Intestinal obstruction, living on liquids surgeons won't touch me. (have ostomy)

[Snoflayk505]

Hi there. I am 28 and have suffered from Crohn's/RA/Endometrios/Hypothyroidism for like 11 years. For some reason I have the most rare and chronic problems any Doc has ever seen. It is very frustrating for a patient being that 1% that everything that can go wrong, does.
I am so exhausted from putting on a show to my family and everyone around me that I am ok, it's getting hard to fake it. I just don't want to be a burden on everyone becaues I am so sick, so, I put on a front to everyone. It's hard and takes practice but I pull it off well.

I live in constant pain and can no longer eat real food. After my last surgery which was to remove the rest of my colon and get an Illeostomy, my intestines decided they would all glue themselves together in a ball underneath my stoma. Not only that, I also have multiple mild obstructions and adrhesions throughout what they can see of my small intestines making it impossible for anything but liquid to get through. The surgeons won't touch me unless there is no other choice because they would probably have to remove too much and cause Short Bowel Syndrome. For those who don't know, short bowel syndrome requires TPN for nutrition but comes with a high fatality rate withing 5 years due to infection and other stuff.... what a pickle. I basically have to live on only liquids until my intestines finally block completely and then start counting down the clock to the end....

I just want to cry because this is all so hard. I'm a new mommy with a 2 year old, a 10 year old(i'm step momma) and a husband... I don't want them to see me suffer so much and say "yup she's sick again". Geez, it's so hard. I just feel so alone. I am not depressed...I don't think.... wow, I don't even know if I am because I have put up a front so long that I am prefect, strong, and happy..... it's so hard to be strong. Don't get me wrong though, I am the happiest I have ever been in my entire life..... but I am literally tortured every day inside. Pain, nausea, fatigue, hunger you name it. I have fought very hard for this life and I will not go without my all, my everything that I have to fight with.

Anyways, i don't even know if anyone is going to read this. I just need to know that i'm not the only one. It is hard, just so hard but I will never stop fighting, ever......but I am starting to feel like I am losing....

I am not looking for sympathy at all, I just want to know that... lol well this sounds kinda morbid but, I want to find others that struggle every single day like I do. Does anyone else hide it because you don't want to burden your family or have everyone feel sorry for you? It sounds wrong but is it really? Why would I bother them with all this pain.... Anyways, I just need to talk to others that are not my family about this stuff. It's just too much heartache for them.

P.S. I'm just really down today, i'm not normally this... negative I guess? lol I just really want a cheeseburger! haha Stupid commercials. I miss food

 

[ameslouise]

Hi Snoflayke - No, you are not alone! There are many users on this forum and we have varying degrees of disease. There are others out there that are on TPN and liquid or elemental diet, some that have had resections and huge portions of their bowels removed, those that live in pain every day and still without a diagnosis.

Where are you located? Are you able to get a second opinion or go to a highly specialized GI clinic, like the Mayo Clinic?

I'm no psychiatrist but it can't be good to put up a facade 24/7. Your husband and family have to know how sick you are so they can help take care of you and help you live the way you need to live to take care of your disease. It must be causing so much stress for you to fake it all the time, and that emotional stress is NOT GOOD for your disease! It's understandable that you don't want your kids to see you cry, but you need to let it out! Your husband signed on for "in sickness and in health" and he should be your rock right now. Lean on him!

We all cry. I cried for three months straight when I was first diagnosed. It's normal to go thru these emotions.

I hope you can get some relief medically and emotionally. Better living thru chemicals, I say, and there's lots of stuff out there to help with depression and anxiety.

Good luck - hang in there and remember you are not alone!

- Amy

 

[Snoflayk505]

Hi, Ameslouise

You made my day when you replied haha thanks. I was actually sitting at the computer waiting to see if I got a reply lol. It feels good that all that stuff I got out was actually heard.

