I feel like I hate the stoma

Nice Cup, am right here with you. Too bad the powder did not help. Best wishes finding the right system and products for your skin. Skin stuff with ostomy = serious even if the stoma is working. Like you said dropping the bag in public not so good. Sorry that happened to you. As long as you are able to eat solids, this is just my offering, I think you should eat some solids daily. The intestine is a muscle and if you don't use it it may lose it's tone. This is not scientific by any means, but it kind of makes sense and you get the joy of food. But I totally understand we all have the stuff that bothers us and it is all real. Good luck.

I have been on liquids for so long, that I don't even know if my intestines could handle a solid even if the waste from a solid could come out! AND 2 doctors at a major medical center said that with all my scar tissue issues, a redo could land me right on TPN not even able to take in or put out liquids. Course the other side of the coin is this stoma could stenose so bad that it would become emergent and I would HAVE to have surgery by whomever was around where I live in rural Mass. THEN we have the "wait time" that some docs have said should be up to a year. I have a consult with a combination adhesion specialist AND colorectal surgeon of complex redo's all rolled into one person. He is at a nearer medical center not as big, but IF they all say that I would end up worse off with a redo relocation, I may just ask how long one can survive on liquids and line up a plan for if the stoma stenoses totally and goes emergent. I have no interest in ending up worse.

As it is I have regained 20 lbs on Boost VHC, can drive, can walk a mile in my favorite park, I am able to socialize as in sit and chat, and run the house. I can care for my cat. I cannot ballroom dance as I used to and I can't travel. I have some pain but so far not over the edge. I am not at all confident that this won't totally close and go emergent so the worry factor is big. BUT I can do all this, have regained muscle mass. My hair is practically non-existent and eyelashes totally gone. nails brittle, teeth pitting and skin easily tears. Tear glands in my eyes are not working so I have to use these burny drops to get them to make their own tears in time. BUT somehow blood work is good. body says not so nourished! One thing I also have to decide is IF I am going to take the gamble and have the redo/relocation I have to do it before my blood labs fall more IF they are going to, March labs strong and April not as good. Some docs use adhesion barriers and sharp dissection and avoid electrocautery, others use the electrocautery known to promote adhesions and don't use adhesion barriers. No barrier is guaranteed but hey I figure in my case they sure can't hurt!

I don't want to make any more wrong choices. So I am so with you. BUT if you can eat, have something good for me As long as liquid is passing, I am throwing some amazing things in that vitamix and turning them to liquid. I liquidized a cooked chicken the other day and strained it and diluted it, salted it and drank it. Soooo good to taste something other than sugary crud. So who knows.

Somedude, NO you don't want to end up like me or ironmum. I hope she got help and it worked. Jeesh! Anyway, you know what ya got now and you don't know what you're gonna get. I applaud your surgeon for not trying to sway you. That is a good thing. maybe these surgeons at the big med center that are not optimistic about a redo/relocation for me are doing me a favor in stating that. I think they may just be being honest. can't fault them for that.

I think it can last months...maybe even six?

Nice Cup,

LOVE the description of the elemental stuff......very very descriptive Oh mY!

Where is your doc? I am soooooooo loaded with scar tissue, I have no clue if God could make me a working stoma. If you want to email me your doc's contact info just click on my name. I am open. I need the brutal honesty. I also don't want to get in more trouble as 3 docs have now told me that more surgery may cause. These are all top notch docs too. I think they are telling me the truth. It is the scar tissue issue. But on other hand can't wait for stoma to close up and go emergent. Been there done that. Thx.

I hope you get the help you are seeking. Glad to know the guts can still just mush along, yeah starting slowly to reintro food would def be the way to go. I dream of an open stoma with no kinks. I would be thrilled to eat normal yogurt! I had ice cream again and sometimes it bunges up in back of this stoma and sometimes it does not. Tonight it is "bunging". I don't even worry any more, it's like well if it closes it closes and the ER sees me again.

Is eating something you enjoy doing? as in you can do it. I found eating one of the most pleasurable things in life both with original guts and even with the working stoma. That might be a fun thing to just have a nice meal. Today I met up with some folks with 2 baby English bulldog puppies who just ran all over me I loved it. Animals are also great for a feel good thing if you like animals. I may even go volunteer at the animal shelter while I swill my boost. They are a breath of fresh air.

Do you like outdoor stuff? It is real nice now in Mass where I live. Sun feels good. Just some ideas. Am with ya, tho our issues are different. I would LOVE a working stoma. So send me your docs name. The others have in essence said further surgery will be very likely to make you worse. nowhere in any of their notes does it mention possible/probable success. Docs don't like to talk of scar tissue. i say lets get the issue right out there and talk about it and if barriers and certain methods of lysis sharp dissection vs electrocautery or whatever, lets discuss it. Just my thoughts. Your doc sounds right on. RJ
Have a good night.

