Sharing my story

I barely know where to begin with my story. Three years ago I was referred to a GI because of mild symptoms and a family history of IBD. It took 8 months to see the doctor and by then my symptoms had gone away and being under 18 my doctor thought it was to invasive to scope me just yet. Feeling discouraged I refused to deal with my IBD, and learned to deal with the pain and embarrassment for two years but last year it refused to be ignored anymore.

I developed close to 40 or 50 reddened bumps on my legs. It took several doctor visits and months of pain and bruising to finally get a proper diagnosis of Erythema Nodosum. Which was just the beginning of my Crohn's diagnosis.
I was referred to a GI Surgeon, who while admitting I needed to have both a gastroscopy and colonoscopy ASAP, that he really wasn't the doctor for me since he was primarily a surgeon. He turned out to be my life saver, and got me the treatment I needed quicker than I thought possible.

First off I just want to start by saying taking Pico-Salax when you have a Crohn's outbreak is cruel punishment and I still feel every inch of pain again every time I smell that horrible orange smell. My gastroscopy revealed I had a hiatus hernia which was obviously caused by inability to keep food down. My colonoscopy was a different story, they couldn't complete it because my inflammation was so bad, so I was hospitalized to get an MRI and see the GI specialist team. The MRI revealed that I had inflammation in my colon and ileum and I was officially diagnosed with Crohn's.

As upset as I was I was relieved that my year of hospital visits was over, or so I thought. I was initially put on Entocort, which I was excited about as I had heard horror stories of Predisone. After loosing 20lbs in 4 months (which was a big deal since I'm only 4'11) I really didn't think it was healthy to put it all back on and then some in less than a month; luckily my Dr. agreed. I initially felt better but after 7 weeks of the medication I had still had six or seven days of flare up, so I was put also put on Imuran. And that is why I'm here writing my story today.

I have only been on it for two weeks and it's already my horror story. First of all reading the possible side effects list made me feel like I was reading a list of my symptoms, how are you supposed to differentiate which is which!? As well I have had a throbbing headache with muscle weakness in my legs, worse pain than any of my Crohn's pain, for several days straight. Nothing is helping it; every time I take a T3 I wait for the symptoms to reduce and when they don't I count down the hours until I can take another one hoping this will be the magic pill that makes the pain go away. I went to Emergency who promptly did a CT, blood work, put me on an IV drip and gave me some magic anti inflammatory injection that is not prescribe-able.

My results were all normal with the exception of my hemoglobin being 86, which personally is not anywhere near my worst. After several tests I decided I didn't want anymore and would just keep hoping the T3s would start kicking in once I stopped taking Imuran. I know it seems like I'm talking a lot but as anyone with Crohn's knows this is just the tip of the iceberg.
I'm really looking for support and advice. I'm well aware that every Crohn's patient is 100% different and what might work for you will not work for me but I'm willing to give it a shot and I will appreciate any feedback.

Thanks for all your time, I hope you enjoyed my lovely ordeal.

Hello Liv and welcome to the forum. I am sorry to see the Imuran has given you a hard time, I assume your GI is aware of the issues and that you have stopped it? If so what have they said about what to try next?

Do have a good nosy around the forum, there is a lot of really helpful info and support here for you.

Wishing you well soon.

xxx

hello,

sound like a good chat to your doctor is in order, have you tried ASACOL to help, also i would enquire about changing the pain relief, personally i use TRAMADOL that are very effective, deffo ask about changing, there will be one out there that does work for you - its just finding it, and for that to happen the doc needs to know whats currently happening.

good luck.

Greetings and welcome, I'm really glad you joined I'm sorry to hear that the Imuran is giving you trouble though. Did they do a TPMT test on you before administering it? And do you have regular appointments to have your blood work done to make sure it's not causing any serious issues?

Again, welcome. We're here for you anytime

I'm not much help...but I can say I was also given the RX for Imuran and it made me very bad sick...then I started Humeria and it was a life saver. I don't know if that's an option for you with all the other going on, but its worth asking your GI about. I hope you start feeling better soon! Hugs!

Thanks for all the help and support guys! I'm really enjoying this forum a lot, it's a lot more "private" than a support group which I really appreciate.
David I did have the test you're talking about and it came back normal which is why he put me on the drug, but I will say he was very cautious about doing it, warning me right away "If this doesn't work get off it asap".
I haven't been able to speak to him personally about my ER visit yet which bothers me a little but I know stopping the drug is the right course of action and at least I am still on Entocort to manage my symptoms until I see him next. I do have a follow up appointment with him March 21 where I'm positive I'll be put on something else.

One weird thing I noticed from my latest CBC is my platelet count... it's at 593, when it should be between 140-440.. Has anybody else had a problem with a high plt? Is it common in Crohn's patients? And any ideas on how I can reduce this?
Again THANK YOU THANK YOU THANK YOU for this wonderful website and to everyone for being so awesome. It's giving me the morale I needed.

593 isn't *too* bad but I'm sure they'll keep an eye on it. There's lots of potential causes. For example, it could simply be due to your active inflammation.