I live in New Mexico, I have to schedule a Capsule Endoscopy at the Phoenix Mayo Clinic once the referral get sent. My doc is afraid the pill will get stuck so I am going to do the Dummy pill and real one at the Mayo in case I need emergency surgery and to see if they have any new precedures that can help me. There really is not many options because it's just my own body healing and the scar tissue is causing the problems.

As for the medications I am actually the oposite hehe. i don't take anything unless i'm close to another ER visit because it hurts too much. My liver is not in very good condition so I stay away from any meds if possible. Also, my doc doesn't think I need to be on any Crohn's suppresent meds because he is hoping my Crohn's won't come back because it has always been only in my colon. Oh, but as for the Psych meds, I really don't think I need them. I have had alot of practice putting whats going on with me, physically or emtionally, on the back burner and I honestly think it's working well for me. I really am happy, but I do agree I needed to get it out. THe relief i felt in my heart once I posted this thread was amazing. It felt good to get it out

 

[Jer's Girl]

Snoflakyk- I know what you are going through to some degree. I had an ostomy last year after I was in so much pain I didn't really think I could go on. I only had mine for six months, but I might need one again in the future. I had a period of remission, but am not doing so great right now.

Don't think Amy mentioned this, but she has an ostomy too! I think hers has given her a lot of relief though. Maybe you just need some more time.

I also know what you mean about waiting by the computer! I always do that when I have posted something important on here. It just makes me feel good to know that someone cares and kind of understands.

Where are you in NM? I am in Albuquerque. I got all excited when I heard you were from here.

 

[hopeful]

Hi there,

been suffering from adhesions and blockages for years. Now on TPN - but life goes on.

You should try to find a surgeon specializing in dealing with adhesions. If the problem is adhesion related and not the Crohn's being active, then there specialized surgeons who are expert in performing adhensionlysis - and often they manage it laparoscopically.

Whatever it is, sounds like your current doc is not giving you all the options available?

Do your blood tests show any active inflammation?

Are you on elemental feed? I was on it for 10 years - not the greatest stuff

 

[Jer's Girl]

I am also 28, but I don't have any kids yet.

 

[Snoflayk505]

Hi Jer's girl!

Wow, that's crazy! I am in Albuquerque too I would love to meet someone else my age with an ostomy. I love my ostomy, it changed my life and gave me back quality of life that I haven't had in a long time. I DO NOT miss running to the bathroom 20 times a day and having the most painful experiences imaginable. I guess I trade one problem for another lol. I know my adhesions and obstructions were caused by my surgery but I wouldn't change any of them cuz they saved my life. my ostomy is permanent and glad for it lol. I made a really awesome ostomy cover I want to try and patten and sell. It makes life with an ostomy so much easier and comfortable. You can't even tell I have one
Anyways, I supposedly have one of the best GIs in Albuquerque, Dr. Ming. I can tell you I am not impressed though. I am not really impressed with any of the Docs lol because it seems like i'm constantly trying to convince everyone something is wrong but they seem to not understand why it's so hard to live with these symptoms and then don't find anything until surgery usually!

Hey, We should meet for .....uum water? lmao

 

[Snoflayk505]

Hi hopeful!

It's so nice to meet someone suffering from the same stuff as me. My Crohn's has not been active for 8 months now since my Ostomy surgery which i am so thankful for. About 2 weeks ago was when my body stopped allowing food anymore so i am not at feedings yet. I am as optomistic as possible but I know things are the way they are and there is not much i can do to change it. This whole situation is very new to me. My doc is always asking me what to do and doesn't really seem too, idk interested? That's why i'm going to the Mayo clinic. GI docs are scarce here in Albuquerque, NM so i'm omw to find other options. He sure did fill me in on the risks of everything going on though. Just not many treatment options. He's stumped just like every other doc I have seen on what to do. I just don't understand how I am such a rare situation? idk.

