Can I Avoid Surgery?

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Myrne
Veteran Member


Date Joined Jun 2009
Total Posts : 585
   Posted 9/2/2017 3:07 PM (GMT -6)   
Hi Friends. I have had a horrible summer and am hoping there is some end in sight that does not involve surgery. In May I had an allergic reaction to Humira, went on prednisone for 2 months, and started Stellara at the end of June. I developed awful mouth ulcers when on the prednisone that went away by the end of July, but made it very difficult to eat and all in all I have lost close to 20 pounds since May (down to 105 lbs). All summer I have been expressing concerns to my GI about the mouth ulcers and weight loss and resulting symptoms such as fatigue, stomach pain, leg swelling, headaches, etc. He kept pushing an MRI and waiting to see if the Stellara kicks in. Fine, but I was so sick feeling at the time that I felt literally unable to complete the MRI due to the drinks. I was super nauseas and food/liquids were running right through me. I kept explaining this to him and he just kept pushing it. In the meantime he gave me some zofran and refused to prescribe any pain medications for fear they would make things worse. He also kept giving us the run-around regarding my weight - refusing to commit to a definite weight where TPN would be necessary and frequently referring back to the MRI, as if that would change any treatment route?

Eventually I had had enough and went to the ER. My husband called him (and had been on the phone with him almost daily) and told him we were going for pain relief and fluids. At first he was kind of just like, "OK, good luck" but did actually end up calling the ER doctor and suggesting I be admitted for fluids and pain relief. He was also very engaged the whole time I was in there, touching base with me and the hospital doctors (one being an on-call GI from his hospital) several times a day over the phone. Once in the hosptial I had a CT scan that showed significant inflammation in my colon and small bowel (the colon being new, I have never had Crohn's there before) and possible areas of stricturing or fistulae (apparently these things are hard to see) - pretty basic for me by the time I get sick enough to go to the hospital and get a scan. I spent a week in-patient on antibiotics, pain meds, and TPN. Was sent home on TPN Wednesday and my general practitioner prescribed me a Fentantly patch and oxycodone for pain relief (of which I will absolutely only take for one month, I do not want to be on opiates long term). My surgeon wants to avoid surgery and says I'm too sick to have it done either way.

I am so disheartened. I have been sick and basically bed-bound all summer. And while I do have the TPN and pain meds to make things a little more bearable now, it's much of the same with no real end in sight. Is it possible that the Stellara will kick in after 2 months? Are there many of you who have had to quit your job and radically change your lifestyle at my age (33)? I have a full time job in a career that took a lot of schooling for and I feel like it would be a HUGE adjustment to transition to a stay-at-home Mom with no work (besides, I have one son who is 6 and in school all day). Are many of you on long-term pain relief medications for Crohn's? My personal choice has always been to only use an needed when things get really bad, but lately 3-4 hours of pain relief from a percocet is not cutting it and feel like I need 3x what someone my size would need.

I also probably need to start looking for a new GI, which feels like a divorce for me. I have been with this GI since the beginning, but he is getting older and just doesn't seem as involved as he once was. I need a more aggressive doctor that takes things on as soon as new symptoms arise.

I'm sorry, this has turned into a vent, when really I was hoping to get some reassurance that I can be this sick right now and get better without any drastic interventions. I think I scare my family, they would prefer me to stay home and rest, quit my job, take any drugs that make me feel better, stop worrying . . . .

Thank you for any input.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1740
   Posted 9/2/2017 6:54 PM (GMT -6)   
I'm so sorry that you're going through such a tough time. I think even though you're not looking forward to changing GI's, it might be the best thing you could do right now. It seems you current treatment plan hasn't worked out too well. You absolutely must get the disease and the inflammation you have under control.

Stelera is getting very good reviews, but I'm really not familiar with the time line on therapeautic effectiveness. Have you ever been on Remicade? It seems you should also be using another immunosuppressant in combination therapy considering your symptoms.

