Wanted to Introduce myself.. new Crohnie.. surgery next month

I want to introduce myself.. I guess my case is somewhat unusual because I am in my mid 50's and have just been diagnosed with Crohn's a year ago. No one else in my family has ever had this disease. Aside from Crohn's I was also DX with Relapsing Polychondritis this past year (another nasty auto-immune disease) and a few years before that I was DX with Fibromyalgia, I am also hypothyroid. and I've been getting frequent Migraines since I was a kid. All that being said, I've been a lacto-vegetarian since I was 14 years old. The "guys" at Mount Sinai (my 2nd opinion GI) said that because of this strict diet I may have saved myself from an earlier onset and more severe case of Crohn's (their theory since it cannot be proven)

I have a 20 cm stricture in my TI with inflammation and stricturing in my Ileo-cecal Valve, and my Cecum has seen better days. I was admitted into the hospital from the ER after the double contrast cat scan came back with my ascending colon thickened.. at that time I had severe pain in what I thought was my right ovary and I was running a fever. After my colonoscopy they DX me with IBD (my colon had ulcers and they couldn't get into my Ileo-cecal Valve) they released me with a RX for Pentasa, Entocort, and Cipro after giving me IVs of Flagl and Cipro.. They also told me I could eat anything I could tolerate (HAHAHA) They had no idea at the time that I had this long stricture in me.. that wasn't discovered until a few weeks later during my small bowel series. So I went home at the time and ate what I usually eat (beans, rice, broccoli.. you get the picture) and was in dire pain again. After a month of a food diary I settled into a veggie low residue diet (kind of a joke since there were no veggies or fruit in it aside from apple sauce) and that helped me a lot. I also eat live culture yogurt everyday... I switch it up so I get different strains..

I'm one of those people that wants to see everything. I am always awake but sedated for my colonoscopies and other tests, and so I was amazed to see how narrow the inside of my small intestine TI was.. all my food was having to pass through a space the size of a kiddie juice straw. I had been to a GI just a few months prior to this hospitalization and DX who didn't find anything wrong with me other than some mild chronic gastritis (which I found weird as I didn't have heartburn or reflux and I've been eating spicy food all my life) but he didn't even see one polyp in me so I thought I was soooo lucky.. but this left me with no explanation for my severe abdominal pain. I went to so many doctors.. negative 3X for h.pylori.. my crp was climbing along with my sed rate but no answers.. and Eq with the rheumy tests

So now time has gone by, I know what I have now. I'm still on 4gms of Pentasa/day, and tons of other meds for other problems.. I was also on 9mg of Entocort for about 8 months (those Mount Sinai Docs told me to get off ASAP as I probably have just scar tissue at this point), and I've had to take Prednisone on and off for different reasons.. I've been researching this "DD" almost every day and I found this wonderful website HealingWell about a year ago and have been "lurking" at least a few times a week reading the threads that interest me and have grown fond of many of you. There is no one else in my life that has Crohn's (or any of the other diseases I "got" this past year) and if I do find someone that even knows what it is.. they only know that it causes people to be "inconvenienced" with diarrhea... not one of my problems so far. So few people, even the highly educated ones I know realize the full implications of Crohn's.. that it effects the whole body...eyes, bones, arthritis, not to mention the reactions to all the meds...

I've had a great GI since my hospitalization that has brainstormed with me about my options with meds and other things.. he also emails me back and calls back right away if I am having fever or problems. I also found a great surgeon that lectures around the world training other surgeons with new strictureplasty techniques. He said I have a "time bomb in me a few weeks ago and I know he's right. It's just a matter of time before something gets stuck or the lumen gets even tighter so I am having my first resection in May. It's going to start out laparoscopic and hopefully it will stay that way.. since I've never been opened before, they might find tons of other damage. I'm really worrying more about what my life is going to be like after the surgery.. the recovery.. the loss of the "check valve" etc etc... I've never had surgery before so I'm diving straight into the deep end.. all advice is welcome!!

I'm sorry for the long post but I wanted you all to have more of the facts because I know that all of you have had different versions of this disease as it presents itself so individually. Your "2 Cents" would be greatly appreciated.. there's so much I have left out.. like how could I forget to mention that my boyfriend has been there for me from day one and if it wasn't for him I would have never gone to the ER in the first place and I owe him my life in so many ways.. ok now I'm finished!

Nice to "meet" you but for the circumstances.  And good luck. 

When I find a couple of pennies I will give my 2 cents

Hi NYVeggie and welcome to Healingwell.  Sorry you have to be here though. 

Sounds like you have a good team of doctors.  I know the surgery is scary, but I think after the recovery you will feel so much better.  I have had two open resections and after the recovery, I felt way better.

