Hello!

[Feather]

Hello!

So, I've posted a couple times, but it seems like this is the place where everyone introduces themselves, so here goes!

I'm 19, and I was diagnosed with Crohn's when I was 11. I have a pretty asymptomatic case, for better or for worse. I was put on prednisone upon diagnosis, and I had a pretty successful taper off of that, then switched to Asacol for maintenance. About 5 years later, my inflammatory markers (which had been gradually rising) were high enough to worry my doctor--and I had chronic unresponsive anemia--so I was scoped again, along with a barium upper GI series/small bowel follow through. The colonoscopy showed inflammation and ulceration in the terminal ileum, and the upper GI confirmed a very narrow stricture. I went on Entocort and Pentasa for a bit, and last year I started 6-MP because my sed rate (ESR) was still high.

Despite this stricture, though, I was mostly asymptomatic and continued life as usual--until this August, when I had a partial obstruction, requiring 6 days in the hospital. I was in an interesting situation, because the obstruction hit while I was visiting my grandparents in a different state. My doctors from home did their best to explain my history to the hospital where I was being treated, but there's only so much you can convey over the phone and through faxed charts, so that was a little frustrating. I managed to get back home, though, and after getting a second (well, fourth, if you consider actual number of doctors) opinion, we all decided that surgery was my best option. I had an ileocecal resection 4 weeks ago.

I'm a sophomore in college, and I had to fight really hard with the school administration to be allowed to come back for this semester. I ended up returning to campus just 1.5 weeks after surgery, missing 3 weeks of school, so it's been a big struggle to heal and catch up and manage everything for the past few weeks. But I think I'm finally turning the corner!

Regarding meds/supplements, I'm currently taking Asacol 2400mg, 6-MP 50mg, iron, multivitamin, Ensure, and I also just started taking a probiotic, VSL#3. I took it in powder-form when I was in elementary/middle school, but I just ordered it in capsules, which are much easier to take.

I've read lots of previous threads to answer most of my questions, but I was wondering, for those who've had surgery, how soon after surgery you were allowed/able to start doing things again--like running, etc. How long until your full energy level and strength returned? Also, my doctor mentioned that getting about 50% of your calories from a gastrostomy tube while asleep could be a very effective form of treatment. Has anyone had experience with this? I drink ~a cup of Ensure every day, but mostly just for the extra nutrition, not for any sort of enteral therapy.

Thanks, everyone!

 

[Philfun]

I was encouraged to get out & excercise asap after my CD surgery when I was 20 years old. Started running after about a month and started playing soccer again after two months. But this was 50 years ago and I don't know what the current medical thinking is on this. Bottom line: Do what your body tells you, just start slowly and work up as you feel you can.

 

[RFarmer]

Hi Feather, and welcome to the forum

I've no advice regarding your surgury, and I've never even heard of anyone doing a gastrostomic tube for enteral nutrition, but it certainly sounds intriguing. Let us know how things go

 

[xJillx]

Welcome Feather! Boy, you have had a tough year. But I am glad things are turning around for you. I just hope playing catch up with school doesn't cause you too much stress - stress can really do a number on us Crohnies!

Please keep us posted as to if you see an improvement with VSL#3. I had been interested in starting this product, and I'd be curious as to how you make out with it.

 

[Feather]

Philfun-- Great! I talked to my surgeon's nurse on the phone today, and she relayed to me that I no longer have any restrictions, and I can do anything as long as I'm able and comfortable doing it. My incision hasn't fully healed yet, though--was yours healed up completely when you started running again? I just don't want to mess anything up by doing too much too fast.

Ben-- Thanks! My GI said that they use the gastrostomy tube often in one clinic in Nova Scotia, but he hasn't seen it used widely anywhere else. I went to Crohn's camp in middle school, though, and I had several friends with gastrostomy tubes for extra nutrition. I'm going to wait and see how well the 6-MP works when it kicks in, but I'll definitely let you know if I get the g-tube.

Jill-- Thank you! I'm definitely trying not to be too stressed, but there's only so much one can do with all of this make-up material. I talked to my GI yesterday, and he said that new research has shown that VSL#3 may have negative impacts for Crohn's, though studies still show that it's good for UC. There haven't really been enough studies to really show much either way, but I'm going to stop taking it now.

