Indecisive about surgery

[Micah]

Hello All,

I have been diagnosed with Crohn's Disease over 3 years ago. For the past year, I have spent most of my days hospitalized. I began treatment with Asacol. When this no longer helped, I tried Remicade, Cimzia, and Humira. All of these medicines gave me side effects that landed me in the hospital more than it helped. I've been to several doctors and surgeons seeking help. In October, I underwent an illeostomy. This was supposed to rest my rectum anus,and colon. Now, my doctor is telling me I must have my colon, rectum, and anus removed because there is still inflammation. I am a 30 year old male that has always been athletic. I cannot see myself living with a permanent stoma. I am aiming to get a second and third opinion. Honestly, I am tired of doctors and hospitals. It seems like no one is understanding the pain I am living with on a daily basis. I am tired of being in pain. I know that the Mayo Clinic in MN is #1 for GI diseases. I am thinking of traveling to MN to see if I have any alternatives. Does anyone know of any other hospitals I should consider?

Thank you.

 

[UnXmas]

Hi, I can't help you with hospitals as I am in the UK. However, I just wanted to let you know that I have a permanent ileostomy and I love it. Mine was created last October too. There is no reason at all you cannot have an ileostomy and be athletic. An ileostomy in itself does not affect your fitness or health. If an ileostomy can keep your Crohn's in check (and in some, though of course not all, cases it can) you may actually be fitter and healthier with a stoma. It may mean you avoid future complications and further surgeries.

Are there any particular problems you are having with the stoma? If there are, or you'd just like to learn more about how to live with an ileostomy, you might want to post in the stoma forum here: http://www.crohnsforum.com/forumdisplay.php?f=46 Is the pain you are experiencing in relation to the stoma or is it a separate issue?

But I know it is different for everyone, and if you dislike the idea of a permanent stoma, seeking second (and third, etc.) opinions is very reasonable, and I hope you'll find a doctor who can offer you a better alternative.

 

[Micah]

UnXmas,

Thank you for the advice. About a month ago, for two weeks, I did not have the usual solid output from my stoma and the liquid output was minimal. I had a cramping pain in my lower abdomen and pain around the stoma. My doctor and surgeon said all looked fine according to xrays and further tests. I stayed in the hospital for about a week until I finally began to have my regular output and the pain subsided. However, I still have an underlying pain throughout my body, even before I had the stoma. This has been ongoing for three years. It does not go away. I'm wondering if this will go away if I decide to have the proctocolectomy surgery.

I will check out the forum you suggested. Thank you!

Micah

 

[UnXmas]

The symptoms you experienced sound like those I had when I had a partial blockage with my stoma. I felt nauseous, had severe stomach cramps, and the area around my stoma really hurt and continued to feel sore for several days afterwards. My stoma became blocked when I tried introducing fibrous foods back into my diet (my blockage came from trying fruit and vegetables, but whole-grain cereals, nuts and seeds are liable to cause blockages too). Had you been eating much fibre prior to experiencing the pain? If you haven't already tried it, it may be worth eating a very low-fibre, low-residue diet as it will reduce the risk of blockages.

I'm not sure whether X-rays would pick up on a blockage if it was only partial, but when mine blocked the blockage cleared on its own, but the doctor told me to expect the pain to continue for a while, so I guess it's possible that you had a blockage which cleared itself by the time you were X-rayed even though you were still in pain.

I'm just guessing based on my own experiences though, of course.

Pain throughout the whole body does not seem likely to be something which can be fixed with bowel surgery. Have you tried any kind of pain-relief medication?