Here's hoping your surgery leads to a long long remission.  Best tips for after surgery I can advise, is to walk as much as you can afterwards.  This will help to wake the bowel back up.  Also, expect some explosive diarrhea for a bit until your body adjusts to the changes.  Stay on top of the pain, because if you let it get out of control, its harder to quiet back down.  Bring your own pillow as the hospital ones are really flat.  Some like to bring things like Ipods and the like, but I for one was busy trying to heal and didn't want to think of things like that, but others like them.

Hugs

Gail*Nanners*

hello to you all, and thanks for your advice and stories..
I'm very interested in hearing more from other veggies..
My GI who has cared for me over a year knows the great lengths I've gone to not to wind up in the ER again. My diet is boring but I really don't mind eating cream of wheat cereal with honey everyday for breakfast if I can get through a day without the intense rolling pains that had nagged me for the past few years.. lots of white bread and nothing with skins and also nothing fresh has kept me ok till now... I'm a veggie but I haven't had a salad or even canned veggies because it's just not worth it ... Obviously, I am taking a lot of vitamins and I get a B12 shot once a month.. even so, I am anemic.

The Mount Sinai guys told me that because I was Dx at such a late date and my Crohn's was relatively mild (aside from the large stricture which they said was "classic") that I didn't need to go on any maintenance drugs if I decided to have the surgery, that many of their patients live on the SCD with the stricture.. You can imagine my horror to hear this highly acclaimed Doctor telling me that my surgery was elective and that just a diet would be ok.. needless to say I am not listening to this advice, as it also surprised my GI who has been pushing me toward surgery from day one and also talking about remicade etc.. When I finally chose a surgeon it wasn't with Mount Sinai here in NYC which is considered one of the best.. I decided to chose a surgeon based on their philosophy and track record so I also told this surgeon what my 2nd opinion told me, and I didn't even wait to hear his response.. I told him that I thought it was ridiculous not to be on at least Pentasa after the surgery because there are microscopic changes that can go unnoticed for years.. and things would just get so bad again.. he nodded... which is the best you can hope for with doctors as they don't like to contradict each other. I'm just glad that they have found me to be an interesting case and have decided to treat me...

thank you all for your advice with the painkillers... I probably would have been one of those trying to see how long I didn't have to take it but with so many of you saying take it before the pain hits I'm definitely taking your advice!!

I know I'm going to have a million more questions.. like what you found comfortable to wear after you were home etc etc
NY Veggie

I'll get around to listing all my meds and illnesses like most of you do when I get a chance.. thanks again!!

sudsmom
I think my GI pinches himself every week that I don't have to call him from an ER.. It's been since Jan 2010 when I was DX and since I saw for myself on the TV monitor how small the lumen was in my TI that I researched what to eat and not to eat.. I have Nanners on here to thank for all her comments about her diet and writing about the "labor pains" of a stricture etc...

about 4 years ago I went about 4 days and nights writhing in pain without a fever.. If I had had a fever I would have gone to the ER sooner.. Instead I sucked it up and hoped it would go away.. At the time I had no idea why this was happening to me but I 'knew' it couldn't be my appendix cause I would have had a fever.. well I was wrong on all counts (I found out later that you don't need to have a fever to have appendicitis) One of my doctors who was treating me for a broken toe at the time was convinced I had kidney stones so he wrote me a RX for hydrocodone.. I took 1/2 a pill and I was still suffering so I took some more and then it made me feel dizzy and sicker with the pain still there.. so finally I went to the ER.. and what do you think they did?? They gave me an IV of saline, some aspirin type drug that they injected into the IV, and a NO contrast cat scan.. also convinced that it was a kidney stone.. some time later.. after blood work and getting the CT results they said I didn't have a kidney stone and they sent me home with ultram. They said to follow up with my doctor.

So 3 years later.. and I'm back in the ER only this time even though I got there with 'only' 99 1/2F it finally climbed to 101 1/2 and the Dr on duty that night.. I swear he should be playing himself on House or something because he was so droll (but smart) ordered a double contrast CT and FINALLY they found something!!! I had fought with my boyfriend about going because I told him it was going to be another 16 or so hours and they were just going to send me home again but we still talk about it and he dragged me there tooth and nail and I'm so glad I started running a real fever or it might have ended the same way. First thing they did was put me on morphine and tell me I was going to be admitted.. You would think they told me I had won a free trip to Disney Land or something.. I was so happy.. even though he told me I probably had IBD.. at last there was a DX not just Drs looking at me like I was crazy. After reading some of the posts on here last week.. I think some other woman was mentioning that it felt like her ovary... as I had said to that first ER Dr who dismissed me.. and she was a WOMAN!! I told her at the time that it felt like my ovary had exploded... All I can say is that ER Drs need a lot more education about Crohn's and also what women's symptoms are.. as per a stricture in the TI.. Just like we are all finding out about heart attacks.. women feel pain differently and also have completely different symptoms

thank you so much for sharing your operations with me.. I wish you well with your upcoming operation.. please let me know how it goes!
and as far as the funhouse here..lol.. I've read some of the funniest comments from a few of its inhabitants.. at times they were the only thing that made me laugh
NY Veggie