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After surgery are other symptoms gone?

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Ulcerative Colitis
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Posted 1/12/2016 4:44 PM (GMT 0)
As we all know, Ulcerative Colitis doesn't just attack the colon. Often the secondary symptoms - joint pain, vision issues, etc...-are just as debilitating as the first. There are days where I would consider J pouch surgery if I thought that it would alleviate those issues as well. Since some say the immune system is, in part, located in the gut, does surgery make those problems go away? Or, are you then faced with no colon AND joint pain, eye issues, etc... Inquiring minds want to know.

My major symptoms have been somewhat under control for a few years, but the other issues can be a real bear. I might consider surgery if I thought I would feel better overall and the secondary symptoms would subside.

Thanks!
Matt
Posted 1/12/2016 4:52 PM (GMT 0)
i can't answer your j-pouch question - sorry -

but maybe share exactly what your current symptoms are and what are you using to treat them -

are you on any UC meds ?
Posted 1/12/2016 5:15 PM (GMT 0)
Matt,

What meds are you currently on? Sometimes the meds can be a cause of some of your listed problems, or at least partly contribute to them.

No one is going to guarantee you that the secondary symptoms will go away but for most people the joint pain does go away after the removal of the diseased colon; I'm not sure about the vision issues.

All of my UC symptoms were always contained to my colon so I never had the secondary symptoms except when I was on Predisone, so when I was no longer on Predisione they all went away.

I had surgery because my colon needed to go. I am in the minority who have chronic pouchitis, it's not a big deal and I am very happy with my j-pouch but I do get a bad hip pain when it is acting up.
Posted 1/12/2016 5:17 PM (GMT 0)
I think it depends. If the symptoms you describe are happening when you're flaring, then they might be gone after surgery. If the symptoms are there regardless of flaring, they will probably be there even if you had surgery. I had joint pain with flare ups in the past, but not every time. I didn't really have too many issues aside from the UC itself. I've always had fatigue but it hasn't resolved. I had that prior to UC. I do feel better now overall, perhaps a little less fatigued, but it's not like i am bouncing off the walls or anything.
Posted 1/12/2016 6:16 PM (GMT 0)
I've tried every major UC drug with very little success. From Asacol to Remicade, they either give me bad side effects or proved to be ineffective. I was on Prednisone for years and, while it reduced my inflammation, it was not a good thing for me overall. I would opt for surgery before going on a high dose of Pred again. Eventually, the UC put me in the hospital with the surgeons circling. I was talking with insurance to arrange everything when I read something on this forum about spinach and sunflower seeds. I thought it was crazy but I decided it couldn't hurt. I did some research and came up with my own smoothie recipe based on the spinach and some other natural anti-inflammatory ingredients. After a few weeks, I was back on my feet and I continued to improve. That was a few years ago. While I'm not 100%, most of the time I'm in pretty good shape. My doc, who is the head of the inflammatory bowel disease dept at a VERY prestigious hospital is at a loss when it comes to my "recovery." Even when I feel a "flare" coming on, it's nothing like it was, but I do start aching and my vision gets terrible due to inflammation. As "good" as it's been, I feel like at some point I will be headed for an operating table but if it means I will still deal with the secondary symptoms, I will hold out as long as I can as the primary symptoms are now minimal in my case. So to answer the question, I am not on any meds currently. For me, they did more harm than good.
Posted 1/12/2016 8:45 PM (GMT 0)
I guess it depends how much these issues are bothering you. I think a big part of my problem was anxiety. Even when I was in remission, I was worried about a flare up. The difference between me and you, is that none of the diets or alt meds worked for me. I was seeing long-term pred change in my body regardless of being on it, I just could not get rid of the weight I had gained... When 6mp failed for me, it was all downhill. I would take pred, feel okay, but hate the way I looked. Once I tapered off, I was back to square one. Even with biologics, no luck taming the beast. I think if I were in your shoes, I would try to stick it out - so long as your scopes show that you're not dealing with severe inflammation. Untreated long-term inflammation is going to take a toll and increase cancer risk so you would need frequent monitoring. Can you try drops for the eyes? How about uceris for flare ups and enemas for maintenance? Perhaps you could keep going like you are for a very long time. Entyvio is an option and I think a few new biologics will get approved soon. unfortunately, many of them are more of the same, none of which worked for me, so I knew surgery was for me. With my anxiety, I just couldn't feel comfortable doing anything with the unpredictability of UC. It wasn't just immediate either, I couldn't make plans for next year or for 5 years. I felt very limited.
Posted 1/12/2016 9:13 PM (GMT 0)
I never had any joint pain or secondary issues with my UC. I still don't after having J pouch surgery. The only thing I still battle with these days is iron deficiency. I have learned thru doing some research that it is common among J pouchers to have iron absorbtion issues. Why some do not I have no clue. My sister has a j pouch too for a long time now and her iron is fine. Everyone is different with how their UC symptoms manifest themselves J pouch or no j pouch. So if you're having secondary issues they still may be there after your colon is out. I have talked to people who said their other issues went away after surgery. It's very individual.
Posted 1/12/2016 10:03 PM (GMT 0)