So I saw my GI the other day and he suggested trying another drug: Methotrexate. I'm supposed to take 5 pills in the morning and 5 pills at night once a week. I won't lie I'm a little nervous especially after my bad reaction to Imuran but I'm willing to give it a try. I'm now taking folic acid daily except for the day I take Methotrexate. Hopefully this works so I can slowly get off Entocort which is barely keeping my symptoms at bay.
On a lighter note my doctor has now decided to try giving me iron through an IV! I'm so excited at the prospect of finally getting my anemia under control.

Thanks for the update Liv, I will keep my fingers crossed the Methotrexate and iron IV's will get you feeling much better

Good/Bad news? I have completely stopped bleeding however my pain has become 24/7 and it is pretty intense. The worst pain is in my lower right area which is where is where my inflammation was found on my scope. The weirdest thing is when I lift my right leg, or "sit up" (basically anytime my lower right abdominal muscles are engaged) I am in excruciating pain, to the point where even getting dressed in the morning and putting on a pair of pants could get me screaming. I've had this pain for a month or so now so I doubt it's appendicitis as I probably would be dead by now if it was, and it's not a side effect of my Methotrexate because I had this pain before I started taking it.
I have only been on Methotrexate for a few weeks now, and I know it takes a while to show relief so is it just my Crohn's coming back for a vengeance while I wait for the drug to kick in?
Any ideas would be helpful!

Liv,

Call your GI and see what they say. If you can't get ahold of them, you may want to go to the ER. You should never be in excruciating, scream out loud pain.

Hey everyone just thought I'd give an update even though it feels a little vain to just talk about my condition, but us sickie's just need to vent sometimes!
Just spent a week in the hospital! What a crazy ordeal, I feel sorry for everyone who has had to go through it! For some reason I never thought that Crohn's could make me so sick. I, just like so many others, thought it was just "tummy troubles". I won't be going into the lovely details of 30hrs in emergency and a whole week of just lying in a bed getting IV steroids and antibiotics because I am just so thankful to be out!
After seeing my GI I am now continuing on Methotrexate, tapering off Prednisone (YUCK!), and taking two antibiotics daily while I wait for REMICADE! I am so excited about that, and I really have hope for remission.

Just one last thing I really want to get out there! I personally have only 20cm or so of inflammation and my GI initially took my Crohn's infection as "less serious", I'm not mad at him for this because I thought the exact same thing. So point being: size does not matter!! Do not let anybody make you feel like your disease is not serious, I've been seriously neglecting my diet because I thought I wasn't going to be that affected. This last hospital visit really opened my eyes to fighting for my health! We all owe it to ourselves!
Love the support here and thanks for listening.

Hi liv,

Thanks for the update! And talking about your disease is not vain. It's really good to talk about it. You deserve to be heard and supported and we're quite good at that

Good luck with the Remicade. We have a treatment subforum dedicated to it under the "Treatment" forum if you want to connect with others on it.

*hugs*

Hey Liv, sorry to hear that you have been in hospital but glad you are now back home again. Will be keeping fingers crossed that the Remi does the trick for you.

AB
xx

Just got back from my third hospital admission in just under a month and a half. First one for micro-abscesses which formed in fistulas in my cecum, second for a large perianal abscess, and now third for yet another large painful abscess on my very lower back. (note:between the second and third visit I developed 5 or 6 seperate abscesses that drained successfully without need for surgery). Surgery went well on both occasions but I have to vent about something that really bothered me.
Because of my several hospitals visits I was swabbed in my nose and rectum for super bugs and as a precaution the surgeon swabbed my abscesses for the same thing. Turns out I'm MRSA positive and have been since at least the first abscess surgery but guess what nobody caught on and told me or anybody else until AFTER my second surgery!! (I'm sure the hospital had fun cleaning down the operating room after that mistake)
I live in Canada so it's not as easy to sue hospitals here but I'm really upset because I clearly was not put on the proper antibiotics and had I been maybe I could have prevented my second surgery and a second spinal tap. I know they don't always give antibiotics for MRSA but I was already on Methotrexate, Cipro, and Flagyl and starting Remicade when I developed the abscess. I'm in a ridiculous amount of pain both from the lesion and the area where they did my spinal just kind of wondering what I should do about it? I contacted patient rep and all of them have said that MRSA is not a big deal and as long as I frequently wash my hands and that they don't contact everyone who has it after they've left the hospital. Being on so many medications I feel like I should have been contacted immediately, or am I just worrying about something more than I need to?
They have now put me Doxycycline Hyclate for the MRSA and hopefully this is the last of it. Have been searching the forum for MRSA support and can use any help or advice! I don't know what I'd do without this forum.

Hi Liv,

I'd start a new thread dedicated to MRSA if I was you. You'll likely get a lot more insight that way.

That's terrible what you've been going through

*hugs*

Found out today I could be MRSA positive and on antibiotics for the rest of my life. Which means I will never be able to get on Remicade which was my last option before surgery for my Crohns as well as almost a guarantee of contracting C Diff at some point in my life time. It's a lot for me to deal with at 21 years of age. Could really use some positive thoughts! Love the support and understanding this forum brings. I wish you all the best and thank you for your continued support.

So flustrating for you. knowing that staph aureus is the number one hospital aquired infection they should have tested you for it earlier. I am also suprised that they didn't prescribe Vanko for the MRSA. MRSA is very hard to get rid of because the bacteria can transfer restance to each other and become reistant to antibotics which is how MRSA(methacylin resistant staph aureus) came about.Good luck and hope things start looking up for you soon!