Regretting Ostomy: Seeking Support and Advice

Jpeters, I know that you are down right now and pissed off, and I would be too, but I have to send out congrats on the engineering design and the chance of an aerospace company purchasing it. What an accomplishment!!! This is so huge. Wow!!! I don't know anyone with those engineering design skills. Congratulations.

I finished my MBA while battling UC and bleeding to death. It was a bittersweet journey. I was so excited to walk with my class but was in the hospital graduation weekend battling for my life. I even missed my 30th (I hate to say how many years) high school class reunion because of the disease. In the hospital that weekend too - IVs and two blood transfusions. I eventually did walk, one year later, and was terrified something would happen. I made it and captured the memory.

I know that you and your doctor will figure out why this awful pain is happening, something will present, and the light will go on for your doctor.... I just hope that you gain some relief today so that you may enjoy celebrating with your partners. And, like you, I also wonder if the people in the ads are really ostomates. Take care - LH

Those are my thoughts exactly, jpeters. Some day in the future, people will look back and exclaim "OMG, can you believe what they used to do!"

Thank you for your comment, Mike. Hope you're doing well.

Nice job on your MBA, LadyHope! Way to not let UC run your life. I hope you get to go to your 40th reunion, healthy and pain-free. And yes, you've got to wonder if the people in the ads have ostomies. You can totally see the people in the scene asking the director, "So what's an 'ostomied'?"!

Thank you for your comment, three. That's a good point.

Your situation has got to have a solution -- Have you talked with the bigger hospitals -- someone may have info as well as special programs that cover the tests/surgery.

You should not be suffering like this. After being so blessed with an awesome surgical team for my rare and extreme surgery -- I am back to "normal" now - it was not easy but it was worthwhile and a true lifesaver. I have an ileostomy that feels as normal as apple pie.

You have to find people that intervene -- even a pain clinic may be able to get you properly referred...

Hang on and let us all know; keep us up to date and we can find out if there are places/contacts to help you...

Hi Ewesful,

It's great that your ileo is working well and that you enjoy better quality of life. What was your rare/extreme surgery?

I'll look for programs, but there don't seem to be any tests/options left. I don't use pain meds because I need to be very lucid for work, but thank you for the suggestion. Daily 5AM/3PM irrigations, 100 liquid diet, 500mg Colace, 200mg Chlorofresh, and a 3-mile walk keep the ostomy functional. It's not comfortable or fun, but it's manageable.

When you say your ostomy is 'normal as apple pie', do you mean that you're physically comfortable? Can you feel your insides all the time? Can you eat food and still function afterwards? Do you smell normal?

Hi Jpeters, I just saw this previous post and wanted to see how you are doing? Any progress regarding pain reduction with your ostomy and the odor problem? I hope so. Have you had an opportunity to contact Dr. Phillips in Philadelphia? He may have some information to share with you about these problems. Maybe you could Skype or have a phone meeting with him? Just thinking out loud.

How is your work project coming along? You mentioned previously that you had many important ones in the works. Only three weeks or so to the conference. I am getting ready for it but have a small medical bump in the road. I hope that it resolves by September. Doctor's visits are frustrating me... if it is not one thing, it is another. Prior to UC, I was pretty healthy. I am determined to get those days back... so I keep moving forward. If you are not moving forward, you are falling behind... or in my business, if you are not acquiring new business, you are losing business. Take care Jpeters. LH

Hi LH, sorry for missing your reply. No change in odor, pain, etc. But it's been 2 years, so that isn't surprising. I haven't talked with Dr. Phillips but I did go to Mayo Clinic several weeks ago. They said there's zero chance of a reconnect. They removed far too much, and reconnect would likely mean incontinence and 20-30 BMs/day. So the colon is permanent. No torsion or kinks in the bowel, it just doesn't work right. Probably for neurological reasons.

What's your medical issue? Is it your stoma or are you having other problems with UC? A lot of people with UC talk about having flare-ups months or even years after getting the ostomy. You might find it helpful to talk with other people who have your specific issues. There's a good forum here:

http://www.healingwell.com/community/?f=38

Hope you get feeling better soon. Let us know how you're doing. Best, JP.

JP,

I'm just now seeing this thread. It's terrible what you must endure. And you certainly don't need to hear a bunch of folks telling you how well their ostomy made them feel, but the truth is that it's normal to feel much better post-op. If I were you, I would get a second opinion from a well-known team, perhaps from one of the larger hospitals affiliated with major universities. It just doesn't seem like you should still be suffering. Docs should be able to determine the difference in your condition. The conference is a great recommendation, although I suppose travel must be near impossible. I sincerely hope you find comfort soon. Take care, JP.

Hi Jpeters, I am so sorry that the Mayo Clinic was unable to help you. Did they comment on your ongoing pain and why you feel the way that you do all of the time? Were they able to offer treatment to address the pain that you experience daily? I hope so. You shouldn't be feeling so badly. I just responded to you regarding a possible reason for the odor problem. I won't repeat myself in this post. I am sorry that they can't reconnect. What about getting another opinion just to be certain. Second and third opinions are good.

