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Crohn's Disease Forum » Your Story » Newbie…lurking and reading


07-18-2015, 03:44 AM   #1
Twinflower26
 
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Newbie…lurking and reading

Hi everyone,

I just had my colonoscopy and gastroscopy two days ago. Back story…chronic abdominal pain that started about five months ago…mostly right side, but sometimes also across the upper abdomen. Massive bloating. Change of bowel habits (irregular, but not diarrhoea, more constipation than I've ever had previously). Mucousy stools. No significant weight loss though.

General b/w came back mostly normal except for the albumin which fell under what was considered normal.

So, my gastroenterologist had a look under the hood and saw in his words, "massive inflammation" in the part of the small bowel that he could access via the gastroscopy and patches of inflammation in the large bowel. Biopsies of the relevant areas were taken and I'm waiting to hear back on Tuesday.

Not sure if it's Crohn's or something else…the below average albumin result has me a little concerned.

Anyway, just wanted to introduce myself and say hello.
07-18-2015, 09:39 AM   #2
scottsma
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Just wanted to say Hi and welcome.It's always worrying and confusing when symptoms,and then diagnosis emerge.Hopefully you'll get things sorted soon and you'll start to relax.Please keep us updated.we're all interested and supportive.Meanwhile have a look around the forum,but please bear in mind that "We're all different"!!! that goes for symptoms,diagnosis,meds,treatment and diet.It's certainly not a boring condition.
07-19-2015, 05:50 PM   #3
Honey
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Hi there and welcome,
I hope all goes well for you. It takes time to get a diagnosis and the meds that suit you. This forum is good for sharing experiences and info. Remember, we are all individuals in our illness and response to meds. Best wishes, let me know how you are doing.
07-19-2015, 08:05 PM   #4
dave13
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Welcome! I think many of us hid in the weeds before actually joining the forum,gotta check things out,right? Thanks for introducing yourself,we all have a story and you never know who might benefit from hearing it.Let us know how tuesday goes.
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07-21-2015, 04:41 AM   #5
Twinflower26
 
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Hi everyone. Thanks for the kind words.

So, the gastroenterologist phoned today.

His diagnosis is post-infectious bowel disorder. I guess the pathologist noted significant metaplasic (?) changes to the small bowel…not celiac, apparently not crohn's, but some other condition that has come about as a result of the severe GI infection I had last year. I did a round of strong antibiotics (one of the types with a dozen warning labels on the side of the packet) and I thought that I had seen the last of that terrible episode. Guess not. The doctor went into detail about the type and nature of the tissue changes, but as I was on the side of the road with two kids hollering in the back seat, I didn't take notes.

So, there is lasting and notable change to my small bowel that has resulted in the inflammation and pain. The doctor says there's nothing to be done about it except wait it out and it should clear up "in a year or two."

Anyway, thanks again for the welcome and if there's a support forum for discussion of supplements/diet approaches that anyone is doing to help reduce inflammation and improve energy and daily quality of life, I'd love to read up as much as I can. I may not have been diagnosed with crohn's, but I'm apparently going to have to put up with this for a good long while (another reason to stay off google, I skim read the studies today that reported sometimes it took 6-8 years to recover). I'd appreciate any wisdom and advice.
07-21-2015, 08:14 AM   #6
scottsma
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It looks like it's going to take a while to get sorted Twinflower,poor you.
I'm at a loss what to say except let's know how you're getting on in the future.