My biggest instruction at the moment is to sleep! I've been trying to get 7-8 hours, though it's definitely hard in a dorm at college. But my GI stressed yesterday that getting 8+ hours is essential for recovery from surgery, in addition to just living as a Crohn's patient. Just a reminder to everyone (and myself) that sleeping is really important!

 

[Emily]

Hi and welcome to the forum
I'm so glad that your surgery was a success and that you are now at college!!
I think that college post-surgery is incomparable to if I would have tried it while I was flaring. Things are going really well, and while I am getting stressed and not sleeping enough right now, I can't imagine the situation if I was sick.

After my surgery, I took little walks around my neighborhood since I had ZERO energy from starving for the prep, then lying in a hospital bed without food for 11 days! But it was worth it, and I've come to terms with my incision scar...I was convinced that it would be huge and red and that my belly button was gone...but now its thin, pink, and I have a belly button again:lol:
Be careful and don't lift heavy stuff!

 

[Spooky1]

Hi, and welcome,

i had a naso gastric tube and total liquid diet around ten years ago, if you get pukey, or have a sore throat regularly then the tube is a bit of a nuisance. so, i was changed to gastrostomy. and i have had it for well over 7 years. yes, it helps somewhat. but the liquid foods are not quite the ultimate answer. i still have active crohns and my white cells are, more often than not, high. some fo the feeds are too oily, or fatty (ensure) and i can't break them down. but it also goes in phases, so its difficult. feeding over night i also do but too much just keeps me awake or i have vivid dreams. it also comes unattached and leaks all over the bed.

i would highly recommend you try every avenue before a gastrostomy. it means being attached to a pumping device every day for around 20 hours. very cumbersome. still have hidious pain in the strictured area and other parts. so its not a cure at all.

btw, a naso gastrict tube gets you some very weird looks and questions, frankly i always found it an embarrassment, but then so is the pumping device i have to take around with me. i try and go out without it, during my four hours off. its so heavy.

but good luck and i wish you a speedy recovery.

 

[Philfun]

Hi Feather,

Glad you are feeling better and are able to go out & run. No, my incision had not fully healed up when I started soccer training again... there were a couple of unhealed pieces of about a centimeter each that still had not 'fused' together. I kept gauze over them, keeping it in place with sticking plaster. They actually didn't completely heal for several months. Emily was spot on about not lifting anything heavy. Speedy recovery.

 

[Feather]

Emily-- Thanks! I took little walks around the neighborhood, too, which really helped. Right after my surgery in the hospital, the nurses always joked with me that I was training for a marathon when I took walks in the hallway, and cheered me on. It was a lot of work! So true about lifting--I never realized how many things use abdominal muscles.

Spooky-- Good to know about the g-tube. Do you also take maintenance meds?

Philfun-- I'm glad to hear that it takes awhile for the incision to heal. I haven't been back to my surgeon for a follow-up because I'm away at college, and it definitely hasn't healed yet, so I was a little concerned. Thanks!

 

[DustyKat]

Hi Feather and :welcome:

My son (18) had a resection in April and I saw the biggest change in him at the beginning of week 4 post op both physically and psychologically.

His surgeon suggested to him at the time that he could recommence soccer training and short distance driving at 3 weeks and commence playing soccer at 6 weeks.

Realistically he started back at school after 3 weeks but it was school break for the last 2 weeks of that time and I imagine he would have resumed earlier if not for that, light training and long distance driving at 5 weeks and didn't really hit the soccer field for 3 months.

He was doing school and university and he reduced his workload last semester when was ill and carried that lighter workload through this semester as well. So where he was doing his school subjects and 3 units at university he has pulled back to 1 unit at uni. I think this has also made a difference to recovery as the playing catch up was really something that affected him psychologically.

Matt has had no issues gaining weight post operatively and he has managed to gain back all his lost weight and more.

When you say your incision hasn't healed, what do mean and how far post op are you?