notsosicklygirl said...
I guess it depends how much these issues are bothering you. I think a big part of my problem was anxiety. Even when I was in remission, I was worried about a flare up. The difference between me and you, is that none of the diets or alt meds worked for me. I was seeing long-term pred change in my body regardless of being on it, I just could not get rid of the weight I had gained... When 6mp failed for me, it was all downhill. I would take pred, feel okay, but hate the way I looked. Once I tapered off, I was back to square one. Even with biologics, no luck taming the beast. I think if I were in your shoes, I would try to stick it out - so long as your scopes show that you're not dealing with severe inflammation. Untreated long-term inflammation is going to take a toll and increase cancer risk so you would need frequent monitoring. Can you try drops for the eyes? How about uceris for flare ups and enemas for maintenance? Perhaps you could keep going like you are for a very long time. Entyvio is an option and I think a few new biologics will get approved soon. unfortunately, many of them are more of the same, none of which worked for me, so I knew surgery was for me. With my anxiety, I just couldn't feel comfortable doing anything with the unpredictability of UC. It wasn't just immediate either, I couldn't make plans for next year or for 5 years. I felt very limited.

I'm not too far off from you in that none of the meds worked for me except prednisone. And we agree about how evil that can be. The diets didn't work for me either so this smoothie thing has been a godsend but I'm always waiting for the other shoe to drop. I'm probably 80% of my former self on most days but when a flare is coming, I hurt all over and my vision gets blurry. I'm really not interested in getting back on any hardcore meds but have considered a trial they are doing here in town as there has been some success with crohns.
Posted 1/12/2016 10:54 PM (GMT 0)
"Even when I feel a "flare" coming on, it's nothing like it was, but I do start aching and my vision gets terrible due to inflammation. "


so do you take any action to deal with this or does it just go away on it's own ?
Posted 1/13/2016 12:07 AM (GMT 0)
At the time of my surgery, I had no extraintestinal manifestations of UC. Within a few years I developed them, both skin and joint, and it continues to this day, almost 20 years later. (I also contend with cuffitis and pouchitis.) My rheumatologist, GI and dermatologist were never surprised and said it's not uncommon. I've never for one moment regretted surgery, though, as the relentless disease activity in my colon destroyed my quality of life in a way the other manifestations don't.
Posted 1/13/2016 1:02 AM (GMT 0)

juststud said...
"Even when I feel a "flare" coming on, it's nothing like it was, but I do start aching and my vision gets terrible due to inflammation. "


so do you take any action to deal with this or does it just go away on it's own ?

I take tylenol and make sure that I don't miss a smoothie in the am. I also eat Sunflower butter every night especially if my gut becomes involved. So far, I've been able to overcome the flares I've had. My current situation is much better than when I was on Remicade, Humira, etc... I was literally ready for surgery on the heels of that.

So, yes, I usually power through.
Posted 1/13/2016 3:22 AM (GMT 0)
interesting fx -

care to share the exact recipe for your smagical smoothie ?
Posted 1/13/2016 5:06 AM (GMT 0)

juststud said...
interesting fx -

care to share the exact recipe for your smagical smoothie ?

Sure but as with any home remedy, your mileage may vary...

I use a vitamix with the largest container to make 3 smoothies at a time.

I use a large handful of Spinach
Mangosteen juice
Flax seed oil
Aloe Juice - inner fillet
Green powder (with probiotics)
L-Glutamine
Frozen pineapple
Frozen blueberries
Frozen strawberries
1 or 2 bananas
1 orange

I've also recently been trying some Nopal juice in the mix but I don't know if it's made a difference.

At night I eat dark chocolate 72% or darker and sunflower butter.

I know it all sounds crazy but it's worked for the last 4 or 5 years.
Posted 1/13/2016 12:47 PM (GMT 0)
I had ileostomy surgery 39 years ago. Today I have still have joint pains, arthritis and psoriasis (all auto-immune stuff).

Do I regret having surgery even though I still have the extra intestinal manifestations? Not a bit! UC urgency and pain and subsequent medications/hospitalisations/blood transfusions, etc are one less thing I have to worry about. Surgery made my life so much better, I'm so glad I have my ileostomy.
Posted 1/13/2016 3:22 PM (GMT 0)
I had psoriasis and thinning hair (likely due to Remicade and 6mp) before surgery. I'm about 7 weeks out from takedown and my skin is now clear without meds and my hair is thickening up.
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