My Bizarre Crohns story

[stevo70]

:wink:Hello everyone,

my story is a somewhat "bizarre tale" given my recent turn of events. As a result this is not the only "disease type" forum I happen to be a member of. You see, I was recently diagnosed with Testicular Cancer in addition to Crohns...

My story started in 2002 as a 31 year old when I experienced severe stomach pains one morning. They did not subside and I ended up at the hospital having my appendix out. After 3 days I was discharged, the last thing the surgeon said to me was "There was nothing wrong with your appendix, I expect I will see you back here soon." True enough to his words I was back in hospital a week later with the same severe stomach pain, this time for a bowel resection. The surgeon later explained to me that my bowels had "significant scarring for reason not known." I recovered and went on to participate, unhampered, in my chosen sports (AFL football and basketball) for years following.

In January 2007, as part of a work initiative, my colleagues and I made our way to the blood bank in Melbourne to give blood. When it was my turn the nurse pricked my finger to test my blood levels. She informed me I was very anaemic and they would not take my blood. A doctor at the centre informed me I should see my G.P ASAP. From my G.P I was referred to a Gastroenterologist who, after a series of tests, confirmed Crohns Disease after a Capsule Endoscopy found ulcers in the Terminal Ileum. This explained my extreme fatigue I was experiencing for about 3 months. I thought I was getting old. I was placed on Prednisone and Salofalk. These drugs worked well,(Pred was crap and I stopped taking it earlier than I was meant as it was driving me insane "literally"). I was in remission as of January 2008. I continued to take Salofalk and Iron Tablets Daily.

In June 2010, I noticed I was again fatigued, pale and the blood tests showed my iron was down to <1 and Haemoglobin 88. I reattended the Gastro doctor and he changed my meds to Infliximab infusions (every 8 weeks) and Methotrexate every Sunday. I do not have any idea if they are working as in 7 months I have not been reviewed and have required 4 iron infusions in this time. I also take folate and iron daily.

My bizarre twist and reason for so much concern now is that in November 2010 I was diagnosed with Testicular Cancer. I have had surgery to remove the testi and Chemotherapy to kill any microscopic cells. I find out soon if I am in remission or if I need more chemo to "rid myself of this beast". The odds are very much in my favor.

Some of you may think this strange but I now seem to be more stressed about the Crohns than I do the Cancer. (I feel like I have whipped Cancer). I am taking infliximab and methotrexate which both have possible side effects of "Cancer" and I am still not being reviewed to see if this medication is still appropriate. I honestly do not wish to continue on these drugs and would be very interested in alternate "safer" medicines or therapies. I do understand that if I have ulcers (which I assume I still do) I do require meds to get me back to remission. However I have no idea where my treatment is going? Future changes to medication? Anything...

I am completely open to suggestions from you guys that have probably been through much more than me with regard to Crohns.

Anyway, sorry to ramble on with such a long story, it can be hard to find people who listen to my concerns.

For your info I am pretty lucky with Crohns as my symptoms are "only" anaemia and fatigue as a result of iron deficiency. I maintain a perfectly normal lifestyle and are not hampered in the typical ways people are affected by Crohns.

I look forward to any suggestions or comments you wish to make regarding my story.

Kind regards and Merry Xmas,

Stevo:

2002 - Bowel Resection
2007 - Dx Crohns (Prednisone and Salofalk)
2008 - Remission (Salofalk and iron daily)
April 2010 - Crohns active, meds changed to Infliximab (Remicade) and Methotrexate plus Folate and Iron Daily. Iron infusions every 6 weeks.
Nov 2010 - Testicular Cancer Dx Surgery - Radical Inguinal Orcidectomy
Dec 2010 - Chemotherapy for TC finished 9th of Dec. (Pending further tests)
Current - Ongoing concerns re: CD treatment

 

[MaryM]

Goodness, but you have been through the mill... and are impressively brave about it all.

