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Recent Colectomy and Continuing Struggles

This is my first post. For the past few years, I have looked to this forum for advice, but now I need to vent and see if anyone else has dealt with the same issues (I'm sorry the post is so long).

In July of 2012, I was diagnosed with Crohn's by a colonoscopy that showed ulcers throughout my digestive tract (the largest in my duodenum). After a failed trial with 6mp and flagyl, I was switched to Remicade in November of 2012 to combat continuing terminal ileum inflammation. Since starting the biologic, I have been in remission. However, the pain and severe constipation did not disappear along with the ulcers.

Since I was a child, I have struggled with constipation. I would be lucky if I could go once a week, and I thought that was normal until the pain became so bad that I went to the ER in May of 2012 (the trip eventually led to the fateful colonoscopy). After the success with Remicade, I continued to have horrid constipation and pain, despite the numerous laxatives I ingested, and months later I ended up in the hospital with horrid pain and weight loss (30 pounds). During my stay, I endured a myriad of tests only to be told that everything was normal. The only minor note was that my colon manometry (by far the most painful test of my life) showed that my colon didn't move much unless it was stimulated (but my doc said it was normal). i was sent home with a diagnosis of IBS and slow transit constipation and more laxatives.

A couple months later, I met with a IBS/constipation specialist who was shocked over the volume of laxatives I had to take just to go every couple of weeks. He proposed an appendicicostomy (Sorry if it is misspelled; a catheter is placed through the appendix and into the colon to allow for antigrade enemas), and that was completed in September of 2013. He assured me that the enemas would allow the colon to shrink back to a normal size (the idea was that it was too stretched to work properly) and eventually I would lower the amount given until I didn't need them anymore. However, three months later I could not go down on the daily volume, and my doctor was again shocked. With no more ideas, he referred me to the Mayo Clinic.

When all of the tests came back normal again, I almost lost it. My life was in shambles. I couldn't attend school because of the pain and weakness, I was at my wit's end, and everyone was telling me I was fine. Before I had time to lash out, however, the doctor told me that he recommended a right hemicolectomy (some slightly off results on that half) because he had a feeling that something was wrong. Relieved that someone finally believed me, I went home to have the procedure.

When the pathology report came back from my surgery, I could breathe a sigh of relief and know that I was not insane. Although the mucosa layer was fine, the colonic muscles were almost completely made of scar tissue because of damage caused by the crohn's (the surgeon likened my colon to a led pipe). With that part gone, the first few weeks after surgery seemed promising, but a couple months later the constipation and pain came back as strong as ever. My doctor, now eager to help because of the evidence from the surgery, said that a past test had shown that the left side was actually worse (functionally) than the right and that I needed to remove the rest of my colon (Why couldn't we have just taken the whole thing out?!). I was extremely frustrated that he had chosen to wait to give me that information, but I knew I needed the surgery. Last month, I officially became a colon-less individual.

For the first few days after surgery, I was going 3 to 4 times a day. It seemed as though everything was looking up, but the pain and constipation have become horrendous again. I am so frustrated. After returning to my doctor again, he reminded me that the remaining foot of rectum could potentially be causing the issues (The surgeon didn't do a j-pouch because of my Crohn's history). I was not told how much of it would remain after the procedure, but I didn't expect that he would choose to leave that much, especially after multiple recent tests have shown that my rectum is practically useless. Although I would hate to go through another procedure just because my doctor keeps making mistakes, I want my life back. Yes, I feel better than before the first hemicolectomy, but I cannot live like this forever. I just hope something will eventually work.
 

DJW

Forum Monitor
Hi and welcome.

You have been through such a frustrating and difficult time. My heart goes out to you.
I hope you finally get your life back. Sending you my support.
 
Thanks, DJW.

Note about my last post: I in no way wanted to bash my doctors. In the midst of a very frustrating and painful episode, I became angry at the situation. They are great and have helped me through so much. I'm just frustrated...
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi ws2012 and welcome to the forum! :D

You've been through a lot so it's ok to be frustrated about possibly needing another surgery. Many people on the forum have had to go through multiple surgeries. Cutting out portions are so final so it's possible that your doctor was trying to save what they could but it might not have been the best decision. Sometimes you won't really know until you see the outcome of the surgery. I didn't see you bash your doctors at all, more just frustrated by the situation and I would be too. It takes a long time to heal from surgery. It's both physically and mentally taxing so to have to go through multiple ones really affects your life.

I'm sorry you're going through so much but know that you're not alone. We're all here for you anytime. Keep us posted on how you're doing and if you're going to have another surgery. In case you do or are thinking about it, check out the stoma subforum where you can meet and talk to other members who have one or have gone through something similar. http://www.crohnsforum.com/forumdisplay.php?f=46 :ghug:
 
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