So what is elemental feeding? Is that an alternate to TPN? How long have you been on TPN for? Is it true that there is such a short mortality rate with it? I'm kind of at the edge of my seat that you have done the feeding for 10 years... Can you tell me more specifics if you don't mind? I am very interested and would rather hear from a real person than google! lol

 

[hopeful]

elemental is predigested food - i.e. a liquid made up from amino acids and maltodextrin. tastes dreadful, but its a way to live.

TPN - been on it for 2 months so far. But there are people out there who have been on it for 30+ years. As long as you maintain proper sterility and are under a good team, there shouldnt be a problem with it.

But you shouldnt really need it.

Why don't you look up Frank Lowen in Albuqurque? I once visited and tried to get to see him but was not successful. He is very busy. he is a PT who is expert in Visceral Manipulation - and these guys are experts at manual therapy for abdominal adhesions. You will find out within one treatment if it works for you.

 

[Snoflayk505]

Oh and the only thing really coming up on my bloodtests are my liver enzymes elevated but nobody knows why. The radiology doc I saw for my liquid barium test last week said I all these tests are exposing me to so much radiation i'm gonna get cancer. That is like verbatim to what he said. They are certainly honest with me that's for sure. The barium test just showed everything we already knew. It's blocked just not quite all the way yet.

 

[Snoflayk505]

Wow hopeful! You have made me soo.. hopeful lol. I'm so glad I posted this thread. I thought my life was a ticking time bomb from what they are telling me. I am looking up frank lowen right now. Thnks so so much!

 

[hopeful]

Here is his site http://lowensystems.com/ - let me know what happens - he is one of the best in the world in visceral manipulation - I just wish I would find a good practitioner near me - in the USA there are plenty but I am no longer in the USA.

 

[Keona]

lol..what is it with people on the forum craving cheeseburgers...LOL.... (Im one of them).

Hang in there Sno...there are a lot of people on here who have had a lot of their bowel removed leaving them with SBS. From what I hear, it is manageable and TPN isnt always the end result. My GI brought up the resection option and when he spoke about SBS, I checked out mentally. It is a scary thought (even my advocate was scared for me) but after reading some of the posts on here, it made me feel less freaked out. One day at a time is what I keep telling myself. The worst part for me is all the friggin' waiting.....

Hang in and I am glad you found the forum

 

[Snoflayk505]

I have to say I feel a little more comfortable sharing what's going on in detail now with my family now that I know there is a chance for me. From what iv'e been told and read I thought it was hopeless and there was only one outcome. The world is a little bit brighter today Thanks all.

 

[Jer's Girl]

I just sent you a private message. It would be great to talk to someone face to face about this stuff. Also, we share the same Dr!

Just curious, do you work? I work full time, but I find that missing work and work related issues are the hardest part of this disease for me.

 

[Keona]

How you doing today sno? :rosette1:

 

[Snoflayk505]

I'm doing great thanks! Much better now that I know when I lose the rest of my intestines I still have a chance to grow old with my husband and watch my babies grow up. It's a little easier to talk about it with my family now too. I am back to my normal self now and happy to have found another Crohnie in my same town, and this forum I The internet is awesome hehe.

 

[HeatherMN]

Tell that doctor to go take a leap! There is no "proven" link between radiation exposure and cancer, and tests that involve radiation that are medically necessary will do you much more good than harm in the long run... It's all about weighing the risks and benefits of radiation exposure, if the test is going to diagnose a problem and is not just being done for "fun" (like any of these tests are fun...) then the risk of the radiation exposure is worth it. If it is possible, see if they can use MRI for further testing, it has no radiation, but it is more expensive and insurance won't always pay for it.

(BTW, I work in radiology, I am an xray tech.)

Welcome to the forum too, it's a great place!!

 

[Snoflayk505]

That is crazy.... How is a DOCTOR even allowed to say something like that if it's not true. He is the same Doc that told me about the high fatality rate with having to live off TPN. He must have been having a bad day lol. He really scared the bejeebies out of me for weeks until I found you guys. Thanks HeatherMN! i will definitely be asking for MRIs from now on.