Oh,and keep warm.
07-21-2015, 06:42 PM   #7
Pattynocolon
 
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Hi everyone,
I'm really not sure how this all works but I'm new to all these forums. Let me start by saying I started getting constipated when I was pregnant with my second child back in 2008 everyone said not to worry it was just a pregnancy thing. I let it go. After she was born the problems continued to get worse, bleeding, mucous and diarrhea. I called the doctor they set me up for a sigmoidoscopy. The doctor said I had proctosigmoiditis ( ulcers in my rectum all the way up to the transverse part of colon.) so they put me on all kinds of meds. I ended up pregnant again with my 3rd baby. That pregnancy made me flare up so bad, but I refused medication for the baby's sake. After she was born I ended up catching c-diff and was hospitalized for 2 weeks. I had like 5 colonoscopies thy could never get to the ileum because I was so swollen they didn't want to go through my colon. So more medications, enemas all kinds of treatments for ulcerative colitis ( nothing helped ) I continuously got sick losing so much weight. I ended up so sick again I was hospitalized this time because my colon swelled up so big that it almost burst ( Toxic Mega Colon ) My poor husband and children thought this time I was going to die because my fever was 106.4 I was so out of it. Luckily they caught it in time that they were able to give me antibiotics and get me better. After this scare the doctors and I decided the only way to cure what I had ( ulcerative colitis ) was to remove my entire large intestine. So in 2011 I had it removed and they made a jpouch out of my small intestine with a temp ileostomy. I thought this was it I was going to get better we cured my disease!! Yay. A few months later I got pregnant with my 4th child. ( after they told me chances of having a baby were very slim). Luckily I had the ileostomy removed before they knew I was pregnant ( that's a whole different story) As my pregnancy progressed they were concerned because I all the narcotics I was taking ( all prescribed) 360mg of Oxycotnin a day plus about 80mg oxycodone a day. I thought the baby wouldn't make it and if he did he would have so many problems. So I delivered a healthy baby boy at 37 weeks at that time I was only 104lbs. After delivery I was having a lot of problems with my jpouch initially they thought it was pouchitis. But oh no I had more ulcers all in my jpouch. This was not what I wanted to hear, I ended up with another ileostomy but everything that could go wrong with an ileostomy did, I ended up with a blockage and hospitalized again, worst pain I have ever felt. Then the infection started I went home for a few weeks then I went back to the hospital for another 2 week stay. Going home for the 3rd time with a picc line for antibiotics. (6 weeks). Through all this fun I still only had a diagnosis of ulcerative colitis, come on really?? Mind you I had all kinds of Crohn's disease symptoms ( huge ulcers in my mouth, erythema nadosum (large lumps under the skin from my knees down) bleeding, mucousy stool, diarrhea up to 20 times a day) yet no doctor would diagnosis me with crohns I think they were afraid to admit after all these years they were wrong. I took it upon myself to go to Mass General where the doctor looked at my records and said are you kidding me you definitely have Crohn's disease and I'm so sorry that you have had to go through all of this because if we had just figured that out back in 2008 or even 2011 we could've saved your colon. I wanted to cry so bad, everything that me, my husband and my poor children have had to go through over these last 7 years has been hell!! Also did I forget to mention I worked full time through all of this at a hospital. I was a phlebotomy supervisor for over 11 years, I recently decided I couldn't do it anymore. Right now I'm scheduled to go in for a jpouch excision and a permanent ileostomy. Hopefully this will alleviate all the abscesses ( that have seton strings in them ) that I keep getting. This disease has ruined my life for the last 7 years and I'm tired of it. My poor husband has been so good through all of this, I couldn't imagine not being able to be intimate with my new wife for months on end once it was over a year. We were married August 2008 right before all this started!! We joke around and say I'm allergic to him. I'm so sorry for going on and on but it feels so good to get this all off my chest. Even as long as this is it's really only a quick summary I'm sure I've missed quite a bit of info but I thank anyone who reads this truly I do.
07-21-2015, 09:42 PM   #8
teeny5
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Welcome Twinflower26! Sorry to hear you will have a long road for recovery. There are a lot of diet/supplement threads here:
http://www.crohnsforum.com/forumdisplay.php?f=17

Pattynocolon-welcome to the forum! Feel free to vent away and ask questions...that's what we are here for.
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Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


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07-21-2015, 09:44 PM   #9
Twinflower26
 
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Welcome Twinflower26! Sorry to hear you will have a long road for recovery. There are a lot of diet/supplement threads here:
http://www.crohnsforum.com/forumdisplay.php?f=17
Thank you!
07-22-2015, 12:01 PM   #10
Pattynocolon
 
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Thank you I realized I posted this under someone else's question. How silly, so I posted it under my story.
07-22-2015, 02:21 PM   #11
Twinflower26
 
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No problem, Patty. I don't mind.
07-22-2015, 02:25 PM   #12
Madhu
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Hi Twinflower26,

Welcome to the forum!! Atleast it's good to hear its not crohn's I hope you feel better soon!
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Hubby dx with Crohn's in Feb 2015, in remission from Feb 2016 to Feb 2017.
2 anal fistulas (setons placed in June 2015 and removed in Feb 2016)

Mild flare in Mar 2017. Remicade schedule adjusted

Current Meds - Remicade 10mg/kg
07-22-2015, 02:47 PM   #13
Twinflower26
 
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Thanks, aarthi. I'm going to delve into the info in the link teeny5 posted and see if I can get the inflammation settled down and maybe life will be a bit more back to what it used to be.
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