@killcolitis - That sounds pretty bad, what happened to your brother. I hope he is better now. To answer your question, though, probably not. Trainee CBT counsellor is probably the best I can expect on the NHS <_<. More seriously, my GI is referring me to my hospital's IBD psychologist. I don't know a thing about him; can't find anything on the hospital's website. (As a sidenote, the gastroenterology department has vanished into the ether: I am paranoid it is going to be shut down! -_-) Anyway, that's the closest to a medical trauma expert I'll likely get. To be fair, I am not really convinced I am a suitable candidate: despite my interminable whinging nothing went wrong with the surgery itself.

@esoR - They smelled just like vomit too >_>.

I feel a tad guilty now for what I said about my surgeon: I live in the UK :-/ Also, while I know she's done lots of Crohn's surgeries, I have no idea if she is enough of an expert to deal with an extremely complex stoma revision like yours. I don't even know which hospital in the UK would be best for you, tbh. My first thought was St. Mark's in Harrow, but I dunno if their range is broad enough to cover stoma problems, although it should be: they specialise in intestinal and colorectal disorders. I was actually a patient there for a few years. Tbh, from the treatment I got, I would never ever have guessed they specialised in anything remotely resembling gastrointestinal: the uncharitable part wants to say they couldn't prescribe Tums for a bout of indigestion. The more charitable part says that they did correctly diagnose me (at a time when my disease was very mild) and that they are probably very good at complex surgical techniques, or whatever, and cannot help their complete and utter lack of people skills.

Anyway! I went off on a verbal ramble. Getting back to the subject, I'm sorry if I gave you false hope. I did not mean to do that.

I used to love eating: used to be one of my favourite things ever. In the last few years, not so much: Crohn's eventually succeeded in destroying most of my pleasure in eating. And, so far, I have not really gained it back. My appetite does seem to be slowly returning, so maybe in time I will. Trouble is, I am rather scared of blockages with the stoma (suffered from blockages with a stricture pre-surgery and the stoma blockages sound just as grim and painful). I shouldn't really complain about that, though, as it's nothing compared to what you are going through.

Yep, I like the outdoors. And animals.

@uc_free - I was really comparing having surgery to Somedude's situation. The guy has to wear a diaper on the journey to work, which I'm not saying is a nice thing to do. It isn't. But he's obviously not very ill with his UC, no offense to him. I can compare partly from past experience, because for the first few years after diagnosis, my Crohn's was mild. The main symptom was diarrhoea, but otherwise I still felt basically well in myself. The difference when I finally fell ill was like night and day: I felt really, really bad.

I'd choose the early years of my Crohn's over an ileostomy in a heartbeat. The later years would require a great deal more thought, but I know I would not choose to relive the last two years. By the way it is literally not possible to make a decision without involving your emotions, so that is a quite silly comment to make, tbh. Of course I thought about surgery: I weighed the pros and cons for a year. Hardly rushed into it on a whim.

NCOT,

I never said emotion didn't come into play "at all." What I said is that I didn't make my decicion with emotion as the basis. Meaning, the "idea" of having a bag and how it would make me "feel" was not the driving force in my decision. I did not have a year to weigh pros and cons, and had to decide in a couple of days. I went with a very rational decision, imo. A lot people have issues with this surgery that are often purely emotional: not wanting to face the bag, parting with an organ, etc. As far as health benefits, there are no real medical benefits to having a colon. A colon is primarily responsible for absorbing water. So far, I have not had any health issues since having it removed, and my bloodwork has been beautiful. Again, I will never understand people's thinking when they are so opposed to this surgery. Some are opposed to extremes where they will have other people's feces implanted into their butts, put so many toxins in their body, wear diapers, etc., etc., etc. We've even heard of people who said they would rather die than have a bag??? There is absolutely no reasoning with people like that because they are avoiding what is best based on "ideas" and not "facts."

Now, again, regarding your particular situation, there are so many of us here who have had the same physical issues or worse that you are facing. We have told you that your reactions and feelings seem to go beyond what we have to offer here. Further, when anyone has tried to help without telling you what you want to hear - you pounce. At this point, we are enabling your behavior if we say things just because you want to hear them. There is really nothing new left to say. Get help.

PS: You get "help". To be a nicer person. And please, never ever again use the prissy and cowardly "we" in my presence. I absolutely loathe that. Such a cowardly way of hiding amongst the safety of the group.