I am concerned that your GI is not reviewing your progress on the meds you have been taking. You need to know how they are working and are entitled to that information about your own body. Is the same doc Rxing your iron infusions, etc.?

It sounds as if you are not disabled by pain as some are so perhaps that is why you are not receiving his/her attention, your GI I mean. the squeaky wheel gets the oil and all that.

Other will have better insights than I have to offer but I do wish you well.

Bravo for your triumph over testicular cancer. Well done!

Mary

 

[georgiegirl]

Stevo, as a fellow Crohnie and Aussie, I am concerned that you are not getting regular reviews from your GI. The last time your GI saw you, what did they say? My Gi wants reviews every 6-8 weeks, depending on what meds I'm on. I'm not sure about Salofalk (I haven't been on it), but they do generally review pretty regularly, to make sure there are no side effects.

While you may have a mild form of crohn's, you do still have crohn's, and need monitoring. Sadly, this is a cross we all have to bear.

Congrats on beating cancer though - that must have taken a bit of energy from your stores! You sound like a very positive person, and trust me, you will need that to live with this crap!

 

[stevo70]

Hi again and thanx to georgiegirl and marym for the replies. I am very interested to hear you are reviewed every 6-8 weeks. I have not been reviewed since 2007, even though I have changed medications. The meds were changed because of the flare-up, not because a series of tests determined it need happen.

In answer to your questions - Yes, my G.I for Crohns organises my iron infusions so he is completely aware of my situation. His office is also directly opposite the oncology dept that admistered my chemo, but this still hasn't initiated a review??? The last thing he said to me when he saw me getting the iron infusions was ... (Come to think of it he didn't speak to me..) How strange. LOL...

I have now made an appointment with a well respected G.I whom I have been referred to. I will visit with him in Jan, 2011.

Thanx again for the comments,

Stevo

 

[georgiegirl]

Good for you for making that appt. Sometimes we need to be pro-active if the docs aren't.

Funnily, I saw my GI when I was grocery shopping this morning - didn't even know he lived in my suburb. He came over and chatted to me and asked how I was going with my pred taper, and told me to call straight away if I have any problems. Introduced me to his kids and we chatted for 10 mins - guess I lucked out when I got referred to him, I'm very impressed!

 

[ErikaHouston]

Welcome

Welcome to the forum. I am also fairly new here.

I am in a similar situation. I actually had a previous diagnosis of Melanoma in 2008 and was diagnosed with Crohn's in 2010. I also do not have the typical symptoms. I am not in pain at all and have normal bowel movements, etc. My only symptoms are 3 hemorrhages that have landed me in the ER and hospitalalized/transfused. My melanoma was removed completely with surgery in 2008.

My GI Dr. and my Melanoma Dr's have very differing opinions on my current treatment. My Melanoma Dr's do not want me on any of the TNF blockers (Remicade, Cimizia, Humira). My GI really wants to put me on a TNF Blocker (Cimzia). We have compromised and I am now moving forward with going on Imuran. Ironically, when I consulted with a GI specialist at MD Anderson Cancer Center - where I am followed for my Melanoma ( it is #1 cancer center in USA) he mentioned that he was currently treating a patient with Crohn's and Testicular Cancer with Imuran successfully. He was avoiding the TNF blockers completely. He strongly recommended Imuran, (it takes 3-6 months to start working, so it's great for a patient that's not in excruciating pain, etc. ).

I ultimately decided with my main GI to go with the Imuran just this week after bad results from a Capsule Endoscopy (lots of ulcers/inflamation in TI).

Good luck. I think it is a very difficult decision to choose which disease to make priority. For me, it is very unlikely the Crohn's will kill me, but if the Melanoma comes back, survival rates are next to none. At this point, I'm putting the Melanoma first and hoping the Crohn's stays at bay. I realize this may change in the future. Hoping the Imuran allows the ulcers to heal.