Seeking advice on ileostomy reversal after radiation damage

Hello all you good people out there --

Has anyone had to have an ileostomy because of radiation damage? In January 2012, I had a major operation for cancer. The operation was successful and the tumor was removed from my womb. THEN I was advised to have radiotherapy just in case?? --- I had six weeks of daily radiotherapy and started to complain of symptoms from the second week. Uncontrollable diarrhea, abdominal pains, etc., but each time I was told they were just side effects and would subside in time. 9 months later, no different, so they sent me for a colonoscopy - I had to wait for three hours because the sterilization machine had broken down and they were cleaning it manually. I never gave that a thought at the time. However, the colonoscopy had to be abandoned because of the severe pain, but they told me from what they could see, everything looked fine.

Two months later, I collapsed with severe pain and was rushed into the hospital --- Result --- Severe radiation damage and shockingly I was full of gangrene - My bowel had been cooked! An emergency 6-hour op was carried out - Leaving me with a stoma. The surgeon said she had managed to save enough of the rectum for a future reversal. I was pleased about that but was very ill -- I was discharged 3 weeks later but returned with sepsis and had to have a locking drain inserted.

5 months later, I was glad to have a reversal even though the reversal op was cancelled twice (lack of beds) -- I was so happy when it was reversed and discharged home after 5 days, but unfortunately, it leaked and I had sepsis and was again extremely ill. I was admitted to the hospital and remained this time for 3 months, nasogastric tube, being tube-fed, etc., etc. I had sepsis, anastomosis, and they also discovered that at some point my blood vessels had been damaged and I now have a huge thrombus in my superior mesenteric artery (main vessel in the bowel).

I have recently had an oncology appointment and was told by sheer examination that I am cancer-free and he does not need to see me anymore - Good news but how could he tell by just looking? He recommended a reversal would be possible, also a stent could be placed into the blocked blood vessel and some plastic surgery for the scarring. I was upbeat after that appointment.

However, my bowel surgeon said it is not possible but would send me for a second opinion. The consultation with the other surgeon was positive. Firstly, he wants me to have an ileoscopy (colonoscopy) and then he will talk to the vascular team about the thrombus and determine whether another reversal is possible.

My family wants me to remain as I am, but they do not completely understand how upset I am living like this. They say 'Mum you wouldn't know you have one' -- But I KNOW! and I just can't cope with it.

Perhaps if the ileostomy was the result of long-suffering Crohn's Disease, Bowel Cancer, IBS, or Diverticulitis, my thoughts may be different - perhaps then I could come to terms with it?

I understand that I am lucky to be alive -- I know all of that -- I should be grateful!!!

I cannot come to terms with what has happened to me all because I was cooked by radiotherapy -- I now have a thrombus. I just cannot psychologically come to terms with the stoma - I hate it!!!

Please, please can someone give me some words of advice.

Hey Mollymoo,

Not ileostomy but I had to have this wonderful (real heavy sarcasm there) colostomy because of radiation damage. No option of reversal.

I've heard horror stories and stories of ecstatic delight with reversals. There are a few topics about reversals on here. I'm sure other members will give you more helpful answers.

I mainly wanted to let you know, I hate mine too. It's been a year. I'm just now learning to ignore it when it lets me and tolerate it when it won't. Not much else I can do. I've always been a person to find satisfactory compromise in any situation. I'm not letting this be any different, it's just taking a bit more mind control to figure it out. (Plus I avoid mirrors unless it's absolutely necessary.) Until then I still throw temper tantrums, call it every nasty name I can think of and cry when it's absolutely being a royal pain.

Hugs

Z

Hi Molly. I had no luck accessing your full account, but I can tell you that collateral damage from radiation to other organs is not infrequent. My wife had issues with lung damage following radiation for breast cancer. Your situation, however, is far more severe. The only advice I can offer you would be to consider another doctor and another hospital if you haven't done so already. From all the trauma you describe, I suspect some negligence or perhaps incompetence. I might be wrong, but why give these medical professionals a third chance to mess things up? Let's hope another reversal, one that actually works, is in your near future. All the best to you.

PB

Thank you Primeboy and Zywie for your replies. Zywie, I am sorry you have suffered the same. I went into radiotherapy not knowing the full extent of the damage it could cause, apart from diarrhea bouts. I WISH, oh how I wish, I never had it. But thank you, you made me smile and yes, my tongue is out very often too, ha-ha.

And Primboy, yes, you're correct in what you say. I just cannot understand fully why this has all happened to me. I think someone is at fault for sure. Also, since the first emergency op (gangrene), I have had to undergo fortnightly 8-hour Magnesium infusions as my body cannot store it anymore (still ongoing). That is why I am desperate, if possible, for a second reversal.

I was told at my last and 'final' oncology consultation for womb cancer, and just by an examination, that I am now free of cancer and he does not need to see me anymore. He said, "I was unlucky after the first reversal," but going to recommend to other consultants that they should attempt another reversal, a stent for the thrombus, and plastic surgery for the scarring, and could see no reason why not. And these were his words, "because we damaged you."

Of course, other consultants are not in agreement with him. Too dangerous, they say. But at least they are looking into attempting another reversal.

My appointment has arrived for a colonoscopy on 1st September to see if it will be possible. It is another surgeon this time. I am extremely worried though. Do I risk it? Will it be successful? I just do not know what to do. Thank you xx

Hey Mollymoo - Thank you but no need to be sorry for me. And you are welcome for the smiles. I didn't know about all the things that could happen because of the remedies either. But I'm learning. They seem to decide to tell you those things after the fact. I didn't know radiation could cause nerve damage to outlying areas like it can. I knew there'd be problems with the proctitis, but they said that nerves regenerate so I wasn't really concerned with that. They didn't say it may take them 50 years to regenerate. They didn't say I could have nerve damage in my legs or other places. They didn't say a lot of things. I'd rather put up with the proctitis, though, instead of this. But not much I can do about it now and I am not going to let it run my life if I can help it.

As PB said, get different doctors/hospitals. My local hospital insisted I had hemorrhoids for almost 2 years. Had to go to a different county to find out it was cancer. They can misdiagnose either way and it sounds like you had some bad surgeons.

Peace

Z

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Mollymoo, so sorry to hear of your misfortune. I have had my colostomy since Feb 2013 due to cancer, and it is a permanent situation. No reversal will be done. In the beginning, I could also not look at myself in the mirror. I could not believe that something like this could happen. But as days progressed, I realized that God had worked a wondrous way to keep people like us alive and with our families. Yes, I do get times where I become tearful, but then I remember without the stoma, I would be dead. I now take each day as it comes and thank God for keeping me here with my loved ones. They are all so supportive, and there are times when I actually forget I have a "bag". I did not change my clothing; I still wear my skinny jeans. I am inclined now to look for a little longer tops. When the bag inflates, I go off and empty it. There are times that I actually joke about my "bumless" situation. So, I would like to say chin up and go with the flow. Good luck.

Sorry for not being on here for quite some time - been poorly. Thank you for your kind words and yes, you are right in saying we are lucky to be alive. However, I am chasing the dream and still so wanting a successful reversal. I am searching for a real expert consultant/surgeon out of Cornwall, more than likely London maybe, but I will travel anywhere for a second opinion in this field because my case is so complex. I would be very grateful for any suggestions. Best wishes to you all x