I have been having ongoing inflammation issues since my surgery for UC. To make a long story even longer...LOL...I have had every test imaginable to diagnose my inflammation and find out why it is occurring. Everything is "charted idiopathic"...the docs don't know why. Some say it is allergies, others menopause, lung issues, joint issues and so on. One big guess. I wish I knew what is causing it but, in a way I am glad that there is no diagnosis. I believe that the major surgery and illness caused my body to react this way and I am still recovering to some degree. I am frustrated and tired. I even augmented my diet to include more foods that decrease inflammation such as sweet potatoes and salmon. I am still at square one. In Sept, I am meeting with a new allergist. Let's see what happens.......cross your fingers. Take care. LH

Thanks Mark. Neither Banner nor Mayo hospitals were any help, but I'll keep looking. It's just the nature of losing a vital organ. If it doesn't go well, what do you do? Can't put your old one back. If you don't have kinks or torsion in the bowel, surgery won't help. Adhesions may be part of the problem, but surgery usually makes them worse long-term. Meds haven't helped. Juicing/walking/Colace/Chlorofresh/bi-daily irrigation helps, but only so much. So does working 7 days/week, living away from other people, and cleaning/airing your home daily. Hope these tips will be useful to others having the same issues.

Hi LH, I can't take pain meds because I need to be extremely lucid for work. With engineering, something 99% right is completely wrong, you know? Honestly, I'm so used to pain/isolation that I don't mind anymore.

I am really sorry to hear about your ongoing inflammation. It is great that you're paying attention to diet. Nothing in your environment interacts with the body as intimately as food. Every meal changes your microbiome, turns genes on/off, helps to heal or hurt your arteries, etc. You are literally what you eat at the most basic biochemical level. I'm curious, have you ever tried following an elimination diet?

Dr. John McDougall uses a very successful plant-based one to treat autoimmune disease.

https://www.drmcdougall.com/health/education/health-science/common-health-problems/allergic-reactions-to-food/

I know you're an omnivore, but you might try it short-term and see if you feel better. You'll know in a week if it's helping you. And kudos on eating sweet potatoes. They're great for you and a staple on this diet.

Also, do you get enough sunlight and sleep? You may wake several times to drain your pouch, but can you still get a total of 8 hours deep, restful sleep in a dark room every night? And good sunlight in the day? Have you tested your vitamin-D levels?

Just some things to consider. It may not fix your issues, but a lot of people who aren't seriously ill still suffer from chronic fatigue due to diet/lifestyle. Though it does sound like you take better care of yourself than many.

Anyway, take care, and hope you get feeling better soon. Certainly let us know how you're doing, and if we can help in any way.

Thank you very much Jpeters for the link and the suggestions. It is certainly worth giving a try. This entire inflammation issue is really bothersome. One, because I never had an issue or allergy in my life and two, every doctor I visit to help me does not. In some cases, what they recommend makes the situation worse. Just to vent, I had a scheduled luncheon with one of my clients (the entire office team). I had everything organized, the meal arrived on time (thank goodness), materials distributed and lots of giveaways. It appeared to start off being a good market/sales call presentation. As everyone arrived, I began to stuff up...and badly. I couldn't eat and was embarrassed. Someone asked me...are you sick? I said no, just allergies...ha ha ha. Now, the conversation turned to allergies and treatments which was a positive turn of events for me....pulled a rabbit out of the hat. It appears everyone has an allergy but is my situation an allergy I ask myself every day. Who knows...??? Thank you again for letting me vent. I am heading to the UOAA conference next week and looking forward to it. Side note/observation...Ironically, I traveled out of the area in early May for several days and guess what....no allergies and I felt better. I wonder....could it be where I live and the environment. I just don't know. Thank you again Jpeters and I hope you have a nice weekend. Take care. LH

Hi, JP. I've been reading some promising reviews of Devrom tablets for odor prevention. Have you tried them yet?

Hope all is well. Take care.

JPeters... I know this thread is ancient. I just wanted to post here to thank you so much for your honesty. I live with ulcerative colitis and for years doctors and ostomates have tried to pressure me into getting a total colectomy in order to "cure" my disease. I know it goes well for some people but for others it can be a total nightmare. I have read some great stories and some horror stories; but more importantly I have read stories that show all of the nitty gritty details doctors and nurses never talk about, maybe because they themselves don't know.

I just want you to know your story is not in vain. Last time I was in the hospital the doctors tried to bully me into getting a colectomy because they didn't want me lingering in their ward anymore. Stories like yours are why I got a lawyer to create a legal document forbidding the doctors from ever giving me an ostomy against my will, no matter how dire my situation is. People have told me I am stupid for wanting to die instead of getting an ostomy but it's not their choice, it's mine. I would rather be dead.

Again, thank you for your honesty. I'm tired of seeing the brochures of happy people doing all kinds of activities with their ostomies (whether or not they really have one, who knows). I am not someone who could ever live with one.

I hope life is going better for you in every which way.

Hello Jordan1.

Better late than never!

Thank you for your frank and honest response to this post. Whilst I do not share your views on having the operation, I wholeheartedly agree with you that these decisions should be left to the person concerned, who should not be bullied into making any decisions that they are not happy with, even if that decision may lead to their death.

All my life, I have a been a firm believer in Self-Organised Living And Reflecting (SOLAR), which means I am totally against some people trying to impose their views on others. I am presently in the throws of writing a chapter entitled-- 'SOD- the last chapter', where SOD is an acronym for Self-Organised Death.  For the life of me! I cannot think why anyone should want to tell someone else that they should live in pain or discomfort, rather than choosing to die in a manner that suits them. It is simply another form of 'bullying' which I have written about extensively in the past.  I hope that whatever life you have left meets with your best expectations.

Best wishes

Bill