishing you all the best

AB
xx
 
Welcome tomahass! :)

We're an awesome and supportive bunch.. Sounds like you've been through the wars! I hope you continue to hel and get an answer either way really soon :)
 
Welcome to the forum, I'm so sorry to hear of the roller coaster you've been on :(

How long until the colonoscopy? I'm glad you're scheduled for it and hope you'll update us with what they find. In the meantime, we're here for you anytime you need us.
 
The results from the colonoscopy are in. They're 95% sure it's crohns. The biopsy still isn't back but where my appendix was is all very inflamed which points to crohns. It looks like i'll be needing a ileo/ceacal resection. The infection is now what looks like a fistula from the inflamed area, which makes sense now considering it's persistence.
 
I'm glad they're making some progress! Please keep us updated and let us know if there's anything we can do for you.

If you do have an ileocecal resection, plant in the surgeons head that you would like the ileocecal valve rebuilt if possible.
 
Thanks for the support :)
Could someone please translate the colonoscopy report if possible. I understand some of it but not as a whole. They explained it to me and my dad after the examination but i was still a bit dopey from the sedation and my dad is deaf as a post! I'd appreciate it if it could be put into English :) thanks

Preliminary Diagnosis
Normal colonoscopy.
Procedures
Vial 1: biopsy - multiple numbers from caecum, sigmoid colon and rectum for histopathology
General Comments
In the distal rectum/just inside anus is nodular on one side but not ulcerated (see photos).
there is a small patch of descrete ulceration with tethering of mucosa in mid sigmoid. rest of
colon mucosa all nonnal until what I presume is caecum. The anatomy is very hard to judge
here - I spent a long time trying to identify ileocaecal valve but could not - see photos, there
is oedematous deformity with no descrete ulceration. Biopsies taken. Overall - diagnosis not
definite but combination of rectal, sigmodi and ileocaecal abnormality and his persistent
fistula and abnormal ileum on barium stuies strongly suggests Crohn's disease.
Recommend -
Must stop smoking.
Send blood for TPMT (form given today) - will probably need azathioprine
Likley to need surgical resection of ileo/caecal area as probably tight stenosis distal to
fistula, so unlikley to heal on medical therapy.​
 
Thanks for the support :)
Overall - diagnosis not
definite but combination of rectal, sigmodi and ileocaecal abnormality and his persistent
fistula and abnormal ileum on barium stuies strongly suggests Crohn's disease.
Recommend -
Must stop smoking.
Send blood for TPMT (form given today) - will probably need azathioprine
Likley to need surgical resection of ileo/caecal area as probably tight stenosis distal to
fistula, so unlikley to heal on medical therapy.[/LEFT]
Sorry for your ordeal and continuing suffering. Just in a few words, they found some "abnormality" related to Crohn's , such as fistula and inflammation of ileum . Also, they suggest to perform another surgery to repair a fistula and put you on medication(azathioprine) to control your immune system.
 
My translation:

They took tissue samples from the first part of your large intestine (cecum) which is just after your small intestine, the last part of the large intestine just before the rectum (sigmoid colon), and your rectum. The cecum and the ileocecal valve, the flap that separates the small intestine from the large, are pretty messed up. He thinks you have Crohn's Disease. Stop smoking already, Crohn's Disease is made worse by smoking. :nonono: He sent your blood in for [wiki]TPMT[/wiki] testing which will check to see if you're more likely to get bad side effects from Azathioprine or need a different than normal dosage. You're going to probably need surgery because you have narrowing of the intestines just after your fistula and he doesn't think medicine will solve that.

I don't know what he means by "nodular on one side" or "tethering of mucosa". Does anyone else?
 
Sounds like the anus has some type if inflammation creating nodules in one side, but it has not ulcerated at this point. You want to stop this before it does ulcerate.
 
