Starting to Get quite annoyed.

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debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/6/2010 9:41 PM (GMT -7)   
I went to get my script last monday for my methotrexate, Zofran and Folic Acid.

I have it next to me and all ready to go.

The Fact that my G.I at Chicago doesn't seem to think it will work for me because of my current situation. Malnourishment, stricture etc.. I can't just START it.. I need to be monitored on it obviously. (I can always start it and go to my G.P for bloodwork).

I have an appointment march 31st with a NEW G.I here near my location. But the G.I in chicago is like top 5 in the nation but he jumps to surgery too fast. My G.P feels Its not worth it.

G.I: Feels because of malnourishment, stricture, narrowing, nutritional status etc...
Primary Care doc: doesn't think Surgery is necessary because i don't obstruct or vomit. she believes if im using the bathroom than what difference does it make if the narrowing is there or not. "its not an emergency".

all other therapies seem to fail but what are the odds MTX can work.. Probably good odds. Who KNOWS!.

Im getting Pissed off... because im getting the run around and I don't want to go untreated till march 31st.

Debating What I should do..

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/6/2010 9:42 PM (GMT -7)   
When the G.I In chicago... Was the 1 who wrote the script in the first place even though he felt it wont help.. Just cause more future issues without surgery.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3110
   Posted 3/7/2010 5:04 AM (GMT -7)   
I see my GI because of their experience/knowledge with this disease...and it sounds like that is why you went to 'one of the top 5 in the nation'...how much experience does your GP have(besides you)? My GP is good, but I know more about Crohn's that he does..Do you think the GI's reputation of 'jumping to surgery' is because by the time people get to them that's where there situation is already?

I have been in your situation both with and without vomiting and would never wait until I started vomiting AGAIN...and if you perforate, yikes, the choices are taken out of your hands.

I agree you shouldn't go untreated until March 31st...this is a tough decision for you...I hope you can find relief soon!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Zanne
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Date Joined Apr 2005
Total Posts : 3763
   Posted 3/7/2010 6:27 AM (GMT -7)   
Malnourishment, stricture, narrowing, nutritional status besides effecting your daily life, these things will have an effect on your recovery from surgery, if in fact that is the path you end up on. I agree that your GI might jump to surgery too quickly because if he is one of the top 5, patients have exhausted most of their options by the time they get to him. He didn't get to be one of the top 5 by being a quack. Knowledge and care of the intestinal track is the specialty of a GI, not a GP. I go to my GP to treat my everyday ailments and to coordinate care between my doctors, not to be the lead doctor when it comes to a very specific area of my body. That is what specialists are for.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/7/2010 6:34 AM (GMT -7)   
I understand, But the thing is, I have been this way my WHOLE life. Never an obstruction, never vomiting. ALWAYS skinny. The pain is the same it's been in 9 years. Sure its pretty darn hard to handle but i DOUBT soup or water would be effected by a stricture if i can take Fibercon supplments or even eat steak, and whatever I want. I understand im not the healthiest Crohnie.

But I feel that it's because I just dont seem to have found the drug of choice. Unfort. Tysabri and Methotrexate is all I have left.

I just feel that... Sure i dont want an emergency situation.. But with the current things.. I DID CONSIDER surgery... I honestly did. I told him to start the week of TPN and lets do it..

BUT, After talking with my dad, GP, etc... I feel that all this malnourishment is caused by active Chronic inflimation that i never really seem to get under control. It's ALways been like this. So its hard to take it out because what tells me i wont have the same problems.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/7/2010 7:22 AM (GMT -7)   
I say give the medication a try first. What can it hurt? Maybe it will make you feel better, and then whats the worst that can happen, you need surgery? You already said you may be heading that way, but why not try the meds to see if they do get you feeling better. JMHO

P.S.  I would like to add this is just my opinion, I am not a doctor.


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/7/2010 7:24 AM (GMT -7)   
Gail. THANKS!
Thats exactly my point. And I pretty much have to wait till march 31st now to see the New G.I.

Its like I saw Chicago March 1st. And they now say come for a follow up.. Ridiculous.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/7/2010 7:25 AM (GMT -7)   
I've had 3 resections. All about 2 years and 4 months apart. Granted at that time, the medication choices were a bit more limited, but the first one and the last one were because I had active chronic inflammation that was not responding to any medication. After each surgery, I felt so much better, but within a few months the disease came back. I believe that the surgeon in an effort to save as much bowel as possible, missed some active disease. My middle resection was due to scar tissue. Since my last resection in October 1998, I have been really good. My point is that sometimes this DD just isn't going to respond to any medication and surgery is the last resort, but it gives you your life back. I tried everything available including total bowel rest, nothing worked, the crohn's was just too stubborn and once it came out, I got my life back.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/7/2010 8:30 AM (GMT -7)   
People seem to make a big deal about taking methotrexate. Which it is not without risk, but it does have a long history (more then remi, humira, cimzia). But I think the question now becomes what do you feel is right? MTX can take 3 months to get to a "theraputic" level in your body. The reason why I put that in quotes is because it can take a long time to feel a difference, not always but it can. I know that MTX was the one thing that even remotedly worked for me, it took my stools from 30-40 a day down to about 10-15.
But everyone is different and you know what is best for you.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 3/7/2010 8:44 AM (GMT -7)   
Hey, its YOUR body, not theirs. Since I have a real aversion to surgery, subscribing to the theory what they take out they can't put back in, I'd say the two of us think quite a bit alike.

Personally, I'd go for BOTH the TPN "and" the methotrexate. I "did" TPN for 2 1/2 - 3 months to gain weight several years ago now. Worked great and was no real inconvenience.

I waited too long before agreeing to a resection - in a way - but it worked out just fine BECAUSE - I refusesd surgery locally when I obstructed (and possibly perforated - THEY said I perforated but they lied about other things too trying to get me to agree to surgery) so I was admitted, they didn't have TPN back then and I was just on IVs, fluids (NPO) and an NG tube pumping my gut out for 6 weeks. Then I flew to Mayo Clinic in MN and had an emergency resection the next day.

That worked out great. I was in much better shape nutritionally, and obviously if I HAD perforated as the locals said, THAT was cleared up and no infection and that Mayo resection was the easiest surgery and recovery PLUS I then enjoyed a 20 year remisson.

If I were you I definitely would do the TPN, and for more than just a week. I'd do the TPN until I got close to or at the ideal weight for my age and body structure. Even if it turns out that you need the resection you will be in so much better shape for the healing and recovery afterwards. The TPN sound to me like some of the best advice you've had! Go for it!
My computer says I need to upgrade my brain to be compatible with its new software.


penelope-marie
Regular Member


Date Joined Sep 2008
Total Posts : 54
   Posted 3/7/2010 9:31 AM (GMT -7)   
chronnie too i was so interested to hear your experience. I had the same thing where i felt the surgeons were telling me things that were untrue to get me to have surgery. i did feel that they were very keen on surgery and not taking time to consider other options. obviously thereare certain situations where there is no choice, but mine was not like that. Debilitated, have you considered enteral nutrition, ie you can drink it rather than have to have it intravenously, it has no fibre and will rest your bowel for a while, then you can start trying to introduce foods and find out what works. The good side is that its under your own control. Some doctors will prescribe it so you dont have to pay too much. I wish you the best
had crohns for 15 years took pentasa then nothing but diet but stricture appeared 3years ago and problems since. Had abscesses more than once
Taking VSL#3, glutamine, multivitamins, slippery elm food, aloe vera, vitamin d, grapefruit seed extract, no meds at present

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