Dusty. xxx

 

[Feather]

Dusty--

Thanks for telling me Matt's story! That definitely helps me figure out where I am in the recovery process. I'm 5 weeks post-op, and I've been back at school for a little over 3 weeks (I'm also on a reduced workload, to make everything easier to manage).

My surgery was done laparoscopically, so I have a 4-5 cm incision and two 1-cm incisions. They were closed with dissolvable stitches on the inside and dermabond glue on the outside. The dermabond started peeling on the edges, but from what I can see, it looks like it's not completely closed up underneath. It's hard to tell, though, because the glue is still attached to the incision. How quickly did Matt's incision heal? I was finishing up a prednisone taper when I had my surgery, and my surgeon told me that might affect recovery, but he didn't say how long it would take for everything to heal up completely.

Good to hear about the weight, too. I've been drinking lots of Ensure and high-protein&calorie smoothies to try to regain the weight and strength that I lost before surgery, which is doing pretty well.

Thanks!!

 

[DustyKat]

Hey Feather,

All going well you should continue to power along from here on in. It will still take some time mind but you should just keep going into positive territory. I think the main thing is to listen to your body and go with what it is saying, don't push things. Matt is now 6 months post op now and I haven't seen him look so well in I don't know how long. Certainly from 3-4 months post op he has been able to achieve everything physically that he has wanted.

Matt had open surgery and wasn't on Pred, his incision was closed with a continuous suture and when the dressing was removed on day 7 post op it was obvious that it was closed and healing well, it has continued that way. He has never required any further dressings from when the original was taken down.

I'm not that familiar with the glue so are you supposed to just leave it or after this length of time can you pick it off?

If there is no redness and fresh discharge around the wound then it is most likely fine and you may be looking at old blood and discharge adhered to the glue which is normal in the first couple days post op. Or can you actually see the wound?

Matt went from 50kgs in December to 38 kgs on discharge from hospital in April. He is now back up to 52kgs.

Dusty. xxx

 

[David]

Hi Feather!

After reading through the thread, the only thing I can see not discussed is Vitamin B12 (my favorite thing to discuss ). Due to where your Crohn's was and the nature of your resection, I would strongly suggest discussing B12 supplementation with your doctor.

I wish you well

 

[Feather]

Dusty-- That's good news! I can definitely tell that I'm getting better, slowly but surely. My discharge instructions said to just let the glue fall off on its own, but I'm going to to my school's health center to have the doctor take a look at the incision, just to make sure it's healing up correctly. I can't actually see the wound, just the glue attached over top of it.

David-- Yes, that's a good idea. I've seen lots of discussion about B12 around here, and I made sure to ask my doctor about it after surgery. He said he's going to keep an eye on my bloodwork (I'm getting it done every other week for awhile) to make sure it's staying steady, and if it starts to get low, we'll talk about supplement options. Thanks!

 

[Tesscorm]

Hi Feather, Glad to hear that you are beginning to feel better! You've had lots of great advice re the surgery and recovery, but I thought I could just add some info re the NG tube (have no experience with a G tube).

My son, 17 years, uses the NG tube each evening. He was diagnosed in the spring and his initial treatment was six weeks of exclusive enteral nutrition through NG tube (exclusive meaning that he was allowed no other foods other than clear liquids). During the initial six weeks, he ingested 2000 ml of formula over 8-10 hours each night; he is currently on maintenance therapy which is 1000 ml, 5 nights per week plus all foods. He inserts the NG tube each evening and removes it in the morning and runs the formula for approx 4 hours (within a certain range, he is able to adjust the speed of the pump to work within his schedule). He is also able to choose which 2 nights out of the week he wants to be 'off' the tube, so just works it around his social schedule.

He had very few problems in learning to insert the tube, was comfortable with the process within just a few days and it only takes him a few seconds to insert it. So far, we've been lucky in not having had any leaks. The noise of the pump did annoy him at the beginning but, again, was something that he became accustomed too fairly quickly (week or two).

He did not have surgery so has not had to deal with such a big recovery, however, prior to being diagnosed he'd lost almost 20 lbs, since beginning his treatment, he has gained almost 30 lbs.

Good luck!! Hope you continue to feel better and better!