Post Edited (NiceCupOfTea) : 5/19/2013 9:27:30 AM (GMT-6)

So freaking, utterly judgemental, you people are. Ooh, I don't like the stoma! So sue me. I "need help". No, I just need to FEEL physically well again, to feel that life is actually worth living.

If your lives are so utterly perfect and you all cope so utterly brilliantly, great, bully for you, nice one, fantastic, etc. But my life isn't perfect and I don't cope with things well. I never have done, long history, not going into it now. But if you can't tolerate that, if it upsets your perfect little brain, then just leave me along. LEAVE ME ALONE.

I think you're a suitable candidate - you've had enough medical trauma for a lifetime so I hope he can help you and if not he might be the one to ask about a specialist psych referral if necessary. Yeah what my brother went through was a nightmare but he's now well. It took many years though and I have to say one of the biggest determining factors in his recovery was his attitude and willingness to fight to move his toes and fingers, stand, walk, go back to work, do a graduate degree, date etc. Not to say it was easy and he was, as I mentioned, very depressed at times. Now he's one of the youngest directors at a major bank, is married, travels and has a great life. He does not have feeling in the left side of his body and sometimes suffers with severe back pain which he treats with physio and exercise so he's not "perfect". My point is that this was a long process and he built what he called his "medical dream team" through a lot of trial and error. He still depends on them when needed 12 years later. So, keep looking and I hope you're able to find a way out of the black hole you're in.

Bottom line is you are entitled to the way you feel. I get it totally. I didn't like the time I had with my ileostomy at all. I would like to think that doesn't make me a bad person! Kudos to the folks who embrace theirs....I think that's wonderful. Since this is a support forum you are naturally going to get oodles of different takes on the subject. I honestly don't think anyone is meaning to offend anyone else. And it's such a personal and emotional thing to speak of.

I wish Healingwell had a 'Like" and "unlike" button because I would certainly "like" summerstorm and Pluot's posts and "unlike" Nice cup of Teas posts. I have been a lurker on Healingwell for several years and never officially joined because I watched Nice Cup Of Tea tear people up for voicing their beliefs on different topics so I was intimidated, to say the least. In the past 6 months, after fighting this terrible disease for many years with a great deal of suffering, I am now facing a colectomy so I decided to join to get some advice and possibly make myself more comfortable with the idea. Now I am finding Nice Cups posts are scaring me away from Healingwell and the idea of surgery. I am trying to look past her but Nice Cup, your negativity is impacting me in a bad way. I just wanted you to know that.

That is all I have to say.

Nice cup,

still here with ya. Thx for the info on crohns. Auugh! This thread went like that one on me. I still got the stenosed stoma and need to decide now whether to go for the revision relocation May 29th with chest port or other venous access put in May 28th. Both docs I saw at this major med center said this surgery could make me worse. I am getting so weak from all this not being able to eat thing for 7 months and the Boost VHC's are not even cutting it any more. Soon I will be too weak for surgery. That is one reason they moved the date up.

Have one consult with an adhesion specialist as that is MY body's disease "pelvic adhesive disease". Some of us get it some of us don"t. I was the unlucky. I may die of this. Have a nice meal for me and as long as your stoma is working, enjoy, one day at a time. I totally understand the fear thing. ANd thanks for letting me know that the crohns can go into the small bowel. no wonder you are scared. BUT one day at a time is all I am up to at this point. It is a cliche but there is some merit to it.

We all have our issues or we wouldn't be on here. I pray for you. Please pray for me that we both find the peace and comfort we each deserve. Bless you. Rosemary

Rose, I'll pray in a non-religious way for you. I cannot find any belief in God, I'm afraid, although sometimes I think something "out there" is torturing me every single day by keeping me alive.

Literally would not care if I died at this point. In fact for weeks now I have been wishing I had died on the operating table or earlier. I lied when I said I wasn't suicidal. No intention of acting on it, but I do wish I was dead.

So many lies told about this operation, it's unreal.

Nicecup: I am hereby clicking on ignore for you. You want to dump here and bite the heads off anyone who challenges your insistence on complete existential misery. The message to you is: this is extremely diffficult for others to take, and they do not want to have to read it. That you do not expect the negative reactions you get - nor do you reflect on them when you get them - is rather surprising, yet you answer them with your cavalier psycho baloney. It seems you are not here for support, but to draw others into your abyss of meaningless conflict. Why don't you go do your thing on the depression forum?

sweetbabyray - do not lose courage. There's lots of really positive successful outcomes on this forum and after colectomies in general. You do need to sometimes be selective about what you absorb.