I hope you start getting better soon, you may have to resort to another course of Prednisone until either the Stelera shows signs of working, or you get onto another anti-TNF.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9923
   Posted 9/3/2017 6:22 PM (GMT -6)   
Honestly? Neither your GI or surgeon seem to be on the ball here: seek a new GI and surgeon. Saying you're too sick for surgery sounds like a complete copout. Surgery is a bit riskier if you're underweight, but if you wind up needing emergency surgery then that's even riskier. Besides, you can always have a month or two of TPN first to put on weight for surgery, if need be. But find a new colorectal surgeon and discuss your surgical options. You should also have another scan, if the first one was that unclear.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 1001
   Posted 9/3/2017 11:41 PM (GMT -6)   
I agree with everyone. Get a new doctor or at least a second opinion! You should come out of appointments feeling like there is a plan or options ready if needed. Look for someone who is cautiously proactive.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 315
   Posted 9/4/2017 8:42 PM (GMT -6)   
I'm on Stelara and my IBD Specialist said a week ago that we should know within 12 weeks if it's going to work (it has helped immensely but I'm still bleeding and steroid-dependent, so doc is saying surgery if I cannot wean off prednisone).

I would agree that your GI and surgeon are not helping you the way they should--you can and should find someone who specializes in IBD (and knows current best practices).

As for pain, I hope you're seeing a pain management specialist and not just getting scripts from your GI--if not then ask for a referral to a pain management specialist, who may be able to give you more relief and keep you from killing yourself (being weak and underweight and taking even a *little* too much opiates can kill you).

I have been sick since January and was debilitated for several months. I have a toddler and I'm a stay-at-home-mom. I have student loans for a career that never manifested. Life happens. When you're chronically ill you have to make a lot of hard choices, accept limitations, and find a "new normal". Sorry things are so hard right now. Please use what little energy you have to focus on finding better doctors and getting the care you need.
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

Myrne
Veteran Member


Date Joined Jun 2009
Total Posts : 585
   Posted 9/5/2017 10:13 AM (GMT -6)   
Thanks for the input. You are all right, I do need a new GI. I will say though, my GI is specialized in Crohn's Disease and up to date on all the research - he's just in semi-retirement mode and rarely available when I need him and no longer seems willing to go above and beyond, like overseeing my TPN or directly admitting me to the hospital when needed. His communication skill have also decreased. I guess my main concern is how I am treated in the intermin, like we make a plan that involves changing meds and testing, but what do I do in the meantime when I am basically not functioning?

I was a little down when I posted and had a nice weekend and am feeling better mentally. I have had Crohn's for 12 years now and have been on almost every biologic and had major surgery 4 years ago, so it's not new to me. I have had allergic reactions to Remicade and Humira after years of both working fairly well for me. Also tried Cimzia for a year, but that didn't work as well. All 3 with and without 6MP at times. Prednisone is is really not an option - the last time I was on it it did nothing for the inflammation and caused excruciating joint and bone pain as soon as I weaned down below 20 mg. I guess I just thought I have already made so many accommodations for my illness, when will it let up?

I have 2 colo-rectal surgeons. One is very conservative and really advocates for surgery as the last option in Crohn's and one is in-between but amazingly involved in my Crohn's care as well. The second performed my resection and is currently overseeing me for my fistulae and setons. The first was who saw me in the hospital and I am seeing the other next week for the seton but will definitely get her input on the CT scan as well.

My GP is prescribing the pain meds. I actually asked her if she thought a referral to a pain management doctor was appropriate but she said she could just prescribe what I need and that she had other Crohn's patients in similar shape as me. SO far this is working and my plan is to only be on pain meds for the month of September as I personally want to avoid chronic use.
32 year old female with a husband and son.
Diagnosed with CD in January of 2005.
Resection 9/11/13
Back on Humira.
Past Meds: 6MP, Humira, Remicade, & Cimzia.
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