You're not going to believe this but I'm in hospital after i think i had a partial obstruction. Swells of exruciating abdominal pain, couldn't pass wind or stools, even if I really pushed. Vomitted throughout the night and barely kept down water. The pain still visits but not as often. Haven't passed stools yet as I haven't eaten in a few days, but gas is making more of an appearance. Still not as much as I'd like, but it helps settle the pain. On a drip to keep me hydrated. Only aloud 30ml of water an hour. Still got no appetite. Been updated that the biospy came back as proctocolitis, but i was told that its so near the end of my colon it could still be crohns. Its funny that its only when you cant have something, you really crave it. Never been so thirsty. Also, I quit smoking since the diagnoses and I've been doing fine, but it's something about hospitals that makes me want one quite a bit. Not sure if going cold turkey was a good idea as the cravings come with a vengeance!

P.S. Is it not a weird coincidence that I stop smoking and this happens or am I just being silly here?
 
Being discharged with steroid pills. Can't remember what he said they were called because he was talking so fast but it began with a P. Feeling a lot better now. The fistula seems to be clearing up a fair bit too since I quit smoking which is a pleasant surprise!
 
Hiya, glad to hear you are heading back home :) I should think you have been given prednisone - it is quite a popular med to be given to help get the inflammation down. Do you have a follow up appt booked to see the GI?
 
Yeh next Thursday is the appointment. That's the one! A side effect I actually like the sound of is weight gain. I've lost almost 2 stone since the start of it all, not being able to put it back on, so it would actually help.
 
The pred certainly gives your appetite a boost! Have you been given a calcium supplement to take with this? If not pls ask your doc to get this sorted.
 
I'll definitely bring it up next week. Also on flagyl and cefalexin for a week and Mesalazine (pentasa) along with the prednisolone. Any insight as to what the proctocolitis diagnosis is. Is it better or worse than crohns so to speak or is it just a specific location of the disease?
 
Per wikipedia: Proctocolitis is a general term for inflammation of the rectum and colon. Etiology

Proctocolitis has many possible causes. Common infectious causes of proctocolitis include Chlamydia trachomatis, Neisseria gonorrhoeae, HSV, and Campylobacter species. It can also be idiopathic (see colitis), vascular (as in ischemic colitis), or autoimmune (as in inflammatory bowel disease).

I wish docs would just say what it is. It could just be where the Crohns disease is, or it could be inflammation due to something else. Ask your doctor!
 
I'll hopefully be getting the brief when I see the consultant. So far at the moment it's jut a word on a peice of paper for me.
 
How fast does it take for the steroids to work because i'm feeling great! I'm eating a crap load of food, got all this motivation and energy i haven't had in 6 months!
 
Thanks! :) just wondering out of curiosity the effects of alcohol and prednisolon (40mg). I'm moving out soon and we have a few friends over for a leaving party, just wondering if i can drink. In moderation of course.
 
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Yo! You should tell them it seemed to flare after quitting smoking! It could drive them to make the distinction of if it is Ulcerative Colitis with backwash ileitis, or if it is Crohn's disease. Ulcerative Colitis is known to be relieved with smoking and flared with quitting, while Crohn's is the opposite.

Crohn's is known for giving fistulas, but Ulcerative Colitis does as well, just less commonly. As well Ulcerative Colitis is usually known to effect the rectum as you are suffering, while Crohn's colitis often spares the rectum.

Just my two cents. It's a bad situation anyways and I wish you all the best!

Feel better! Or even if you don't, at least have a balling good time at feeling terrible!
 
Wow what a mess. I'm sorry to hear. The fact that you are responding so well to the prednisone would indicate that you have some sort of autoimmune response happening here (ie Crohns or otherwise). The prednisone kind of knocks your immune system on its ass. As such, it can no longer attack you which is why you feel better. When I go on prednisone it's amazing. Seems to be the only time that my body isn't attacking itself as of late (although I haven't been on it since January of this year).

Probably already had your party, and on one hand I don't think you should deprive yourself of minute pleasures such as drinking....but on the other hand, personally, when I am in a flare, I won't touch alcohol. My body gets viciously pissed at me for doing so. It's different for everyone. Alcohol did not used to be much of a problem for me- if at all.
 

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